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September 7, 2012 at 3:29 am #20614
Some “interesting” things have happened to me in the past 8 months (sorry not to have been communicating much). To recap, after almost 2 years of a very good response to Ipilimumab, 3 tumors started growing fairly rapidly last Fall, so I went on the Curetech CT-011 version of anti-PD1 that was without effect, and then did a reinduction of Ipi beginning in January that also seemed to have little or no effect. Two of the three growing tumors were then treated with radiation, but then in the last 2 months I experienced two bouts of high fevers and uncontrollable shakes (rigors) for a few hours that were the result of a Strep B infection of unknown location, perhaps in the heart or colon (near where some of the radiation had been focused). I’ve been on IV antibiotics for 3 weeks now, and regaining strength.
So you can understand that I was dreading the CT/MRI scan results I got earlier today. I thought for sure I was going to be facing surgery or more stereotactic radiation on the 3rd tumor in the next week, or possibly dealing with multiple new metastases. Instead, I was quite surprised to learn that the scans essentially showed stable disease. Specifically, a) the 2 zapped tumors are shrinking nicely, b) the 3rd untreated tumor has stopped growing, c) there are no clear signs of any new metastases. The one shadow in the story is that there are some unclear findings in the small intestine (that may be the result of something I ate prior to the scan). This has to be sorted out, but overall I still feel very relieved.
The “interesting” thing is that although the Ipi reinduction (January-March) seemed to have little to no effect on the 3 rapidly growing tumors, something has happened in the last two months to stop the 3rd growing tumor and apparently forestall the appearance of new metastases (radiation? radiation/Ipi interaction? very delayed Ipi response?).
So now we’re trying to figure out where to go for a quick celebratory trip once I get off the IV antibiotics next week – depending on the weather, maybe a short bike trip on Martha’s Vineyard or Block Island, or a visit to Montreal or NYC. Considerable relief, one way or another.
I’ve also been catching up on the forum posts and webinars and plan on communicating a little more in the coming days and weeks. So I’ll be tuned in.
JonathanSeptember 7, 2012 at 11:40 am #56400mainelaurieParticipant
I had been hoping you would post. I was wondering how you were doing with second radiation. I am sorry about the infection, I hope the antibiodics kick in and get you back to full strength soon. That sounds like great results.
I have also wondered about how long Ippi stays in system and if radiation helps. I just finished radiation on large tumors on my shoulder. I had finished ippi in april with mixed results. while doing radiation I started to lose the pigment in my arms, legs and face (freckled face red head so was weird to see freckles disappearing after all these years). I am optimistic and hopeful that it means radiation somehow boosted my immune system to start fighting harder. I go next week for scans and results. Fingers crossed that for both of us something maybe ippi/radiation combo? got our systems to wake up and fight!
Have a great trip, enjoy!
laurie from maineSeptember 7, 2012 at 5:27 pm #56401Catherine PooleKeymaster
Good to hear from you Jonathan, we’ve missed you! I hope that this does the trick and then my next hope is a PD1 is open for expanded access for you. We’ll keep pushing. Enjoy your next adventure..September 7, 2012 at 7:33 pm #56402bettinParticipant Jonathan,
what a relief and glad to hear back from you. Enjoy your celebratory trip, in the end that what’s matters….!!!!
BettinaSeptember 7, 2012 at 10:24 pm #56403
Bettina, you’ve continued to be such a source of support and information – it’s great that you feel like doing that wonderful service.
Laurie, I do suspect the Ipi/radiation combo must be “helping” me in general now. My Ipi reinduction was about a month before my first low-dose radiation treatment (25 sessions). However, the other tumors continued to grow after that, and then I had high dose radiation (5 sessions over 2 weeks) in July, after which the untreated tumor in my axilla has also stopped growing. I’m not on any new systemic therapy, so how else to explain it? So I hope you have the same reaction. I know my oncologist was hoping for some such response. He says he’s seen local reactions before, but not the sort of overall reaction that Wolchok reported at MSK.
One other thing of interest that I learned from my oncologist concerning anti-PD1 or anti-PDL1 (don’t we all want immediate access to those???). We’re all aware that the preliminary data showed that those people (and tumors) positive for the ligand (PDL) had a good chance of getting a good reaction with anti-PD1, but that those without the ligand showed no response, so it appeared that this was a clear biomarker for doing/not doing anti-PD1. Dr. Sznol says those were preliminary data, too small a set (something like 40 in total, I recall), and that it is turning out to be only a weak correlation, not an all or nothing relationship.
Also, just a comment on the recent webinar (since I’m catching up) – I thought the decision tree at the end of the presentation was especially interesting and should be adopted by all practitioners concerning what sequence to use targeted or immunological therapies in, in different circumstances.
JonathanSeptember 8, 2012 at 2:05 am #56404Shirley ZParticipant
You are like a breath of fresh air. You continue to AMAZE me.September 8, 2012 at 2:10 am #56405Shirley ZParticipant
Sorry! Hit the button by mistake before I could tell you to have a wonderful vacation.
You are always in my thoughts and prayers.
Shirley ZSeptember 8, 2012 at 2:48 pm #56406alankravitzParticipant
Good to hear from you and especially to hear that you are feeling better.Have a great vacation.
I saw Mario about a week ago and got another NED report. We also spoke of the retrospective test for PD-L1 in the biopsies of participants in the Phase 1B trial. As you know the results were astounding. The new biomarker trial will give them more data and, hopefully, will help with the development of a simpler, more reliable way to test for PD-L1: according to him, that is the only problem with use of it now.September 8, 2012 at 8:49 pm #56407
Thanks Shirley, much appreciated.
Alan, glad to hear all is well at your end – how many years now? Your experience with anti-PD1 (at a very low dose) should be enough by itself to get the drug approved (I wish). And I think Celeste has been a responder for many years now.
Please explain about the results of the retrospective biomarker study – we didn’t get into that, except that Mario said the PDL1 negative people were not without some good responses..
JonathanSeptember 10, 2012 at 9:05 pm #56408StevenParticipant
Great to hear from you. We miss your posts and insight.
StevenSeptember 11, 2012 at 7:14 pm #56409Dick_KParticipant
Good to hear from you and your status. Enjoy the vacation and if you time it right, maybe you can avoid the leaf peepers.
DickSeptember 11, 2012 at 10:16 pm #56410
The weather looks clear and warm until Sunday, so we’re going to head out Thursday (after they take the picc out of my arm after the last antibiotic infusion) and just go down the Connecticut coastline for a couple of days of easy biking (Old Saybrook, Old Lyme, Stonington). We will think of you as we drive down.
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