I'm still wiped out. I've got no energy to do anything. I shuffle across the room or up the stairs and I'm breathing hard. Who knew this chemo regimen would turn me into an 80 year old man?
I just sent the following email to my doctors:
Drs. Aragon-Ching and Apolo:
A quick note to advise you of my status. I have found the ddMVAC to be exhausting. I have kept the nausea at bay and avoided major GI issues, but have had almost no energy. I am breathing hard after going up a couple of flights of stairs. I am extra sensitive to bright lights or loud noises. My existing tinnitus seems to have been ratcheted up a couple of notches. I am finding it hard to concentrate on a task for more than a few minutes. I've been hoping the effects will decrease with time, and maybe I'm impatient, but if this is what it's going to be like foe 12 weeks, I'm questioning whether the game is worth the candle.
Dr. Aragon-Ching, I'm scheduled to do lab work at your office on Wednesday at around 3 pm. I have an echo scheduled for 3:15 pm. If appropriate, I'd appreciate checking in with you to discuss my labs and the side effects. I can come in earlier if that helps.
Many thanks for your ongoing care,
Ken
I'm thinking that, unless this gets better, I really don't want to be feeling like this for 12 weeks. The only reason I'm doing this is a chance that it will delay the spread of my metastatic cancer. It's not going to cure me, and its unlikely to buy me much additional time. I don't to spend three months feeling like this. These three months might otherwise be the time that I'd be feeling the least affected by cancer.
It's no longer strange to be weighing life in a matter of months. Before cancer, how easy it was to live oblivious to mortality, to assume that I would have years or decades in front of me to do things, or make changes, or whatever. Last night I opened a new tube of toothpaste and wondered if it would last longer than I would.
Cancer brings perspective and humility like little else. Having my granddaughter near helps immensely. The joy and wonder and beauty of new life makes measure of what matters most.
Monday, September 30, 2013
Friday, September 27, 2013
ddMVAC Chemo Day 3: Wiped out
This first round of dose dense MVAC chemo feels harder on my cells than any of my GemCis chemo rounds. It feels like every cell in my body is swaying, like being seasick on a cellular level. I am lethargic. I'm not very hungry or thirsty, and have to force myself to stay hydrated. I have an ongoing nasty taste in my mouth, a cross between cardboard and metallic.
Fortunately, I have not been so nauseated that I've actually vomited (yet). Last night I woke up at midnight with acid reflux, and what seemed like the beginning of an sickness episode. I stumbled over to the bathroom clutching my pink plastic barf bucket and moaned on the porcelain throne for a while until the acute phase passed. The rest of the night was restless.
I also have managed to avoid the painful constipation that plagued me during the first round of GemCis. I've been taking Miralax each night, and spacing out my anti-emetics so they don't plug me up. On the other hand, I have not been eating that much, so there's less passing through my GI tract.
Yesterday Chelsea gave me the Neulasta growth hormone booster shot that my insurance company had overnighted to me. That can cause a dull ache in the bones and the bone marrow gets kicked beck into gear. My tinnitus is loud and clear, and at times I feel like I am on the ragged edge of holding it together. It's hard to concentrate or read or even watch TV. About the best I can do is lay back on the recliner and stay very, very still.
Fortunately, I have not been so nauseated that I've actually vomited (yet). Last night I woke up at midnight with acid reflux, and what seemed like the beginning of an sickness episode. I stumbled over to the bathroom clutching my pink plastic barf bucket and moaned on the porcelain throne for a while until the acute phase passed. The rest of the night was restless.
I also have managed to avoid the painful constipation that plagued me during the first round of GemCis. I've been taking Miralax each night, and spacing out my anti-emetics so they don't plug me up. On the other hand, I have not been eating that much, so there's less passing through my GI tract.
Yesterday Chelsea gave me the Neulasta growth hormone booster shot that my insurance company had overnighted to me. That can cause a dull ache in the bones and the bone marrow gets kicked beck into gear. My tinnitus is loud and clear, and at times I feel like I am on the ragged edge of holding it together. It's hard to concentrate or read or even watch TV. About the best I can do is lay back on the recliner and stay very, very still.
Wednesday, September 25, 2013
Mets Day 530: ddMVAC Chemo Day 1
The day started at 5:30 am, when I got up to take my son to his 6 am religion class – something that most Mormon high school kids choose to do each school day. Jennifer and I take turns driving him to the church for his class. Back when I was working, I’d frequently continue on into the office. Today I came back home and crawled back into bed with my snoozing wife.
We left for GW at 7:40, and I was reminded at how little I
missed my morning commute. Jennifer
dropped me off at GW’s Cancer Clinic at 8:30 am, then went to run some errands
and to attend a parent-teacher conference.
We knew this would be a long day, and I had urged her to not sit by my
side and watch the IV drip for 8 or 9 hours.
I met with Dr. Aragon-Ching first. She was pleased that Monday’s CT scan was negative, and we
could proceed with the chemo. I asked her about
why she had decided to do all the infusions in one day. She said that she had been consulting
with Dr. Apolo, who thought that I would be fine with receiving all four drugs
in one day, especially since I had strong kidney functions. After reviewing my lab reports and history, Dr. Aragon-Ching decided that the original plan –
three bags of hydration and the Methotrexate today, and then come back for
three more bags of fluid and the Velban, Adriamycin, and Cisplatin tomorrow –
was more hassle than it was worth, and that I'd be fine with getting everything in a single day. I'll get the Neulasta booster shot tomorrow. I’ll come back next week for a blood draw and to check my counts. She also said that it was important
that I continue to keep hydrated, even if I lost my appetite, because dehydration
was the greatest risk of this chemo cycle. We talked about the other likely side effects – nausea,
constipation, peripheral neuropathy, hair loss, and how to deal with them. She also noted that the doxorubicin
(the generic name for the “A” drug, Adriamycin), would turn my urine red, as if
it were bloody, and said that was normal while it passed through my system. It might also might turn my fingernails darker, so it will
be easier for me to go goth. She
said she’d give me lots of anti-emetics before I got the MVAC drugs, and also write scripts for them in pill form that I should take as needed. She said that taking ginger probably
wasn’t necessary with all the other anti-emetics I would have, but there wasn’t any harm in it.
Onto the chemo infusion room, the same place that I had last
year’s GemCis regimen. The same
staff was there, including Meg, a great nurse who remembered me from last year. She accessed my port and started me on
a bag of saline. She said I’d
probably get between 2.5 and 3 bags of fluid today. My infusion rate is 500 ml per hour, so that means I’ll be connected to the IV for about 6 hours.
Meg gave me printouts on all of the drugs that I’ll be
getting, and the financial counselor gave me the cost sheet for
everything. Here’s what’s on the
menu for today:
Three anti-emetics, to help control for nausea and keep my
GI system going: 10 mg of
dexamethasone ($1.10), 250 mcg of palonosetron ($207), and 150 mg of Emend (fosaprepitant)
($309).
The MVAC regimen: 100 mg of Methotrexate ($6.50), 6 mg of Velban
(vinblastine sulfate) ($8.50), 60 mg of Adriamycin (doxorubicin) ($55.00), and 120
mg of Cisplatin ($112.00).
Each Neulasta growth hormone shot (6 mg of pegfilgrastim)
costs $3083.83. That’s not a typo. After my infusion started, I spoke with
OptumRx, the drug provider for my insurance, which confirmed that it could
overnight the Neulasta drug to my home, where I could inject myself, or have
Jennifer or Chelsea do it. I confirmed that Dr. Aragon-Ching was ok with my not
coming in tomorrow and having the Neulasta shot at home, and confirmed the
shipment with OptiumRx. My copay
was $60.
According to the GW cost sheet, there are additional costs
for the doctors, nurses, lab tests, the facility, etc., that runs around $850
per round. Including the Neulasta,
the total cost for each round of treatment is $4572.02, and the total cost for
all six rounds is $27,432.12. If I
back out the Neulasta, the cost per each chemo round is $1488.18, and total
cost for all six rounds is $8929.09.
My insurance covers 90% until I have paid $1500 in out-of pocket costs
for the year, which I think I’ve already met, or am close to meeting. Thereafter, it covers 100%.
Unlike my first round of GemCis last year, there are no fire
alarms, just the growling of the infusion pump and chatter of patients and
nurses. Two chairs away from my,
another patient is loudly talking about the exploits of his father during World
War II. Fortunately for me, he’s
facing the other way and directing his monologue to the poor guy his other
side, who is tethered to an IV and can’t get away. I studiously avoid eye contact with Mr. Family History, who
occasionally glanced my way in hopeful search of a larger audience. I put in my earbuds, closed my eyes,
and cranked up Adele who could have been talking about my chemotherapy: There's a fire starting in my heart,
reaching a fevered pitch and it's bringing me out the dark.
By 3 pm, my butt was getting tired of sitting in one place for so long. I switched over to Pink Floyd's Dark Side of the Moon, and Time started just as I am typing this: Ticking away, the moments that make up a dull day . . . you're older,
shorter of breath, and one day closer to death. Not all prophets are religious.
My friend Cynthia joined me at about 4 pm, and we sat together while the last drops of Cisplatin and saline entered my body. By 5 pm I was done. I'd had over three liters of fluid pushed through my port, and had drunk two more liters of PowerAide. I made appointments for lab tests next Wednesday, and for my second round on October 9. I picked up my new anti-emetics pills and headed home. By the time I arrived, I was beginning to feel nauseated, so I began taking my pills and sitting very still. It feels like I've got cellular seasickness: every cell was slowly twisting and writhing. I found that holding my granddaughter on my chest helped soothe the swaying feeling.
Tuesday, September 24, 2013
Mets Day 529: Prepping for salvage chemotherapy
Tomorrow morning I start dose dense MVAC (or ddMVAC) chemotherapy. The goal of this chemo round is not to cure me of my cancer. The doctors have made clear that they lack the ability or knowledge to "cure" (meaning to place into remission for more than five years) metastatic bladder cancer. There has never been a proven curative therapy for my type of cancer that can be replicated with any reliability. It is important to understand the limitations of a treatment before embarking on it. I get it.
Instead, the goal of this course of chemo is palliative, meaning to treat and hopefully lessen symptoms, but without a curative intent. This type of chemo also is referred to as "salvage chemotherapy." The symptoms that this chemo is attempting to address is the spread of my cancer to distant locations -- mainly the hundreds of lymph nodes in my torso, but also to slow the growth of tumors in other organs, especially my liver, lungs, bone marrow, and brain.
