Today I met with Dr. Piyush Agarwal, NIH's chief urologist, and his nurse practitioner, Rebecca Dolan. THis was my first contact with NIH's urology department. It is an efficient and well-oiled team. I reviewed my case history with Ms. Dolan, who closely questioned my on when I started and stopped each blood thinner, and when my bleeding began. I had to refer back to my prior blog entries to confirm some of the dates. I also pointed out an odd little rash that recently had formed on my knees. I told her that I hadn't changed any soaps or lotions or detergents, and that the I noticed the rash a few weeks after I started taking the Xeralto. She allowed as that it was a possibility that the two might be connected, but doubted it. Keep an eye on it, she said. She was far more emphatic that there was a rather clear cause and effect between my taking the Xeralto and the gross hematuria.
When Dr. Agarwal joined us, he said that there was relatively little experience with Xarelto, metastatic cancer, and neobladders. Although he suspected that my gross hematuria was the likely result of the Xeralto loosening some tissue in my neobladder, he said that he wanted to rule out the possibility that my metastatic cancer had emerged in either my kidneys, ureters, or elsewhere in my urothelium. So next Monday I'll have a CT urogram to check and (most likely) rule that out. He also scheduled me for a cystogram for January 20. I'll be under general anesthesia for that, so in case he sees anything that needs to be cauterized, he can take care of it. He'll do that first thing in the morning. I was previously scheduled to have a CT that morning followed by a clinic visit with Dr. Apolo; we'll see if we can postpone that by a couple of hours so I can walk myself to the CT scanner.
Dr. Agarwal recommended that I resume taking the Xeralto, although I should stop it two days before coming in for the cystography. He said that having gross hematuria was better than having pulmonary embolisms. He said that it was a shame that I was allergic to the low molecular weight heparins, and mused that, if I was unable to continue on the Xeralto, I might have to consider an IVC filter. I'm not excited about that idea. It's an option to consider later, and only if I have to.
Tuesday, December 30, 2014
Friday, December 26, 2014
Mets Day 987: Merry Bloody Christmas
A couple of days ago Dr. Aragon-Ching suggested that I restart the Xarelto, which I did on Christmas Eve. Sure enough, on Christmas Day, I had blood in my urine. We've clearly established cause and effect. So it was a red Christmas after all.
I have an appointment at NIH's chief urologist next Tuesday afternoon. I assume that he'll do an cystoscopy and check the condition of my neobladder. I am to skip my Xarelto dose on Monday and Tuesday. Hopefully he'll be able to assess the condition of my neobladder, and how serious the lesions. It's unlikely that the bleeding is caused by cancer in the neobladder, but is instead just a side effect of the Xarelto. I suspect we'll consider alternative blood thinners.
Several people have shared with me their experience with warfarin. I understand that NIH is not a fan of using warfarin with patients with metastatic cancer, because it carries with it a significantly increased number of side effects and complications (some of which are summarized in this Medscape article). I'm not sure what the doctors will recommend, so I'll just wait and see.
I have an appointment at NIH's chief urologist next Tuesday afternoon. I assume that he'll do an cystoscopy and check the condition of my neobladder. I am to skip my Xarelto dose on Monday and Tuesday. Hopefully he'll be able to assess the condition of my neobladder, and how serious the lesions. It's unlikely that the bleeding is caused by cancer in the neobladder, but is instead just a side effect of the Xarelto. I suspect we'll consider alternative blood thinners.
Several people have shared with me their experience with warfarin. I understand that NIH is not a fan of using warfarin with patients with metastatic cancer, because it carries with it a significantly increased number of side effects and complications (some of which are summarized in this Medscape article). I'm not sure what the doctors will recommend, so I'll just wait and see.
Saturday, December 20, 2014
Mets Day 981: No Xeralto, no bleeding
Following my oncologist's advice, I stopped taking Xeralto on Tuesday. By Wednesday evening my urine was free of gross hematuria, and I've seen none since then. The question thus is whether it's more important that I stay on a blood thinner to prevent the recurrence of pulmonary embolisms, or stay off the thinner and prevent gross hematuria. I'm awaiting further input from my doctors.
Meanwhile, I still think it's a good idea for a urologist to do a cystoscopy into my neobladder and see whether there are any lesions, and generally assessing how it's doing. Johns Hopkins called me to say that they had managed to move up the cystoscopy with Dr. Bivalacqua by two weeks, to January 27. It's still a long time to wait. I also exchanged emails and phone calls with the patient care coordinator for Dr. Piyush Agarwal, the head bladder cancer urologist at NIH, and she is trying to schedule an appointment for me with Dr. Agarwal.
Meanwhile, I'm fighting a chest cold that I recently picked up, so I am less active than usual. Moss is growing on my north side. I have been drinking lots of fluids, although I made the mistake of taking a slug of blue Powerade Zero and immediately being transported back to my days of chemotherapy. That taste associate shall not be broken, it seems.
Meanwhile, I still think it's a good idea for a urologist to do a cystoscopy into my neobladder and see whether there are any lesions, and generally assessing how it's doing. Johns Hopkins called me to say that they had managed to move up the cystoscopy with Dr. Bivalacqua by two weeks, to January 27. It's still a long time to wait. I also exchanged emails and phone calls with the patient care coordinator for Dr. Piyush Agarwal, the head bladder cancer urologist at NIH, and she is trying to schedule an appointment for me with Dr. Agarwal.
Meanwhile, I'm fighting a chest cold that I recently picked up, so I am less active than usual. Moss is growing on my north side. I have been drinking lots of fluids, although I made the mistake of taking a slug of blue Powerade Zero and immediately being transported back to my days of chemotherapy. That taste associate shall not be broken, it seems.
Tuesday, December 16, 2014
Mets Day 978: Gross hematuria
For the past few days I've had gross hematuria - visible blood in my urine - every time that I have voided. It's usually bright red blood that accompanies the initial flow of urine and mucus that a neobladder generates. Yesterday I was also feeling like I had some cramps, and a little better understanding of how women periodically feel. I reached out to Dr. Trinity Bivalacqua at Johns Hopkins, who was the last doctor to do a cystoscopy on my neobladder, to request an appointment. After some checking, I was told that the next available appointment two months away. Wow. So I called Dr. Harold Frazier, who I had also seen in 2012, but was told by his scheduler that, without specific instructions from the doctor, I would have to have an office appointment before a cystoscopy.
So this morning I sent the following to my oncologist:
She replied in just an hour so so as follows:
So this morning I sent the following to my oncologist:
Dr. Aragon-Ching:
For the past several days, I have had gross hematuria nearly every time that I void. The blood is bright red and usually in the initial spurt of mucus from the neobladder. I have called Dr. Trinity Bivalacqua at Johns Hopkins, and have been told that he would like to do a cystoscopy, but according to his scheduler, his first available appointment is not until February 10. The scheduler is looking for an earlier time slot. In the meantime, I'd appreciate your thoughts.
1. Should I try to have Dr. Hal Frazier of GW MFA look at me? I called his scheduler but was told that she could not schedule a cystoscopy unless he had ordered it. I left a detailed message with his nurse, noting that you were my oncologist. If appropriate, would you please send him a note?
2. Should I continue with the Xeralto? Should I divide the pill in half and take each half 12 hours apart?
3. Is there anything else that I should be doing? I have been staying hydrated.
Thank you for your continuing care.
She replied in just an hour so so as follows:
Hi Mr. Brothers,Looks like it might be a red Christmas . . .
I think hold the Xarelto for now over the next couple of days to see if it eases up...I shall pass along your message to Dr. Frazier as well...Please do stay hydrated...
jba
Tuesday, November 18, 2014
Mets Day 950: Today's CT scan was equivocal
Today I had another scan at NIH. The scan was equivocal:
1. The "previously identified pulmonary emboi are less well seen or decreased/resolved since prior study 10/6/2014." Dr. Apolo and her fellow interpreted this to mean that the blood thinners have been working, that I should stay on the Xeralto, and that I should watch for more blood in my urine. The fellow noted that my labs were normal, and that there was no blood detected in my urine sample.
2. The radiologist who read the scan did not document my supraclavicular nodes, which no one could explain. Dr. Apolo personally looked at the images and measured the short axis of my largest node to be 1.42 cm -- less that 10% larger than the 1.3 cm in the last scan, and thus within the range of "stable", but larger nonetheless. But it's still not large enough to enter a clinical trial, so we'll continue to hang loose.
3. The radiologist noted "nonspecific sclerotic densities in the skeletal structures," and questioned whether that was a result of metastatic cancer. Dr. Apolo said that was normal arthritis, and to not worry about it. Most of my prior scans also have noted my changing bone densities.
4. The radiologist also noted "nonspecific hypodensity in the liver, unchanged. The focus is too small to characterize on CT." Prior scans have also suggested there could be small tumor nodes in my liver, but if they are there, it's not large enough to confirm. But tumors in the liver are the most likely place for mets BC to spread. My combined PET-MRI in September did not observe uptake in my liver, suggesting that there was no metastatic activity at that time. But still.
Dr. Apolo scheduled me for a follow up CT scan in two months. She specified that my neck be included next time, since several of my torso scans have managed to barely capture my supraclavicular nodes. I noted that I'd be visiting with Dr. Aragon-Ching next week, and Dr. Apolo said thatthe two of them would continue to consult on my case.
On balance, this scan is "same old, same old." Which just goes to show how inured I have become to the complex world of metastatic cancer. A scan like this probably would freak out someone who previously had a clean bill of health. To me, it's a shrug of the shoulders and on to Chipotle.
1. The "previously identified pulmonary emboi are less well seen or decreased/resolved since prior study 10/6/2014." Dr. Apolo and her fellow interpreted this to mean that the blood thinners have been working, that I should stay on the Xeralto, and that I should watch for more blood in my urine. The fellow noted that my labs were normal, and that there was no blood detected in my urine sample.
2. The radiologist who read the scan did not document my supraclavicular nodes, which no one could explain. Dr. Apolo personally looked at the images and measured the short axis of my largest node to be 1.42 cm -- less that 10% larger than the 1.3 cm in the last scan, and thus within the range of "stable", but larger nonetheless. But it's still not large enough to enter a clinical trial, so we'll continue to hang loose.
3. The radiologist noted "nonspecific sclerotic densities in the skeletal structures," and questioned whether that was a result of metastatic cancer. Dr. Apolo said that was normal arthritis, and to not worry about it. Most of my prior scans also have noted my changing bone densities.
4. The radiologist also noted "nonspecific hypodensity in the liver, unchanged. The focus is too small to characterize on CT." Prior scans have also suggested there could be small tumor nodes in my liver, but if they are there, it's not large enough to confirm. But tumors in the liver are the most likely place for mets BC to spread. My combined PET-MRI in September did not observe uptake in my liver, suggesting that there was no metastatic activity at that time. But still.
