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December 19, 2014 at 11:16 pm #22277odonoghue80Participant
Hi all, just wanted to reach out to the community and see if anybody has any thoughts.
It seems to me I have three options:
1. I was accepted into the TIL program at the NIH in Bethesda,MD this past September. However once they saw me on the second visit they said I was in “too bad of shape” to go through the treatment. Fortunately they did remove one of my tumors and my TILs did grow and are now frozen once I’m ready. The plan then was to go home, have chemotherapy (carbo/taxol) and radiation. The chemo has really helped. Much of my tumors shrunk or resolved, and now my scans are looking much better. The only thing is my groin, grapefruit sized tumor has not resolved. Although the chemistry or density of this tumor seem to have changed, at least according to scans. At this point, I could stay on chemotherapy, but I’m not sure if this is the best route. I feel like I have done everything the NIH doctors asked me to do; get stronger, put weight on, and get off pain medications. Should I go and move forward with the TIL therapy now??? I know TIL is an intensive treatment but now that I’m finally feeling better, I’m wondering is this a chance to give this disease of a knockout punch?
2. My local melanoma specialist suggests switching off chemo and have a few infusions of Keytruda. Earlier this year I was on a clinical trial of Anti-PD1. It helped initially but that groin tumor kept growing and we had to switch treatments. By the way, this big tumor in my groin can not removed surgically. I am aware that immunotherapies have a better chance for durable responses. Also, they are typically not as intensive as treatments such as chemo or TIL therapy, which is nice. However, I’m wondering do I stick to the original plan and go for the TIL therapy? Or do I take advantage of the option of Keytruda now? I’m also unsure if you can switch off Keytruda and come back to it down the road? I don’t want to burn any bridges of the sequential of treatments.
3. I also can stay on chemotherapy. It has been working this far, and should I milk it while its working? I’m not sure what to do.
Thanks for reading and understanding my situation. I’m certainly glad to have these options because a few months ago I didn’t have these. Its just difficult to make these decisions. If anybody has any input I’d appreciate it.
ShaneDecember 20, 2014 at 4:26 am #65956AnonymousGuest
I’m really glad you’re doing much better on the chemo. However, IMO, if you can get in, go for the kill via TIL.
JeffDecember 20, 2014 at 1:34 pm #65957
I have a few questions (and it is good to hear from you!) What PD1 were you on previously in the clinical trial? What chemotherapy are you doing now? If you want to look at this from a scientifically backed perspective, the evidence is not been conclusive about TIL. It has not been proven in a phase III trial against another therapy. Our Scientific Chair, Keith Flaherty a brilliant melanoma specialist at Mass General says about TIL:
“The balance of efficacy and safety has not been established to consider the TIL therapy as an option in relation to immunotherapies and Braf inhibitor based therapy. Clinical trials, randomize to other therapies are certainly lacking. It has been unclear whether the TIL therapy will be brought forward for consideration by regulatory agencies. Several new biotech companies are forming around the concept of developing Tcell therapy as a treatment approach and that could lead to approval. There is still a long way to go for this therapy and the type of rigorous dated needed to judge its merits may come in the in the near future. A major issue is that at the NIH, patients are very carefully selected for TIL to date and that makes it hard to understand if it could be generally relative to the majority of melanoma patients.”December 21, 2014 at 3:20 am #65958kylezParticipant Catherine, Shane was doing PD1 with the Nivolumab + Lirilumab trial.
Shane, for treatment choices like these I want my oncologist(s) to be good odds-makers.
Wondering, if you went back to NIH now could you go through the steps of trying to re-qualify for the TIL treatment, without actually committing immediately? To see if that path is open to you now, or not yet? Which might affect the weighting you give to the other choices.
I met someone on an AKT + MEK targeted therapy trial (BRAF wild type) who got a super-fast response to multiple tumors, some large (albeit n=1). It’s possible there might be more, different treatments worth looking into, perhaps not all pointed to by your current oncologist team.December 21, 2014 at 1:12 pm #65959
I think Keytruda is worth a try, although I haven’t seen a lot of evidence that one PD1 is better than another. Word on the “street” has Keytruda a step ahead. PDL is also a promising agent, though hard to find and get into a trial. So I think the best idea is for you to sit down with a pros and cons list and then have a long chat with your medical providers. My personal choice is to use an agent that works with the body’s immune system with little toxicity. Let us know how you are doing, we are here to support you.December 22, 2014 at 5:03 pm #65960VanessaGirlParticipant Just throwing out an idea, but have you ever had a discussion with your Doctor about ILI? Isolated Limb Infusion. I am wondering if this is a viable option for your groin tumor as it may shrink it enough.December 23, 2014 at 8:22 pm #65961odonoghue80Participant Thanks for the all the responses. I truly appreciate it and Catherine I’m grateful for your input. I’ve been a bit wiped out this week from last weeks chemo infusion.
I’ve sent my images and reports to the doctors at NIH and I also had a follow up yesterday with my radiation oncologist. I wish I had learned about the isolated limb perfusion and discussed this with my doctor. Next time. At this point they are hoping my body will absorb the fluid/tumor over time. In the meantime, with respect to the comprehensive treatment, I’m still uncertain what to do. I’m hopeful I will have a good conversation with the doctors at NIH this week. It’s a fine line to walk because if you look at TIL therapy as a salvage treatment, but yet you still have to have a good performance standing and well physical being to get the treatment.
One thing I am curious about being approved Keytruda (or any other immunotherapy drugs like Ipi), can you try Keytruda and hop on and off of treatment? Say for example if I switch on to Keytruda and then I come off, can I ever go back for Keytruda? What is the plan for Keytruda? I know during the trials people would stay on this for two years. Is this the case now that Keytruda is approved? I hope I’m making sense! My oncologist was recommending starting on Keytruda on Jan 6th, and then reevaluate after two infusions. Seems like that is a short attempt, and I don’t want to burn that treatment option.
Ok, thanks again for listening. Hope everyone has a great holiday!
ShaneDecember 23, 2014 at 10:28 pm #65962
Isolated limb perfusion can have a response but it is a pretty intense procedure with full anesthesia. It also, of course, does little for disease elsewhere. Yes, with Keytruda being approved, it can be between you and your doctor how you proceed on it. Your insurance company might weigh in, but shouldn’t be an issue. I hope you find some peace of mind and a plan that fits your needs. Wishing you some peace and joy over the holidays Shane!
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