As I've recounted in my prior blog entries, doing this ddMVAC regimen at this point is an aggressive treatment, for three reasons. First, we're proceeding quickly. We are not waiting until I have lymph nodes that are over 1.5 cm in size, which is the traditional threshold for measurable metastatic disease. Doctors usually like to wait until they see nodes or tumors of that size, so they can later measure them to see if the treatment worked. But it made no sense to me to wait for the disease to progress before we start trying to slow its growth. It's like waiting for weeds to completely take over a lawn before you apply a herbicide. Better to attack the weeds before the roots get too deep.
Second, the evidence that ddMVAC actually works is not as strong as many doctors would like. There is some evidence that it can slow the progression of the disease in up to 50% of patients, but the literature also indicates that when the effect (if any) wears off, the cancer progresses faster. Returning to my gardening metaphor, the ddMVAC herbicide may slow the growth of the cancerous weeds, but when the herbicide wears off, the weeds grow faster than before. But if it slows the growth of the weeds for some period of time, then the chemo will have worked.
Third, ddMVAC carries with it the risk of some severe side effects. It is likely to damage my GI tract, eventually causing blisters to the mucosa layer on the inside of my lips, mouth, and throat. I'll probably have either constipation or diarrhea, or both, as well as nausea and vomiting. I'll have fatigue and malaise. I'll be at risk for infections and fever. I'll probably lose my hair. During this regimen I'll be walking on the ragged edge of toxicity, taking just under the dosage that would so weaken my body that an infection would be fatal. I can't keep taking the ddMVAC for more than six doses at a time, and 12 doses total, because over time the chemo drugs are so toxic that it would kill me. The hope is that the chemo will have enough of a prophylactic effect that it will delay the further growth of the cancer, but not so much as to cause a systemic collapse. My doctors have told me that they think that I will "tolerate the chemo well" and they they can manage these side effects, but I'll be the one barfing and writhing on the floor in cold sweats.
I'm going into this with my eyes wide open, choosing to subject myself to the side effects because this treatment offers the best possibility for extending my life. I have made clear to my doctors and family that I don't want to torture myself to buy a few extra weeks of life. In weighing the potential benefits against the risks, however, I have concluded that ddMVAC does not rise to the level of torture. Maybe in a few weeks I'll change my mind, but for now, we're moving forward.
I've done a few things to prepare for my chemo. On Sunday, I started taking 500 mg. of ginger twice a day to help reduce nausea. My sister brought to my attention an NIH-sponsored study published last year (link here), which concluded that ginger reduces acute chemotherapy-induced nausea when taken for six days in conjunction with each chemo cycle, starting three days before and going until three days after. There's no downside to taking the ginger pills, and I'll also be taking the anti-emetics. I'll also be taking Miralax daily. I've been to this rodeo before, and have a slightly better idea on how to keep my GI system in balance.
I had a baseline CT scan at NIH yesterday. As I lay on the table and felt the iodine warm my body and collect in my neobladder, I realized that this was my ninth CT scan in 20 months. It's old hat now. One of purposes of yesterday's CT was to see if it could detect a tumor in my liver. If so, we'll probably pull the plug on the chemo, as ddMVAC does not work well with liver tumors. Assuming the scan does not show a liver tumor, we'll proceed. [After I initially posted this blog entry, Dr. Apolo emailed me the CT report, which did not detect any liver metastases or other enlarged nodes.] I'll have another CT scan in December or whenever I end this regimen, to see if my cancer has spread. If not, and depending on how I tolerate the chemo, I may have another six rounds of ddMVAC early next year. If it the disease has progressed, then we'll know that the chemo didn't work.
Dr. Aragon-Ching's nurse just called to tell me that she wanted to do all four drug infusions tomorrow. This is different from what she had told me earlier(the M drug on day one, and the VAC drugs on day 2), with no explanation as to why. I'll find that out tomorrow morning. Tomorrow will be a long day, lasting nine hours or more for the infusions, plus the blood work and port placement. I'll probably take in the laptop and blog, or maybe I'll start watching a new miniseries. People have recommended Breaking Bad (teacher with cancer does bad things) or Mad Men (ad executives do bad things) or House of Cards (politicians do bad things). On second thought, maybe I don't want to watch people doing bad things. Yesterday I held my new granddaughter for about three hours. There are very few things better than that.
Instead, the goal of this course of chemo is palliative, meaning to treat and hopefully lessen symptoms, but without a curative intent. This type of chemo also is referred to as "salvage chemotherapy." The symptoms that this chemo is attempting to address is the spread of my cancer to distant locations -- mainly the hundreds of lymph nodes in my torso, but also to slow the growth of tumors in other organs, especially my liver, lungs, bone marrow, and brain.
As I've recounted in my prior blog entries, doing this ddMVAC regimen at this point is an aggressive treatment, for three reasons. First, we're proceeding quickly. We are not waiting until I have lymph nodes that are over 1.5 cm in size, which is the traditional threshold for measurable metastatic disease. Doctors usually like to wait until they see nodes or tumors of that size, so they can later measure them to see if the treatment worked. But it made no sense to me to wait for the disease to progress before we start trying to slow its growth. It's like waiting for weeds to completely take over a lawn before you apply a herbicide. Better to attack the weeds before the roots get too deep.
Second, the evidence that ddMVAC actually works is not as strong as many doctors would like. There is some evidence that it can slow the progression of the disease in up to 50% of patients, but the literature also indicates that when the effect (if any) wears off, the cancer progresses faster. Returning to my gardening metaphor, the ddMVAC herbicide may slow the growth of the cancerous weeds, but when the herbicide wears off, the weeds grow faster than before. But if it slows the growth of the weeds for some period of time, then the chemo will have worked.
Third, ddMVAC carries with it the risk of some severe side effects. It is likely to damage my GI tract, eventually causing blisters to the mucosa layer on the inside of my lips, mouth, and throat. I'll probably have either constipation or diarrhea, or both, as well as nausea and vomiting. I'll have fatigue and malaise. I'll be at risk for infections and fever. I'll probably lose my hair. During this regimen I'll be walking on the ragged edge of toxicity, taking just under the dosage that would so weaken my body that an infection would be fatal. I can't keep taking the ddMVAC for more than six doses at a time, and 12 doses total, because over time the chemo drugs are so toxic that it would kill me. The hope is that the chemo will have enough of a prophylactic effect that it will delay the further growth of the cancer, but not so much as to cause a systemic collapse. My doctors have told me that they think that I will "tolerate the chemo well" and they they can manage these side effects, but I'll be the one barfing and writhing on the floor in cold sweats.
I'm going into this with my eyes wide open, choosing to subject myself to the side effects because this treatment offers the best possibility for extending my life. I have made clear to my doctors and family that I don't want to torture myself to buy a few extra weeks of life. In weighing the potential benefits against the risks, however, I have concluded that ddMVAC does not rise to the level of torture. Maybe in a few weeks I'll change my mind, but for now, we're moving forward.
I've done a few things to prepare for my chemo. On Sunday, I started taking 500 mg. of ginger twice a day to help reduce nausea. My sister brought to my attention an NIH-sponsored study published last year (link here), which concluded that ginger reduces acute chemotherapy-induced nausea when taken for six days in conjunction with each chemo cycle, starting three days before and going until three days after. There's no downside to taking the ginger pills, and I'll also be taking the anti-emetics. I'll also be taking Miralax daily. I've been to this rodeo before, and have a slightly better idea on how to keep my GI system in balance.
I had a baseline CT scan at NIH yesterday. As I lay on the table and felt the iodine warm my body and collect in my neobladder, I realized that this was my ninth CT scan in 20 months. It's old hat now. One of purposes of yesterday's CT was to see if it could detect a tumor in my liver. If so, we'll probably pull the plug on the chemo, as ddMVAC does not work well with liver tumors. Assuming the scan does not show a liver tumor, we'll proceed. [After I initially posted this blog entry, Dr. Apolo emailed me the CT report, which did not detect any liver metastases or other enlarged nodes.] I'll have another CT scan in December or whenever I end this regimen, to see if my cancer has spread. If not, and depending on how I tolerate the chemo, I may have another six rounds of ddMVAC early next year. If it the disease has progressed, then we'll know that the chemo didn't work.
Dr. Aragon-Ching's nurse just called to tell me that she wanted to do all four drug infusions tomorrow. This is different from what she had told me earlier(the M drug on day one, and the VAC drugs on day 2), with no explanation as to why. I'll find that out tomorrow morning. Tomorrow will be a long day, lasting nine hours or more for the infusions, plus the blood work and port placement. I'll probably take in the laptop and blog, or maybe I'll start watching a new miniseries. People have recommended Breaking Bad (teacher with cancer does bad things) or Mad Men (ad executives do bad things) or House of Cards (politicians do bad things). On second thought, maybe I don't want to watch people doing bad things. Yesterday I held my new granddaughter for about three hours. There are very few things better than that.
Friday, September 20, 2013
Mets Day 525: I've decided to have ddMVAC chemo
For the past ten days I've collected a lot of information about the treatment options for my spreading cancer. I've spoken with three different oncologists about whether I should have salvage chemotherapy, and they have in turn consulted with four other doctors. Yesterday Dr. Apolo said that she had consulted with two additional doctors, who agreed that ddMVAC was appropriate, so the final tally is 5 doctors support dose dense MVAC, and two advise against it. In addition, I have extensively discussed whether to proceed with Jennifer and Chelsea. I have prayed for guidance in, or at least comfort with, my decision. Yesterday afternoon I decided to go forward with ddMVAC.
The things that swung my decision to go forward with treatment were as follows: First, I trust the judgment of Drs. Apolo and Aragon-Ching. Although I also trust the judgment of Drs. Plimack and Steinberg, who were advising against treatment, I was ultimately persuaded by review of the literature, and as a result of my phone conference with Dr. Apolo yesterday.
Second, the fact that Dr. Apolo said that she had examined the cancer cells take from me during the biopsy a couple of weeks ago, and concluded that my metastatic cancer was undifferentiated and more aggressive, caused me discount the hope expressed by Dr. Plimack that my cancer might move slowly through my body. It appears to be the type of cancer that, if unchecked, will move quickly through my body. Doing nothing likely would ensure that I would form secondary tumors in a few months.
