Update and Question

Mark, I highly recommend a televideo consult with Dr. Jeffrey Weber. He has considerable experience with melanoma and various options for treatment as they have evolved in the last 19 years. I had a consult with him last week, and he was extremely thorough and informative. And I have great peace in going forward with his recommendation (also mets spread to brain and recent radiation). In my case, I am going to jump into the ipi/nivo combo. Hope you find your answers forward. Keep us posted.

Mark — you are definitely so British!!!! 🙂 I have been in the States too long!!!! 🙂
I would send him a short polite email, a few lines about your situation (not too many details), tell him you have read about him (and/or Celeste sent you), and would it be possible for a call? You would send more details ahead of time. And how much would it cost. Just be polite. He can only say no (which is unlikely given all the great things people have said about him but he may just be overworked or have too many callers, my doctors are far less open).
He may have some ideas himself, and then you can run through your theories and options for his assessment, also ask him what he thinks about US treatment (I dont think practical) but if its not practical does he know anyone in Europe he would trust?
Good luck!!! Mark

Yes, I paid for a consult but it was very reasonable. And I paid out-of-pocket. I feel funny listing herevwhat I paid and how I went about getting a consult, but if you’d like to, provide your email address and I will email you.

Dear Mark,

Am glad your fundraiser succeeded (thanks to your sister) and also that the SRS went well and that you are responding to chemo too. I respect Ed and Celeste’s info and advice, I think this will be really helpful.

From my experience as someone British working in the US (but fortunately with seemingly good insurance), do be careful on costs. When i started pembro treatment and saw the price on my insurance bill each time i was shocked and depressed. I almost wanted to discontinue treatment as I could not justify the price being paid. It turns out the reality is something different, in that the price they bill the insurance company is often a made up price, the insurance company will pay a different price, so I should have felt less guilty, And anyway i was super sick too so needed help. I dont want to look at my bills but I am guessing 20,000 per infusion (maybe it was 10.000). I easily passed my deductible so then my personal bills were zero while the insurance company was paying a fortune. When they added TVEC then the numbers doubled I think. My point is that if you come to the States I think its really important to have all the costings worked out beforehand, and probably that means you need to be part of a clinical trial but even then am not sure it can be done without some form of insurance and the insurance company negotiting better rates. So I second Celeste’s recommendation to at least talk with Jeff Weber on the different options. Again the problem with us is that we dont know which treatment will work or what side effect we run into or how quicjly it works so it makes estimating the cost really tricky. It maybe that Europe is better, if you can find melanoma specialists doing a trial IMHO.

Second on intralesionals – they worked for me, combined with immunotherapy. It seemed like a miracle and that others should try it. In my case though my tumour burden was low and the tvec woke up the pembro which had been containing things and slowing my progression but certainly i was progressing. Others in my hospital (they dont release details) it didnt seem to work for, maybe they had a larger burden. Still, I like the idea very muich and could be part of the arsenal. My onclogist is eclectic – its a search for which treamtnet works for you, for some of us it takes longer than others.. Again, you need to talk through this with someone like Weber.

On IL2 i think some guy called CharlieS used to post on this – Celeste knows him – hes a great character and it worked for him but its really tough. But if it works, it works!

My bias wojld be to make sure you have the costings right, keep some in reserve, find a trial, and maybe Europe will end up more cost effective than the States.

Good luck Mark!!!!

PS I am happy to (try to) put you in touch with my specialists here in DC, both on the treatment plan but also the costs which in the US can be brutal

Hi Mark — here are my comments on your response to Celeste:

1. Intralesionals. TVEC plus pembro worked for me after one year on pembro when I had slow but steady progression. I am incredibly grateful to the second opinion doctor who put this option back on the table, and to my new oncologist (plus the surgeon who injected the tvec) who did it from scratch and made it happen. Intralesional plus pembro worked for TexMelonamex. It seems its not a miracle cure and I am not sure it will work if the tumour burden has increased, but even then I think it may knock out some of the tumours. And can do more via the abscopal effect. Explain your situation to Weber and see what he thinks.

2. You have to push on this. They must have done a genetic test when they checked your BRAF status so they should know if you have some other weird gene. Ask for how to get a genetic test. . I love the UK and want to come back but not this attitude and lack of imagination.

3. And 4. Chemo plus immunotherapy does not seem to have been tried much but these papers and the ones you have found seem interesting. Again ask Weber for his opinion and whether you should give this a try or go to TILs or IL2 or some other trial.

5. I think you really should contact Weber asap and dont wait for these results. Give him your situation and ask for his free opinion as to what he woujld recommend. Then put forward the options you have discussed and see his reaction. When he gives his recommendation ask him who in the UK or Europe he recommends that can carry out his recommendation. My guess is there are good specialists in Spain / Switzerland / Italy / Germany but we have few European patients on this board.

Another problem with the US, aside from the cost if you run into bad side effects and need a hospital visit, is the long travel time plus Covid restrictions – unless you are able to get an exemption, each time you return to the UK you are supposed to do a 14 day quarantine because the US does not have covid under control. Treatment in Europe, with melanoma specialists, woujld seem more practical. Ask Weber if he could give a recommendation. A total longshot would be Australia but that would mean having to move there!

Good luck but i woujld email Weber now and try to set up the consult – he may be on holiday or busy so I would set this going now. I trust Celeste’s character reference too! 🙂