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I know this was a long and very hard time coming, and I’m sure you feel a great loss. But you must also know you did everything you could to alleviate his struggle.
Sorry to hear of your struggles, and can only wish you comfort and strength.
I’m healthier than I’ve been for many years, and will always remember that your advice helped get me on 2 drugs that saved me in the nick of time in 2013-14 (Pembro/Keytruda being the biggy). I have watched as new developments since then have matured, so that hopefully many more patients can get the benefits of immunotherapy.
I see around 4 melanoma survivors in our area fairly regularly for coffee or lunch, and we all are amazed we’re still here. When we were first diagnosed, there was nothing for us except surgery.
Lately I’ve gotten very involved in a trial of weekly “telemedicine” conference calls for cancer patients with recent ostomies (I woke up from my major surgery with one in horror, and told the surgeon at that point I didn’t want to live – a shocker, but things change). We act as advisors or peers guiding people through their adaptation. A lot are very sick, and it can be very moving, but clearly helpful.
Take care everyone,
I’m sorry to hear all these developments. However, you sound as if you are, as always, able to make the best of a hard situation, being open to discovering new aspects of life, painful though they may often be.
Know that we think about you often.
Great to hear from so many, and now so many great outcomes. Really incredible, knowing how many dear friends were lost in this struggle not too long ago.
After facing hospice care in May of 2014 because of extensive tumor growth that was blocking my gut entirely, particularly in the small intestines, I began Keytruda when it started in expanded access, then had major surgery (ileostomy), but responded quite dramatically, with just 2 gamma knife procedures the following month on my brain. Stability or reduction was attained everywhere (lungs, brain, abdomen), and I elected to get off Keytruda a year ago (glad I did – see Candi’s reactions and others, including some I know personally – too much chance for further complications from the drug, as in the NYTimes article a few months back).
Now there is some inflammation surrounding an old brain lesion (no symptoms – just showed up on a MRI last week – apparently a common problem following gamma knife procedures), so I’ll start Celebrex tomorrow to see if that will take care of the problem – it has in a friend’s case. There is about a 10-25% chance of some tumor growth, but if that turns out to be the case, it can be excised in a couple of months. So I’m not terribly concerned, and I know I’m in good hands. Everyone says I look great (I’ve gained back a lot of weight), and I’ve even done some x-country skiing the past few days here. Two years ago, I tried but fell and couldn’t get up. So we’re enjoying life – off to Costa Rica next week to escape the snow, and then back for our granddaughter’s 4th birthday.
Good health to everyone,
There’s an article everyone should read in the current New York Times about diabetes risk and immunotherapy, very much your situation. Clearly, major side effects are a major issue – all immunotherapy patients should immediately report any problems to their oncologists immediately. The risk is apparently especially great for combination therapies, and early in treatment….
All the best wishes,
We’re so sorry to hear of this development (and once a week hospice visits are simply nuts!!). We are thinking of you and hope you can manage this as best as possible.
You have our continuing gratitude and admiration.
Jonathan and Françoise
Again, I appreciate all this.
Also, I forgot, in the last message, to say what I’d really like to see changed in clinical trials/access to experimental drugs (I thought I said it, besides the payment stuff).
I think, probably in stage II trials, when there begins to be a sense that a new drug might not only be safe but effective, it should be made available to critically ill patients with no further recourse, who have been excluded by trial guidelines (this happened to me twice – first because, like so many men my age, I had a prostate biopsy, and second, when I wanted to get on an anti-PD1 trial, because I’d already had Ipi). Both of these exclusions meant large numbers of patients (like me) who were going to be among the first who needed the newly approved drug were excluded, and information on their reactions needed to be monitored before approval, to find out if there was any reason to think they might be different – not after approval. This would be a far more useful side-arm of the “pure” trial, and of course, far more compassionate. This would still mean effective FDA monitoring and data-gathering, rather than a helter-skelter opening up of the experimental drug to critically ill patients, and would also rationalize why the drug should be distributed for free, still under the expanded trial umbrella.
I haven’t seen this idea out there, but I think it’s a better alternative to RTT legislation, both ethically and scientifically.
Thanks Wendy and Jeff, so good to hear from you.