Third, Drs. Apolo and Aragon-Ching strongly believe that they can manage ddMVAC without the toxicities that were common 10 years ago, when 70% of patients ended up being hospitalized during chemo. Dr. Apolo said how she had been treating a number of patients who continued to work, or garden, or otherwise keep ambulatory. This helped persuade me that the three months of chemo probably would not be lost months, but that I would be able to keep a relatively normal schedule. Whiel I don't expect the ddMVAC to be a cakewalk, I'm persuaded that I should be able to avoid hospitalization as a result of the chemo.
Fourth, the upside of ddMVAC outweighs the downsides. The average time for progression to full-blown tumors with no treatment is 4-5 months. With ddMVAC, it's over 9 months, and 35% hit the two-year mark. While there will be no way to prove whether ddMVAC bought more time, should that occur, it likely won't cause long-term damage, especially since I'm relatively young and otherwise healthy.
I've let Drs. Aragon-Ching and Apolo know of my decision. Dr. Aragon-Ching has obtained the approval of my insurance company to proceed. I'll have a baseline CT scan through NIH on Monday afternoon, since the insurance company balked at approving that. I am scheduled to have my first dose (the "M") starting on Wednesday, September 25. On Thursday, Sept. 26, I'll have the "VAC" doses. On Friday, Sept. 27, I'll have the Neulasta growth hormone booster shot. Then I'll repeat the cycle for six times, or until I have too many side effects (most likely mouth sores that prevent me from swallowing). After I end the cycle, I'll have another CT scan to see what changes there are from my baseline CT scan.
For now, I feel as I am headed back into the toxic mire, poisoning myself to save myself. To (mis)quote young Henry:
Once more unto the breach, dear friends, once more;
Or close the cells up, make our cancer dead!
In peace, there ’s nothing so becomes a man,
As modest stillness and humility:
But when the blast of chemo blows in our ears,
Then imitate the action of the tiger;
Stiffen the sinews, summon up the blood
Disguise fair nature with hard-favour'd rage;
Then lend the eye a terrible aspect;
Let pry through the portage of the head
Like a brass cannon; let the brow o'erwhelm it
As fearfully as doth a galled rock
O'erhang and jutty his confounded base
Swill'd with the wild and wasteful ocean
Now set the teeth and stretch the nostril wide
Hold hard the breath and bend up every spirit
To his full height.
The things that swung my decision to go forward with treatment were as follows: First, I trust the judgment of Drs. Apolo and Aragon-Ching. Although I also trust the judgment of Drs. Plimack and Steinberg, who were advising against treatment, I was ultimately persuaded by review of the literature, and as a result of my phone conference with Dr. Apolo yesterday.
Second, the fact that Dr. Apolo said that she had examined the cancer cells take from me during the biopsy a couple of weeks ago, and concluded that my metastatic cancer was undifferentiated and more aggressive, caused me discount the hope expressed by Dr. Plimack that my cancer might move slowly through my body. It appears to be the type of cancer that, if unchecked, will move quickly through my body. Doing nothing likely would ensure that I would form secondary tumors in a few months.
Third, Drs. Apolo and Aragon-Ching strongly believe that they can manage ddMVAC without the toxicities that were common 10 years ago, when 70% of patients ended up being hospitalized during chemo. Dr. Apolo said how she had been treating a number of patients who continued to work, or garden, or otherwise keep ambulatory. This helped persuade me that the three months of chemo probably would not be lost months, but that I would be able to keep a relatively normal schedule. Whiel I don't expect the ddMVAC to be a cakewalk, I'm persuaded that I should be able to avoid hospitalization as a result of the chemo.
Fourth, the upside of ddMVAC outweighs the downsides. The average time for progression to full-blown tumors with no treatment is 4-5 months. With ddMVAC, it's over 9 months, and 35% hit the two-year mark. While there will be no way to prove whether ddMVAC bought more time, should that occur, it likely won't cause long-term damage, especially since I'm relatively young and otherwise healthy.
I've let Drs. Aragon-Ching and Apolo know of my decision. Dr. Aragon-Ching has obtained the approval of my insurance company to proceed. I'll have a baseline CT scan through NIH on Monday afternoon, since the insurance company balked at approving that. I am scheduled to have my first dose (the "M") starting on Wednesday, September 25. On Thursday, Sept. 26, I'll have the "VAC" doses. On Friday, Sept. 27, I'll have the Neulasta growth hormone booster shot. Then I'll repeat the cycle for six times, or until I have too many side effects (most likely mouth sores that prevent me from swallowing). After I end the cycle, I'll have another CT scan to see what changes there are from my baseline CT scan.
For now, I feel as I am headed back into the toxic mire, poisoning myself to save myself. To (mis)quote young Henry:
Once more unto the breach, dear friends, once more;
Or close the cells up, make our cancer dead!
In peace, there ’s nothing so becomes a man,
As modest stillness and humility:
But when the blast of chemo blows in our ears,
Then imitate the action of the tiger;
Stiffen the sinews, summon up the blood
Disguise fair nature with hard-favour'd rage;
Then lend the eye a terrible aspect;
Let pry through the portage of the head
Like a brass cannon; let the brow o'erwhelm it
As fearfully as doth a galled rock
O'erhang and jutty his confounded base
Swill'd with the wild and wasteful ocean
Now set the teeth and stretch the nostril wide
Hold hard the breath and bend up every spirit
To his full height.
Thursday, September 19, 2013
Mets Day 524: Dose Dense MVAC Q&A
In the past few days I have exchanged a number of emails with Drs. Apolo and Aragon-Ching, and this morning I had a follow-up phone consultation with Dr. Apolo, on whether to proceed with dose dense (dd) MVAC chemotherapy. Following are my questions and their answers:
Q&A with Dr. Aragon-Ching of George Washington University:
Aragon-Ching Question 1: Dr. Apolo said that she was going to have my cancer sequenced. Could that data provide any insight into whether dose dense MVAC (or perhaps a future clinical trial) might be appropriate for me?
Aragon-Ching Answer 1: I would defer to Dr. Apolo.
Aragon-Ching Question 2: You told me that you could not identify any data comparing median overall survival of patients with mets BC who do not have dose dense chemo to those who do. Where could I find data on those who do not have any treatment?
Aragon-Ching Answer 2: One phase III trial comparing a salvage chemotherapy drug called vinflunine (not approved in the US, this was mainly a European trial) was compared to what we call best supportive care (no chemo) and the median overall survival was a little over 4 months (link here)
Aragon-Ching Question 3: The PET scan showed there was questionable focal uptake in the right medial hepatic lobe. Does the possibility of metastatic activity in the liver support going forward with dose dense chemo, or is it irrelevant because it is indeterminate?
Aragon-Ching Answer 3: The presence of known visceral disease is an adverse prognostic factor, compared to just adenopathy alone ... it would support treatment with chemotherapy.
Aragon-Ching Question 4: The 2001 study that you gave me (http://www.ncbi.nlm.nih.gov/pubmed/11352955) paradoxically showed that patients receiving dose dense MVAC had a somewhat higher response rate (62% to 50%) and two year survival rate (35% vs. 25%) than patients receiving regular MVAC, but that there was no statistical difference in either the overall survival rate, or time to progression of further metastases. I'm having a hard time understanding these data. Can you shed some insight on it? Also, that study was of patients who had not previously received platinum-based therapy, so it seems less applicable to me. Am I misreading it?
Aragon-Ching Answer 4: You are absolutely right in reading this...this was a neoadjuvant trial in patients never been treated with chemo (so this is not technically applicable to you) but I wanted to give you an idea of what the regimen contained & its schedule (dose dense) and it was being compared to the standard dose MVAC. Having said this, patients who undergo dose dense MVAC who have been previously treated may in fact develop more toxicities than what this paper is discussing.
Aragon-Ching Question 5: The 2012 study (http://www.ncbi.nlm.nih.gov/pubmed/22364733) found there was a 61% response rate, with 10% having a complete response. Digging deeper into the data, it appears that the positive rates are skewed by the inclusion of patients who did not have distant metastatic disease: three of the four patients who had a complete response did not have metastatic disease. For those with distant metastases, the median time to progression was 4.4 months, and median overall survival was 5.7 months. These don't sound very encouraging to me. Am I missing something?
Aragon-Ching Answer 5: This trial included all patients with metastatic sites of disease but made no distinction whether they were distant sites or not.
Q&A with Dr. Apolo of NIH's National Cancer Institute:
Apolo Question 1: Dr. Aragon-Ching said that, if I was to proceed with dose dense MVAC, it could disqualify me from later clinical trials. You and I had discussed several possible trials; would any of those be closed off if I proceeded?
Apolo Answer 1: You would still be eligible for my clinical trials if you have proceed with MVAC.
Apolo Question 2: Even if those trial were foreclosed to me, would you still recommend my proceeding with dose dense MVAC?
Apolo Answer 2: Yes, but they are not
Apolo Question 3: You said that you were going to have my cancer sequenced. Has that happened yet, and if so, does that data provide any insights of what kind of therapy or trial might be the most appropriate for me?
Apolo Answer 3: I will follow up on the sequencing on Thursday when I meet with our pathologist. This may make a differences what you receive after chemo but the panel is only 50 genes, so the findings are limited. Foundation medicine has a panel with 200 genes and I think insurance
covers this. I am not sure if I can send this out from the NCI because we don’t deal with insurance but maybe Dr. Aragon-Ching can, I will ask her.
Apolo Question 4: Can you point me to data showing median overall survival of patients with mets BC who do not have dose dense chemo?
Apolo Answer 4: I have attached some pivotal papers on first line chemotherapy for metastatic disease. Including the phase 3 of (gemcitabine and cisplatin) GC vs MVAC (link here) and the PCG (paclitaxel/gem/cis) vs GC (link here). I have also including a retrospective report from France on patients that received ddMVAC after GC (link here).
Apolo Question 5: The PET scan showed there was questionable focal uptake in the right medial hepatic lobe. Does the possibility of metastatic activity in the liver support going forward with dose dense chemo, or is it irrelevant because it is indeterminate?