Dr. Apolo scheduled me for a follow up CT scan in two months. She specified that my neck be included next time, since several of my torso scans have managed to barely capture my supraclavicular nodes. I noted that I'd be visiting with Dr. Aragon-Ching next week, and Dr. Apolo said thatthe two of them would continue to consult on my case.
On balance, this scan is "same old, same old." Which just goes to show how inured I have become to the complex world of metastatic cancer. A scan like this probably would freak out someone who previously had a clean bill of health. To me, it's a shrug of the shoulders and on to Chipotle.
Friday, November 14, 2014
Mets Day 946: Blood in my urine again?!
Almost exactly three years ago - November 12, 2011 - I had blood and bloody mucus in my urine. That started my one-way trip down the rabbit hole of bladder cancer. Since then, I've had eight surgeries, two rounds of chemotherapy, 17 CT/PET scans, two organs removed, ongoing nocturnal incontinence, retired from my legal practice, been classified as totally disabled, and developed a greater spiritual understanding of life and death.
Last night, I saw another bloody chunk issue with my urine. I was surprised at how fast I was spun back to November 12, 2011. This roller coaster just doesn't stop, I thought. At 8:40 pm I emailed doctors Apolo and Aragon-Ching:
Last night, I saw another bloody chunk issue with my urine. I was surprised at how fast I was spun back to November 12, 2011. This roller coaster just doesn't stop, I thought. At 8:40 pm I emailed doctors Apolo and Aragon-Ching:
This evening I had some bright red bloody mucus in my urine. I don't know if it is related to my switch to Xarelto, or something else related to my neobladder, or perhaps my kidneys, or nothing to worry about. I have a CT scan and clinic appointment with Dr. Apolo on Tuesday, November 18. Please advise whether I should do anything prior to then. Thank you for your ongoing care.At 10:06 pm, Dr. Apolo responded:
Likely due to Xarelto. Please monitor the blood in your urine over the next 24-48hrs, if it worsens or does not improve you will need to be assessed. Gloria will call you tomorrow morning to follow-up.At 6:36 am this morning, Dr. Aragon-Ching added:
I agree with Dr. Apolo...most likely from Xarelto, but also ensure adequate hydration...who has been the Urologist you've been seeing mostly? is it Dr. Schoenberg or Dr. Frazier? we may have to re-connect with them if the bleeding doesn't ease up ....and see what the scan showsWow. I'm glad that my doctors are as conscientious as they are, responding to emails late at night or before dawn. I replied to both at 8:14 am:
Thank to both of you for your quick response. So far I've seen no additional blood. I'll let Gloria know if I see more, otherwise I'll plan on seeing Dr. Apolo on Tuesday. I have not seen a urologist since early 2013 (it was Dr. Michael Phillips, one of Dr. Frazier's colleagues who specialized in incontinence, who helped me with the imipramine). I understand that Mark Schoenberg left Hopkins earlier this year to become chief of urology at Einstein/Montefiore. I'm ok with going back to Dr. Fraizer if needed, or I could reach out to Dr. Trinity Bivalaqua at Hopkins, who repaired a stricture in my neobladder in September 2012.Plus ca change, plus c'est la meme chose.
Monday, November 10, 2014
Mets Day 942: I'm also allegic to fondaparinux
Friday night in injected myself with the fondaparinux (Arixtra) provided to me by NIH. Saturday morning I woke up with an impressive rash around my injection site, on the right side of my abdomen. My preexisting rash that had been triggered by the Lovenox was on the left side. I continued with the injections on Saturday and Sunday, watching as my rash spread each day. Sleep was difficult as it itched constantly. It was also painful as I rolled over in bed.
This morning I called the NIH clinic and let them know what was going on. After several calls and consultations with Dr. Apolo's staff, I was told that I should switch over to Xarelto (rivaroxaban); however, NIH did not have that drug in their fomulary. Dr. Apolo sent an email to Dr. Aragon-Ching, who quickly called in a prescription for me. Looks like I'll be able to say goodbye to the injections, bruising, and rashes. Boo hoo.
These are the first two drugs that I've had a reaction to. Strange. I'm glad there is an alternative. Yet, in the past month, I've noticed a number of commercials by plaintiffs' lawyers for clients who have taken Xarelto and had unexpected bleeding. As a lawyer, I am no fan of class actions -- I've heard a number of class action attorneys say it's the best type of legal practice, "because there are no clients you have to answer to" -- but I nevertheless will be aware of excess bleeding. If nothing else, it gives me an excuse to not shave.
This morning I called the NIH clinic and let them know what was going on. After several calls and consultations with Dr. Apolo's staff, I was told that I should switch over to Xarelto (rivaroxaban); however, NIH did not have that drug in their fomulary. Dr. Apolo sent an email to Dr. Aragon-Ching, who quickly called in a prescription for me. Looks like I'll be able to say goodbye to the injections, bruising, and rashes. Boo hoo.
These are the first two drugs that I've had a reaction to. Strange. I'm glad there is an alternative. Yet, in the past month, I've noticed a number of commercials by plaintiffs' lawyers for clients who have taken Xarelto and had unexpected bleeding. As a lawyer, I am no fan of class actions -- I've heard a number of class action attorneys say it's the best type of legal practice, "because there are no clients you have to answer to" -- but I nevertheless will be aware of excess bleeding. If nothing else, it gives me an excuse to not shave.
Friday, November 7, 2014
Mets Day 939: Apparently I'm allegic to Lovenox
For the past month I've been injecting myself twice daily with enoxaparin (Lovenox) - mornings on the left side of my abdomen, evenings on the right. I've built up an impressive collection of track marks and bruises from the injections. About a week ago, I noticed a small rash on the left side of my abdomen. I assumed that it would go away, but it gradually has increased in size. Today I sent an email to Dr. Apolo describing the rash, and enclosing a picture. Less than an hour later, one of the physician's assistants from NIH called me and asked me to come in immediately. Alrighty then.
The NIH oncology clinic was empty when I arrived -- all the patients had already gone home, and the staff was wrapping up for the week. I sat down with the PA and a pharmacist, who puzzled through the various possible causes of my rash. After ruling out poison ivy, or a new laundry detergent, or an insect bite, or whatever else they could think of, they concluded that my rash probably was being caused by the Lovenox. According to the pharmacist, a delayed reaction to enoxaparin is "not unknown in the literature," although she'd never personally seen one. Lucky me: another one off case.
We discussed alternative blood thinners, including wayfarin and Xaralto. The pharmacist said that wayfarin had too many downsides. She also said that NIH did not think that Xaralto had been sufficiently tested in patients with metastatic cancer, although she allowed that it soon might be. She decided to change my blood thinner to fondaparinux (Arixtra), and I was provided with two weeks worth of syringes. One upside of fondaparinux is that I only have to inject it once a day.
I'm supposed to closely monitor my rash to see if it goes away. I have my next scan scheduled for November 18, and I'll see Dr. Apolo the same day, so we'll revisit what blood thinner I should stay on at that time. Oh, and we'll also find out whether or not my cancer is growing. No big deal (hopefully).
The NIH oncology clinic was empty when I arrived -- all the patients had already gone home, and the staff was wrapping up for the week. I sat down with the PA and a pharmacist, who puzzled through the various possible causes of my rash. After ruling out poison ivy, or a new laundry detergent, or an insect bite, or whatever else they could think of, they concluded that my rash probably was being caused by the Lovenox. According to the pharmacist, a delayed reaction to enoxaparin is "not unknown in the literature," although she'd never personally seen one. Lucky me: another one off case.
We discussed alternative blood thinners, including wayfarin and Xaralto. The pharmacist said that wayfarin had too many downsides. She also said that NIH did not think that Xaralto had been sufficiently tested in patients with metastatic cancer, although she allowed that it soon might be. She decided to change my blood thinner to fondaparinux (Arixtra), and I was provided with two weeks worth of syringes. One upside of fondaparinux is that I only have to inject it once a day.
I'm supposed to closely monitor my rash to see if it goes away. I have my next scan scheduled for November 18, and I'll see Dr. Apolo the same day, so we'll revisit what blood thinner I should stay on at that time. Oh, and we'll also find out whether or not my cancer is growing. No big deal (hopefully).
Tuesday, October 14, 2014
Mets Day 916: Back to NIH
Today I had a follow-up appointment with Dr. Apolo and a half-dozen others. Apparently my reputation precedes me: as I was giving my history to the fellow who was doing the workup, he mentioned that he was aware of my blog. Maybe it was in my chart, or maybe they've been told to be careful what they say, because it might be published online. The fellow carefully questioned me about my emotional state, trying to find out if I was depressed or sad or angry. He said that 80% of mets cancer patients displayed symptoms of depression. He didn't believe me when I said I wasn't depressed, which made me sad.
Eventually he left and came back with Dr. Apolo and her supporting cast, which included two other NIH doctors, the fellow, a medical student, and a doctor from the FDA who was reviewing proposed clinical trials for mets bladder cancer. Dr. Apolo said that my labs looked fine, and the Lovenox levels were good. She strongly encouraged me to stay on Lovenox for 3-6 months, noting that I had quite a few clots and a rather large and long clot in my hepatic portal vein. We agreed that I'd continue with the twice daily injections until at least Nov. 18, when I am scheduled to have another CT scan, and we'd see how things look then. She had the fellow order me another 21 days worth of Lovenox, which would give me a total of 7 weeks. After admiring my massively bruised love handles, she said that I could also inject the front of my belly (something the NIH nurse said last week that I shouldn't do), and could also give injections into my thighs and arms if I wanted. She also said to avoid contact sports, so I guess that rules out the annual Turkey Bowl football game.
Dr. Apolo said that she had carefully measured my nodes, compared them with the prior scans, and had concluded that me nodes were neither growing nor shrinking, but were stable in size. She also said that the two largest nodes were adjacent to each other, but were sufficiently distinct so that she could not combine them for purposes of clinical trial eligibility. She drew a picture of the two nodes, and explained that they were arranged like a comma, one above and slightly offset from the other. She also said that the scan had picked up a number of other lymph nodes around my left clavicle and upper torso, but none were enlarged enough to be of any clinical significance.
Thus puts me back into the same situation I've been in since I ended my chemotherapy: watchful waiting. We all agreed that the best case scenario would be that my nodes never increased in size enough to pass the threshold for entry into a clinical trial, but if and when that happened, we'd deal with it at that time.
Speaking of clinical trials, I told the FDA doctor that I'd really like to see a new drug approved for use on metastatic bladder cancer, since it had been more than 20 years since the last drug had been approved. He was well aware of that fact, and said that the FDA was fast-tracking investigations into the PD1 and PD-L1 drugs. Dr. Apolo seemed to appreciate my blatant lobbying, but then again, I have a vested interest.
