Mark_DC

Dear Brian

I remembered to log in again to check up – seems you are in good hands now on this Board with Celeste, Ed, JudiAU and others chipping in, and I hope you join the Facebook group too.

I also echo what Celeste wrote – her website was great especially because at that time immunotherapy was taking off but not all doctors were aware. Celestes advice was always to be treated by a melanoma specialist (not just an oncologist). I ended up finding that the ideas on her website and from Ed and other experts on the Board were matching my doctors because they were melanoma specialists. And they also gave me great advice when faced with difficult treatment decisions (judgment is involve) and also general encouragement – that we may get lucky.

That said, I am concerned that your doctor is not exactly a melanoma specialist. Sharfman at JHU is, although I dont know him. I think it’s super critical to have a doctor who is a melanoma specialist. I can recommend Lipson at JHU who I think is in Baltimore and not just DC and who i know has been involved in immunotherapy clinical trials (Lipson is one of the authors of the relatlimab study and he lives near you!). But also my doctor Rapisuwon at Washington Hospital Centre who had the guts to put me on TVEC plus pembro and make it happen (not an easy treatment to administer), and Gibney and Atkins at Georgetown. My advice would be to switch to JHU, if your insurance works.

Then you can also contact the superstar doctors who Celeste mentions, like Weber and others, if you get stuck. But a good melanoma specialist would be a good start, and you want someone like this who has great judgment and who has seen tricky cases before to be taking care of you. SO while I dont think it’s proper for me to do so as your doctor could be great I think there are better melanoma specialists in the area, so I would work with them.

Then others in the facebook group who are more knowledgeable than me and up to date can help you too.

I really hope your treatment goes well, best wishes Mark

Dear Brian

Am sorry I cannot really help as I stopped posting long ago as my Stage III melanoma finally cleared and I stopped treatment

The chaotically website is great – Celeste is the author and she used to post here and she’s expert as is Ed Williams. Ed posted recently and he says the forums have moved to Facebook so please try to find him and others there

I think JHU is a great choice – I cannot remember the doctors there but I know Evan Lipson there is great (I saw him in DC) – have heard of Sharfman think he’s good but don’t know him

You could also try my doctor Rapisuwon who is at medstar washington hospital centre in DC. He probably saved my life (I was lucky) and he knows his stuff as do Atkins and Gibney at medstar Georgetown

You have it right in that the Braf medicines get great results but typically don’t last so they buy you time for immunotherapy and better treatments. Then you get the problem of side effects from immunotherapy etc steroids to address them and then go back on immunotherapy

But most important is to get a good doctor- sharfman should be ok but please try out the people I mention too as they know the latest developments

Am sorry for your wife but I hope my advices helps (looked in by chance only and thought should try to help)

Best wishes Mark

Dear Isaac,

The therapy you mention is also known as TVEC or T-VEC, so if you search on this website for TVEC you will find more information. Also there have been some recent clinical studies in melanoma using this and you can find the results on Google.

For me it worked. Immunotherapy did not work for me, slow progression of disease, but when they added TVEC to the keytruda immunotherapy then i started to respond. So it was a miracle cure, but for me. My sense is that it works well when immunotherapy is almost working but not quite, and then TVEC gives it an extra kick. My sense also is it works better for local cancer rather than one which has spread, but its also possible it can work in this case too. My doctor was not able to do the TVEC but fortunately I found a doctor who would, so I switched doctors (against my will) and got really lucky!!! (And of course am very thankful to the doctor who maybe saved my life!).

I have no idea how you would obtain the treatment. For me, my insurance said it would cover, then said no, then said yes again. So it might be difficult to obtain.

Ask your doctors opinion, but maybe s/he has better options

Good luck and sorry for your wife
Mark

Well done too! Great you found a doctor who would still treat you despite the bad liver numbers

I agree with Bubbles / Celeste – thanks very much for posting. And also for this update including NSAIDs as your treatment sounded pretty bad, so it’s good to know that normally it might be less onerous than what you had to go through – and kept writing to us.