Apolo Answer 5: If you do have disease in the liver then ddMVAC would not be the best choice of therapy because my goal is to have you achieve a complete response (CR) with the ddMVAC. The chances that you achieve a CR are highest with lymph node disease and low with liver disease. Chemotherapy in your setting is given for palliation but you don’t have symptoms, this is Dr. Plimack's reservation. My goal is to a achieve a CR which is generally achieved in 5% of patients with GC and 20% with ddMVAC when it is given as the first chemotherapy to patients with metastatic disease. You would be given ddMVAC as your second chemotherapy BUT first in the metastatic setting. The French studied showed a CR rate of 10% with ddMVAC (in your setting). Patients that achieve a complete response have longer survivals. That being said ddMVAC has a lot of side effects and is hard to get through. I highly respect Dr. Steinberg but he is a urologist not a medical oncologist. I consulted your case with Dr. Cora Sternberg the oncologist who developed ddMVAC (I attached her original publication from 2001) (link here) and she completely agrees with me.
Apolo Question 6. Your email notes that ddMVAC would not be the best choice if I have liver disease. Given the ambiguous results from the PET scan, does it make sense to try to rule that out before embarking on ddMVAC? How would I go about doing that?
Apolo Answer 6: The PET scan is inconclusive. It's very had to tell from a PET scan whether there is metastatic activity in the liver, because the entire liver is hot. We use CT scans to tell whether there is node enlargement or tumors in the liver. The PET scan suggests that, if there was metastatic activity in your liver, it is not in the lymph nodes, but within your liver. If a subsequent CT scan showed a tumor in the liver, then you should not proceed with ddMVAC, or you should stop it if it was started.
Apolo Question 7: Thank you for consulting with Dr. Cora Sternberg, who developed the 2001 study. As I read it, that study has a paradox. On the one hand, it showed that patients receiving ddMVAC had a somewhat higher response rate (62% to 50%) and two year survival rate (35% vs. 25%) than patients receiving regular MVAC, but on the other hand, it showed that there was no statistically significant difference in either the overall survival rate, or time to progression of further metastases. I'm having a hard time reconciling these data, especially as they may apply to my situation. Does this suggest that there is a better chance that ddMVAC may provide a complete response (CR) or partial response (PR) while I have the chemo, but once the distant tumors develop, the disease moves faster, so my OS will be similar? Also, that study was of patients who had not previously received platinum-based therapy; as we know, I failed GemCis, so I'm wondering how applicable that data is to me.
Apolo Answer 7: The study does have that paradox, and we struggle with the data. The studies suggest that the rates of CR are significantly higher with ddMVAC than with regular MVAC or GC chemo, especially perioperatively. These data support ddMVAC as a second line therapy. There has never been a phase III clinical trial comparing GC to ddMVAC. We are starting that now. The data suggest that median progression-free survival for ddMVAC is 9.1 months, with regular MVAC it is 8.2 months, with GC it is 7.4 months, and with no therapy, about 5.5 months. Extrapolating from the studies, ddMVAC gives you your best chance of CR or PR.
Apolo Question 8: The 2012 French retrospective study appears to divide patients into two groups: adjuvant chemo and metastatic disease. While it found there was a 61% response rate with ddMVAC, with 10% having a complete response, it appears that the best results were obtained by patients who had adjuvant chemo but did not did not have distant metastatic disease. For those with distant metastases, the median time to progression was 4.4 months, and median overall survival was 5.7 months. Am I correct to put myself into the mets group, and anticipate a lower likelihood of CR or PR?
Apolo Answer 8: You are between the two groups. You had positive nodes after your surgery, but it has not spread systemically, and you had no distant tumors. Looking at your cancer from the lymph node that we biopsied under the microscope, it was poorly differentiated, and very aggressive. It did not have many of the characteristics of micropappillary bladder cancer. Instead, it looked like a tumor that will grow quickly. It does not look like a cancer that will be indolent, meaning that it will grow slowly.
Apolo Question 9: The 2012 taxanes study is provocative. Is adding a taxane into ddMVAC an option? Is there any downside to trying it?
Apolo Answer 9: Taxanes with ddMVAC is too toxic and is not an option.
Apolo Question 10: Boiling everything down, I'm trying to decide whether 3 months of
feeling lousy while having ddMVAC is going to be worth it. If it adds 3 months of life to the back end, but I lose three months while going through the chemo, then it seems to be a wash, and probably not worth it. If there is a reasonable prospect of getting a complete response and substantially adding more time, then it becomes more attractive. But if it's going to permanently weaken my immune system and compromise my remaining time with little likelihood of success, then I'd rather not do it. Do you agree with how I've boiled it down?
Apolo Answer 10: It's a fair way of looking at it. You may get 3 months or more on the back end, or you may not. Don't pay too much attention to the French retrospective study on toxicities, because we have learned so much on how to minimize the toxicities. I give 3 liters of hydration with the MVAC, so it can take up to 9 hours to receive the full chemo dose -- 6 hours for hydration, 3 hours for the drugs. I usually keep patients overnight unless they live very close by. Many of my patients tolerate ddMVAC very well. Most recently, I gave 5 rounds of ddMVAC to a nurse who works at the NCI hospital. She kept working while having each round, except for round 5, when she developed mouth sores and could not eat. Another recent patient lived on a farm and continued to work as a farmer while having the chemo. Each patient is different. The most common side effects are mouth sores, fatigue, and fever. You are relatively young and otherwise healthy, so you should be able to tolerate the ddMVAC well.
Apolo Question 11: I understand that, on balance, you believe that the pros substantially outweigh the cons, that I'll get through ddMVAC, and have a fair chance at either CR or PR for some period of time. I'm unclear from the literature how long the CR or PR typically lasts. It appears that, for some, it's just while the chemo is being administered, and once it stops, the disease comes back like gangbusters. For a minority of other patients, it appears that the response extends beyond the period of treatment. Is it fair to say that, in my case, there is no way of knowing whether I'll have any favorable response, but that you believe that having ddMVAC is the best way to extend my life while still maintaining a decent quality of life?
Apolo Answer 11: I would suggest proceeding with ddMVAC with Dr. Aragon-Ching. You do
not need to get restaged with Dr. Plimack, I can do it or Dr. Aragon-Ching can do it. Treating you with ddMVAC is the most aggressive option. If it were me in you shoes, I'd do ddMVAC. If you decide not proceed with the chemotherapy that's OK too, it really it is a personal choice.
Q&A with Dr. Aragon-Ching of George Washington University:
Aragon-Ching Question 1: Dr. Apolo said that she was going to have my cancer sequenced. Could that data provide any insight into whether dose dense MVAC (or perhaps a future clinical trial) might be appropriate for me?
Aragon-Ching Answer 1: I would defer to Dr. Apolo.
Aragon-Ching Question 2: You told me that you could not identify any data comparing median overall survival of patients with mets BC who do not have dose dense chemo to those who do. Where could I find data on those who do not have any treatment?
Aragon-Ching Answer 2: One phase III trial comparing a salvage chemotherapy drug called vinflunine (not approved in the US, this was mainly a European trial) was compared to what we call best supportive care (no chemo) and the median overall survival was a little over 4 months (link here)
Aragon-Ching Question 3: The PET scan showed there was questionable focal uptake in the right medial hepatic lobe. Does the possibility of metastatic activity in the liver support going forward with dose dense chemo, or is it irrelevant because it is indeterminate?
Aragon-Ching Answer 3: The presence of known visceral disease is an adverse prognostic factor, compared to just adenopathy alone ... it would support treatment with chemotherapy.
Aragon-Ching Question 4: The 2001 study that you gave me (http://www.ncbi.nlm.nih.gov/pubmed/11352955) paradoxically showed that patients receiving dose dense MVAC had a somewhat higher response rate (62% to 50%) and two year survival rate (35% vs. 25%) than patients receiving regular MVAC, but that there was no statistical difference in either the overall survival rate, or time to progression of further metastases. I'm having a hard time understanding these data. Can you shed some insight on it? Also, that study was of patients who had not previously received platinum-based therapy, so it seems less applicable to me. Am I misreading it?
Aragon-Ching Answer 4: You are absolutely right in reading this...this was a neoadjuvant trial in patients never been treated with chemo (so this is not technically applicable to you) but I wanted to give you an idea of what the regimen contained & its schedule (dose dense) and it was being compared to the standard dose MVAC. Having said this, patients who undergo dose dense MVAC who have been previously treated may in fact develop more toxicities than what this paper is discussing.
Aragon-Ching Question 5: The 2012 study (http://www.ncbi.nlm.nih.gov/pubmed/22364733) found there was a 61% response rate, with 10% having a complete response. Digging deeper into the data, it appears that the positive rates are skewed by the inclusion of patients who did not have distant metastatic disease: three of the four patients who had a complete response did not have metastatic disease. For those with distant metastases, the median time to progression was 4.4 months, and median overall survival was 5.7 months. These don't sound very encouraging to me. Am I missing something?
Aragon-Ching Answer 5: This trial included all patients with metastatic sites of disease but made no distinction whether they were distant sites or not.
Q&A with Dr. Apolo of NIH's National Cancer Institute:
Apolo Question 1: Dr. Aragon-Ching said that, if I was to proceed with dose dense MVAC, it could disqualify me from later clinical trials. You and I had discussed several possible trials; would any of those be closed off if I proceeded?
Apolo Answer 1: You would still be eligible for my clinical trials if you have proceed with MVAC.
Apolo Question 2: Even if those trial were foreclosed to me, would you still recommend my proceeding with dose dense MVAC?
Apolo Answer 2: Yes, but they are not
Apolo Question 3: You said that you were going to have my cancer sequenced. Has that happened yet, and if so, does that data provide any insights of what kind of therapy or trial might be the most appropriate for me?
Apolo Answer 3: I will follow up on the sequencing on Thursday when I meet with our pathologist. This may make a differences what you receive after chemo but the panel is only 50 genes, so the findings are limited. Foundation medicine has a panel with 200 genes and I think insurance
covers this. I am not sure if I can send this out from the NCI because we don’t deal with insurance but maybe Dr. Aragon-Ching can, I will ask her.
Apolo Question 4: Can you point me to data showing median overall survival of patients with mets BC who do not have dose dense chemo?
Apolo Answer 4: I have attached some pivotal papers on first line chemotherapy for metastatic disease. Including the phase 3 of (gemcitabine and cisplatin) GC vs MVAC (link here) and the PCG (paclitaxel/gem/cis) vs GC (link here). I have also including a retrospective report from France on patients that received ddMVAC after GC (link here).