Eventually he left and came back with Dr. Apolo and her supporting cast, which included two other NIH doctors, the fellow, a medical student, and a doctor from the FDA who was reviewing proposed clinical trials for mets bladder cancer. Dr. Apolo said that my labs looked fine, and the Lovenox levels were good. She strongly encouraged me to stay on Lovenox for 3-6 months, noting that I had quite a few clots and a rather large and long clot in my hepatic portal vein. We agreed that I'd continue with the twice daily injections until at least Nov. 18, when I am scheduled to have another CT scan, and we'd see how things look then. She had the fellow order me another 21 days worth of Lovenox, which would give me a total of 7 weeks. After admiring my massively bruised love handles, she said that I could also inject the front of my belly (something the NIH nurse said last week that I shouldn't do), and could also give injections into my thighs and arms if I wanted. She also said to avoid contact sports, so I guess that rules out the annual Turkey Bowl football game.
Dr. Apolo said that she had carefully measured my nodes, compared them with the prior scans, and had concluded that me nodes were neither growing nor shrinking, but were stable in size. She also said that the two largest nodes were adjacent to each other, but were sufficiently distinct so that she could not combine them for purposes of clinical trial eligibility. She drew a picture of the two nodes, and explained that they were arranged like a comma, one above and slightly offset from the other. She also said that the scan had picked up a number of other lymph nodes around my left clavicle and upper torso, but none were enlarged enough to be of any clinical significance.
Thus puts me back into the same situation I've been in since I ended my chemotherapy: watchful waiting. We all agreed that the best case scenario would be that my nodes never increased in size enough to pass the threshold for entry into a clinical trial, but if and when that happened, we'd deal with it at that time.
Speaking of clinical trials, I told the FDA doctor that I'd really like to see a new drug approved for use on metastatic bladder cancer, since it had been more than 20 years since the last drug had been approved. He was well aware of that fact, and said that the FDA was fast-tracking investigations into the PD1 and PD-L1 drugs. Dr. Apolo seemed to appreciate my blatant lobbying, but then again, I have a vested interest.
Monday, October 13, 2014
Mets Day 915: Consultation with my clinical oncologist
Today I met with my clinical oncologist, Dr. Aragon-Ching of GW's Medical Faculty Associates. She and I had traded emails and spoken by phone last week. The purpose of today's meeting was to further discuss whether I should stay on Lovenox long-term, or eventually switch over to an oral anticoagulant. I also wanted to get her thoughts on my clinical trial options.
Prior to my meeting with her, I did some research on whether Lovenox can help suppress growth of my cancer. Along the way, I got an education on the use of low molecular weight heparins (LMWHs) to combat venous thromboembolism (VTE). VTE includes deep vein thrombosis (DVT) and pulmonary embolism (PE). Patients with cancer -- especially metastatic cancer, and who have had chemotherapy -- are at increased risk for VTE. A good overview of VTE, and the emerging use of oral anticoagulants, is available here.
The question I was looking into is whether LMWHs such as Lovenox can help inhibit the growth of my metastatic bladder cancer. Lovenox is an injected form of LMWH, with the generic name of enoxaparin sodium. I'm currently injecting myself with 120 mg of Lovenox twice a day. If there is evidence that enoxaparin can help slow the spread of my cancer, then I'm willing to continue with the shots. If not, I'd prefer switching to rivaroxaban (Xaralto).
In the 2009 book, Coagulation and Cancer, by G.F. Pineo and R.D. Hall, the authors write, "Some LMWH compounds were effective in the suppression of tumor cell growth, metastases (nandroparin, tinzaparin, enoxoparin), and antiogenesis (tinzaparin, dalteparin, and enoxoparin), whereas fondaparinux (as selective factor Xa inhibitor) was not." Id. at 266, endnotes omitted. Elsewhere in the chapter, the authors cite other studies that support the idea that LMWHs may inhibit tumor growth. Id. at 261. The authors conclude:
Duly prepared, I met with Dr. Aragon-Ching. She said that the evidence that Lovenox can inhibit metastatic activity is very limited. She said that she would not give much weight to that possibility in making the decision of whether to continue using Lovenox, or switching to Xaralto. She acknowledged that Xaralto was a relatively new drug for DVT and PE, but was satisfied that Xaralto was as effective as Lovenox. She said that NIH would recommend that I stay on Lovenox, because they do clinical trials for a living, and Lovenox is well-known for its lack of interactions with most drugs. Because Xaralto is a newer drug, there is not as much evidence about its lack of interactions, although she said that it should be as safe and effective as Lovenox. She recommended that I have the Lovenox injections for 4 weeks, then switch over to Xaralto, unless I was to enter a clinical trial. She added that, if I went on Xaralto and then later entered a clinical trial, I could switch back to Lovenox with no problems.
Dr. Aragon-Ching also said that I should not go on coumadin. It doesn't work as well, has too many side effects, and is too diet-dependent. It's simply an older drug that has been superseded by newer drugs.
Prior to my meeting with her, I did some research on whether Lovenox can help suppress growth of my cancer. Along the way, I got an education on the use of low molecular weight heparins (LMWHs) to combat venous thromboembolism (VTE). VTE includes deep vein thrombosis (DVT) and pulmonary embolism (PE). Patients with cancer -- especially metastatic cancer, and who have had chemotherapy -- are at increased risk for VTE. A good overview of VTE, and the emerging use of oral anticoagulants, is available here.
The question I was looking into is whether LMWHs such as Lovenox can help inhibit the growth of my metastatic bladder cancer. Lovenox is an injected form of LMWH, with the generic name of enoxaparin sodium. I'm currently injecting myself with 120 mg of Lovenox twice a day. If there is evidence that enoxaparin can help slow the spread of my cancer, then I'm willing to continue with the shots. If not, I'd prefer switching to rivaroxaban (Xaralto).
In the 2009 book, Coagulation and Cancer, by G.F. Pineo and R.D. Hall, the authors write, "Some LMWH compounds were effective in the suppression of tumor cell growth, metastases (nandroparin, tinzaparin, enoxoparin), and antiogenesis (tinzaparin, dalteparin, and enoxoparin), whereas fondaparinux (as selective factor Xa inhibitor) was not." Id. at 266, endnotes omitted. Elsewhere in the chapter, the authors cite other studies that support the idea that LMWHs may inhibit tumor growth. Id. at 261. The authors conclude:
Over the years it has become increasingly evident that the thrombotic process plays a vital role in cancer cell development, proliferation, migration and metastasis leading to the hope that suppression of the coagulation cascade could have a beneficial effect on the cancer. Data from clinical trials initially aimed at the treatment of venous thromboembolism in cancer patients and later directly in cancer patients who did not have thrombosis provided evidence that LMWH could improve survival in the patients who had a wide variety of primary tumor sites . . . .Id. at 270. Unfortunately, the excepts of the book that I was able to pull up on Google books omitted the pages with the critical endnotes, so I could not readily locate the studies cited for those propositions.
Duly prepared, I met with Dr. Aragon-Ching. She said that the evidence that Lovenox can inhibit metastatic activity is very limited. She said that she would not give much weight to that possibility in making the decision of whether to continue using Lovenox, or switching to Xaralto. She acknowledged that Xaralto was a relatively new drug for DVT and PE, but was satisfied that Xaralto was as effective as Lovenox. She said that NIH would recommend that I stay on Lovenox, because they do clinical trials for a living, and Lovenox is well-known for its lack of interactions with most drugs. Because Xaralto is a newer drug, there is not as much evidence about its lack of interactions, although she said that it should be as safe and effective as Lovenox. She recommended that I have the Lovenox injections for 4 weeks, then switch over to Xaralto, unless I was to enter a clinical trial. She added that, if I went on Xaralto and then later entered a clinical trial, I could switch back to Lovenox with no problems.
Dr. Aragon-Ching also said that I should not go on coumadin. It doesn't work as well, has too many side effects, and is too diet-dependent. It's simply an older drug that has been superseded by newer drugs.
On the subject of clinical trials, Dr. Aragon-Ching said that the key issue was whether my nodes were large enough to meet the clinical trial threshold. I learned that the standards for lymph node sizes in clinical trials are set forth in
a document called "Response Evaluation Criteria in Solid Tumors" (RECIST). The 2009 version of the RECIST standards -- version 1.1 -- requires that lymph nodes be at least 15 mm on their short axis before they can be considered a "target lesion" for purposes of a clinical trial. As stated in an article summarizing the new guidelines:
Lymph nodes with a short axis of ≥15 mm are considered measurable and assessable as target lesions, and the short-axis measurement should be included in the sum of target lesion measurements in the calculation of tumor response as opposed to the longest axis used for measurements of other target lesions. Lymph nodes with a short axis of < 10 mm are defined as “nonpathologic” (Fig. 8A). All other pathologic nodes—that is, those with a short axis of ≥10 mm but <15 mm—should be considered nontarget lesions.
Since all US clinical trials follow the RECIST 1.1 guidelines, until my nodes are of sufficient size, I'm not eligible. Which is fine: I'd much rather have my nodes stay small and not enter a trial, than have them growing and then enter a trial.
Nevertheless, as Dr. Aragon-Ching and I discussed, it's highly likely that my cancer is going to progress. If and when that happens, then she recommended that I enter an immunotherapy clinical trial relating to PD-L1. She didn't think it mattered which PD-L1 trial it was -- either the Hoffman-LaRoche MPDL-3280A trial, or the soon-to-open NIH study which I'll learn more about tomorrow when I meet with Dr. Apolo.
Wednesday, October 8, 2014
Mets Day 910: Discharge and game plan
This morning I had a V/Q study, which is a type of lung ventilation/perfusion scan, to measure my lung capacity. It showed that I was at about 70% of expected perfusion capacity, which confirms that my PE is impacting the ability of my lungs to oxygenate my blood. After I'm on the blood thinner medication for 6-8 weeks, I'll have a follow-up V/Q scan to make sure that the issues relating to my PE have been addressed.
I then was instructed on how to inject myself with Lovenox. Last night, Jennifer received instruction and successfully injected me. This morning I successfully showed that I could shoot myself, so to speak. I was told that I would be discharged later today with 56 syringes, sufficient for four weeks of twice daily injections. I'll be reassessed at that time to determine wither I can drop to a once daily injection. Perhaps eventually I might be able to switch to an oral blood thinner, such as rivaroxaban (Xarelto), although I was warned that Xarelto has only been recently approved for DVT and PE, and there is limited data on using it with mets cancer patients. In addition, Xarelto has not been as well-studied for drug interactions, so if I ever enter a clinical trial and was on Xeralto, I'd probably have to go back onto Lovenox. Plus, if ever I was badly bleeding and needed to reverse the effects of the blood thinner I was taking, Lovenox can be reversed, while Xeralto cannot, and would have to metabolize out. The question is, how much of a pain it be to inject myself daily or twice daily, both in terms of the hassle of doing it, and the ongoing bruising and tenderness in the injection sites, versus the possible risks from Xeralto? Eh, I'll cross that bridge later.
