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April 1, 2014 at 4:17 am #21901odonoghue80Participant
Hi, I know this trial opened recently, and I’m sure there haven’t been too many patients on the drugs yet, but for those who are on the trial what side effects have you experienced and have you received any response yet?
This washout for the trial was extremely tough and I’ve been very weak – especially lately. I’m already fatigued and have no appetite. I’m not sure what to expect when I start on the drugs.
If anybody can share some input would be great. Also, for those who were on the Anti-PD1 what side effects did you experience? Maybe it’s similar.
I’m certainly ready to start already!
ShaneApril 1, 2014 at 12:58 pm #63980BNP68Participant
So happy to hear you made it through the wash out period. Got to feel great to know you are getting something into your body that can help.
I have to tell you that my side effects from the nivolumab have been almost nonexistent. Sometimes I maybe could say I’m a little fatigued but to be honest with you the fatigue really could be from my 3 and 5 year olds as much as from the nivolumab. I’m in close contact with two other friends on nivolumab as well. One is just like me and has very little side effects if any. The other has had some liver toxicities. Both of them have had outstanding results. My results have been mixed but overall pretty good.
Can’t tell you how happy I am to hear you are finally on the trial. I think you have a great trial and I look forward to hearing your future scan reports.
BrianApril 1, 2014 at 6:59 pm #63981
Anti-kir is supposed to help the other immunotherapy, enable it further. I have a few patients on it, no bad complaints and very few on the PD1. Hope it goes well for you! You deserve a break I think!April 2, 2014 at 6:22 am #63982LesliParticipant Shane,
I hope all went well today, as I had in my mind that April 1 was your day. Please do keep us updated. Wishing you well, LeslieApril 2, 2014 at 5:20 pm #63983
What is your schedule to start on the drugs? I assume you’re having baseline scans, and then a baseline appointment the day of the first infusions?
I’m in this trial too. I had cycle 1 dose 1 (nivo + liri) and this week I had cycle 1 dose 2 (nivo only). So far I haven’t experienced any side effects worth noting. Also, my appetite is normal and I’m not more fatigued. I’m not likely to know about my response, if any, until getting scanned in early May.
It’s almost 3 years since I’ve been treated. Now I am spending some time in an infusion room again, but it’s all very good and I’m very hopeful, which includes that I’m not hitting any particular side effects so far.
Keep us posted. – KyleApril 3, 2014 at 2:00 am #63984Celeste MorrisParticipant
Best wishes to Shane and Kyle!!! Go for it!!! My fingers and toes are crossed for both of you! Celeste – chaoticallypreciselifeloveandmelanoma.blogspot.comApril 3, 2014 at 2:22 am #63985MathewRParticipant Best wishes for success on this trial. Can either of you share what you’ve learned about Anti-KIR?April 3, 2014 at 11:59 am #63986 Here is what was explained by a research nurse about this trial:
“lirilumab (BMS-986015)works by attaching to and blocking a group of molecules
called KIR. KIRs are proteins that are present mainly on cells in your immune
system called natural killer (NK) cells. By blocking KIRs, we hope to activate NK
cells to help destroy the tumor cells.
Nivolumab (BMS-936558)works by attaching to and blocking a molecule called
PD-1. PD-1 is a protein that is present on different types of cells in your immune
system and controls parts of your immune system by shutting it down. Scientists
believe that one way cancers escape the immune system is by shutting it down.
Antibodies that block PD-1 can potentially prevent PD-1 from shutting down the
immune system, thus allowing it to recognize and help your body destroy the
cancer cells.”April 3, 2014 at 4:46 pm #63987
I found some information from the pharma company itself, France-based Innate Pharma, to help me understand a little bit what lirilumab is doing. The company gets its name because it specializes in targeting the innate (non-specific) immune system, whereas drugs like anti-PD1 focus on the “adaptive” immune system. BMS is licensing lirilumab from them.
