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Desperately need help, advanced stage 4

Forums General Melanoma Community Desperately need help, advanced stage 4

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      My wife diagnosed with stage 4 in Oct 2018, no recent primary but had small stage 2 in 2006 w clean scans for 5+ yrs and stopped by insurance and STD of care.

      1. Ipi Nivo combo, 2 infusions and then grade 3 AE in hospital 2 days. 4 month taper on steroids, no treatment. Initial 25-30 pct shrinkage. Also SRS radiation for some brain Mets.

      2. Finally resumed Nivo only for 3 treatments. Growth.

      3. Due to NRAS mutation, tried Trametinib MEK inhibitor solo 4 mo. Initial some response, then growth.

      4. Tried Nivo plus olapaparib due to ATM mutation. Growth.

      5. Back to Ipi 3 mg solo plus Leukine injections to help reduce toxicity. Garde 1-2 AE. Oncologist wants to stop ipi.

      6. Recommend TMZ plus Hydroxychloroquine, it works as anti- autophagy for cancer. Due to regrowth of brain Mets. We’re doing more SRS radiation instead.

      What do we try next?????

      Need a good COMBO therapy, our doc doing too much single agent, doesn’t work!!!!

      Nktr-214, anti lag-3, IL-12 or 2, TIL, more NRAS focus with cdk46 or other inhibitor?????


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          I am so sorry for all that you and your wife have endured and the things you still face. First and foremost, are you seeing a melanoma specialist? I mean, she has had a lot of good therapies so you may well be, but it definitely wouldn’t hurt to at least consult with a Melanoma Big Dog if you haven’t already. Here is a list I put together of some of the docs on the cutting edge:

          You seem very well versed in melanoma treatments. Your last line includes the treatment strategies I immediately thought of:


          There is also this:


          TIL – Here is a link to a prior discussion on this forum with lots of links to info within –

          CAR-T could be considered.

          Here is a post I put together with the “new” treatments for advanced melanoma coming out of ASCO 2019 (includes NKTR-214, IMO-2125 [TLR agonist], TIM-3/PD-L1, TNF, and TIL):

          I would also advise tumor testing, though it seems that you have done at least some of that already, given some of the treatments you noted. There are occasionally melanoma patients – there are at least 2 on this forum – who are doing very well on drugs not usually employed for melanoma. One happens to be on drugs most typically used for HER-2 breast cancer.

          Here is a link to 62 currently recruiting clinical trials for advanced melanoma and solid tumors:

          You may be familiar with this resource already. You can change the parameters as you see fit. I find you get more options by including “solid tumors”. If you are unfamiliar – the first bit describes the treatment offered. Google unfamiliar drugs and/or ask more questions about those that interest you here. Then comes the inclusion and exclusion criteria. Very complicated for a much treated patient. Then a list of locations enrolling folks for the trial. Bottom line – if you are the least bit interested in the trial – call!! Even if you don’t think your wife will qualify. You may find that she actually does. Or you may be directed to another treatment option.

          All of this may be of no use to you. Look for a response from Ed or research his prior posts. He is genius at finding options for difficult cases. Hang in there. I wish you my best. Ask more questions as you have the need. Your wife is blessed to have you fighting for her. Yours, celeste

              Thanks a ton, Celeste, extremely helpful!
              Re Docs: we are in Rochester NY so treated at the Univ of Rochester Med Ctr, Dr. Deepak Sahasrabudhe, one of just 2 med oncologists. Rated about #41. Jul 2019 2nd opinion w/ Dr. M. Postow at MSK (#2) and then Feb 2020 at MD Anderson (#1) clinic at Cooper Univ in Camden, NY w/ Dr. J. Morrison. They tended to agree w/ Dr. Deepak, MSK works closely with him. Suggest maybe NRAS focused CT such as combining MEKi (Cobimetinib or Trametinib) with CDK inhibitor Ribociclib. Or ACT-TIL. We are planning to go to Moffitt (#8) in Tampa to see Dr. Khushalani in next few months as we have a 2nd home about 1 hr north of Tampa. At home in Roch, we are also about 1 hr drive from Roswell Park CC in Buffalo (#14) and have looked at possible trials etc there, but prefer to use Moffitt if we switch from Roch NY.

              Re genetic testing: Foundation One testing showed most important were NRAS and ATM mutations. Tumor Mutational Burden = Intermediate, meaning moderate response to immuno. Microsatellite status = MS-Stable, meaning less likely to respond to PD-1 immuno, which is why Nivo hasn’t worked probably. TERT promoter -146C>T, this does not seem very important or attackable. BRAF negative, KIT negative.

              Thanks again!

                Glad to be of some help. Dr. Postow certainly has an international reputation. Obviously MDA and Moffitt have good reputations as institutions and the nursing staff at Moffitt cannot be beat. In fact, I was treated with nivo in a phase 1 trial at Moffitt from 2010 – 2013 along with additional years of follow-up. Though there may be some personal partiality – his international reputation as a preeminent melanoma expert and researcher stands on its own – the international expert who was once at Moffitt is now in your neck of the woods as Jeff Weber is now at NYU. That is certainly who I would check in with if I were in your shoes. Fingers crossed that an effective treatment plan is put in place for your wife very soon. c
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