I also had a consult with NIH's hematology department - the fellow showed up 90 minutes after the scheduled time, and the attending doctor wandered by a half hours thereafter. Oh that I could bill doctors my regular lawyer billing rate for all the time that I've spent waiting for doctors. Anyway, I was questioned in depth by the fellow on possible symptoms, causes, and family history of DVT and PE. Aside from my brother having had DVT and PE last year for unexplained reasons, there is no immediate family history to my knowledge. Hematology will have my blood run through various tests and possibly a broader genetic sequencing for further insight, but the fellow guessed that my PE is a simple case of metastatic cancer and chemo causing my blood to turn into sludge. Interestingly, the attending said that there was limited evidence suggesting the Lovenox might inhibit the growth of certain types of malignancies, so he suggested that I stay on that instead of shifting to Xeralto. Note to self: do some follow-up research on that.
I also met again with Drs. Wood and Apolo. They are going to coordinate my follow-up care with Dr. Aragon-Ching, who will see me next Monday. I will come back to visit with Dr. Apolo next Tuesday, to further explore whether any clinical trials are currently available to me, and if so, whether now is an appropriate time to do one. Dr. Apolo said that, although my supraclavicular nodes are not increasing in size, Monday's CT scan was able to detect that I have a cluster of supraclavicular nodes that are larger than normal: two are about 1 cm across on the short axis, and others are smaller than 1 cm, but still larger normal. Dr. Wood compared those nodes to a cluster of Hershey's kisses that have started to melt. They were still distinct, but the borders were beginning to become less distinct. While Dr. Wood's HER2 clinical trial required a single tumor at least 2 cm in size, Dr. Apolo said that, for the PD-L1 trials that she had in mind, it might be possible to consider the aggregate of those cluster of nodes to meet the minimum size. She said that later today she was going to sit down with the radiologist who initially read Monday's CT scan, and do a closer evaluation of my CT scan. We'll discuss next week her thoughts on possible clinical trials.
I'm not of the mind that I should jump into any clinical trial that might be open to me. For example, Dr. Wood's Phase 1 HER2 study seems too unproven for me at this point. If I had advanced tumors in my liver or lungs, and there were no other therapies available to me, then I might consider it. But I currently have a relatively light metastatic cancer burden, and know that, in all likelihood, my cancer is likely to progress in time. Each treatment is like a single bullet: I'll likely be able to use each therapy only once. There is no expectation that any therapy will cure me, since there is no known cure for metastatic bladder cancer, and none on the immediate horizon. Instead, each of these experimental therapies are intended to slow the growth of cancer, and prolong my life. The question for any future is therapy will be a balance of my current condition against the wisdom of waiting; the likelihood that the therapy would work on my mets BC; and the potential side effects. I'll be making that decision after in-depth consultations with my doctors.
I've essentially abandoned the idea of having my metastatic nodes removed. I questioned both Drs. Wood and Apolo about that idea, and they firmly rejected it, for three reasons: First, there is no evidence that a lymphanadectomy would help me. The studies on lymphanadectomies on patients with metastatic cancer differentiate between those nodes located in the abdomen (where there is some evidence that removal of additional nodes can help, which is why I had 61 nodes removed at the time of my radical cystectomy), and nodes in the chest, where there is virtually no evidence of any beneficial effect. Second, a lymphanadectomy would not be curative, or even therapeutic, because my bladder cancer is systemic throughout my lymph node system, and is not confined to my enlarged nodes. As Dr. Apolo said, "you have a systemic disease. It needs a systemic treatment." Third, the risks to having a lymphanadectomy of those supraclavicular nodes are significant, especially nerve damage to the shoulder, left arm, or even the heart, as well as potential damage to the veins and arteries lacing that region. On balance, the risks of a lymphanadectomy outweigh the benefits.
I then was instructed on how to inject myself with Lovenox. Last night, Jennifer received instruction and successfully injected me. This morning I successfully showed that I could shoot myself, so to speak. I was told that I would be discharged later today with 56 syringes, sufficient for four weeks of twice daily injections. I'll be reassessed at that time to determine wither I can drop to a once daily injection. Perhaps eventually I might be able to switch to an oral blood thinner, such as rivaroxaban (Xarelto), although I was warned that Xarelto has only been recently approved for DVT and PE, and there is limited data on using it with mets cancer patients. In addition, Xarelto has not been as well-studied for drug interactions, so if I ever enter a clinical trial and was on Xeralto, I'd probably have to go back onto Lovenox. Plus, if ever I was badly bleeding and needed to reverse the effects of the blood thinner I was taking, Lovenox can be reversed, while Xeralto cannot, and would have to metabolize out. The question is, how much of a pain it be to inject myself daily or twice daily, both in terms of the hassle of doing it, and the ongoing bruising and tenderness in the injection sites, versus the possible risks from Xeralto? Eh, I'll cross that bridge later.
I also had a consult with NIH's hematology department - the fellow showed up 90 minutes after the scheduled time, and the attending doctor wandered by a half hours thereafter. Oh that I could bill doctors my regular lawyer billing rate for all the time that I've spent waiting for doctors. Anyway, I was questioned in depth by the fellow on possible symptoms, causes, and family history of DVT and PE. Aside from my brother having had DVT and PE last year for unexplained reasons, there is no immediate family history to my knowledge. Hematology will have my blood run through various tests and possibly a broader genetic sequencing for further insight, but the fellow guessed that my PE is a simple case of metastatic cancer and chemo causing my blood to turn into sludge. Interestingly, the attending said that there was limited evidence suggesting the Lovenox might inhibit the growth of certain types of malignancies, so he suggested that I stay on that instead of shifting to Xeralto. Note to self: do some follow-up research on that.
I also met again with Drs. Wood and Apolo. They are going to coordinate my follow-up care with Dr. Aragon-Ching, who will see me next Monday. I will come back to visit with Dr. Apolo next Tuesday, to further explore whether any clinical trials are currently available to me, and if so, whether now is an appropriate time to do one. Dr. Apolo said that, although my supraclavicular nodes are not increasing in size, Monday's CT scan was able to detect that I have a cluster of supraclavicular nodes that are larger than normal: two are about 1 cm across on the short axis, and others are smaller than 1 cm, but still larger normal. Dr. Wood compared those nodes to a cluster of Hershey's kisses that have started to melt. They were still distinct, but the borders were beginning to become less distinct. While Dr. Wood's HER2 clinical trial required a single tumor at least 2 cm in size, Dr. Apolo said that, for the PD-L1 trials that she had in mind, it might be possible to consider the aggregate of those cluster of nodes to meet the minimum size. She said that later today she was going to sit down with the radiologist who initially read Monday's CT scan, and do a closer evaluation of my CT scan. We'll discuss next week her thoughts on possible clinical trials.
I'm not of the mind that I should jump into any clinical trial that might be open to me. For example, Dr. Wood's Phase 1 HER2 study seems too unproven for me at this point. If I had advanced tumors in my liver or lungs, and there were no other therapies available to me, then I might consider it. But I currently have a relatively light metastatic cancer burden, and know that, in all likelihood, my cancer is likely to progress in time. Each treatment is like a single bullet: I'll likely be able to use each therapy only once. There is no expectation that any therapy will cure me, since there is no known cure for metastatic bladder cancer, and none on the immediate horizon. Instead, each of these experimental therapies are intended to slow the growth of cancer, and prolong my life. The question for any future is therapy will be a balance of my current condition against the wisdom of waiting; the likelihood that the therapy would work on my mets BC; and the potential side effects. I'll be making that decision after in-depth consultations with my doctors.
I've essentially abandoned the idea of having my metastatic nodes removed. I questioned both Drs. Wood and Apolo about that idea, and they firmly rejected it, for three reasons: First, there is no evidence that a lymphanadectomy would help me. The studies on lymphanadectomies on patients with metastatic cancer differentiate between those nodes located in the abdomen (where there is some evidence that removal of additional nodes can help, which is why I had 61 nodes removed at the time of my radical cystectomy), and nodes in the chest, where there is virtually no evidence of any beneficial effect. Second, a lymphanadectomy would not be curative, or even therapeutic, because my bladder cancer is systemic throughout my lymph node system, and is not confined to my enlarged nodes. As Dr. Apolo said, "you have a systemic disease. It needs a systemic treatment." Third, the risks to having a lymphanadectomy of those supraclavicular nodes are significant, especially nerve damage to the shoulder, left arm, or even the heart, as well as potential damage to the veins and arteries lacing that region. On balance, the risks of a lymphanadectomy outweigh the benefits.
Tuesday, October 7, 2014
Mets Day 909: PE, CT, happy me
I'm still in the NIH hospital. They'll keep me here until tomorrow, since they want to confirm that I am getting the right dosage of Lovenox to break up my pulmonary embolism (PE). I've been getting 120 mg of Lovenox twice a day. Tonight the nurse will teach Jennifer and I how to do self-injections. Tomorrow morning I'll prove that I can do it, and then I'll be discharged after another set of labs confirm that everything is ok.
I'll have to keep up with the Lovenox injections twice daily for at least 4 weeks. The doctors want to be sure that all of my clots and deep vein thrombosis (DVT) has been addressed. After 4 weeks, I might shift to once daily shots, which could go for 6 months, or it could last as long as I have bladder cancer. We'll see. Since mets cancer is a known risk factor for DVT and PE, her thinking is that I should probably stay on the Lovenox for the rest of my life. Neither Dr. Apolo nor Dr. Wood recommended that I go on coumadin, because it is so hard to regulate and can be rather unpredictable. I'm not excited about daily shots into perpetuity, but it's better than dying from a stroke. (A few minutes ago, I spoke with Dr. Aragon-Ching, who said that it may be possible after 30 days or so to transition me from Lovenox to oral Xarelto. I will meet with her on Monday to get her views on my follow-up care.)
Dr. Wood gave me a copy of my CT scan. It showed "redemonstrated right lower lobe calcified granuloma", as well as "new, well-defined, linear low-density filling defect within the central aspect of the main portal vein, extending from the portohepatis to the confluence of the SMV" and "an additional filling defect is noted in the central left portal vein." In other words, I've got a bunch of blood clots in my lung and portal veins in my liver. The results of this scan were what caused Dr. Wood to order me back to the hospital last night. Reading it, I can understand why. Compared to my scans of 9/2/14, 7/15/14, and 3/25/14, these clots are new and dramatic. All of the medical professionals that have attended me - the doctors, PA's, nurses - have repeatedly told me how lucky I am that I just happened to have a scan that detected the PE before I had any symptoms.