Apolo Question 5: The PET scan showed there was questionable focal uptake in the right medial hepatic lobe. Does the possibility of metastatic activity in the liver support going forward with dose dense chemo, or is it irrelevant because it is indeterminate?
Apolo Answer 5: If you do have disease in the liver then ddMVAC would not be the best choice of therapy because my goal is to have you achieve a complete response (CR) with the ddMVAC. The chances that you achieve a CR are highest with lymph node disease and low with liver disease. Chemotherapy in your setting is given for palliation but you don’t have symptoms, this is Dr. Plimack's reservation. My goal is to a achieve a CR which is generally achieved in 5% of patients with GC and 20% with ddMVAC when it is given as the first chemotherapy to patients with metastatic disease. You would be given ddMVAC as your second chemotherapy BUT first in the metastatic setting. The French studied showed a CR rate of 10% with ddMVAC (in your setting). Patients that achieve a complete response have longer survivals. That being said ddMVAC has a lot of side effects and is hard to get through. I highly respect Dr. Steinberg but he is a urologist not a medical oncologist. I consulted your case with Dr. Cora Sternberg the oncologist who developed ddMVAC (I attached her original publication from 2001) (link here) and she completely agrees with me.
Apolo Question 6. Your email notes that ddMVAC would not be the best choice if I have liver disease. Given the ambiguous results from the PET scan, does it make sense to try to rule that out before embarking on ddMVAC? How would I go about doing that?
Apolo Answer 6: The PET scan is inconclusive. It's very had to tell from a PET scan whether there is metastatic activity in the liver, because the entire liver is hot. We use CT scans to tell whether there is node enlargement or tumors in the liver. The PET scan suggests that, if there was metastatic activity in your liver, it is not in the lymph nodes, but within your liver. If a subsequent CT scan showed a tumor in the liver, then you should not proceed with ddMVAC, or you should stop it if it was started.
Apolo Question 7: Thank you for consulting with Dr. Cora Sternberg, who developed the 2001 study. As I read it, that study has a paradox. On the one hand, it showed that patients receiving ddMVAC had a somewhat higher response rate (62% to 50%) and two year survival rate (35% vs. 25%) than patients receiving regular MVAC, but on the other hand, it showed that there was no statistically significant difference in either the overall survival rate, or time to progression of further metastases. I'm having a hard time reconciling these data, especially as they may apply to my situation. Does this suggest that there is a better chance that ddMVAC may provide a complete response (CR) or partial response (PR) while I have the chemo, but once the distant tumors develop, the disease moves faster, so my OS will be similar? Also, that study was of patients who had not previously received platinum-based therapy; as we know, I failed GemCis, so I'm wondering how applicable that data is to me.
Apolo Answer 7: The study does have that paradox, and we struggle with the data. The studies suggest that the rates of CR are significantly higher with ddMVAC than with regular MVAC or GC chemo, especially perioperatively. These data support ddMVAC as a second line therapy. There has never been a phase III clinical trial comparing GC to ddMVAC. We are starting that now. The data suggest that median progression-free survival for ddMVAC is 9.1 months, with regular MVAC it is 8.2 months, with GC it is 7.4 months, and with no therapy, about 5.5 months. Extrapolating from the studies, ddMVAC gives you your best chance of CR or PR.
Apolo Question 8: The 2012 French retrospective study appears to divide patients into two groups: adjuvant chemo and metastatic disease. While it found there was a 61% response rate with ddMVAC, with 10% having a complete response, it appears that the best results were obtained by patients who had adjuvant chemo but did not did not have distant metastatic disease. For those with distant metastases, the median time to progression was 4.4 months, and median overall survival was 5.7 months. Am I correct to put myself into the mets group, and anticipate a lower likelihood of CR or PR?
Apolo Answer 8: You are between the two groups. You had positive nodes after your surgery, but it has not spread systemically, and you had no distant tumors. Looking at your cancer from the lymph node that we biopsied under the microscope, it was poorly differentiated, and very aggressive. It did not have many of the characteristics of micropappillary bladder cancer. Instead, it looked like a tumor that will grow quickly. It does not look like a cancer that will be indolent, meaning that it will grow slowly.
Apolo Question 9: The 2012 taxanes study is provocative. Is adding a taxane into ddMVAC an option? Is there any downside to trying it?
Apolo Answer 9: Taxanes with ddMVAC is too toxic and is not an option.
Apolo Question 10: Boiling everything down, I'm trying to decide whether 3 months of
feeling lousy while having ddMVAC is going to be worth it. If it adds 3 months of life to the back end, but I lose three months while going through the chemo, then it seems to be a wash, and probably not worth it. If there is a reasonable prospect of getting a complete response and substantially adding more time, then it becomes more attractive. But if it's going to permanently weaken my immune system and compromise my remaining time with little likelihood of success, then I'd rather not do it. Do you agree with how I've boiled it down?
Apolo Answer 10: It's a fair way of looking at it. You may get 3 months or more on the back end, or you may not. Don't pay too much attention to the French retrospective study on toxicities, because we have learned so much on how to minimize the toxicities. I give 3 liters of hydration with the MVAC, so it can take up to 9 hours to receive the full chemo dose -- 6 hours for hydration, 3 hours for the drugs. I usually keep patients overnight unless they live very close by. Many of my patients tolerate ddMVAC very well. Most recently, I gave 5 rounds of ddMVAC to a nurse who works at the NCI hospital. She kept working while having each round, except for round 5, when she developed mouth sores and could not eat. Another recent patient lived on a farm and continued to work as a farmer while having the chemo. Each patient is different. The most common side effects are mouth sores, fatigue, and fever. You are relatively young and otherwise healthy, so you should be able to tolerate the ddMVAC well.
Apolo Question 11: I understand that, on balance, you believe that the pros substantially outweigh the cons, that I'll get through ddMVAC, and have a fair chance at either CR or PR for some period of time. I'm unclear from the literature how long the CR or PR typically lasts. It appears that, for some, it's just while the chemo is being administered, and once it stops, the disease comes back like gangbusters. For a minority of other patients, it appears that the response extends beyond the period of treatment. Is it fair to say that, in my case, there is no way of knowing whether I'll have any favorable response, but that you believe that having ddMVAC is the best way to extend my life while still maintaining a decent quality of life?
Apolo Answer 11: I would suggest proceeding with ddMVAC with Dr. Aragon-Ching. You do
not need to get restaged with Dr. Plimack, I can do it or Dr. Aragon-Ching can do it. Treating you with ddMVAC is the most aggressive option. If it were me in you shoes, I'd do ddMVAC. If you decide not proceed with the chemotherapy that's OK too, it really it is a personal choice.
Monday, September 16, 2013
Mets Day 522: My GW Oncologist says do ddMVAC chemo
This morning Jennifer and I met with Dr. Aragon-Ching, my clinical oncologist who supervised my GemCis chemotherapy between January and April 2012. She had received all of the information regarding last month's CT scan from Fox Chase, and my PET scan and biopsy from NIH. She also had exchanged a series of emails regarding my treatment with Dr. Apolo (NIH), Dr. Plimack (Fox Chase), and Dr. Steinberg (U. Chicago). She also had a telephone conference with Dr. Apolo, and had collected the input from the other three doctors.
Dr. Aragon-Ching reviewed what we already knew: my neoadjuvant GemCis chemo had failed; I had pathologically confirmed metastatic activity as of May 2, 2012; it had taken 15 months for a scan to detect distant metastatic activity, which had been proven by my biopsy. However, because the node was not larger than 1.5 cm on its short axis, I did not currently have "clinically significant" distant metastatic activity that would qualify me for most clinical trials. She noted that, the early detection and confirmation of my distant metastatic activity was because I had been so proactive in my treatment.
At this stage, the question is whether to have any clinical therapy. Dr. Aragon-Ching reiterated what I already knew: there is no known way to cure metastatic bladder cancer. Unlike some other cancers, such as breast cancer or lymphoma, there is no evidence that any therapy can put mets BC into remission. Thus, any treatment for mets BC cannot be considered curative, but palliative (e.g., relieving or soothing the symptoms of the cancer without effecting a cure). The issue is whether the benefits of the proposed therapy are worth the risks.
She noted that, at this point, because I do not have sufficiently large metastatic nodes, or distant solid tumors, the choices boiled down to either having "second line" chemotherapy, or doing nothing for now. Second line chemo refers to a second attempt at a different chemo regimen after the preferred chemo was tried and failed. It also is called salvage chemotherapy. In her opinion, if I was going to have any therapy at this point, the most logical choice was dose dense MVAC. This is a four drug chemo that is given every two weeks, with fewer dose delays and less toxicity. The "M" drug (methotrexate) is given on Monday, the "VAC" drugs (vinblastine, doxorubicin, and cisplatin) on Tuesday, on Wednesday I'd get a Neulastia shot (a growth hormone), then I'd have 10 days to recover before I do it again. If I was to do this, she'd recommend starting with 6 cycles over 12 weeks, and see how I'd tolerate it.
She said that the arguments for proceeding with dose dense MVAC chemo at this point were as follows: 1) there was some evidence that dose dense MVAC had a positive effect on patients who previously had failed GemCis chemo; 2) my distant mets cancer was small, and my cancer burden low, making it more likely that it might respond to chemo than later, when my cancer burden was greater; 3) I was relatively strong, had no other co-morbidities, and should be able to tolerate the chemo. She readily acknowledged that there was no established evidence that dose dense MVAC would work in my circumstances, and said that she was making her recommendation based upon her personal philosophy and experience. She also said that Dr. Apolo had come down on the side of proceeding with dose dense MVAC, although her recommendation was a soft "yes", not an emphatic one. Dr. Aragon-Ching likewise said that her own recommendation was as a result of weighing the totality of the circumstances. I was reminded of my legal practice and burdens of proof, and got the impression that, for her, having me proceed with chemo passed the preponderance of the evidence standard, but probably didn't meet the clear and convincing evidence, and certainly didn't meet the beyond a reasonable doubt standard.
