› Forums › General Melanoma Community › What to try next?
- This topic has 9 replies, 4 voices, and was last updated 6 years, 6 months ago by
Wife_WilliamR.
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- March 6, 2017 at 4:14 pm
I have been a "creeper" on this page since 2010, but never posted. Sorry we are all on here and have to meet like this!
In 2000 my husband William had a Stage I melanoma removed from the back of his hand. In 2010 it returned to his elbow (stage IIIc), he had surgery to remove, 5 radiation treatments and tolerated 5 months of Interferon. It returned to the elbow and small lung nodules in August 2014. He had multiple surgeries on his arm. He started Ipi/Opdivo combo trial at Johns Hopkins from December 2014 – October 2015 and although that seemed to keep his slow growing melanoma at bay it was not eradicating it. Dr. Sharfman recommended we go to NIH for TIL therapy. He received TIL during the month of February 2016 along with 4 doses of Keytruda. Until November 2016 the small lung nodules remained stable, but started showing signs of progression. Docs at NIH recommended the Urelumab/Nivolumab trial which would be back at Johns Hopkins for us. We also went to Memorial Sloan for a second opinion with Dr. Postow who thought the trial was a reasonable next step for us. William started the trial 1/6/17 and after 4 treatments the scans show minimal growth. He is to stay on the trial and get rescanned 4/21/17. If in April there is growth then they would remove him from the trial. I am looking for thoughts on what would be next to try – he is BRAF negative but does have the NRAS mutation. We have "heard" things like TVEC and chemo could be the next step. I am the one who does all the "research" for William and am terrifed I am missing the best opportunities for him. (We live on the East coast, but can travel for treatment.) Thank you in advance for anything you have to offer!!
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- March 6, 2017 at 6:03 pm
Just wanted to say we are all with you and William, Good vibes sent your way
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- March 7, 2017 at 9:40 pm
"I am looking for thoughts on what would be next to try – he is BRAF negative but does have the NRAS mutation. We have "heard" things like TVEC and chemo could be the next step. I am the one who does all the "research" for William and am terrifed I am missing the best opportunities for him. (We live on the East coast, but can travel for treatment.) Thank you in advance for anything you have to offer!!"
My boyfriend is also BRAF negative with an NRAS mutation. He is currently taking Trametinib, which is an MEK inhibitor. He is using it without the other drug they usually pair it with, since he does not have the BRAF mutation. According to his oncologist, Trametinib has been effective in keeping things at least "stable" in NRAS-positive patients until the next treatment begins. She is also planning on using T-VEC in combination with some form of chemo in the near future, since the IPI/NIVO regimen did not work for my boyfriend (it turns out his melanoma had little to no PDL1 expression to begin with). You might also want to look into a trial at Memorial Sloane Kettering for NRAS-positive melanoma patients. I think it is in phase 2 or 3 and they are still accepting patients. Not sure what the success rate has been but its worth checking out.
Hope this helps!
-Emily
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- March 8, 2017 at 3:48 pm
Sorry that both of your loves are dealing with melanoma with an NRAS mutation. That does make treatment even more difficult. Here's a link to all the NRAS related posts on my blog: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=NRAS
Some may help you while others may simply explain what you have already learned the hard way. However, as Emily noted. Some NRAS patients do fairly well on MEK inhibitors. NRAS positive folks can sometimes respond to CDK4/6 inhibitors (which includes LEE011, ribociclib, triliciclib, etc.) There is a study that is about to recruit that uses one of these with pembro.
There is also this study about to be recruiting in Boston: https://clinicaltrials.gov/ct2/show/NCT03065062?term=cdk4%2F6&rank=11
(Stupid spam blocker will only allow two links….see more below…..)
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- March 8, 2017 at 3:50 pm
This trial is recruiting in PA: https://clinicaltrials.gov/ct2/show/NCT01037790?term=NCT01037790&rank=1
There is also work being done with sorafenib (an aspirin product) and nelfinavir [There are posts on my blog…though this may be a bit of a stretch].
There is also some success being found using urelumab. Also…additional tumor testing and applicable drug treatment is being done in the NCI match study. Both of those are addressed at the bottom of this post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/trials-for-joshie-and-paulster-and.html
Not sure if any of that is very helpful. But…I am send good thoughts to both of you and your loves. Celeste
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- November 15, 2017 at 5:58 pm
Hi Celeste, it has been 8 months since I posted. We had a pretty good summer because my husband was seeing some positive results on Temodar. Until October they found a mass on his should blade. He had 5 rounds of radiation but still a lot of pain and not much movement. It has been 13 days since last radiation treatment so still hoping he gets some relief. We are waiting to hear what is next – even those he has already been in 3 immunotherapy trials the docs are talking about trying Keytruda again since he has had chemo and radiation. But we are also waiting to talk to Memorial Sloan about any trials. Do you have any thoughts on what I should be researching to talk to the docs about trying next. Any advice, links or info would be greatly appreciated. As I mentioned originally I am worried I am missing something that might really help him. Thanks so much! – Stacy
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- March 8, 2017 at 6:33 pm
Celeste, thanks for responding. I have been on your blog before and found lots of valuable info. These links are very helpful. Thank you! – Stacy
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- March 8, 2017 at 6:31 pm
Emily, this does help! I am sorry we have so much in common! I will get online tonight and read about Trametinib, and the trial at MSK. I will be keeping you and your BF in my thoughts and prayers!
– Stacy
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- November 15, 2017 at 5:51 pm
Emily, I just wanted to touch base and see how you are your boyfriend are doing. Back in April my husband was put on Temodar (chemo pill) and actually saw some lung nodules decrease in size a little. But in October they found a mass on his shoulder blade. So now we are waiting again to hear "what's next". We still go to Johns Hopkins but have an appointment at Memorial Sloan coming up. Have you guys tried the T-Vec yet? Or still on the MEK Inhibitor? Thanks for any info – Stacy
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- March 8, 2017 at 6:34 pm
Thank you!
– Stacy
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