We hypothesized that coordinate modulation of innate and adaptive immunity with KIR and PD-1–blocking antibodies, respectively, could achieve more favorable biologic and clinical activity than either agent alone. “
A detailed description of lirilumab from Innate is here
http://innate-pharma.com/en/product-pipeline/lirilumab-first-class-anti-kir-mab-licensed-bristol-myers-squibb ” class=”bbcode_url”> http://innate-pharma.com/en/product-pipeline/lirilumab-first-class-anti-kir-mab-licensed-bristol-myers-squibb
That page from Innate also links to a very informative 2013 ASCO poster presentation about this specific trial,
as well as 2013 posters about other concurrent trials with lirilumab. http://innate-pharma.com/sites/default/files/asco2013_tps3110_0.pdf ” class=”bbcode_url”> http://innate-pharma.com/sites/default/files/asco2013_tps3110_0.pdfApril 5, 2014 at 8:01 am #63988odonoghue80Participant Hi all, thanks for the great responses and I’m happy others are having some positive response from this trial. As for me, I started April 1 and just had my first infusion. I’m just glad to be underway on the trial and on some type of treatment. I haven’t any physical change yet but my mentality received a boost just by starting. And the same as the others, I haven’t had any side effects, which is great.
On the first day my labs came back fine except my thyroid was a bit off. My onc started me on synthroid (I think it’s name) that should help me regulate my thyroid and help increase energy and my appetite. I’ve always been nervous about autoimmune issues or other medical issues but I’m hopeful this help. As I mentioned earlier I’ve been very weak and have exceptional low energy. My scans PET/CT showed interesting images. I had about 100 sub cut tumors which seemed crazy and some tumors shown in my bone (femur) which concerned me, but my onc didn’t seem to take any special interest to this. I guess you either respond or not. One thing from the scans that did surprise me, I really didn’t have any tumors in my organs yet – which I was happy to hear.
Thanks again for all the responses,
ShaneApril 5, 2014 at 12:02 pm #63989
Wishing you a speedy response Shane! Take it a moment at a time if you can. Keep in touch!April 7, 2014 at 9:48 pm #63990JackjackParticipant Hello. I am new to this site. I am currently enrolled in the PD1/Anti KIR trial at MSKCC. I just finished dose two and get my first scans from the trial in early May. For those that are on this trial can you respond how you are doing and is anyone at MSKCC?
This is round two of treatment for me. I underwent TIL (tumor infiltrating lymphocytes) at the NIH (National Institutes of Health in DC) All my tumors miraculously shrunk however, I have some that got around the TIL treatment, therefore, I had to seek more treatment. My doctor team at NIH spoke highly of PD1 and felt that it should be the best to help take care or the others. So I recently started the PD1/anti KIr. So far I am feeling ok, not side effects yet other than maybe headaches. I would love to hear feedback on those on it or know about it.
JackieApril 8, 2014 at 3:19 am #63991
Looks like we are at least 3 out of the 16 participants here on this forum now, in the dose expansion cohort for melanoma. So far I have not had any side effects worth noting.
Previously I was treated with IL-2 in 2010 and IPI in 2011, and each of those times also had what seemed like and probably was a miraculously good response.
I am in now to treat a single new tumor found in a paratrachial lymph node (lung). My oncologist in SF says, probably it’s some colony of mutant cells that had hidden away and evaded previous treatment, and just now surfaced.
I am very pleased to be in this trial, on the west coast. We’re on just about the same schedule. I will also have the first in-treatment scans in early May.
– KyleApril 8, 2014 at 12:47 pm #63992JackjackParticipant
Good to hear from you. I have been anxious with this new trial because I was doing so well from the TIL treatment and just like you I have this one intruder that is requiring more treatment. It is actually the retrotracheal/upper left paratracheal node (or mediastinum). I also have it in my gallbladder that the TIl didnt get, but if the PD1 doesnt get it then I can have the gallbadder out. I believe you are correct about the mutant cells. This intruder was not a new growth. It was one they were watching and were not sure if it was cancer. Because it grew they confirmed it is cancer. I can also feel an enlarged node under an arm. What is your dosage of ANti-KIr? MIne is 0.3mg. It does sound like we are on the same treatment schedule and will be happy to keep in touch. I was warned that with the first scans sometimes the tumors can grow so I will be ready for that.
JackieApril 8, 2014 at 3:15 pm #63993MathewRParticipant
Jackie, Kyle and Shane, best of luck on this trial. I hope that you’ll keep posting regarding your experience. We’re very interested.
Separately, for Jackie and Kyle, I was looking at TIL at NIH last summer when I was diagnosed Stage IV. I recall that I wasn’t able to find much on MIF or MPIP (particularly recent posts). I’d encourage you to post about your experience. You tend only to read about very unfortunate TIL results on these forums. It sounds like your results and experiences–while not “magic bullet” experiences–were quite positive.
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