Knowing that I liked to dig into the literature, Dr. Aragon-Ching gave me two articles to review about dose dense MVAC. The first article, titled Randomized phase III trial of high-dose-intensity methotrexate, vinblastine, doxorubicin, and cisplatin (MVAC) chemotherapy and recombinant human granulocyte colony-stimulating factor versus classic MVAC in advanced urothelial tract tumors: European Organization for Research and Treatment of Cancer Protocol no. 30924, is the first major study that compared regular MVAC to dose dense MVAC. It's a European study published in 2001 in the Journal of Clinical Oncology. The study paradoxically showed that patients receiving dose dense MVAC had a somewhat higher response rate (62% to 50%) and two year survival rate (35% vs. 25%) than patients receiving regular MVAC, but curiously, there was no statistical difference in either the overall survival rate, or time to progression of further metastases. The study extrapolated that patients receiving does dense MVAC were 25% less likely to relapse or die than MVAC patients.
The second study a 2012 retrospective study published in the European Journal of Cancer titled Accelerated MVAC chemotherapy in patients with advanced bladder cancer previously treated with a platinum-gemcitabine regimen. It looked at records of 45 patients who had received dose dense MVAC. It found there was a 61% response rate, with 10% having a complete response, but also showing that 69% of patients had severe toxicities, and 10% died because of the chemotherapy. Digging deeper into the data, it appears that the positive rates are skewed by the inclusion of patients who did not have distant metastatic disease: three of the four patients who had a complete response did not have metastatic disease. For those with distant median time to progression was 4.4 months, and median overall survival was 5.7 months. Ugh.
To her immense credit, Dr. Aragon-Ching explained that proceeding with dose dense MVAC at this point was an aggressive treatment, and that waiting was the most conservative option. The arguments for waiting, she said, were that 1) my disease had progressed relatively slowly (15 months from local mets to distant mets), and that it might continue to progress slowly; 2) there was no established proof that any second-line chemo would either cure, or delay, the progression of the cancer; 3) the side effects and risks of the chemo were high; and 4) proceeding with a second chemo regimen might later disqualify me from clinical trials. She said that Dr. Plimack and Dr. Steinberg both had recommended holding off on chemo.
Dr. Aragon-Ching addressed each of those arguments during our discussion. She said that the slow progression of the disease cut both ways, noting her comments re relative cancer burden. On the no established proof, she said that the best data she had was from the two studies that she gave me, and her own personal bias and experience. On the side effects, she was confident that they could be managed and tolerated. On the possible disqualification of clinical trials, she said that should not be a deciding factor, since clinical trials wee more for the research than actually helping the patient.
I asked her of the overall survival for patients receiving dose dense MVAC vs. no treatment. She said that there never had been a Phase III clinical trial comparing the two, and could not give that data. I also noted that we had a new baby in he house, and whether either her or I would be at increased risk because of the chemo. She said that there was no risk for the baby, but since they could be little germ magnets, when I was doing chemo, I should want to stay clear of the baby if she was sick.
So the bidding stands at two doctors for dose dense MVAC, and two doctors against. I told Dr. Aragon-Ching that I wanted to review the literature, and go forward with my appointment at Fox Chase on October 1. She understood my caution and supported my decision to have the next scan. She said she would confirm that my insurance would pay for the dose dense MVAC, but would not schedule me for treatment until I gave the go ahead.
When I came home, I discussed these conflicting recommendations with my daughter, a fourth-year medical school student. She came up with the following questions: 1) Are there any data comparing the median overall survival rates of those receiving dose dense MVAC vs. no treatment? 2) Could NIH's DNA sequencing of my cancer give any insights regarding potential treatment options? For example, if the sequencing suggests that certain treatments of clinical trials might be beneficial, does it make sense to go ahead with dose dense MVAC if that might later preclude participation in those trials? Good questions; I'll follow up. I'm also going to do some more reading and see what else I can find.
I'm not going to make a decision until after I meet with Dr. Plimack on October 1. For now, I'm not persuaded that dose dense chemo will provide a greater benefit. If it buys me three more months at the back end, but causes me to be sick for three more months now, is that worth it? Probably not.
Dr. Aragon-Ching reviewed what we already knew: my neoadjuvant GemCis chemo had failed; I had pathologically confirmed metastatic activity as of May 2, 2012; it had taken 15 months for a scan to detect distant metastatic activity, which had been proven by my biopsy. However, because the node was not larger than 1.5 cm on its short axis, I did not currently have "clinically significant" distant metastatic activity that would qualify me for most clinical trials. She noted that, the early detection and confirmation of my distant metastatic activity was because I had been so proactive in my treatment.
At this stage, the question is whether to have any clinical therapy. Dr. Aragon-Ching reiterated what I already knew: there is no known way to cure metastatic bladder cancer. Unlike some other cancers, such as breast cancer or lymphoma, there is no evidence that any therapy can put mets BC into remission. Thus, any treatment for mets BC cannot be considered curative, but palliative (e.g., relieving or soothing the symptoms of the cancer without effecting a cure). The issue is whether the benefits of the proposed therapy are worth the risks.
She noted that, at this point, because I do not have sufficiently large metastatic nodes, or distant solid tumors, the choices boiled down to either having "second line" chemotherapy, or doing nothing for now. Second line chemo refers to a second attempt at a different chemo regimen after the preferred chemo was tried and failed. It also is called salvage chemotherapy. In her opinion, if I was going to have any therapy at this point, the most logical choice was dose dense MVAC. This is a four drug chemo that is given every two weeks, with fewer dose delays and less toxicity. The "M" drug (methotrexate) is given on Monday, the "VAC" drugs (vinblastine, doxorubicin, and cisplatin) on Tuesday, on Wednesday I'd get a Neulastia shot (a growth hormone), then I'd have 10 days to recover before I do it again. If I was to do this, she'd recommend starting with 6 cycles over 12 weeks, and see how I'd tolerate it.
She said that the arguments for proceeding with dose dense MVAC chemo at this point were as follows: 1) there was some evidence that dose dense MVAC had a positive effect on patients who previously had failed GemCis chemo; 2) my distant mets cancer was small, and my cancer burden low, making it more likely that it might respond to chemo than later, when my cancer burden was greater; 3) I was relatively strong, had no other co-morbidities, and should be able to tolerate the chemo. She readily acknowledged that there was no established evidence that dose dense MVAC would work in my circumstances, and said that she was making her recommendation based upon her personal philosophy and experience. She also said that Dr. Apolo had come down on the side of proceeding with dose dense MVAC, although her recommendation was a soft "yes", not an emphatic one. Dr. Aragon-Ching likewise said that her own recommendation was as a result of weighing the totality of the circumstances. I was reminded of my legal practice and burdens of proof, and got the impression that, for her, having me proceed with chemo passed the preponderance of the evidence standard, but probably didn't meet the clear and convincing evidence, and certainly didn't meet the beyond a reasonable doubt standard.
Knowing that I liked to dig into the literature, Dr. Aragon-Ching gave me two articles to review about dose dense MVAC. The first article, titled Randomized phase III trial of high-dose-intensity methotrexate, vinblastine, doxorubicin, and cisplatin (MVAC) chemotherapy and recombinant human granulocyte colony-stimulating factor versus classic MVAC in advanced urothelial tract tumors: European Organization for Research and Treatment of Cancer Protocol no. 30924, is the first major study that compared regular MVAC to dose dense MVAC. It's a European study published in 2001 in the Journal of Clinical Oncology. The study paradoxically showed that patients receiving dose dense MVAC had a somewhat higher response rate (62% to 50%) and two year survival rate (35% vs. 25%) than patients receiving regular MVAC, but curiously, there was no statistical difference in either the overall survival rate, or time to progression of further metastases. The study extrapolated that patients receiving does dense MVAC were 25% less likely to relapse or die than MVAC patients.
The second study a 2012 retrospective study published in the European Journal of Cancer titled Accelerated MVAC chemotherapy in patients with advanced bladder cancer previously treated with a platinum-gemcitabine regimen. It looked at records of 45 patients who had received dose dense MVAC. It found there was a 61% response rate, with 10% having a complete response, but also showing that 69% of patients had severe toxicities, and 10% died because of the chemotherapy. Digging deeper into the data, it appears that the positive rates are skewed by the inclusion of patients who did not have distant metastatic disease: three of the four patients who had a complete response did not have metastatic disease. For those with distant median time to progression was 4.4 months, and median overall survival was 5.7 months. Ugh.
To her immense credit, Dr. Aragon-Ching explained that proceeding with dose dense MVAC at this point was an aggressive treatment, and that waiting was the most conservative option. The arguments for waiting, she said, were that 1) my disease had progressed relatively slowly (15 months from local mets to distant mets), and that it might continue to progress slowly; 2) there was no established proof that any second-line chemo would either cure, or delay, the progression of the cancer; 3) the side effects and risks of the chemo were high; and 4) proceeding with a second chemo regimen might later disqualify me from clinical trials. She said that Dr. Plimack and Dr. Steinberg both had recommended holding off on chemo.
Dr. Aragon-Ching addressed each of those arguments during our discussion. She said that the slow progression of the disease cut both ways, noting her comments re relative cancer burden. On the no established proof, she said that the best data she had was from the two studies that she gave me, and her own personal bias and experience. On the side effects, she was confident that they could be managed and tolerated. On the possible disqualification of clinical trials, she said that should not be a deciding factor, since clinical trials wee more for the research than actually helping the patient.
I asked her of the overall survival for patients receiving dose dense MVAC vs. no treatment. She said that there never had been a Phase III clinical trial comparing the two, and could not give that data. I also noted that we had a new baby in he house, and whether either her or I would be at increased risk because of the chemo. She said that there was no risk for the baby, but since they could be little germ magnets, when I was doing chemo, I should want to stay clear of the baby if she was sick.
So the bidding stands at two doctors for dose dense MVAC, and two doctors against. I told Dr. Aragon-Ching that I wanted to review the literature, and go forward with my appointment at Fox Chase on October 1. She understood my caution and supported my decision to have the next scan. She said she would confirm that my insurance would pay for the dose dense MVAC, but would not schedule me for treatment until I gave the go ahead.
When I came home, I discussed these conflicting recommendations with my daughter, a fourth-year medical school student. She came up with the following questions: 1) Are there any data comparing the median overall survival rates of those receiving dose dense MVAC vs. no treatment? 2) Could NIH's DNA sequencing of my cancer give any insights regarding potential treatment options? For example, if the sequencing suggests that certain treatments of clinical trials might be beneficial, does it make sense to go ahead with dose dense MVAC if that might later preclude participation in those trials? Good questions; I'll follow up. I'm also going to do some more reading and see what else I can find.
