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October 16, 2014 at 11:22 pm #22210
I have been a regular on the site for the last 15 months, but mostly in the “Newly Diagnosed Stage III/IV” and the “Stage III” boards. As of Monday, Oct 13th, I am now officially Stage IV.
I just posted a message on the “Newly Diagnosed” board, asking for advice and experience with IPI and IL-2. If you do not regularly visit that board but have any advice about various immunotherapies, I would appreciate it if you could take a moment to read that post.
I have zero experience in this new world and would appreciate any advice you might have.
Thank you very much…October 16, 2014 at 11:57 pm #65663jualonsoParticipant
i have no experience with those drugs, but in 10 days i will start IPI.
in my opinion IL2 is too toxic and the rate response is very low. I know that sometimes rate is not so important (i had very low possibilities to progress from stage 1 to stage 4, and it happened), what is important is where we are, and unfortunately, we dont know it. I bet to IPI because is needed to anti Pd1, and althought could be toxic as well, not in the same level as IL2 and long term survivors you can find more than 10 years.
hope it helps
JualonsoOctober 17, 2014 at 2:29 am #65664AnonymousGuest
So sorry you had to join the Stage IV forum.
However, there is much help and support here.
To start, where do you live and what clinical trials have you investigated?
A combo IPI/PD1 trial would be a good first choice if available to you.
JeffOctober 17, 2014 at 2:38 am #65665
I live in south FL. My oncologist is Dr. Jose Lutzsky at Mt Sinai Cancer Center.
I am slated to join Phase 2 of the MEDI4736 in Nov. Dr Lutzsky stated both IPI and
IL2 are available to me, but he is recommending IL2 because my demographic
has better than average results. My reaction results would be known within weeks. If I am getting
a good reaction, then good. If not, I could join the MEDI4736 trial.
Hope this helps. Let me know if I can provide more info. I need all the advice I can get.
Thank you.October 17, 2014 at 3:10 am #65666
This is my original post from earlier.
As many of you know, I have been a regular on this board since June 2013. In July, I celebrated my one-year NED. It is with a heavy heart that I tell you now that, as of Monday, Oct 13th, I have officially been moved to Stage IV. My latest scans suspected, and were confirmed with a CT-guided biopsy last week, that I have several pulmonary nodules in my lungs. Only one was biopsied and tested positive but there are at least eight significant nodules. Some were present in previous scans and are growing in size while there are now two new ones that did not exist in previous scans.
My oncologist is very supportive of taking immediate action and I have a follow-up discussion with him on Monday, Oct 20th to make some tough decisions. I would appreciate any input, advice, experience, or general thoughts about my options for treatment.
For background information, I am a 43-year old male in otherwise healthy condition. I was diagnosed Stage IIIc in June 2013. I had a 19mm melanoma tumor removed from my right foot along with a groin dissection on my right leg. For the last 15 months, I have had scans every 3 months and have been NED until last week.
While I missed Phase 1 of the MEDI4736 trial, I am currently on the list for inclusion into Phase 2 which would start in mid to late November. In the meantime, he is recommending and I am considering either IPI or high-dose IL-2. Although it is an older drug, my oncologist is recommending that I try one course of high-dose IL-2. While overall reaction percentages are lower with IL2, the results for my demographic (younger, good health, and disease only in soft tissue) are much higher than overall IL-2 results. If effective, it offers the a complete or partial recovery with long-term, durable results. If it is not effective, the course of IL-2 will not prevent me from being able to participate in the MEDI4736 trial in November.
I am not very knowledgeable about most of these treatments and respect the experience and knowledge of the members of this board. Any thoughts, experience, or advice would be appreciated to help me make an informed decision.
Thank you all in advance for taking the time to read this post and provide me with any input.
Stay strong, as we continue to fight the fight…October 17, 2014 at 11:48 am #65667
Hi, glad you’ve reached out to us, but not for these circumstances. I agree with Jeff, the IPI/PD1 trial is showing very promising results.. I would definitely work to get the newly approved PD1, Keytruda prescribed. IL2 has a 94% failure rate while Keytruda has had up to 40% response with very few side effects. Did you mention if you were BRAF pos or neg? If pos, you would need to first try that line of drugs. Clinical trials in Florida are slim, but let me do some digging, you can look to at: http://www.clinicaltrials.govput florida melanoma in the search.October 17, 2014 at 5:10 pm #65668 Thanks to everyone for their responses.
Catherine: Thank you for reading my post. You are so knowledgeable about everything out there and I really respect your opinion. To answer your question, I am BRAF negative.
