› Forums › General Melanoma Community › Please help , are we at the end ?
- This topic has 9 replies, 5 voices, and was last updated 4 years, 3 months ago by
ra23658.
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- January 16, 2020 at 9:15 am
Hi , posting for my mom. She was diagnosed with vaginal melanoma in oct 2018 , since then she has tried nivo alone for 6 months and then 3 doses of ipi/nivo . It seems her tumor on the liver has grown from 1 cm to 7 cm since starting ipi/nivo.
Oncologist today suggested getting into a trial at UCSF
The medicine is commonly called as xencor. I am sure people here have not heard about it. But please let me know if you have . I am not very optimistic about this trial as this is phase 1.He mentioned surgery is very hard due to the size of her tumor and might not even be feasible, he is going to check with liver surgeons and if it is possible then we will go for surgery followed by his xencor trial
He is not suggesting radiation becoz he feels due to the size and location of the tumor radiation is not possible
The tumor is in the middle of the liver and 7 cm
I am surprised he is basically telling me there are no options left beside the phase 1 Trial ?
Please please pour in ideas on what you did for liver metastasis
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- January 16, 2020 at 2:19 pm
Nivo did not work for me. I went from nothing to metastasis to liver, lungs, pancreas, and a tumor at the origin site on my hip. The next step for me was the TAFINLAR® (dabrafenib) capsules, in combination with MEKINIST® (trametinib). After about 30 days on the drug I can hardly feel the spot on my hip anymore. I don’t get scanned until February so that will be the real indicator. I would think that there should be more options in your mothers case as well. Maybe talk to another DR?-
- January 18, 2020 at 2:12 pm
Sorry you’ve probably figured out by now but yes I am BRAF positive so I guess that will not help you. There seem to be some pretty good replies to your post so Best of luck to you and your mom. I’m being treated at Duke Cancer center by Dr April Salama.
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- January 16, 2020 at 2:37 pm
Here is a link to Dr. Omid Hamid of the Angeles Clinic in LA talking about new drugs and melanoma treatments in clinical trial stages. There are a few ideas to look at, first at the 5:40 min mark he talks about bispecifics like Xencor that is being offered to your mom (first link Deut trials) is offering in phase one trial. Second time point in video is 9:30 min mark where he talks about TLR-9 injectable and third idea is at 11:00 min mark where he talks about masterkey-318 (NCT03663712) T-vec injected directly into liver trial. https://www.xencor.com/clinical-trials/ https://www.youtube.com/watch?v=fbSHUEbhTho&feature=youtu.be-
- January 16, 2020 at 2:50 pm
Here is link to masterkey-318 trial by Amgen and Merck. Best Wishes!!! ed https://clinicaltrials.gov/ct2/show/NCT02509507
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- January 16, 2020 at 2:53 pm
I am sorry for all that you and your mom have been through. I have no magical solutions, but I do have some thoughts~1. Are you sure the drug is “xencor”? I think perhaps that is the company that makes the drug and the drug your mom is considering is XmAb20717? If so, here is some info: https://www.cancer.gov/publications/dictionaries/cancer-drug/def/793410
2. I believe the trial someone else already referred you to (I think), that Melanoma Mike is on, is still open at UCSF: https://clinicaltrials.gov/ct2/show/NCT03484923?recrs=ab&cond=Melanoma+Stage+IV&cntry=US&state=US%3ACA&city=San+Francisco&draw=2&rank=5 It appears to take both BRAF positive and negative patients, so you might ask about it.
3. Some on this forum and in research I have reviewed have had “radioactive seeds” implanted in the liver when dealing with liver mets to some good effect – as a way of helping decrease the size or eradicate the met when other options are not possible. Brachytherapy: https://www.mayoclinic.org/tests-procedures/brachytherapy/about/pac-20385159
4. Melanoma sucks. But mucosal melanoma sucks more. Here are posts related to mucosal melanoma: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=mucosal+melanoma While those articles don’t really offer you anything new…they do address the fact that about 25% of mucosal melanoma patients are NRAS positive. If that is the case for your mom, then here are some things to consider for NRAS positive patients: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=NRAS
5. Perhaps your mom has already had it, but advanced tumor testing for genetic mutations is super important for melanoma patients who have not responded to conventional melanoma therapy. For things like NRAS, but also for more out of the way changes. We have folks on this board whose melanoma has responded to drugs typically used in HER-2 breast cancer, for example.
6. Dr. Daud has a very good reputation as a human and melanoma specialist.
7. While Phase 1 trials are not for the faint of heart, there is hope. I am still here, as a Stage IV melanoma patient, due to a Phase 1 trial I participated in from 2010 to 2013.
I don’t know if you find any of this useful, but these are the things I would be speaking to Daud about were I in yours or your mother’s shoes. I wish you both my best. celeste
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- January 16, 2020 at 8:44 pm
Thanks alot for getting back
I looked at the options you proposed and realized i forgot to mention my mom has mucosal melanoma so is excluded from some of the trials proposed.. You are right the company that makes the drug is ‘Xencor’ and the drug mom is considering is XmAb20717.
My mom has few mutations
ATRX , NF1 , CDKN2A/B , NF2 c.1737+2_1737+31, JAK1 c.1756-5_1762 , These are not common mutations and dont have any targeted treatment available .I am not ready to believe that there are no options left for her. I am exploring TIL now but it seems UCSF doesnt offers TIL and I am looking for another place that does it.
Do you know if I can consult a doc at some other well known place such as MD ANderson via email ? Do they respond and have access to common health portal to look at my moms results ?
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- January 17, 2020 at 3:11 pm
I have argued against the exclusion of folks with CNS disease, ocular and mucosal melanoma from melanoma trials for years – but I don’t make the rules. You are correct, working around those exclusions can be very difficult.It is good that those mutations have been evaluated – and given that she is seen by Dr. Daud, I figured they had been. However, there is additional testing that can be done for things that are more common in tumors other than melanoma – like the HER-2 mutation I mentioned above. You might speak with her docs about that.
If your mom is not BRAF positive, you are correct that targeted therapy will not work for her. I suspect the earlier poster is BRAF positive.
You can ask for a consult with any doc or facility you like. They will need a concise report of her general health, her melanoma status and the treatments she has had thus far. Consultations are very common and Daud’s team should help you attain one if that is what you want to do, but their help is not required. All major cancer centers have contact emails and phone numbers for that purpose on the web. Despite the development of electronic medical records, if you are asking if someone at MD Anderson can access your mom’s records at her current facility – the answer is probably no. For many reasons – confidentiality being one. Generally, only facilities that work hand in hand can “look” at the records of another. However, you can request any records your mom has and send them wherever you like. That even includes tissue samples for additional testing.
Hope this helps. Celeste
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- January 17, 2020 at 4:24 pm
When I was looking for more of a melanoma specialist than what I had at the time, I just grabbed the numbers on the websites and called, and they were very good about getting me going. The did ask me to call my provider and have my records FAXed to them. I called UofMN and the Mayo, and MDAnderson would have been next. I canceled my Mayo visit before I went, because I liked the vibe I got from the Dr at UofMN, but Mayo said to call back again if I change my mind. You just have to give them a call. I think UCSF is probably great, but it’s never hurts to talk to additional people. Also, a certain facility might be great, but certain individuals might not be. Or vice versa.
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