I wish MPIP was more active, but like Celeste I know many will read your description and benefit from it immensely. I may have to get in touch with you too if mine recurs, since I know you are in the DC area. not sure i would have been able to have been treated in New York or received the help you did to make it possible

I hope you are recovering and wish too for good scans
Take care Mark

Hi Jeff – sounds terrible but glad that it seems you are recovering. No idea it would be as tough as this. I just logged in by chance and saw you had posted.
I live in DC near the Cathedral – I was treated at Georgetown by Geoff Gibney, he recommended Evan Lipson for second opinions when things were not working and we needed new plans, he recommended adding TVEC to the pembro, and my hero is Dr Rapisuwon at Washington Hospital Centre who made this treatment possible (others didnt want to bother to set it up) (and Dr Boisvert who injected me every two weeks). Dr Lipson always explained clearly and with respect. I dont think he knows his ideas might have saved my life.
Your path sounds tough but I hope it works.
Happy to meet in DC when you get back!
Best wishes Mark

Jeff, good luck and thanks very much for posting
Your clear explanation will benefit many of us
Thank you, I really hope it works well
Mark

PS I have met Evan Lipson a couple of times, he was my second opinion doctor, and both times he was great. His advice the second time round caused my doctors to rethink – we finally gave the TVEC option a chance (not easy to find someone to administer though) and it helped me respond. Am very grateful to him.

Hi Leon,

I am not as expert as Celeste or Ed, but am a little puzzled. A few years back when on treatment with ipi and later with pembro my liver numbers shot up – but I think to just below 200 ALT. They put me on prednisone, which worked, I think it took a month or two. Then they put me back on. No alcohol or Tylenol also to help the liver.

So I dont know your medicine – the usual I think is prednisone
Also I agree with you – I dont think you would know in 3 days whether the immunosuppressants were working. I cant remember but I think I did my liver readings one week later or so.

ALT 323 is higher than mine, but you would need experts to tell if its so much higher that you might need high risk drugs etc – sounds a bit odd to me.

I hope the liver numbers come down. I dont know where you are, you were about to give the location but then dropped off.

THis board used to be excellent and helped me through my treatment, maybe saved my life, certainly improved my attitude. But my understanding is that the Facebook group is now far better, and I hope the people there will have lots of great suggestions for you

Best wishes and good luck Mark

Hi Martha,

To answer your question – you are probably right.
My first occurrence was on my lower left leg – removed by surgery / WLE – I think Stage II though (I should have been more worried)
Second occurrence was skin lesion in the same place – about 2 years later (I think 2016 but now I lose track) – removed by surgery, then I was put on ipi adjuvant – but could not tolerate – then 6 months later a recurrence in the same area but not on my skin, just below – and another small recurrence – I think 1cm and 0.6cm
Since surgery was not working, they put me on pembro (although i think surgery was an option as it was just below the skin, it was “palpable”). But w skin grafts etc surgery would have been difficult plus I keep recurring.
Pembro dissolve the 0.6cm tumour (it grew and then burst, like pseudo progression) – but it could not handle the 1cm tumour which slowly grew to about 3 cm one year later
But no spread either
So I would have had a third surgery in the same area but after a second opinion we tried adding TVEC as an option, with the pembro, and I think this gave the pembro the extra push it needed – and after one year of treatment it disappeared (after 3-6 months you could see and feel it shrinking)

We have proper experts here who can answer but I do think pembro can cure skin lesions not just those under the skin. Typically surgery is standard but if surgeries keep failing then immunotherapy seems better. I just got really lucky that adding TVEC worked. I was optimistic thinking it was 50-50 but probably my odds were about 15-20 percent at that stage. But as others on this board used to say, somebody has to be that 15 percent and finally, after failing pembro by itself, the 15 percent was me. So of course I am extremely happy!!!!

Good luck Martha – you are NED, you are “only” stage II (although it’s still a risky stage sadly), you are able to take adjuvant therapy that probably works (we didnt have that option), it should not recur, but if it does recur you have options too – adding TVEC or some of the other new combo treatments. In my case my tumours always stayed local, never spread – so this helped my odds and I hope will be the same for you!!

Best wishes Mark

Hi Martha,

I think you are taking a good approach. After my first surgery my surgeon gave me the impression all was fine, that i could see an oncologist but that it was not really needed. I think he said something dumb that after the removal then I went down a stage from stage II to stage I (I know this is not true!). I should have been more concerned but thought it was all over (just wear sunscreen cover up etc). It was traumatic enough. And anyway no treatments at that time. So I am glad you are seeing an oncologist too not just the surgeon and yes I would try adjuvant.

On side effects, I cannot remember them now! I think a general tiredness and more fatigue, probably less than the one time I took ipi. I think I forced myself to ignore it, by continuing to walk and cycle. To keep some kind of regular exercise and not take the side effects too seriously. Adding TVEC the side effects were much worse, but only on the day following treatment. Of course there are potential very serious side effects from pembro, so you need to do your bloodwork regularly. I was allowed to travel overseas on pembro; for ipi my doctors strongly advised against because of the risk of serious side effects.

