Today I had another CT at Huntsman's Farmington Center. Once again, the ordered did not include a neck scan. Once again, while laying on the table I asked the tech to add it in and, once again, it was done. I made a point of mentioning it to Dr. Maugham's, who apologized and said he'd get it right next time. I have yet to receive all of my CT scan results -- by the time I left, only the abdomen and pelvis scan had been read, which showed no mets. But since I haven't had any mets in my abdomen and pelvis since May 2012, the NED reading of that part of my body was no surprise. Its the chest and neck where the real risk lies.
Dr. Maughan and I also spoke of how I'd noticed more of a rash on my calves, scalp, face, and occasionally on my shoulders. The rash is a low-grade indication of a manifestation of dermal toxicity. I've had an increase of itching, especially on the backs of my calves. It's still grade 1 and a minor side effect. When I get into a spa or sauna, my calves itch like crazy until the skin gets warmed up. I think it's in part due to the drier climate in Northern Utah. I occasionally use a heavy lotion such as Cetaphil, which helps for a day or so. But I'll be monitoring it. May labs were 5x5. My infusion of nivolumab likewise was routine. On the way out I scheduled my next three appointments, each 4 weeks apart.
I've also been planning Utah's first ever BCAN walk to end bladder cancer. I'm planning to hold it on Saturday morning, May 4, in Memory Grove Park in Salt Lake City. You can register to attend, or just make a donation, by clicking on the walk link. Spread the word! The bright orange BCAN walk t-shirts are also useful during deer hunting season.
Ken,
ReplyDeleteI really appreciate your blog. I have had it bookmarked since 2017 (I think) when I sent you a message on BCAN forum and you gave a very thorough, thoughtful response and also linked me to this blog. I just realized today that I have an account on this and could subscribe to it!
Anyway, I've been extra stressed lately due to the slowly enlarging lymph nodes in my mesenteric & groin regions in the past 3-4 scans (a year or less worth). I have more scans coming up in a few weeks and it's really been weighing on my mind this time...I'm somewhat anxious that if they have continued to grow I will be recommended to change my treatment from Keytruda to something like Enfortumab Vedotin. While I'm very excited about the possibilities of this drug in treating metastatic urothelial carcinoma (mine is micro-papillary...ugh), I don't want to have to use it anytime soon. I want to keep it on the backburner as long as possible.
I have two questions for you. 1) I am followed by a local oncologist here in WV and an oncologist at Cleveland Clinic. I have been on the NCI web site and I don't see that Cleveland Clinic is affiliated with them, which is surprising to me. Do you think it's important enough to be NCI affiliated that I should find an oncologist at a hospital who is? 2) I'm somewhat confused as to how to look at the lymph nodes. On one hand, it's cancer in my body that has shown up while I'm on Keytruda. On the other hand, it has stayed in the same area and hasn't moved to any other regions or organs in all of the scans. My docs, for each of the last 3 scans, have told me that I should continue on the Keytruda because the cancer is growing slowly and hasn't spread elsewhere (aside from the nodes) and because I am tolerating the treatment well. I have been on it just over a year and a half after chemo failed. My doc at Cleveland Clinic brought up Enfortumab Vedotin as my next step, but said that I will need to have measurable disease before we talk about going that route. I guess my concern is that I'm continuing on the same treatment while these nodes slowly grow...I don't want to stop this treatment and "use it up" any sooner than necessary, but I also don't want to miss my chance of giving EV the best shot at working. How does any of this mesh with what you've been through? You obviously read a lot and speak to docs at a lot of places so you may have a different perspective than me...does this seem to jibe to you?
I'm 39 years old with a 2 year old son and a 3 month old son. I'm going to do everything humanly possible to last as long as I can for these two boys...I can't imagine a better possible motivation.
Thanks in advance for any time you spend reading and/or responding to this.
I'm glad you are still puttering along. It sounds like you have relatively stable disease that has not yet migrated out of the nodes in your abdomen. The MP variant is very aggressive as you know -- I likewise have MP -- so you are correct to be vigilant.
ReplyDeleteYour current treatment plan seems reasonable. Cleveland Clinic is an NCI Center (through Case Western Medical School) and is one of the premier programs in the US. I don't think you'll get bad advice there. The idea is to stick with single agent immunotherapy until your disease is progressing and you have solid tumors of greater than 1.5 cm in the nodes, or greater than 1 cm elsewhere. At that point you are eligible to enter a clinical trial. The range of post-single agent immunotherapies is rapidly changing. Each semi-annual meeting of ASCO seems to bring new announcements. That's why it's so important that you are plugged into an NCI center, because those oncologists usually attend the ASCO meetings and keep current on the latest data. Don't worry about losing the chance to get EV - there are going to be trials of that combination for years. What might change in the meantime is whether there are other combinations that might be even better, or there is better analytical ability of your tumor's genome to help predict what therapy might be best for you.
