› Forums › General Melanoma Community › Julie Inspired Post
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Mamapegela.
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- October 2, 2016 at 4:25 pm
Warning: Long winded post may cause narcolepsy. Recommend placing pillow near keyboard.
I really enjoyed Julie’s “Update & Plan A & B” post and found it quite helpful. I was pleased to find our methods were very similar. Here’s my update and lesson’s learned over the last couple months. A quick summary for those unfamiliar, I completed a 2 year sequential ipi/nivo combo trial in Aug 15. At the completion of the trial I had two tumors that had been stable for the last 18 months of the trial and for one year post treatment. A Petscan on 3 August showed a couple new suspicious nodes with mild uptake. Due to location of the tumors and some other factors I made the decision not to biopsy and rescan in 8 weeks. I did that scan last Wednesday which showed increased uptake on those nodes and confirmed my recurrence.
Waiting the 8 weeks for the second scan was tough mentally but it did allow me some time to see several experts in the field. Like Julie I did as much research into the science and did a lot of searching on clinicaltrials.org. Here’s a little trick on Clinicaltrials.org I found very helpful. Go to Advanced Search and type in “melanoma” in Search Terms. Under Recruitment select “Open Studies”. Select Adult under Eligibility Criteria. For location select United States (or as appropriate) or you could select between 1 and 3 states near your location. Under Additional Criteria you could select the Phase trial you are interested in or leave it blank. Click search and depending on your location criteria you will get 2 or 3+ hundred results. What I discovered is the “Search Details” tab near the top. If you open that tab you can then usefully filter your search. For instance if you are looking for an anti-PD1 trial click the “PD-1” term and it will filter down to only the trials with anti-PD1. If you are a Stage IVer you can click the “Stage IV melanoma” term and find the trials for stage IV patients. Maybe I’m the only one that didn’t know that but I’ve been using clinicaltrials.org for a long time and never knew that.
Another lesson I keep relearning is how to prepare for meeting with the melanoma experts. When I go there with specific questions and objectives for the consult I always come away with more useful information. If I go there “hoping” they are going to tell me what I need to know I am usually disappointed. Sometimes after a consult I realize that I’ve received lots of information but the doctor never really said what I should do. I have to remember the question, “What would you do if you were in my shoes?” question.
So in my specific case I struggled through a few competing treatment thoughts. As a previous anti-PD1 responder there’s no guarantee but a good chance I would respond a second time. Do I want to go back to a PD1 drug and hope to get another 1 or 2+ years out of it and hope for new and improved treatments to come along in the future. The other competing thought was do I try something outside the box and keep PD1 in the back pocket. And the third competing thought was a compromise between the two where I look for a PD1 + experimental drug combo trial. I will say I was impressed with the amount of phase I and II trials with PD1 combo. I think it was Tim Turnham after ASCO 2016 who said we are 1 or 2 years out from the next “big PD-1 like” announcement. If the number of Phase I and II trials on clinicaltrials.org is any indication I think he is right.
I struggled with the decision but have decided to go with the outside the box option and try the” Cellular Adoptive Immunotherapy Using Autologous CD8+ Antigen-Specific T Cells and Anti-CTLA4” (Josh’s trial). There’s a few beliefs I’ve had from the beginning of my melanoma journey. One of those was that I was going to try as many things as I could while I have the ability. I’ve read so many stories of patients not having success with their first, second, or even third treatment but eventually something worked before they ran out of time. That also formed one of my other beliefs in the cumulative effects of treatments. One treatment may not be your solution but it provides just the right amount of impact on your immune system for the next treatment to finish the job. I also figured this was a good time to try a trial like this where you have to wait up to 8 weeks to start while I still have slow disease progression and low tumor burden.
Well that’s it for now. If you made it this far I salute you!