Last year, when it became clear to me that I was going to survive and live normally, a friend (artist, writer, and cartoonist) told me I should write about it all. It took a very long time, and had lots of separate parts (prices, clinical trials, personal), but I’m pleased it’s getting a good reaction and attention. I liked the “comments” section responses.
I hope it reinforces a couple of major points –
1) more competition has to be introduced into drug pricing (we can all support that), and
2) people who are currently excluded from clinical trials should still be allowed access to promising experimental drugs under FDA monitoring (their data can also still be very useful in the general clinical situation).
I’ve read the “Right To Try” legislation carefully, as well as its critics, and while the effort is clearly causing the FDA to speed up and simplify “expanded access” programs (and to introduce “breakthrough therapy” designations), I can’t totally buy into their proposed legislation, that’s sweeping the country at present. I think experimental drugs still have to be monitored by the FDA (but faster and simpler). If any drug that passes phase I trials for safety is prescribable (including those that subsequently fail phase 2 or phase 3), it opens the door for the quacks to go crazy. I’m thinking laetrile as a perfectly “safe” piece of quackery. I recall 70,000 breast cancer patients took it. Another thing about the RTT legislation is “who is gonna pay??” It isn’t mentioned, and of course, that’s huge. If the drugs were going to be free, that would be best (reducing the quack’s incentive, and not driving sick people and their families bankrupt). We’ll see what happens where it’s been approved – about 20 states now, I believe. My state, Connecticut, just passed one version.
Anyway, that’s my soapbox rant for now. It is pretty amazing how things are developing.
Many thanks, Catherine. As you know, I will always be grateful for your help and support throughout my 20 year journey, along with that of MIF members. That support has always been critical, practically and emotionally.
Thanks, folks. It means a lot to me.
Apparently, the Washington Post is going to publish a slightly shorter version of this article on Tuesday (online on Monday). So it’s getting a lot of exposure. They originally cut the entire section on drug costs, but I got a shorter version stuck in, mostly about how prices vary entirely due to the leverage (clout) of the insurance negotiators. Same dynamic as what makes drugs more expensive in the US vs other countries.
I need to learn more about the new “Right to Try” laws for critically ill patients and experimental drugs that are being pushed across different states (Jerry Brown just vetoed one in CA, saying expanded access was enough). If anyone is really familiar with these, please let me know a.s.a.p. I’ve been contacted by a very conservative foundation (and I’m liberal) that is pushing this effort, so I may end up testifying in their behalf. The hooker for me up front is – who pays what price? The off-the-shelf price for one infusion of Pembro is $53,000 I believe, so if that sort of fee were charged to the patient under this proposed legislation, it would be just a law for the very rich, or would bankrupt entire families…I gather in some cases, the companies have offered drug gratis, and in others insurance has paid…all uncertain.
Catherine is wrong (and right). I do check what’s going on here, but I am healthier than I’ve been in many years. You probably recall some of my history, but the similar things to your situation are that I did have metastases (from the original site near my knee) to lungs, brain, psoas muscle, and small intestines. Ipi gave me a good response for 18 months, and then I got on Pembro in the nick of time 2 years ago, on Expanded Access, with Catherine’s help. I reviewed the scans from that period with my oncologist a couple weeks ago – my intestines were grossly enlarged and blocked, and they perforated on the way to surgery (I’d started Pembro 7 weeks earlier, but the blockages weren’t resolving fast enough with the drug). If I hadn’t had the surgery then, they tell me I would have died later that same day from the sepsis. They removed a yard of intestines, in 3 pieces, plus making an ileostomy – so no effective colon.
I hope your situation hasn’t reached that point, but I think I would heartily recommend starting the Pembro a.s.a.p., because, if it works, it will still take about 2 months to start effectively shrinking tumors or stopping their growth. At the time, my young surgeon wasn’t sure he thought the extensive surgery was worth the effort, since there were so many tumors, and it was unclear the drug was working at that early point.
I can’t comment on alternatives – the Ipi/anti-PD1 combo or others – but the risk of colitis or other side-effects is of course a lot greater. However, given your successful Ipi history, I’d think that would be a good predictor of side effects from the combo – it’s the Ipi that’s the nastiest part. And although I believe the literature doesn’t indicate it, at the time my oncologist told me because of my fairly successful history with immunotherapy (IPI), he thought the odds were that I was likely to get a good response with Pembro. Maybe he was possibly referring to other markers, like a lot of active and invasive T-cells or the like…probably just optimistic.