The CT scan also reported on the size of my enlarged lymph nodes under my left clavicle. The radiologist reports "mild interval decrease in the size of the superior left supraclavicular lymph node, measuring approximately 1.0 cm in the short axis dimension, previously measuring 1.3 cm." My other nodes in the area are stable in size, the largest about 1.0 cm across. This finding that my largest lymph node as decreased in size is somewhat surprising, since I have not had any therapy since my last scan. It could be due to how the CT scan sliced the node, although the radiologist was definitive in his conclusion of "stable and interval decrease in size, respectively, of the two prominent supraclavicular lymph nodes."
Aside from the PE, there are two other immediate takeaways from this CT scan:
1) My cancer seems to have stopped growing for now, and is in fact receding. This is a surprise, and so far, no one has been able to explain it. I'm grateful that it has, and give thanks to God for this news.
2) The smaller size of my nodes mean that I do not qualify for the HER2/neu trial that triggered this latest round of fun and games. The minimum tumor size has to be 2 cm. I also likely will not qualify for any of the PD-L1 trials at this time either. Dr. Apolo told me this morning that she was going to personally measure the node size when she reviewed my CT scan images, but I have not heard back from her. This means that I'm back to watchful waiting - the same place I was prior to about 11 am yesterday morning. Ooch, whiplash.
I'll have to keep up with the Lovenox injections twice daily for at least 4 weeks. The doctors want to be sure that all of my clots and deep vein thrombosis (DVT) has been addressed. After 4 weeks, I might shift to once daily shots, which could go for 6 months, or it could last as long as I have bladder cancer. We'll see. Since mets cancer is a known risk factor for DVT and PE, her thinking is that I should probably stay on the Lovenox for the rest of my life. Neither Dr. Apolo nor Dr. Wood recommended that I go on coumadin, because it is so hard to regulate and can be rather unpredictable. I'm not excited about daily shots into perpetuity, but it's better than dying from a stroke. (A few minutes ago, I spoke with Dr. Aragon-Ching, who said that it may be possible after 30 days or so to transition me from Lovenox to oral Xarelto. I will meet with her on Monday to get her views on my follow-up care.)
Dr. Wood gave me a copy of my CT scan. It showed "redemonstrated right lower lobe calcified granuloma", as well as "new, well-defined, linear low-density filling defect within the central aspect of the main portal vein, extending from the portohepatis to the confluence of the SMV" and "an additional filling defect is noted in the central left portal vein." In other words, I've got a bunch of blood clots in my lung and portal veins in my liver. The results of this scan were what caused Dr. Wood to order me back to the hospital last night. Reading it, I can understand why. Compared to my scans of 9/2/14, 7/15/14, and 3/25/14, these clots are new and dramatic. All of the medical professionals that have attended me - the doctors, PA's, nurses - have repeatedly told me how lucky I am that I just happened to have a scan that detected the PE before I had any symptoms.
The CT scan also reported on the size of my enlarged lymph nodes under my left clavicle. The radiologist reports "mild interval decrease in the size of the superior left supraclavicular lymph node, measuring approximately 1.0 cm in the short axis dimension, previously measuring 1.3 cm." My other nodes in the area are stable in size, the largest about 1.0 cm across. This finding that my largest lymph node as decreased in size is somewhat surprising, since I have not had any therapy since my last scan. It could be due to how the CT scan sliced the node, although the radiologist was definitive in his conclusion of "stable and interval decrease in size, respectively, of the two prominent supraclavicular lymph nodes."
Aside from the PE, there are two other immediate takeaways from this CT scan:
1) My cancer seems to have stopped growing for now, and is in fact receding. This is a surprise, and so far, no one has been able to explain it. I'm grateful that it has, and give thanks to God for this news.
2) The smaller size of my nodes mean that I do not qualify for the HER2/neu trial that triggered this latest round of fun and games. The minimum tumor size has to be 2 cm. I also likely will not qualify for any of the PD-L1 trials at this time either. Dr. Apolo told me this morning that she was going to personally measure the node size when she reviewed my CT scan images, but I have not heard back from her. This means that I'm back to watchful waiting - the same place I was prior to about 11 am yesterday morning. Ooch, whiplash.
Monday, October 6, 2014
Mets Day 908: From clinical trial inquiry to hospitalization
This morning I received a call from Brenda Robinson, the clinical trial coordinator
for Dr. Lauren Wood at NIH. Ms. Robinson told me that she was interested in getting me to participate in a clinical trial relating to a customized immunotherapy the used the fact that my cancer had HER2/neu overexpression. She said that she had an immediate slot available for me, and asked if I could come in that afternoon for a CT screening. Although I did not have enough information to determine whether I wanted to participate in that particular trial, I agreed to go in for the scan and get more information.
Two hours later, I was at NIH. I went to phlebotomy for the blood draw and urine test, then went to radiology for the CT scan. The receptionist said that she did not yet have my orders from the doctor, so I went upstairs to the clinic to find Ms. Robinson. She quickly appeared and was surprised that the orders were not yet entered. She went to the computer and got everything set up, and returned with an 11 page disclosure about the clinical trial. It was NIH NCI Study No. 13-C-0016: Phase 1 study of adenoviral transduced autologous dendritic cell vaccine expressing human HER2/neu ECTM in adults with tumors with 1-3+ HER2/neu expression. I started reading through the disclosures when Ms. Robinson said that Dr. Wood was available to meet with me and explain a bit more about the trial.
Dr. Wood was joined by a team of 5: a fellow, two medical students, and two nurses. She enthusiastically explained the intent of the trial. I learned that this was a first-in-human trial for a new type of customized immunotherapy. She explained how my cancer had tested positive for HER2 overexpression (the test results were plus 3). The HER2 protein sends signals to tumor cells to make them grow and preventing the tumor from dying. HER2 overexpression has been studied extensively in connection with breast cancer, where it is present in 25-30% of cases. The HER2 genome is responsive to several medicines, including trastuzumab (Herceptin), pertuzumab (Perjerta), and ado-trastuzumab emansine (Kadcyla), which are monoclonal antibodies that recognize and inhibit distinct portions of the HER2 protein. The drugs have to be administered repeatedly to have an effect, and they don't necessarily work on all HER2 cancers.
The clinical trial involves the creation of a AdHER2 DC vaccine to induce the patient's own immune system to make multiple, different types of antibodies to HER2, called polyclonal antibodies. Mammalian studies have shown that a AdHER2 DC vaccine has caused significant regression and shrinkage of large established tumors. A YouTube video of this trial is available here. The objective of the trial is to see if the vaccine that works in mammalian studies can be translated to humans. Because monoclonal antibodies such as trastuzumab can adversely affect cardiac function in some patients, the FDA is requiring this trial to closely monitor cardiac function.
I was told that the trial would consist of the removal of certain types of my blood cells through a process called apheresis, where my blood is drawn, run through a cell separator machine to take out my circulating cells (including lymphocytes and monocytes), and the plasma and red cells returned to my body. The circulating cells are then used to custom make a vaccine. Enough circulating cells are removed during apheresis to make 5 or 6 batches of vaccine, using my own dendritic immune cells. Those dendritic cells are derived from the monocytes in my circulating cells. The NIH doctors would mix in a combination of trastuzumab, pertuzumab, and ado-trastuzumab emansine into that vaccine, then would inject it transdermally (under my skin). The protocol calls for 5 rounds of injections: weeks 0, 4, 8, 16, and 24, as well as two years of monitoring.
After trying to digest all of this information, I went back downstairs for the CT scan. The tech was unable to get a return blood draw from my port, suggesting that there was a clot or other type of blockage around the tip of my port. She was able to inject heparin into my port, however, so we used it for the injection of the contrast during the CT scan. While waiting for my CT scan, I sent an email to Dr. Apolo, asking for her input on whether she thought that I should enter this particular clinical trial. After summarizing the trial, I wrote:
Five minutes after I got home, I was called by Dr. Wood. She said that she had just reviewed the results of my CT scan. She said that it showed a large clot in a vein in my liver, and multiple clots in the lower lobe of my right lung -- a serious case of pulmonary embolism, or PE. She asked me to immediately return to the NIH hospital for administration of blood thinners. She said that I likely would be in the hospital for a day or two. I briefed Jennifer, jumped back in the Audi and went back to NIH. After I was admitted, I met with Dr. Wood, who had waited for my return. She explained that mets cancer patients were at increased risk for PE. She said that the best treatment would be for me to have two subcutaneously injections daily of enoxaparin (Lovenox). She said that this was more effective in patients with a cancer burden than IV-administered unfractionated low molecular weight heparin.
So now I'm reclining in my hospital bed watching the Deadskins get thumped by the Seahawks. At around halftime, the nurse came if to inject the Lovenox into my abdomen. She admired my love handles, and said that they were perfect for the injections. I smiled with the knowledge that the decades of preparation for this day has finally paid off. I'll get another injection tomorrow morning, and then probably will get trained on injecting myself. I'll have to do the injections twice a day for the next month or so, then may be able to shift to oral therapy. Whether by serendipity or a bit of divine intervention, I'm grateful that the PE was detected without my suffering any harm. It was (ahem) a stroke of good luck.
Two hours later, I was at NIH. I went to phlebotomy for the blood draw and urine test, then went to radiology for the CT scan. The receptionist said that she did not yet have my orders from the doctor, so I went upstairs to the clinic to find Ms. Robinson. She quickly appeared and was surprised that the orders were not yet entered. She went to the computer and got everything set up, and returned with an 11 page disclosure about the clinical trial. It was NIH NCI Study No. 13-C-0016: Phase 1 study of adenoviral transduced autologous dendritic cell vaccine expressing human HER2/neu ECTM in adults with tumors with 1-3+ HER2/neu expression. I started reading through the disclosures when Ms. Robinson said that Dr. Wood was available to meet with me and explain a bit more about the trial.
Dr. Wood was joined by a team of 5: a fellow, two medical students, and two nurses. She enthusiastically explained the intent of the trial. I learned that this was a first-in-human trial for a new type of customized immunotherapy. She explained how my cancer had tested positive for HER2 overexpression (the test results were plus 3). The HER2 protein sends signals to tumor cells to make them grow and preventing the tumor from dying. HER2 overexpression has been studied extensively in connection with breast cancer, where it is present in 25-30% of cases. The HER2 genome is responsive to several medicines, including trastuzumab (Herceptin), pertuzumab (Perjerta), and ado-trastuzumab emansine (Kadcyla), which are monoclonal antibodies that recognize and inhibit distinct portions of the HER2 protein. The drugs have to be administered repeatedly to have an effect, and they don't necessarily work on all HER2 cancers.