Brian
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- October 2, 2016 at 6:25 pm
Thanks Brian (and Julie) as this post was a great resource to help us make the most informed decisions. Your comments about doctor visits really struck home as I travel thousand of miles, at great expense to see my specialist, and must admit, I sometimes realize later, I just did not get all the answers I sought. I'm at the stage now, coming on one-year since beginning the ipi/nivo combo, and only getting a partial response, that we are now looking at trials. I really appreciate you adding the structure to the process that will help narrow the field. The last time I went on clinicaltrials.gov I did in-fact fall asleep at the wheel. Best it the battle.
Gary
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- October 2, 2016 at 6:25 pm
Thanks Brian (and Julie) as this post was a great resource to help us make the most informed decisions. Your comments about doctor visits really struck home as I travel thousand of miles, at great expense to see my specialist, and must admit, I sometimes realize later, I just did not get all the answers I sought. I'm at the stage now, coming on one-year since beginning the ipi/nivo combo, and only getting a partial response, that we are now looking at trials. I really appreciate you adding the structure to the process that will help narrow the field. The last time I went on clinicaltrials.gov I did in-fact fall asleep at the wheel. Best it the battle.
Gary
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- October 2, 2016 at 6:25 pm
Thanks Brian (and Julie) as this post was a great resource to help us make the most informed decisions. Your comments about doctor visits really struck home as I travel thousand of miles, at great expense to see my specialist, and must admit, I sometimes realize later, I just did not get all the answers I sought. I'm at the stage now, coming on one-year since beginning the ipi/nivo combo, and only getting a partial response, that we are now looking at trials. I really appreciate you adding the structure to the process that will help narrow the field. The last time I went on clinicaltrials.gov I did in-fact fall asleep at the wheel. Best it the battle.
Gary
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- October 3, 2016 at 12:16 am
Thank you so much for this very informative post. As a "newbie" to the board, the more info I have to read, the better I can help Dad. This is such a scary process, but the Warriors on this board have helped tremendously. Stay strong!
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- October 3, 2016 at 12:16 am
Thank you so much for this very informative post. As a "newbie" to the board, the more info I have to read, the better I can help Dad. This is such a scary process, but the Warriors on this board have helped tremendously. Stay strong!
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- October 3, 2016 at 12:16 am
Thank you so much for this very informative post. As a "newbie" to the board, the more info I have to read, the better I can help Dad. This is such a scary process, but the Warriors on this board have helped tremendously. Stay strong!
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- October 5, 2016 at 4:06 pm
Hi Brian!
I can't tell you how ridiculously happy this makes me! I'm so happy you've gone through a process you're comfortable with and come up with an answer you're happy with. May your clinical trial choice love you back and evict mel permanently!
Shalom!
Julie
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- October 5, 2016 at 4:06 pm
Hi Brian!
I can't tell you how ridiculously happy this makes me! I'm so happy you've gone through a process you're comfortable with and come up with an answer you're happy with. May your clinical trial choice love you back and evict mel permanently!
Shalom!
Julie
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- October 5, 2016 at 4:06 pm
Hi Brian!
I can't tell you how ridiculously happy this makes me! I'm so happy you've gone through a process you're comfortable with and come up with an answer you're happy with. May your clinical trial choice love you back and evict mel permanently!
Shalom!
Julie
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- October 11, 2016 at 9:28 pm
Josh thank you for the information on how to navigate the clinical trials, and also the suggestions on how to prepare to go in and talk twith the melanoma specialists -it is very helpful to people like me who are just learning about all of it and taking in these experiences that others are sharing.
best,
Peggy
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- October 11, 2016 at 9:28 pm
Josh thank you for the information on how to navigate the clinical trials, and also the suggestions on how to prepare to go in and talk twith the melanoma specialists -it is very helpful to people like me who are just learning about all of it and taking in these experiences that others are sharing.
best,
Peggy
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- October 11, 2016 at 9:28 pm
Josh thank you for the information on how to navigate the clinical trials, and also the suggestions on how to prepare to go in and talk twith the melanoma specialists -it is very helpful to people like me who are just learning about all of it and taking in these experiences that others are sharing.
best,
Peggy
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