If you want to know any details, I can send you more. Let me know via Catherine.
Wishing you the very best of responses,
I think you’ll find that an increasing number of us have had excellent responses with Keytruda. I don’t know anything about your husband’s symptoms or where he’s being treated, but the anti-PD1 drugs have been ground-breaking. They work best when the tumor burden is not too great, and they take a long time to work, so all that is very difficult to deal with, depending on his situation. In my own situation, I was quite far advanced (age 74 then) when the drug finally became available and had to have a major operation while waiting to see if the drug would take care of everything else. You can search this website for my history and that of others as well – survival and regaining a normal life is now very much a real possibility. And with so many advances in treatment, even a partial response that gives him relief and an extension of life is important, since there are now other options and combinations of drugs that are so promising.
You must also be as sure as you can that your oncologist is well trained in handling these drugs and complications, so it’s best to be in a medical center with a reputation for excellence in oncology.
So start your education – you both will become your own experts very shortly, and that’s a good thing!
Good luck with that, Craig – it’s a good drug (not bad side-effects compared to Yervoy, and better response rate). I have found that different insurance plans here (US) have negotiated very different payment rates – sort of crazy- just a matter of clout. My plan pays $9,000 per treatment, another pays $35,000…..Hard to believe, but I’ve got the paperwork… Geez, folks, thanks for the support and enthusiasm! (I just lost an earlier long-winded draft, so will try to be brief this time).
Shane, I got a clear response with Pembro starting at about 8 weeks – no subsequent new tumors, gradual shrinkage of all remaining ones (I did have a yard of small intestine removed with the biggest ones blocking everything – couldn’t eat or drink). I continue with Pembro infusions every 3 weeks at Yale, and the only anxiety is that my labs might exclude me from treatment (that happened for a while with elevated liver function results). I don’t know why I am not anxious about possibly stopping treatment – just a basic simple-minded polyanna personality, I guess. If I’m not being treated, I must be cured, right? Something like that – and a little worried about possible immune responses down the line.
PhllyRed, thanks for the good article – I don’t know if my tumor expressed PDL-1 or not (2 years ago had samples sent to Topalian’s lab at Hopkins, but I don’t think she did them). The tumor microenvironment is clearly where the action is – stimulating the checkpoint inhibitors with vaccines is a fascinating and hopeful idea, to make responses more prevalent. Sznol has made it clear he wants another biopsy of my remaining tumor (already done twice before) before he considers stopping treatment – glad to oblige, for sure!
Bettina, thanks for the video – I’ve just had an article provisionally accepted by Health Affairs (a public policy journal – 11,000 subscribers) on my 20 year experience with melanoma, and I will add something about those ideas on reforming clinical trials. We’ve all been struggling with those issues, and those were some well-thought-out ideas.
Thanks, I’m (maybe) NED – last scans a week ago showed my one tiny remaining tumor in an armpit lymph node has shrunken to 1 cm, and is probably dead – will confirm in February, when we will start talking about going off Keytruda.
Interesting (and great) problem to have – to go off the drug or continue. It will have been 2 years, all positive trends, so what are the pros and cons? I have minimal side-effects at this point – a little intermittent rash (plus the peripheral neuropathy from earlier chemo). My oncologist says, of course, the disease is worse than the drug. However, if I stop and then melanoma comes back, I can go back on Keytruda as this has been found to work in many cases (another option is the Yervoy/Nivo combo, now that it’s approved). And if this doesn’t work, the disease at this point is apparently usually indolent, so a simple excision of the offending lymph node is likely to suffice. Also, there is a small risk, if one continues the drug, that auto-immune side-effects may develop, even this late. Cases of diabetes, problems with the pituitary, plus the liver have been reported. I get the message that no one really knows, yet, the best regimen, since it’s all still so new. I’ve talked to other patients in the same circumstance who are reluctant to stop, but for some reason or another, I’m eager to end the treatment. Sure, I’d continue 3 month scans and observation, probably indefinitely.