The clinical trial involves the creation of a AdHER2 DC vaccine to induce the patient's own immune system to make multiple, different types of antibodies to HER2, called polyclonal antibodies. Mammalian studies have shown that a AdHER2 DC vaccine has caused significant regression and shrinkage of large established tumors. A YouTube video of this trial is available here. The objective of the trial is to see if the vaccine that works in mammalian studies can be translated to humans. Because monoclonal antibodies such as trastuzumab can adversely affect cardiac function in some patients, the FDA is requiring this trial to closely monitor cardiac function.
I was told that the trial would consist of the removal of certain types of my blood cells through a process called apheresis, where my blood is drawn, run through a cell separator machine to take out my circulating cells (including lymphocytes and monocytes), and the plasma and red cells returned to my body. The circulating cells are then used to custom make a vaccine. Enough circulating cells are removed during apheresis to make 5 or 6 batches of vaccine, using my own dendritic immune cells. Those dendritic cells are derived from the monocytes in my circulating cells. The NIH doctors would mix in a combination of trastuzumab, pertuzumab, and ado-trastuzumab emansine into that vaccine, then would inject it transdermally (under my skin). The protocol calls for 5 rounds of injections: weeks 0, 4, 8, 16, and 24, as well as two years of monitoring.
After trying to digest all of this information, I went back downstairs for the CT scan. The tech was unable to get a return blood draw from my port, suggesting that there was a clot or other type of blockage around the tip of my port. She was able to inject heparin into my port, however, so we used it for the injection of the contrast during the CT scan. While waiting for my CT scan, I sent an email to Dr. Apolo, asking for her input on whether she thought that I should enter this particular clinical trial. After summarizing the trial, I wrote:
I am most interested in your thoughts on whether I should participate in this study, or instead enroll in either your PD-L1 study, or the MPDL3280A study, or some of the other trials that we had discussed. My initial impression is that, because the HER2 study is a first-in-human phase 1 trial and the therapeutic effect is unknown, it might be better for me to enroll in a PD-L1 trial instead. Or should I take a stab at this, then do the PD-L1 trial later? Or vice-versa?I left for home after the scan. I was told that I should plan on coming back to NIH tomorrow for a bone scan, echocardiogram, and further discussion of the trial protocol. I stopped at Chipotle on the way home, as I had not eaten since the night before. While walking into Chipotle, Dr. Apolo called me. She said that she had told Dr. Wood about me back in August, but expected that Dr. Wood would have spoken with her before contacting me. She recalled that we had decided to wait until my next scan on November 18 before deciding what course of treatment, if any, and seemed surprised that her colleagues had initiated contact with me about a trial. While praising Dr. Wood's innovative research with the AdHER2 DC vaccine, Dr. Apolo noted that it was a first-ever Phase 1 trial, and there was no evidence that it would work in humans. By contrast, the PD-L1 trials had shown significant response in more than 50% of study participants. She said that, while it was nice to have choices on trials, she would recommend that, if I was to choose to enter a trial, she would recommend that I participate in a PD-L1 trial. She proposed that I defer for at least a week my decision on whether to enter Dr. Wood's HER2 trial, and in the meantime Dr. Apolo would review the results of today's CT scan, and meet with me on Tuesday, October 14. That sounded sensible to me.
Five minutes after I got home, I was called by Dr. Wood. She said that she had just reviewed the results of my CT scan. She said that it showed a large clot in a vein in my liver, and multiple clots in the lower lobe of my right lung -- a serious case of pulmonary embolism, or PE. She asked me to immediately return to the NIH hospital for administration of blood thinners. She said that I likely would be in the hospital for a day or two. I briefed Jennifer, jumped back in the Audi and went back to NIH. After I was admitted, I met with Dr. Wood, who had waited for my return. She explained that mets cancer patients were at increased risk for PE. She said that the best treatment would be for me to have two subcutaneously injections daily of enoxaparin (Lovenox). She said that this was more effective in patients with a cancer burden than IV-administered unfractionated low molecular weight heparin.
So now I'm reclining in my hospital bed watching the Deadskins get thumped by the Seahawks. At around halftime, the nurse came if to inject the Lovenox into my abdomen. She admired my love handles, and said that they were perfect for the injections. I smiled with the knowledge that the decades of preparation for this day has finally paid off. I'll get another injection tomorrow morning, and then probably will get trained on injecting myself. I'll have to do the injections twice a day for the next month or so, then may be able to shift to oral therapy. Whether by serendipity or a bit of divine intervention, I'm grateful that the PE was detected without my suffering any harm. It was (ahem) a stroke of good luck.
Friday, September 26, 2014
Mets Day 898: Further consultations on my treatment options
Yesterday afternoon I sent the following email to Dr. Jeanny Aragon-Ching, my primary clinical oncologist at GW University:
I'm also mulling over the information regarding lymphadenectomy. I understand Dr. Aragon-Ching to be saying that, if the node were somewhere else, lymphadenectomy might be a better option, but given it's current location, the risks outweigh the benefits.
I have no problem waiting and seeing, provided that is the best option. Heck, I've been doing that for more than two years; waiting and seeing for 15 months after my RC surgery, until the distant nodes popped up; get nuked with ddMVAC chemo; then wait and see for another year. If waiting and seeing is truly the best course, then I'm all for it. It's just that I'm not fully persuaded at this point.
Dr. Aragon-Ching:Last night she responded with the following:
Following up on my visit with you on Monday, September 8 regarding my PET-MRI scan results from NIH: Last week I was advised by Corrine Keen, Dr. Apolo's clinical nurse, that I was required to sign a consent form before NIH could send you copies of my scans. I have since signed and returned the form, so hopefully you should be receiving those scans soon. I would be most interested to hear of your thoughts once you have reviewed my most recent scan.
I had understood from our conversation on September 8 that you were going to check on the following:
1. What is the status of tissue from my cancer being sequenced? Has either GW or NIH sequenced my cancer, and if so, what are the results? If not, is there sufficient tissue available to perform a genetic sequencing? The four sources of tumor available for biopsy would be as follows: 1) the fine needle aspiration at NIH on 9/5/13; 2) the bladder and nodes removed during my radical cystectomy at the University of Chicago on 5/2/12; 3) the TURBT performed by Dr. Fred Hendricks (GW MFA) at GW Hospital on 1/5/12; and 4) TURBT performed by Dr. Hendricks at GW Hospital on 12/1/11. FYI, I have checked with my insurer (United Health Care), and am advised that the cost of genetic sequencing is covered, provided that you obtain a preauthorization, and either send it to an in-network lab, or obtain preapproval to send it to another lab. According to UHC, the following labs are considered to be within the UHC network:
Myriad Genetics
Bioreference Labs
Integrated Genetics
Integrated Oncology
2. Regardless of whether there is tissue available from one of the older biopsies, does it make sense to have the tumor in the enlarged node biopsied and the tissue analyzed? Or is it sufficient to assume that the mets cancer in that node is identical to or sufficiently similar to the material that was biopsied at NIH on Sept. 5, 2013?
3. I understand that there is no definitive data on effect of lymphadenectomy [removal of the cancerous lymph node] and its contribution to survival on patients who continue to have nodal positive disease after chemotherapy. I have reviewed the articles with the following links, and wonder if I should further explore the possibility of lymphadenectomy.
EAU 2014 - The curative potential of lymphadenectomy after response to chemotherapy in patients with urothelial carcinoma presenting with regional or distant nodal metastases: Analysis of a series from a tertiary cancer centre
Postchemotherapy Lymphadenectomy in Patients With Metastatic Urothelial Carcinoma: Long-Term Efficacy and Implications for Trial Design.
Could a salvage lymphadenectomy after chemotherapy have clinical impact on cancer survival in patients with metastatic urothelial carcinoma
I understood your thoughts were that the data did not expressly support lymphadenectomy in my case, and that the risks likely outweighed the benefits. Is that correct? On the other hand, I have a hard time understanding why cutting out a growing tumor is a bad idea. If I wanted to further consider lymphadenectomy, with whom your you recommend that I speak?
4. You recommended that I relax and wait until my next scan (currently scheduled for 11/18/14 at NIH), and if that showed that the node was over 1.5 cm on the short axis, that I should consider one of immunotherapy clinical trials. Do you think that course gives me the greatest chance for increasing my overall survival?
Thank you for your ongoing care.
I have not received the scans from NIH yet but I've attached the genetic findings from your tumor from what Dr. Apolo has sent. [chart follows]
MRN
|
SoftPath ID
|
DNA#
|
Gene Sym
|
Gene Accession #
|
coding seq change
|
protein change
|
Interpretation
|
4993238
|
SB-13-5207
|
TCC-15
|
TP53
|
NM_000546.5
|
c.839G>C
|
p.Arg280Thr
|
Deleterious
|
The mutation is p53 which is not (as of yet) an actionable target per se. I don't think there's enough cells from the FNA [fine needle aspiration] to do more testing and the molecular testing that best fits our needs (if we are to do more testing) would be Foundation One Medicine or Caris Life Science testing, which are testing for drug targets (as opposed to the genetic tests run by Integrated Genetics or Myriad, etc which is used more for hereditary testing or diagnosis, for example).
While I do find merit in lymphadenectomy for localized disease, your area of lymph node involvement is truly difficult to resect out, and this would be the field of cardiothoracic surgery (because of where it is located) and because these are underneath the clavicular (collar bone) area, it would be very difficult to traverse (unlike say in the abdomen - usually a retroperitoneal lymph node dissection is done) because of the collar bone (which connects your shoulder to the breast bone, important nerves/blood vessels in a cramped space in that area that can leave your brachial plexus vulnerable). We generally follow the rules of thoracic surgery (for instance, for lung cancer) where involvement of these upper level supraclavicular nodes would generally preclude surgery as an option.This morning I'm still mulling over this information. I don't understand the information from the genetic findings, and will be doing some further readings about understanding genetic information generally, and the p53 mutation specifically. Also, I'm somewhat confused because I was previously told by several of my doctors that my bladder cancer had a large number of mutations; whereas this genetic finding identifies only one mutation. Maybe it was because the genetic screening did not test for all mutations, or because it stopped after finding the first mutation, or maybe it's because my metastatic bladder cancer has only a single identifiable mutation.
I acknowledge that it is very hard to "relax and wait" in the face of these circumstances and I am painfully aware of the uncertainty that this entails. If we did not have the immunotherapy option and the burden of disease is much more (meaning the size is way bigger and more disease is seen in your next scan), then I would favor chemotherapy still (therein lies the next question of which chemo). However, if the adenopathy has just ever so slightly increased but to the point where you are eligible for the trial, then I think it's well worth considering it because of toxicity reasons (potentially less toxic perhaps).