Bottom line: continue with your immunotherapy and your regular scans until it stops working and you have active tumor growth. Note that in the past 12 months I've had active tumor growth in both a supraclavicular node (up to 1.9 cm) and in my lung (up to 8 mm, currently 5 mm). I'm nonetheless sticking with single agent immunotherapy because I'm ok with having stable disease; the growth rates are not alarming; the mets are not adversely affecting my life; I'm used to the idea of playing cancer whack-a-mole; and I'd like to wait as long as I can before moving to combination therapies, which likely will have greater side effects. If and when I do go to a combination regimen, I'll be seeking the opinion of doctors at three NCI centers: my current clinician at Huntsman Cancer Center in SLC; my former clinician at Johns Hopkins (who also trained my current clinician), and Andrea Apolo, the head of bladder cancer research at NIH's NCI, who has been following my case for 7 years. Between the tree of them, I'm confident I'll have the universe of reasonable treatment options presented to me. We'll consider the pros and cons, I'll see if they form a consensus, and then I'll make my decision.
I'm fortunate to have developed such a good resource of doctors. If you are happy with your local clinical and CC, then stick with them. But if you want a third opinion (when you have solid tumors and need to make the decision), then consider making an appointment with Dr. Apolo and make the drive to DC. Her contact info is on the NIH web page.
Meanwhile, enjoy life and don't worry about what you can't control, such as the weather, Trump's tweets, or your cancer.
Thank you so much for the response. That's something nobody has ever really discussed with me as a way of looking at it, "stable disease." Do you believe that this comes from effectiveness of the drug or some other factor? One more question I do have is at what size should I become alarmed with nodes if it's not spread elsewhere. My assumption when I started was that when there was sign of growth in nodes that I would be switching therapy, as all they said when I got it was that I would get Keytruda until disease progression or inability to tolerate it. I'm comfortable with my docs' plan so far but I've never had a good explanation of what point it is when it's considered that "next level" (for lack of a better phrase) and needs different action.
DeleteThank you for the recommendation of Dr. Apolo. I may contact her anyway as it sounds like she would be a good person to have on my team.
The NCI definition of "stable disease" is "Cancer that is neither decreasing nor increasing in extent or severity" (https://www.cancer.gov/publications/dictionaries/cancer-terms/def/stable-disease). Since May 2012, when I was confirmed Stage IV. I've assessed my cancer journey using the following benchmarks:
ReplyDeleteNED: no evidence of disease. Testing doesn't show any cancer, but you can assume it's still lurking somewhere. Not the same thing as remission.
CR: Complete Response. All active tumors are gone due to whatever therapeutic treatment. AKA remission.
PR: Partial Response: Tumors have shrunk more than 25% (some doctors use 30%, others use 50%; many will aggregate the mass of all tumors together, then compare that total to earlier measurements. Not as god as CR, but better than stable disease.
Stable disease: No shrinking, growing, or spreading to other organs. An ok place to be as long as the tumors are not materially interfering with your quality of life.
Active growth: Increase in tumor size by more than 25-50% since the last scan. Can be divided into active growth within the same location (e.g., the lymphatic system), or active growth and spreading to other organs (the worst kind of news).
I've experienced every level on this list. Jumping up one level or several levels sucks. But I've also fully expected it, and in fact am amazed that I'm still kicking 7 years after my mets first appeared. Since most unhappiness in life comes from reality being less favorable than expectations, I've found that by keeping my expectations brutally realistic, I've managed to keep my happiness.
As for you, as I understand it, your mets are confined to th lymphatic system in your abdominal area. If you're going to have mets, that's the place to do it. The tumor burden is negligible and it's not going to kill you as long as it stays there. If your mets remain stable, excellent! My guess is that as long as your tumors stay confined to your lymphatic system (especially in the abdomen), then you'll stick with your current therapy. Only if tumors start popping up in your liver, lungs, or bones (the three most common places after the lymphatic system) will doctors start talking about combination therapy clinical trials. Hang in there!
Argh! I don't know why I didn't get a notification for the reply.
DeleteThank you so much for your response. This information is extremely helpful for me to know. I have my next scans/follow up appointment this week and have plenty of anxiety over it. Every 3-4 months, it's thinking, "Just get me through this and I'm good for 3-4 more months." I also am realistic and feel like I'm as mentally prepared as one can be for the news to not be continuing my current treatment. It also doesn't help the stress. There's nothing like lying in bed watching my 2 year old boy, who absolutely worships me, sleep and being worried that in a month I might be dealing with horrible side effects and not be able to father to the extent that I have been. Or thinking even further out and how unlikely it is that I'll come close to seeing him graduate from high school. It is what it is, but I'm sure you know the stress/anxiety/whatever it is that I'm talking about. While it's easy for people to look at my case and say it sucks because I'm so young and have young kids and a wife, when I take a step back I realize that there will never be a time when there won't be something I don't want to miss. Anyway, thank you so much for your thorough responses and for doing this blog. All of it is really helpful to me. Here's to good health for us both...we just gotta wait it out til THE breakthrough!
I just wanted to let you know that my scans were once again stable so it's another 3 months of same old, same old unless some other weird stuff pops up!
ReplyDeleteAll that worrying for nothing ... Congrats!
ReplyDelete