- May 11, 2017 at 8:19 pm
So after 2 cycles of Abraxane (which my mom tolerated pretty well and didn't even go bald), we just found out that my mom progressed again. She now has four lesions on the liver, and some increased lung nodules. Dr. Ribas at UCLA recommended that she start clincial trials, but due to her previous toxicities to immunotherapy, the only trial that she qualifies for at UCLA is for RGX-104.
We then went to Dr. Hamid at the Angeles Clinic and he offered us IMCGP100 (which is offered at UCLA as well, but I think Dr. Ribas is more conservative about what he offers us). It's currently being amended to allow for mucosal melanoma, but it has had some good initial results for ocular melanoma. We do have to wait for the trial to be officially amended (does anyone know how to find this out?), which Dr. Hamid hopes will coincide with the washout period for the Abraxane (2 weeks to go). Dr. Hamid has already cleared my mom's previous toxicities with the medical monitor, and he doesn't think it will be an issue (he was even willing to try another dose of Keytruda). Dr. Hamid has really been an amazing advocate for my mom and we are so glad we are doing the trial with him. If anyone is in this trial, I'd love to hear more about their experience.
Dr. Ribas recommended that we try Sloan Kettering and MD Anderson for other trial options, and we are in the process of looking into those just in case IMCGP100 becomes not an option for us. Interestingly, he told us not to volunteer too much information about her toxicities when she goes elsewhere.
rabbits68ParticipantI was wondering how Abraxene was doing for your mom. I progressed pretty quickly after just 4 treatments. I hated every minute I was on it. I have been to Sloan Kettering and have qualified for an immunotherapy trial to begin next week, but I didn’t have toxicities on other therapies. I pray the treatment she is on will work for your mom. If you need to seek further treatment, I highly recommend MSKCC, I am seeing Dr Alex Shoushtari and he is very encouraging. It’s a little hard with the travel but I am planning on it being with it! Hope all goes well for your mom.
- May 20, 2017 at 1:16 am
- May 31, 2017 at 11:50 pm
Thank you for the recommendation! I saw that Dr. Shoushstari also specializes in non-cutaneous melanoma, so that would be great. So far we have ventured to MD Anderson as a test run since it's closer to home (we're in CA). My mom actually did really well on that trip and has been doing well in general lately, so going to NY wuold be a real possibility now! We're currently in a washout period post-Abraxane waiting to start the IMCGP100 trial. It doesn't seem like many people in this forum are on that trial, but I'll keep everyone posted.
Which trial are you starting? I hope that it will have good results for you.
- July 6, 2017 at 3:06 pm
Hey Cindy, have you started the IMCgp100 trial yet? If so how are you responding? Please give me any details you possibly can. My mother has uveal melanoma metastasis to her liver & now spreading all over her body. Her liver is still the most life threatening organ at this point. We made it through 2 rounds of immunotherapy IPI/OpDivo before her LTF's rose too high to continue. Since then she has been doing alternating rounds of chemoembolization (on the left lobe of her liver) & radioembolization (on the right lobe of her liver) to slow the growths. She has shown mixed response on the right lobe of her liver, but this has done nothing to slow the spread outside of her liver. We live in Alaska so treatment options are very limited unless we travel or move out of state. We have been in contact with Jefferson University Hospital in Philadelphia, Renee Zalinsky (RN/secretary), has been beyond amazing over there repeatedly answering questions & supplying information. They have recommended starting the gp100 trial. We of course are running out of options, at this point it's either that or starting abraxne, which we don't have high hopes for. Please let me know how you are doing.
- July 7, 2017 at 7:43 pm
Hi, I happened to look through old posts on the forum to get information about IMCGP100 myself and saw that you posted on several old threads and I wanted to let you know that most people don't check older threads (the website doesn't notify you when something has been posted, so they have no way of knowing that you posted there). I actually just posted an update on the trial yesterday in a different thread and will keep updating it if you want to follow that:
My mom literally started just this week, after almost 2 full months of waiting (getting on clinical trials is difficult for people with rarer cancers because they need to get all the approvals in place). I have read a lot in theory about IMCGP100 and uveal melanoma as well, but I have also been trying to find others who have done this treatment to see if it was effective for them. So far I've only found one person, who had to switch to TAF/MEK, but does believe that there is still a synergistic effect happening from the IMCGP100. My mom has mucosal melanoma, which like uveal, is rare and doesn't get a lot of coverage. Please feel free to message me directly if you have any other questions. I would be happy to share.
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