Take care, JBA
I'm also mulling over the information regarding lymphadenectomy. I understand Dr. Aragon-Ching to be saying that, if the node were somewhere else, lymphadenectomy might be a better option, but given it's current location, the risks outweigh the benefits.
I have no problem waiting and seeing, provided that is the best option. Heck, I've been doing that for more than two years; waiting and seeing for 15 months after my RC surgery, until the distant nodes popped up; get nuked with ddMVAC chemo; then wait and see for another year. If waiting and seeing is truly the best course, then I'm all for it. It's just that I'm not fully persuaded at this point.
Tuesday, September 23, 2014
Mets Day 895 - Visiting my granddaughter
I spent the past week in Utah, staying with my oldest daughter and son-in-law. The occasion was the first birthday of my (only) grandchild. I had a wonderful time, spending hours each day reading books with Rose, watching her toddle around, and just enjoying the moment. Chelsea had the week off from the hospital -- her first break since starting her residency -- so I was able to spend time with her (and Josh) also. We went to the zoo, the dinosaur park, and a hike around Causey Reservoir. We did a few projects around their house, and hung up a swing for Rose on the branch of an apple tree in their back yard. It also was good to visit with extended family who attended the birthday party. There is much joy and rejoicing that can be found in the simple pleasures of spending time with those you love.
I have spent very little time thinking about the consequences of the latest scan. About the only thing that is different is that I was spurred to finish compiling a chart of our various accounts and obligations, consisting of all of the URLs, account numbers, user names, passwords, payment information, and comments. It takes a surprisingly long time to pull all of that information together into a single document. Other than that, my mind is untroubled, and I simply live in the moment.
I have spent very little time thinking about the consequences of the latest scan. About the only thing that is different is that I was spurred to finish compiling a chart of our various accounts and obligations, consisting of all of the URLs, account numbers, user names, passwords, payment information, and comments. It takes a surprisingly long time to pull all of that information together into a single document. Other than that, my mind is untroubled, and I simply live in the moment.
Monday, September 8, 2014
Mets Day 880 - Second opinion on my treatment options
Today I met with Dr. Aragon-Ching, my clinical oncologist at GW. She is the doctor who has overseen all of my chemotherapy, and I respect and trust her options. Last week, I had sent her the following email:
I also researched articles regarding the possibility of having my metastatic lymph nodes removed. A June 2014 article in Clinical Geritouintology Cancer, Postchemotherapy lymphadenectomy in patients with metastatic urothelial carcinoma: long-term efficacy and implications for trial design, suggested that there might be a survival advantage for the removal of diseased nodes. Another article, Lymph node metastases in patients with urothelial carcinoma variants: influence of the specific variant on nodal history,from the June 2014 edition of Urologic Oncology, confirmed that micropapillary bladder cancer (the type I have) is the most common to have node positivity.
Thus prepared, I met with Dr. Aragon-Ching for more than an hour. She is one of the best types of clinicians -- when you meet with her, all of her attention is focused upon you, the patient. She is not rushing to the next appointment, or terse and abrupt in her communications. Instead, she willingly explored all of my questions, as well as the information from the articles that I brought.
She started by stating that, while she had spoken and traded emails with Dr. Apolo, she had not yet received a copy of my most recent scan. She cautioned me that the PET-MRI imaging is a new technology, and the fact that it measured my node to be larger than my prior CT scans did not necessarily mean that it had suddenly surged 30% in size in 6 weeks. Instead, she said it was possible that the clearer resolution of the new scan was just a better picture of what had been going on in that node for some time. (She also acknowledged that it was possible that, in fact my node had taken off in growth, although she said that would be atypical for a distant bladder cancer metastases.)
She also said that, when viewed in the big picture of metastatic bladder cancer that she sees every day, the results of this scan were no big deal. Her purpose was not to brush off my concerns, but instead to put into context what was happening to me compared to other Stage 4 bladder cancer patients. They may have multiple tumors of 3 cm or larger in their liver, or lungs, or other organs, and yet they are still being actively treated. I appreciated her message and reminder that it could be a lot worse.
Building on that, she said that she was looking into the future of the likely course of my disease, and that was strongly influencing her views on what I should do now. Dr. Aragon-Ching felt that my mets bladder cancer still was chemo-sensitive -- she believed that the reason why my mets BC was quiescent for the past year was because of the ddMVAC treatment that I had last fall -- and that my body could handle at least one more set of platinum-based chemotherapy treatments. That being the case, the question she was asking herself was, when was the best time to give me that course of chemotherapy. She said that other patients who had tumors in their organs could have their lives extended by having more chemo to slow the growth of those tumors. She said that it was highly likely that, at some point in the future, I also would have those type of distant tumors. She would rather keep the option of more chemotherapy in reserve for when I really need it. As far as what type of chemotherapy she would consider, she said that we'd cross that bridge when we came to it. She said that there were a number of options available, including carboplatin (instead of cisplatin), adding a taxene, and perhaps other drugs that could target the specific variants within my cancer.
That segued to the question of what actionable information could be obtained from the specific type of mets MC floating around in my body. Dr. Aragon-Ching said that we were still years away from personalized medicine, where each cancer could be run through a DNA scan and a specific therapy designed for the disease. Knowing the mutations or specific characteristics of my cancer was not particularly helpful, because we simply do not have enough knowledge of how to treat each such variant. Researchers are testing different associations and hypotheses, but doctors are still treating cancers on a trial and error basis, she said. She agreed to follow-up on checking into the results of my cancer being sequenced, as well as samples being stained, to determine with types of drugs might have a better chance of working on my cancer.
We also discussed whether it made any sense to have my enlarged node or group of nodes surgically removed. She said that there was very little evidence that such surgery had a beneficial effect. The one study that I showed her referred not to enlarged nodes, but to residual cancer after chemotherapy. In addition, the location of my enlarged nodes -- under my clavicle, next to the brachial plexus nerve bundle -- presented substantial risks to any surgeon who went probing around in that area. She acknowledged that she was not a surgeon, but strongly recommended that I not do that. However, she did agree that it might make sense to do another fine needle aspiration of that node, if more material was needed for DNA sequencing or staining. She said she would look into that and get back to me.
Dr. Aragon-Ching said that, in her opinion, the best treatment available for me in my position was one of the clinical trials using immunotherapy with PD-1 or PD-L1 expression. She gave me a set of powerpoint slides on PD-1 and PD-L1 immunotherapy that she just presented at the last meeting of ASCO (American Society of Clinical Oncologists), which reported up to 50% response among patients who had mets BC, prior chemo exposure, and distant tumors. There are four different drug companies aggressively trying to prove the efficacy of that class of drugs on metastatic bladder cancer. She said that it would make no difference if I waited a couple of months, because if the immunotherapy worked, it would shrink the tumor. Plus, she said that, as a price of being in a clinical trial, a patient needs to meet the standards for the study.
We left it with my doctor having three items to follow up on, and she would get back to me. I noted how NIH had already scheduled a follow-up CT scan for me on November 18, with the assumption that it would show the node having grown to sufficient size that I met the requirements of the clinical trials. In the meantime, if we receive further information which indicates another course is better, we'll pursue that.
I assume that Dr. Apolo has advised you of the results of my PET-MRI scan that I had on 9/2/14, which showed an increase in size in the supraclavicular lymph node (1.5 cm x 1.35 cm), with active uptake of the F18 flouride glucose, as well as enlargement of adjacent nodes. I'd like to meet with you to discuss my treatment options. My questions include the following:She arranged for an appointment today, and spoke with Dr. Apolo about my scans. I also did a considerable amount of research on pubmed.org to review the most recent literature on treatment of metastatic bladder cancer, and read about a dozen articles. A particularly useful article was Chemotherapeutic and targeted biologic agents for metastatic bladder cancer: A comprehensive review, published in January 2014 in the International Journal of Urology. It summarized the latest best practices, recent research, and many current clinical trials. Also of note was Optimal treatment for metastatic bladder cancer, just published (September 2014) in Current Oncology Reports.
1. Last November, when we suspended my dose dense MVAC after 3 rounds, we discussed the option of going back to it if the scans showed further growth. In light of the 9/2/14 scan results, does it make sense to consider any further chemotherapy, and if so, what type?
2. Is it worth considering adding a taxene into a cisplatin-based therapy? If so, is that possible outside of a clinical trial?
3. What clinical trials, if any, would you recommend that I consider?
4. What would you do if you were me?
I also researched articles regarding the possibility of having my metastatic lymph nodes removed. A June 2014 article in Clinical Geritouintology Cancer, Postchemotherapy lymphadenectomy in patients with metastatic urothelial carcinoma: long-term efficacy and implications for trial design, suggested that there might be a survival advantage for the removal of diseased nodes. Another article, Lymph node metastases in patients with urothelial carcinoma variants: influence of the specific variant on nodal history,from the June 2014 edition of Urologic Oncology, confirmed that micropapillary bladder cancer (the type I have) is the most common to have node positivity.
Thus prepared, I met with Dr. Aragon-Ching for more than an hour. She is one of the best types of clinicians -- when you meet with her, all of her attention is focused upon you, the patient. She is not rushing to the next appointment, or terse and abrupt in her communications. Instead, she willingly explored all of my questions, as well as the information from the articles that I brought.
She started by stating that, while she had spoken and traded emails with Dr. Apolo, she had not yet received a copy of my most recent scan. She cautioned me that the PET-MRI imaging is a new technology, and the fact that it measured my node to be larger than my prior CT scans did not necessarily mean that it had suddenly surged 30% in size in 6 weeks. Instead, she said it was possible that the clearer resolution of the new scan was just a better picture of what had been going on in that node for some time. (She also acknowledged that it was possible that, in fact my node had taken off in growth, although she said that would be atypical for a distant bladder cancer metastases.)
She also said that, when viewed in the big picture of metastatic bladder cancer that she sees every day, the results of this scan were no big deal. Her purpose was not to brush off my concerns, but instead to put into context what was happening to me compared to other Stage 4 bladder cancer patients. They may have multiple tumors of 3 cm or larger in their liver, or lungs, or other organs, and yet they are still being actively treated. I appreciated her message and reminder that it could be a lot worse.
Building on that, she said that she was looking into the future of the likely course of my disease, and that was strongly influencing her views on what I should do now. Dr. Aragon-Ching felt that my mets bladder cancer still was chemo-sensitive -- she believed that the reason why my mets BC was quiescent for the past year was because of the ddMVAC treatment that I had last fall -- and that my body could handle at least one more set of platinum-based chemotherapy treatments. That being the case, the question she was asking herself was, when was the best time to give me that course of chemotherapy. She said that other patients who had tumors in their organs could have their lives extended by having more chemo to slow the growth of those tumors. She said that it was highly likely that, at some point in the future, I also would have those type of distant tumors. She would rather keep the option of more chemotherapy in reserve for when I really need it. As far as what type of chemotherapy she would consider, she said that we'd cross that bridge when we came to it. She said that there were a number of options available, including carboplatin (instead of cisplatin), adding a taxene, and perhaps other drugs that could target the specific variants within my cancer.