I'm not going to make a decision until after I meet with Dr. Plimack on October 1. For now, I'm not persuaded that dose dense chemo will provide a greater benefit. If it buys me three more months at the back end, but causes me to be sick for three more months now, is that worth it? Probably not.
Saturday, September 14, 2013
Mets Day 520 - Officially a Grandpa
Yesterday afternoon my 25 year old daughter, Chelsea, gave birth to her first child, and my first grandchild. My granddaughter is has a big head (of course), a strong cry, and a piercing stare. All is well with everyone involved.
Chelsea and I had agreed that during the actual delivery, only the doctor, her husband, and Jennifer should be present. I sat in the room but on on the other side of curtain, and listened, as the doctor was giving instructions, Jennifer was counting, Josh was reassuring his wife, and Chelsea was alternating between pushing and catching her breath. I had a quiet conversation with God as this went on for about an hour. I realized that, in many ways, the curtain was like a veil separating me from my family. I could sense their presence, send my prayers and light and love to my daughter, and experience the event, but I was not physically present.
Death will be like this, I believe. My soul, and all that I am, will continue on. I will not be physically present, but still will be in their presence, will be able to send my prayers and light and love to my family, and experience their joy and sorrows. As Sullivan Ballou wrote to his wife the week before he died in the first battle of Bull Run, "I shall always be near you; in the gladdest days and in the darkest nights . . . always, always, and if there be a soft breeze upon your cheek, it shall be my breath, as the cool air fans your throbbing temple, it shall be my spirit passing by. [D]o not mourn me dead; think I am gone and wait for thee, for we shall meet again."
Holding my granddaughter, I felt great joy and rejoicing in my posterity. The next generation of my family has started. Life continues on.
Chelsea and I had agreed that during the actual delivery, only the doctor, her husband, and Jennifer should be present. I sat in the room but on on the other side of curtain, and listened, as the doctor was giving instructions, Jennifer was counting, Josh was reassuring his wife, and Chelsea was alternating between pushing and catching her breath. I had a quiet conversation with God as this went on for about an hour. I realized that, in many ways, the curtain was like a veil separating me from my family. I could sense their presence, send my prayers and light and love to my daughter, and experience the event, but I was not physically present.
Death will be like this, I believe. My soul, and all that I am, will continue on. I will not be physically present, but still will be in their presence, will be able to send my prayers and light and love to my family, and experience their joy and sorrows. As Sullivan Ballou wrote to his wife the week before he died in the first battle of Bull Run, "I shall always be near you; in the gladdest days and in the darkest nights . . . always, always, and if there be a soft breeze upon your cheek, it shall be my breath, as the cool air fans your throbbing temple, it shall be my spirit passing by. [D]o not mourn me dead; think I am gone and wait for thee, for we shall meet again."
Holding my granddaughter, I felt great joy and rejoicing in my posterity. The next generation of my family has started. Life continues on.
Wednesday, September 11, 2013
Mets Day 517: My Fox Chase oncologist says don't do ddMVAC chemo
Dr. Plimack, the oncologist from Fox Chase who has been running my post-RC scans, called me this morning. I'd emailed her on Monday night, after I spoke with Dr. Apolo, updating her on the PET and biopsy results, and asked for her opinion on whether I should get chemo or some other treatment, or do nothing.
She told me that it was unusual to have a single positive node that was so high in my chest, and so small. She said that having whole-body chemo was probably not a good idea, for three reasons: 1) Platinium based chemo did not work for me before, so there is little reason to think it would work again. 2) There is very little evidence that adjuvant chemo helps extend life for those with mets BC, and in the meantime, it can make the days that remain more miserable. In other words, she doesn't think that chemo will cure me of mets BC, and probably won't slow the progression either. 3) My progression to distant mets has been relatively slow -- 16 months since the nodes outside my bladder were detected by CT scan, and 15 months since my RC. That suggests that maybe my additional mets progression may not be that fast. She also said that the micropapillary bladder cancer that I have does not necessarily progress faster once it's mets -- it's just the most aggressive to gt out of the bladder, since it thrives on bladder muscle tissue. Once it's out, micropap mets patients don't die any faster than normal mets BC patients. This was news to me.
Dr. Plimack said that the decision of whether to have adjuvant chemo is very much an art, and not a science. It varies with each patient, and often with each doctor. Dr. Plimack's philosophy is to not do chemotherapy prophylactically, and in the absence of good evidence to do something, don't do it.
She said that dose dense MVAC is very hard on the system. She's never had patients tolerate more than 12 does. I don't want to be sick as a dog with a hard type of chemo if there is little evidence that it works. She said that triple chemo with a taxene can be tolerated longer, perhaps as much as a year, but the evidence for that is limited.
We also talked about clinical trials. She said that clinical trials require a measurable disease (e.g., a node with a short axis of 1.5 cm or larger), so they can measure whether the experiment worked. Makes sense: with no cheese, no one knows why the mouse wandered through the maze. She suggested that we continue with the scans and see if more nodes are enlarged. We wouldn't need another biopsy, because we already know I've got systemic cancer in my lymphatic system.
She suggested that I read up about MK-3475, an experimental anti-PD1 antibody that Merck is researching. It's also called lambrolizumab. According to this article on Cancer Commons, the drug blocks activity of the programmed death 1 (PD-1) molecule, an immune checkpoint receptor found on a type of white blood cell called a ‘T cell.’ T cells fight infections in our bodies and also facilitate the body’s attack on tumors. The PD-1 molecule on T cells interacts with another molecule, the programmed death 1 ligand (PD-L1) that fits with PD-1 like a lock and key. This interaction helps to modulate the immune response of T cells to various stimuli, including infections. PD-L1 is found on cells throughout the body, but tumor cells can also express PD-L1, resulting in a dampened response of the immune system to the tumor. Anti-PD1 antibodies block the interaction between PD1 and PD-L1 to boost T-cell activity in response to tumors.
MK-3475 has shown promising activity in other types of cancers, especially melanoma. Here is a link to a clinical trial that is testing MK-3475 in patients with progressive locally advanced or metastatic carcinoma of any type. Dr. Plimack said that the drug is given by IV every two weeks. Preliminary studies have shown that some patients have tumor shrinkage that may be sustained even after the trial treatment ends.
As I type this, I am mentally rolling my eyes at all of the clinical trial choices. Bladder cancer has been studied for so many years, with so little success. There hasn't been a new drug approved for bladder cancer in over 20 years. It's such a complex beast, and so unlike the more straightforward cancers like breast or prostate cancer. Maybe one of these clinical trials might be the magic bullet for bladder cancer, but it's highly unlikely. I'll probably participate in one or more trials, but I'm not holding my breath. I doubt if I'll find cheese at the end of my maze.
She told me that it was unusual to have a single positive node that was so high in my chest, and so small. She said that having whole-body chemo was probably not a good idea, for three reasons: 1) Platinium based chemo did not work for me before, so there is little reason to think it would work again. 2) There is very little evidence that adjuvant chemo helps extend life for those with mets BC, and in the meantime, it can make the days that remain more miserable. In other words, she doesn't think that chemo will cure me of mets BC, and probably won't slow the progression either. 3) My progression to distant mets has been relatively slow -- 16 months since the nodes outside my bladder were detected by CT scan, and 15 months since my RC. That suggests that maybe my additional mets progression may not be that fast. She also said that the micropapillary bladder cancer that I have does not necessarily progress faster once it's mets -- it's just the most aggressive to gt out of the bladder, since it thrives on bladder muscle tissue. Once it's out, micropap mets patients don't die any faster than normal mets BC patients. This was news to me.
Dr. Plimack said that the decision of whether to have adjuvant chemo is very much an art, and not a science. It varies with each patient, and often with each doctor. Dr. Plimack's philosophy is to not do chemotherapy prophylactically, and in the absence of good evidence to do something, don't do it.
She said that dose dense MVAC is very hard on the system. She's never had patients tolerate more than 12 does. I don't want to be sick as a dog with a hard type of chemo if there is little evidence that it works. She said that triple chemo with a taxene can be tolerated longer, perhaps as much as a year, but the evidence for that is limited.
We also talked about clinical trials. She said that clinical trials require a measurable disease (e.g., a node with a short axis of 1.5 cm or larger), so they can measure whether the experiment worked. Makes sense: with no cheese, no one knows why the mouse wandered through the maze. She suggested that we continue with the scans and see if more nodes are enlarged. We wouldn't need another biopsy, because we already know I've got systemic cancer in my lymphatic system.
She suggested that I read up about MK-3475, an experimental anti-PD1 antibody that Merck is researching. It's also called lambrolizumab. According to this article on Cancer Commons, the drug blocks activity of the programmed death 1 (PD-1) molecule, an immune checkpoint receptor found on a type of white blood cell called a ‘T cell.’ T cells fight infections in our bodies and also facilitate the body’s attack on tumors. The PD-1 molecule on T cells interacts with another molecule, the programmed death 1 ligand (PD-L1) that fits with PD-1 like a lock and key. This interaction helps to modulate the immune response of T cells to various stimuli, including infections. PD-L1 is found on cells throughout the body, but tumor cells can also express PD-L1, resulting in a dampened response of the immune system to the tumor. Anti-PD1 antibodies block the interaction between PD1 and PD-L1 to boost T-cell activity in response to tumors.
MK-3475 has shown promising activity in other types of cancers, especially melanoma. Here is a link to a clinical trial that is testing MK-3475 in patients with progressive locally advanced or metastatic carcinoma of any type. Dr. Plimack said that the drug is given by IV every two weeks. Preliminary studies have shown that some patients have tumor shrinkage that may be sustained even after the trial treatment ends.
As I type this, I am mentally rolling my eyes at all of the clinical trial choices. Bladder cancer has been studied for so many years, with so little success. There hasn't been a new drug approved for bladder cancer in over 20 years. It's such a complex beast, and so unlike the more straightforward cancers like breast or prostate cancer. Maybe one of these clinical trials might be the magic bullet for bladder cancer, but it's highly unlikely. I'll probably participate in one or more trials, but I'm not holding my breath. I doubt if I'll find cheese at the end of my maze.