I am planning on started the Stage 2 trial of the MEDI4736 in late November. This is an anti-PDL1 trial. However, now that I know the melanoma is back and in my lungs, I am motivated to do something in the meantime. I have an appointment on Monday, Oct 20th with my oncologist. We have already discussed IPI and IL2, with his preference for IL2 for me. His logic was that I am a good candidate due to age and current health and my demographic yielded better results than the overall IL2 population. Also, if it does work for me, there is a chance for complete durable recovery or at least partial recovery. And if it does not work, then I can shift into the MEDI4736 trial.
While I hear the IL2 program is not easy, I am willing to endure the short-term suffering for a potential long-term cure.
I will definitely add the IPI/LD1 trial to my list of questions for Monday. I know from your previous posts that you are not a big fan of IL2. I guess I am just looking for some supporting information so I can be more knowledgeable to discuss my options on Monday.
Thank you so much for taking the time to read and respond. It means a lot to me and my family.
Just dazed and confused….again.
MattOctober 17, 2014 at 6:39 pm #65669
It is quite normal to be dazed during all this but you are doing a great job of researching your options. How about I put the therapies into numbers to try to make it clear (and to show I’m truly not prejudiced, just want the best for all patients)
So IPI (Yervoy) has about a 20% rate of response and the side effects can be bad for some, but many seem to be able to work and continue with life’s activities. You get it outpatient and go home. You need to have IPI in order to get Keytruda, the PD1 that is very promising and you can get that by perscription and go home after the infusions. Keytruda has a higher response rate, 40% in some, but hasn’t been totally defined yet. It is at least double that of IPI.
IL2 is a very old drug that we know has a 6% response rate and has high toxicity that requires hospitialization. It is often worried it can affect your immune system for further treatments. That is why I am not a fan of it.
So the numbers are: 20% (plus or minus) for Yervoy, 40% (plus or minus) for PD1, and 6% for IL2.
PDL has turned out to be as promising as PD1 so far, but no real updates lately. Hope this helps you clarify your options.October 17, 2014 at 7:09 pm #65670
Sorry you have had to join this portion of the forum. Educating yourself on your choices is very wise. Then, you have to do what you feel is right for you. I think ipi could be a good option for you, with anti-PD1 as an option afterwards, should you need it. However, there are some very interesting trials with ipi combos currently recruiting that might be worth your looking into. One is a combination of ipi with an IDO inhibitor. Another is ipi with GM-CSF. Dr. Weber, Snozl and others have discussed these new combo’s (how they could make ipi work better, what results have come from preliminary studies, along with many others current and to come) in a presentation given in Paris in July. There are two different versions of this presentation on my blog if you are interested. I’m sure you could google it as well. Both of the trials I mentioned can be found by pulling up Clinicaltrials.gov on google…then enter Stage IV melanoma in the search bar. Just scroll down and they will come up…along with many others…but I would be particularly interested in these two if I were in your shoes. (And…I was once!) Hang in there! Yours, CelesteOctober 17, 2014 at 7:19 pm #65671
Actually saw it in print for the combo of IPI/PD1 in the reports by Yale. It was survival rates: The overall response rate of patients on the trial was over 40%, Kluger says, while one- and two- year
overall survival rates were 85% and 79%, respectively. This type of survival has never been seen before in metastatic melanoma. – See more at: http://www.onclive.com/conference-coverage/esmo-2014/Dr-Kluger-on-a-Phase-I-Trial-of-Concurrent-Nivolumab-and-Ipilimumab#sthash.ah1E5Ptv.dpuf
Thanks for your close attention to this Celeste.
As mentioned before, our scientific board also thinks the PDL which Matt is headed for is every bit as good as PD1.October 17, 2014 at 7:54 pm #65672
I am not asking about the numbers for the ipi/anti-PD1 combo. Those data are consistently hitting around an 80% response rate, which I noted. My question is regarding your comment posted at 13:39,
“Keytruda has a higher response rate, 40-80% in some.” It would be wonderful if that was so! Where is that data for Keytruda ALONE coming from? Cause that would be amazing!!!!! CelesteOctober 17, 2014 at 8:04 pm #65673mmmmParticipant Hello!
I would be interested in the thinking behind participating in the MEDI4736 trial as your first-line treatment.
Thanks for sharing!October 17, 2014 at 8:51 pm #65674
The correction was made no need to belabor the point and hijack the post. Thanks again for your close attention to what is posted here.October 17, 2014 at 8:54 pm #65675
To MMMM; our scientific advisory board member Keith Flaherty, MD, of Mass General, states that
the PDL trials, “MPDL3280A and Medimmune/AZ PDL1 look every bit as good as the PD-1 antibodies.”October 18, 2014 at 12:23 am #65676
Thanks so much for clarifying and amending your 13:39 comment, Catherine. I feared the post was going to be hijacked by misinformation and obfuscation! So glad it wasn’t. Yours, Celeste
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