That segued to the question of what actionable information could be obtained from the specific type of mets MC floating around in my body. Dr. Aragon-Ching said that we were still years away from personalized medicine, where each cancer could be run through a DNA scan and a specific therapy designed for the disease. Knowing the mutations or specific characteristics of my cancer was not particularly helpful, because we simply do not have enough knowledge of how to treat each such variant. Researchers are testing different associations and hypotheses, but doctors are still treating cancers on a trial and error basis, she said. She agreed to follow-up on checking into the results of my cancer being sequenced, as well as samples being stained, to determine with types of drugs might have a better chance of working on my cancer.
We also discussed whether it made any sense to have my enlarged node or group of nodes surgically removed. She said that there was very little evidence that such surgery had a beneficial effect. The one study that I showed her referred not to enlarged nodes, but to residual cancer after chemotherapy. In addition, the location of my enlarged nodes -- under my clavicle, next to the brachial plexus nerve bundle -- presented substantial risks to any surgeon who went probing around in that area. She acknowledged that she was not a surgeon, but strongly recommended that I not do that. However, she did agree that it might make sense to do another fine needle aspiration of that node, if more material was needed for DNA sequencing or staining. She said she would look into that and get back to me.
Dr. Aragon-Ching said that, in her opinion, the best treatment available for me in my position was one of the clinical trials using immunotherapy with PD-1 or PD-L1 expression. She gave me a set of powerpoint slides on PD-1 and PD-L1 immunotherapy that she just presented at the last meeting of ASCO (American Society of Clinical Oncologists), which reported up to 50% response among patients who had mets BC, prior chemo exposure, and distant tumors. There are four different drug companies aggressively trying to prove the efficacy of that class of drugs on metastatic bladder cancer. She said that it would make no difference if I waited a couple of months, because if the immunotherapy worked, it would shrink the tumor. Plus, she said that, as a price of being in a clinical trial, a patient needs to meet the standards for the study.
We left it with my doctor having three items to follow up on, and she would get back to me. I noted how NIH had already scheduled a follow-up CT scan for me on November 18, with the assumption that it would show the node having grown to sufficient size that I met the requirements of the clinical trials. In the meantime, if we receive further information which indicates another course is better, we'll pursue that.
Wednesday, September 3, 2014
Mets Day 875 - My cancer is slowly growing
This afternoon I received a call from Dr. Apolo with the results of yesterday's PET-MRI scan. She reported that the scan provided excellent images. The good news is that the scan did not reveal any tumors in my organs. The bad news is that the scan showed that the cancer is slowly growing in the same group of lymph nodes near the base of my neck, where the distant metastases was first detected in August of last year. She reported that the scan showed that the size of the largest node was 1.5 cm in the long axis, and 1.35 cm in the short axis. She said that the scan showed that there was a cancer tumor growing within that node, since the scan showed uptake of the 18F-flouride glucose. She added that other nodes in the area were also slightly larger in size than was reflected in prior scans. This means that my metastatic cancer was not sterilized by the dose dense MVAC chemotherapy that I had last fall, and has resumed its growth in my lymphatic system.
Dr Apolo said that there was no standard therapy that she would recommend at this point. I've already had two rounds of cisplatin-based chemotherapies, and my cancer had been shown to be cisplatin-resistant. She said that the most promising therapy would be an experimental immunotherapy, which is available only through a clinical trial. The standards for entering such trials, however, are that the tumor has to be at least 1.5 cm in size on its shortest axis, and mine is just under that size, at 1.35 cm. She recommended waiting for a couple of months, then having another scan. In the meantime, she would review the various clinical trials available, and we can discuss the pros and cons after my next scan.
Although I already knew the answer, I asked whether removing the nodes would have any beneficial effect. Dr. Apolo replied that studies had shown that there was no therapeutic benefit to removing metastatic nodes, because the cancer was spread throughout my lymphatic system. Removing the nodes would not slow the spread of cancer to other parts of my body.
This news is disappointing but not unexpected. If anything, the surprise has been how slowly my mets has moved. Maybe it will continue to grow slowly. Maybe we'll find an experimental therapy that can slow or even reverse it (although that's a long shot). The most likely outcome is that it will spread like, well, a cancer, and eventually overwhelm my body. My hope is tempered with reality, but my faith remains unshaken:
Dr Apolo said that there was no standard therapy that she would recommend at this point. I've already had two rounds of cisplatin-based chemotherapies, and my cancer had been shown to be cisplatin-resistant. She said that the most promising therapy would be an experimental immunotherapy, which is available only through a clinical trial. The standards for entering such trials, however, are that the tumor has to be at least 1.5 cm in size on its shortest axis, and mine is just under that size, at 1.35 cm. She recommended waiting for a couple of months, then having another scan. In the meantime, she would review the various clinical trials available, and we can discuss the pros and cons after my next scan.
Although I already knew the answer, I asked whether removing the nodes would have any beneficial effect. Dr. Apolo replied that studies had shown that there was no therapeutic benefit to removing metastatic nodes, because the cancer was spread throughout my lymphatic system. Removing the nodes would not slow the spread of cancer to other parts of my body.
This news is disappointing but not unexpected. If anything, the surprise has been how slowly my mets has moved. Maybe it will continue to grow slowly. Maybe we'll find an experimental therapy that can slow or even reverse it (although that's a long shot). The most likely outcome is that it will spread like, well, a cancer, and eventually overwhelm my body. My hope is tempered with reality, but my faith remains unshaken:
Oh that my words were now written! oh that they were printed in a book!
That they were graven with an iron pen and lead in the rock for ever!
For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth:
And though after my skin worms destroy this body, yet in my flesh shall I see God:
Whom I shall see for myself, and mine eyes shall behold, and not another; though my reins be consumed within me.
Tuesday, September 2, 2014
Mets Day 874 - PET-MRI Scan
Today I went to NIH for a combined PET-MRI scan. I was the first patient of the morning, and arrived at 6:15 am. In advance of the scan, a tech placed an IV in my arm (no nurse was available at the time to access my port), and was injected with 18F-fluoride. That's a type of glucose with a positron-emitting isotope that likes to accumulate in many types of cancer cells. After I was injected, the tech told me that I needed to wait for 45 minutes for the stuff to be absorbed into whatever cancer cells I have in my body. She added that the glucose liked to go into muscles that were used post-injection, so I should relax, close my eyes, and rest. I set aside my biography of C.S. Lewis and reclined my chair, while the tech turned out the light and shut the door.
Exactly 45 minutes later, the tech woke me up, escorted me to the machine, and turned me over to another tech. He told me that NIH got the machine just a few months ago, and that there were fewer than 20 in operation throughout the United States. It's a traditional closed MRI design, meaning that the patient lays on a moving table that is slid into a long tube surrounded by large spinning magnets and radiation-spewing beams. I've had both PET and MRI scans before; apparently what makes this machine special is that, instead of conventional photomultiplier tubes used on prior PET machines, this machine has avalanche photodiodes which are not affected by the strong magnetic field of the MRI system, so it can do a PET and MRI at the same time.
The tech told me that the scan would be a bit over an hour long. After I got on the table, he placed a brace around me neck to limit my head movement, He strapped me onto the table, carefully placing my arms at my sides, then cinched the straps so I could not move. He put a bulb in my hand and told me to squeeze it if I started to feel claustrophobic or otherwise uncomfortable. He then stuffed earplugs into my ears, then put headphones over the earplugs. I remembered my MRI scan in April 2012 (which confirmed that my cancer had metastasized), when I wrote:
When the tech unstrapped me from the table, he saw how I had sweated through my the front and back of my shirt, and commented how it could get warm inside that tube. I briefly wondered how what percentage of patients have problems in completing their scans, then offered a prayer of gratitude that this scan was made available to me, and that I got through it ok.
I'll get my results in a few days. I have already accepted the results, whatever they may be. I don't control my cancer, and that acceptance gives me strength to embrace my current state: living one day at a time, enjoying one moment at a time, accepting hardship as the pathway to peace.
Exactly 45 minutes later, the tech woke me up, escorted me to the machine, and turned me over to another tech. He told me that NIH got the machine just a few months ago, and that there were fewer than 20 in operation throughout the United States. It's a traditional closed MRI design, meaning that the patient lays on a moving table that is slid into a long tube surrounded by large spinning magnets and radiation-spewing beams. I've had both PET and MRI scans before; apparently what makes this machine special is that, instead of conventional photomultiplier tubes used on prior PET machines, this machine has avalanche photodiodes which are not affected by the strong magnetic field of the MRI system, so it can do a PET and MRI at the same time.
The tech told me that the scan would be a bit over an hour long. After I got on the table, he placed a brace around me neck to limit my head movement, He strapped me onto the table, carefully placing my arms at my sides, then cinched the straps so I could not move. He put a bulb in my hand and told me to squeeze it if I started to feel claustrophobic or otherwise uncomfortable. He then stuffed earplugs into my ears, then put headphones over the earplugs. I remembered my MRI scan in April 2012 (which confirmed that my cancer had metastasized), when I wrote:
As I felt the noisy thumping of the machine, like a badly unbalanced washer during a vigorous spin cycle, I sensed the fluid in my cells jostling back and forth, and I felt my pelvis getting uncomfortably warm. I thought of the scene from Gremlins where one of the evil critters was lured into the microwave, soon followed by a green explosion. I remembered that the floor and walls of the MRI room was all tile, and that there was a mop and bucket in the corner. That realization did not comfort me. MRI, I realized, was an acronym for Microwave Roasted Individual.Today's scan was not quite as bad as that one, but it was close. I spent 90 minutes in that metal tube and the machine growled and hummed like a cheesy sci-fi movie. I felt my spine heat up as it was irradiated. An hour into the scan, I had beads of sweat forming on my face. I couldn't wipe my face, and the more I tried to ignore my perspiration, the greater was my desire to squeeze the bulb so I could just mop my brow. I then consciously relaxed, accepted the fact that I was hot and sweaty, and embraced my current state. Calmed, I rode out the scan for the last 30 minutes.
When the tech unstrapped me from the table, he saw how I had sweated through my the front and back of my shirt, and commented how it could get warm inside that tube. I briefly wondered how what percentage of patients have problems in completing their scans, then offered a prayer of gratitude that this scan was made available to me, and that I got through it ok.
I'll get my results in a few days. I have already accepted the results, whatever they may be. I don't control my cancer, and that acceptance gives me strength to embrace my current state: living one day at a time, enjoying one moment at a time, accepting hardship as the pathway to peace.
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