Monday, September 9, 2013
Mets Day 515: biopsy positive for distant mets
Dr. Apolo just called a few minutes ago to tell me that the pathology from last Thursday's biopsy was
positive for metastatic bladder cancer. Not unexpected, but the news still sucks.
We talked for while about my treatment options. She said that the mets was unresectable, meaning that it can't be removed, and likely will show up in additional lymph nodes as time goes on. Humans have 500-600 lymph nodes, and they can't all be removed.
She is going to have my cancer sequenced in their DNA machine, and that might give her some additional insights into how many genetic abnormalities there are in my cancer. (BC usually has a lot.)
We talked about clinical trials. She said that, until the short axis of a lymph node could be measured to be over 1.5 cm in size, I would not be eligible for the clinical trials that she would most
inclined to recommend. One of these trials is a study of Cabozanitinib (XL184), and consists of me taking a pill with an experimental compound so see if it inhibits the cancer blood
supply. The trial is not currently recruiting patients, but she'd be able to slip me into it. Another trial uses AdHER2/neu dendritic cell vaccine, which is a custom-made experimental vaccine using the patient's own immune cells.
She also recommended that I consult with my clinical oncologist re chemo
options. I asked Dr. Apolo for her thoughts of whether to proceed which adjuvant chemo at
this point, and she said that, while it's a difficult decision, she'd lean
towards doing it. She said that she would not recommend
re-doing GemCis, but would consider other regimens. I didn't catch all of the
details, but one was dose-dense MVAC, which is MVAC but given the non-traditional way (every 2 weeks
with growth factor support) which is better tolerated and has a
higher complete response rate over MVAC. Another chemo option is triplet chemo,
perhaps with a taxene. I've emailed Dr. Aragon-Ching to request an appointment, and she promptly responded with my seeing her on Monday, Sept. 16.
Dr. Apolo also said that I should continue going to Fox Chase Cancer Center for the CT scans, and should ask Dr. Plimack of her recommendations. My next scan is October 1. The three of them will put their heads together and see what vile concoction they can brew. Double, double, toil and trouble . . . .
I asked Dr. Apolo about the median data for formation of solid secondary tumors and morbidity. While cautioning me that statistics are not a predictor of what will happen to me, and that her information was only the mid-point for patients with advanced bladder cancer, she said that, of patients who received treatment, the average time for the formation of solid secondary tumors was 7 months, and the average time until death was 14 months. Patients who do not get treatment have shorter median times.
I also asked about the actual causes of death. I had assumed that it was organ failure. Dr. Apolo said that was not the case. Instead, the spreading cancer releases various types of toxins that cause fatigue, loss of appetite, lack of motion, which in turn leads to further complications, increasingly poor performance, and eventually death. Various types of blockages can also occur.
Looks like 2014 is not going to be easy.
Dr. Apolo also said that I should continue going to Fox Chase Cancer Center for the CT scans, and should ask Dr. Plimack of her recommendations. My next scan is October 1. The three of them will put their heads together and see what vile concoction they can brew. Double, double, toil and trouble . . . .
I asked Dr. Apolo about the median data for formation of solid secondary tumors and morbidity. While cautioning me that statistics are not a predictor of what will happen to me, and that her information was only the mid-point for patients with advanced bladder cancer, she said that, of patients who received treatment, the average time for the formation of solid secondary tumors was 7 months, and the average time until death was 14 months. Patients who do not get treatment have shorter median times.
I also asked about the actual causes of death. I had assumed that it was organ failure. Dr. Apolo said that was not the case. Instead, the spreading cancer releases various types of toxins that cause fatigue, loss of appetite, lack of motion, which in turn leads to further complications, increasingly poor performance, and eventually death. Various types of blockages can also occur.
Looks like 2014 is not going to be easy.
Friday, September 6, 2013
Mets Day 512: Advice to fellow BC warriors
From time to time other people with bladder cancer will stumble across my blog and reach out to me, and we will engage in an email correspondence sharing thoughts about our common disease, and treatment options. One example is a firefighter from North Carolina who was diagnosed with micropapillary bladder cancer. A CT scan showed positive nodes outside of his bladder. He went forward with a radical cystectomy
Yesterday he emailed me the following:
I responded with the following, which I am posting here because it may be of interest to other BC warriors:
Yesterday he emailed me the following:
I have been following your blog. I read today's post and sounds like they are treating you well up there in Maryland. Help me out here. I am 30 days post RC. Remember my DX was Micro 9 positive nodes, a lot like you. Met with Onco today, he says DDMVAC, he want to start after a CT In 3 weeks. I am still over 20 lbs light, weighing in at a whopping 132. Can you imagine what I will look like after the treatments? My wife and I cannot see things worse than they are right now. Maybe the CT will be useful but I am undecided as of yet on the chemo. The doc danced around every one of my percentage question, unable to get any real stat's.from him at all. Speaks loudly to me that not much chance of a benefit.
I responded with the following, which I am posting here because it may be of interest to other BC warriors:
The best thing that I could recommend is that you get a second opinion from a major cancer center. See this link: http://cancerguide.org/second_opinion.html. Cleveland Clinic has an on-line consultation option; Hopkins also has a second opinion offering that may not require travel. MD Anderson wants you to travel to Houston. I'm not sure about Sloan-Kettering in NY. Oncologists at a major cancer center should be able to answer all of your questions.Metastatic bladder cancer is a strange and ferocious disease. There is no proven treatment, and no cure. Because there is little chance of a physical cure, the primary battle becomes psychological: How will a BC warrior with mets choose to live? What are your motivations? What do you hope to accomplish? Will you turn inward, withdraw, and give up? Will you turn outward and seek to help others? Will you make any changes?
Here is a list of great questions to ask your doctor, especially under section III. http://blcwebcafe.org/content/view/101/111/lang,english/. Print them out and insist on answers. Note than no doctor can say exactly what will happen to you, and most hate giving odds, but they should be able to tell you what the studies have shown.
Here is a good article about chemo options: http://blcwebcafe.org/content/view/116/126/lang,english/. MVAC was the standard of care until around 2005. Since then, many doctors have switched to platinum-based chemo, such as cisplatin. A 2011 review article (available at http://www.ncbi.nlm.nih.gov/pubmed/22117153) says that "The first-line therapy is cisplatin-based chemotherapy with the response rate approximately 50%. Approximately 30-50% of the patients are unsuitable for cisplatin, and there is no standard of care for this patient population. There is no standard second-line treatment." Are you a patient who is "unsuitable for cisplatin"? If so, why? MVAC is an older chemo regimen with more side effects than cisplatin. Cisplatin is generally considered a better substitute than MVAC.
I think that this article at the Bladder Cancer WebCafe on metastatic cancer is very helpful: http://blcwebcafe.org/metatcc.asp. Note that this article is discussing secondary tumors, which you don't have (it's what I'm dealing with right now).
There is no established chemo regimen for patients like you (or me) who had positive nodes and are post-RC. In other words, studies measuring whether or not adjuvant chemo helps have not shown a clear benefit. Maybe it works, maybe it doesn't. Since I had failed my ne-adjuvant chemo, my docs didn't see a point to trying adjuvant chemo before I had any secondary metastases. I don't remember if you already had neoadjuvant chemo - if you did, I would not be inclined to do adjuvant chemo. If you didn't, then maybe it might be right. That's got to be a decision between you and your docs. Get a second opinion, ask lots of questions, then trust your gut.
You should start gaining weight in about 2 weeks (6 weeks post-RC). Your appetite should be coming back around now. Take things one day at a time. Remember that, until (and unless) your BC travels though your lymphatic system, latches onto another place, and starts growing, it's not going to hurt you. That might happen in 6 months, it might happen in 15 months (like me), or it might never happen (about 12% of the time). Enjoy each day that you have.
Thursday, September 5, 2013
Mets Day 511: Biopsy at NIH
Jennifer and I arrived at NIH at 6:45 am. NIH security
procedures require each guest to exit the car while it is hand searched and
screened for explosives. Each person must pass through a metal detector,
then your license is scanned and an NIH guest ID created. Only then can
you proceed to the parking area. It usually takes about 15 minutes.
We got up to phlebotomy a bit after 7 am, where I gave 8 vials of
blood. We then went on to Interventional
Radiology, where we waited.
At 8:05 am, Chelsea telephoned to say that she thought that her water
had broken and was going to the hospital to be checked out. I wished her good luck and asked that she let
us know what was going on.
As soon as I got off the phone with Chelsea, we were called
back. We met Dr. Chang, the senior IR at
NIH, who told us that he had consulted with Dr. Apolo and Dr. Wood, and that he would
be doing the biopsy. We were surprised,
since we thought Dr. Wood was going to do the procedure. Dr. Chang assured us that he ready to do
it. He called up the images from the CT
and PET scans, and started muttering about how small the node was. Jennifer and I kept looking at each other
with worried expressions. After a few
minutes of muttering, Dr. Chang stood up and said “let’s go” and walked down the
hall. The nurse had me take off my shirt
and put on a gown, and I blew a kiss to Jennifer and I walked into the OR.
The nurse accessed my
port, started a saline drip, then put on a nasal O2 line. Meanwhile, Dr. Change was pressing an ultrasound
unit against the left side of my neck and top of my chest, searching for the
best way to access the enlarged node.
After a few moments, he was satisfied, and nodded to the nurse to add
some sedative to my IV. I remained
conscious throughout the procedure, but felt no pain. I listened as Dr. Chang first took a fine
needle aspiration biopsy, then took three core needle samples. There was a loud snap each time he cut a
section of the node. I was on the table
for less than an hour.
I was wheeled to the day hospital to be monitored for a
couple of hours to make sure everything was ok, including eating and drinking. I ordered breakfast, and the omelet was a
great example of bad hospital food.
Jennifer shivered under an A/C vent until a nurse brought her a heated
blanket, and we took turns dozing and texting Chelsea.
While her ultrasound showed a marked decrease in amniotic fluid, she was
not leaking on an ongoing basis, and was showing no signs of being in labor.
I was sent home after a couple of hours, as was
Chelsea. I won’t get the results of the
biopsy until sometime next week. I might
become a grandpa first, which is fine with me.
The links of my family chain continue to be forged, and I can have joy
in my posterity.
Subscribe to:
Posts (Atom)