kaileetutt

Hey, we have been looking into the IMCgp100 trial. Still trying to find more information about it. It is relatively new but the phase 1 trial did show some promise. My mother has uveal melanoma metastasis to liver & now spreading all over. We only made it through two rounds of IPI/Nivo before her LFT's became too elevated to continue. Since then we have been doing alternating rounds of chemoembolization with BCNU (much less adverse effects & has been shown to work on bulky tumors) & radioembolization Y90 (on the right lobe of her liver where there are smaller scattered tumors). She has shown mixed response to the radioembolization. I'm not sure if you've looked into that option. I'll let you know if I get more info on the trial. God bless! 

I've also heard that most trials do have a traveling/living expense cap. It is worth asking if you have to stay in a hotel or travel to & from. 

awesome! so happy to haer she is doing so well! excited to hear your after scans results. 

So mom made it MO but it turns out that she has too much tumor burden in her liver to elgible for the trial. We were pretty upset, seems like every decision we make back fires. But they do have this other trial she may be a candidate for, Rova-T or full name: Rovalpituzumab Tesirine. It has been used in small cell lung cancer with great results, it is also a rare & very aggressive cancer. They just opened it for melanoma & few other types of cancers as well. She has to get a biopsy next week back in MO to test if her tumors are positive for the DLL3 protein. If they are we can actually run the trial through WA & its only treatment every 3-6 weeks so that means we dont have to move. yay! Trying to not get too excited before knowing biopsy results. At this point this is kind of our last hope for a systemic treatment. 

I will continue to pray for you & mother! 

Are they attributing the symptoms to the Durvalumab? I'm glad to hear her symptoms have been managable & she is able to continue treatment. When will they scan to see if there is regression? 

My mom goes down for her first intital appointment on Monday. 

I hope so too! Keep me updated. I will do likewise, we are still going through the sign up process. I know I would love to hear from other people that are doing or have done gp100! 

Glad to hear she is tolerating it well so far! You guys are in my prayers. We are in contact with the University of Washington in St. Luois, MO & getting mom lined up for gp100. Hoping to get everything squared away by the end of the month. It's going to mean moving from Alaska for us but if it helps or gives us more time, its worth it! 

thanks for all of the info Cindy! great to hear how the first infusion went. hope she continues to handle it all well! keep me updated if you dont mind. you are in L.A. with Dr. Hamid correct? Do you know how many other people are enrolled in the trial there? 

Caitlin, can you share with me your IMCgp100 experience? My mother has uveal melanoma metastasis to her liver & now spreading all over her body. We made it through 2 rounds of IPI/Nivo before her LFT's became too elevated to continue. Since then have been doing alternating rounds of chemoembolization & radioembolization to treat the liver but have not addressed the ever growing spread outside. At this point IMCgp100 seems like our only option & it is hard to find much information on it. We also live in Alaska, to make our options even more limited & difficult– as if they weren't enough. Haha. Hope you are well! 

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.