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August 31, 2014 at 10:04 pm #64582JonathanParticipant
I just wanted those of you who’ve followed my trip to know the latest. I just had my first scans last Friday after about 15 weeks total on Merck’s pembro (and 2 months now after extensive abdominal surgery, with about a yard of small intestine removed in 3 sections – see earlier posts on that ordeal). The scans suggest a very clear response, which is simply great news (my surgeon was extremely happy with this). There are no tumors visible in the abdomen at all, the chest tumors are either stable or reduced in size (often by 80%), but I do have 2 new small brain tumors (nothing is ever perfect). So the immediate plan is to go back to Yale on Tuesday and see Dr. Veronica Chiang, of MIF webinar note, once again for my third gamma knife interlude (the first was right after my first Ipi treatment about 3 years ago). If things go as before, the brain tumors should be fried and me ready to assume normal life within the following 24 hours.
So suddenly I feel like I’m coming out of a very long and dark tunnel and have the prospect of an improving lifestyle over the next few months or even years. This is what these anti-PD1 drugs are likely to provide for, dare I say, most advanced melanoma patients (the research docs are being quoted as suggesting a “cure” for a minimum of 30% of advanced patients, and the way I read the trial results, I think it’s quite a bit higher for a long term response, but we can argue about that).
I’m dealing with after-effects of my various treatments at this point. The 2-plus months I spent in the hospital in June and July, plus the surgery, weakened me a great deal, but I’m slowly recovering from that – walking 40 minutes a day, doing some tai chi for balance, etc. I also have an ileostomy from the surgery, which the surgeon is already talking about reversing, but that would be another major surgery with recovery, and I gather there are potential serious complications (chronic severe diarrhea, etc). Right now, we are reluctant to go that route. Maybe in a year or two, or never. If anyone has any experience or advice on this, I’d love to hear it (maybe through Catherine confidentially). The thing I’m really most unhappy about at the moment is the peripheral neuropathy that apparently is the result of my treatment last year with the experimental Antibody-drug-conjugate chemotherapy from Genentech that I posted about at Sarah Cannon Research Institute in Nashville (it did prolong my life about 6 months and enabled me to get on the Merck anti-PD1 EAP just in the nick of time). It’s become more obvious or pronounced lately, even 6 months after I terminated it in March. My left foot feels like a brick, and my balance is somewhat impaired, although I can walk at a leisurely pace without a cane – also numb fingers. Importantly, my oncologist (Mario Sznol) reassures me this is not the result of pembrolizumab, so I will certainly continue on that treatment.
So all in all, I am feeling as though I’ve likely weathered the worst and am beginning to experience the pleasures of life again, although a couple of months ago I really was looking over the abyss and in a lot of pain. I had a great 74th birthday last week-end with my 2 grown kids and granddaughter, and an old buddy of mine is talking about possible new research collaborations in the coming years – unthinkable discussions a few months ago. Life can be fun again, and I have a wonderful wife to enjoy it with.
These anti-PD1 drugs are living up to their hype and are going to transform the prospects for advanced melanoma patients, I”m convinced.
JonathanSeptember 1, 2014 at 4:29 am #64583msue5Participant
Great news Jonathan. I have occasional numbness in my fingertips also. I am convinced it was Ipi. Almost all my Ipi side effects were neuro related. I finished Ipi 1 yr ago. Your post gives me encouragement and others also about their future with Stage 4.
Mary SueSeptember 1, 2014 at 3:01 pm #64584jamesaParticipant
Thanks for posting your update. You are a inspirational. You have been through so much yet you have a great attitude.
I hope that you regain your strength and continue to move forward with a amazing response to Merck PD1.
Take care my friend,
JamesSeptember 1, 2014 at 8:07 pm #64585Celeste MorrisParticipant
You are awesome, dear and wonderful, my friend!!! Zap those crappy spots and get even better!!! Hugs to you and Francoise! Love, celesteSeptember 2, 2014 at 1:39 am #64586WITomParticipant Jonathan – so happy to hear you are responding to the pembro and beginning to feel better! I am an ipi responder and also went thru major abdominal surgery which resulted in an ileostomy. I lost my entire colon so no option for a revearsal procedure. Just wanted to let you know that for me I have adjusted very well to my ileostomy and have very few limitations because of it. It will take a few months to adjust to it but then becomes very manageable and is just a new normal for me. I have had my ileostomy for about 2.5 years now and if I am blessed to be a long term responder I don’t have any worries about living with the ileostomy. I pray for your continued response and return of your strength and function! I also want to thank you (as so many others have) for all the past information & inspiration you have provided to so many of us! WITomSeptember 2, 2014 at 1:15 pm #64587AnonymousGuest I’m glad to see you’re on the mend Jonathan. Thanks for the updates and keep them coming. The documentation of your experiences is an inspiration to others here and good reading to boot.
JeffSeptember 3, 2014 at 9:43 pm #64588JonathanParticipant
Hi and thanks again – I just went back for the gamma-knife zap of the 2 small brain mets yesterday, and I am home and not feeling tired or any discomfort at all, except of course for the 4 small areas of my scalp where they inserted the screws to hold the frame (I hadn’t remembered that process as being so uncomfortable in the prior 3 episodes with Dr. Chiang, but at least it was brief). Apparently all looks good on that front. I am strangely slightly euphoric today, perhaps because this is another step towards recovery, and next week I will also have the precautionary G-tube (stomach) removed and catheter as well.
Special thanks to WITom about the ileostomy info – I think I’m already getting quite used to it and even though the surgeon already said reversal is an option for me, I’m not at all sure I will take it, since that would involve another abdominal surgery etc. If anyone has had the reversal, I’d like to hear their opinion and experience. Also, it’s simply great you’re having such a long response to Ipi – mine was pretty good at 18 months. My oncologist fully expected me to have a good response to anti-PD1 (apparently the case) because of my prior good response to Ipi, so that’s something hopeful for you to keep in mind or inquire about (somehow I thought the published data so far have not suggested any such relationship).
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