So with luck you wont get serious side effects, and try to ignore the fatigue side effects if you can. OK the liver side effects were high ALT AST numbers – but I didnt feel this at all, they were signs of potential trouble. So they take you off treatment 🙁 and I had to stop drinking alcohol which was a pain because a glass of red wine each night was my reward to help me get through this.

Remember you are stage II plus monitoring fairly closely so your odds are much better than those you read about. I also hope you are seeing a melanoma specialist at a good hospital. Finally, NRAS is a pain and we dont have the targeted therapy option – but I dont think its true to say that our odds are worse or that its more aggressive then BRAF etc. This damn thing could recur, I know this, but I have been incredibly lucky and, inspired by people here like Celeste (and Ed for his help and knowledge), and other sufferers when the board was more active, I have tried to be positive and be really grateful for life. With luck (prayers maybe?) it will turn out this way too for you.

Best wishes Mark

Dear Yoja

I am NRAS and immunotherapy – in the end – worked for me!! People with NRAS seem to worry more, and we dont have targeted therapy available, but immunotherapy can work.

I am not sure I understand your case as I think you are Stage 2, I think had surgery to remove, all is gone, and now you are taking pembro as adjuvant (is this correct?). So you are taking quite a cautious / aggressive approach. I think my first occurrence was stage 2, surgery removed, then unfortunately i recurred 2 years later putting me at Stage 3 (I had not expected this, my surgeon led me to believe i was totally fine after the Stage 2 surgery). That meant a second excision on my lower left leg and a massive scare and weeks in crutches etc. Then I tried ipi but was kicked out for side effects. Then melanoma came back again only a few months later, again in my lower left leg. This time they said surgery not a great idea, so i went on to pembro straight away.

Anyway, my point is that if you are Stage 2 then maybe what happened to me will not happen to you at all. Plus you are taking pembro as adjuvant at stage 2. So i would think your chances are much better than mine or of most patients on which the data is based. ALso you are younger etc. So the data you read may not apply to you, your chances may be better.

Back to my case. I was tested and like you i came out BRAF negative and NRAS positive. My onc told me not to worry, In fact there were some early studies showing that immunotherapy might work better for those with NRAS but I am not sure these are correct. My sense is that immunotherapy success rates are about the same with NRAS as if you were BRAF (maybe NRAS slightly worse).

I took pembro for one year – with breaks for side effects, put on prednisone, then liver numbers recovered, then back on pembro. It worked but didnt work – my tumour grew slowly and steadily but no spread. I was about to have a third surgery in the same area (would have been a nightmare) but instead my onc suggested adding TVEC to pembro – I had to switch oncologist and hospital for this treatment. But amazingly it seems to have worked and I have been NED 3-4 years (I lose count!!). So pembro CAN work for NRAS but in my case I needed TVEC plus Pembro for it to work!

So in short, NRAS may have a kind of stigma. Not sure its completely deserved. Immunotherapy can work for NRAS (in my case I needed to add TVEC). You are stage 2 and removed so with luck it will not recur. Just keep an eye on your body and look out, in case it recurs catch it early, but I think you are doing the right thing, taking pembro adjuvant and monitoring and this can work for NRAS!!!

Good luck and hope this can reassure you. But yes I am NRAS positive and pembro plus tvec worked for me! For which I am incredibly grateful – every day I remember this miracle

Thanks Celeste – I had assumed the likelihood of a new cutaneous melanoma was low, and from your reports it seems really low. That said i see my dermatologist every three months (though i need to see him now) and if anything weird happens I go right away (I didnt do this for my recurrence a few years back and felt an idiot!)

Hi AzSoCal

I remember you from when you used to post.
Like you I post less these days in part because there is less activity here but also because in the end my treatment started to work, and staying on the board was not helpful – although I wanted to help others. And I just took a four week vacation and I found myself forgetting about this board.

I cannot help you with the pathology reports (surely there is more detail), and I was hoping that you didnt have a recurrence (but seems from the biopsy that you did). I just wanted to write to tell you that I ended up doing what you are doing, and I htink it makes sense. I was on keytruda on and off for a year or so – it cured a tiny tumour but it could not get rid of the larger tumour which kept growing but slowly. We were going to give up and do surgery (that would have been my third surgery in the same area) – so I guess in a way this was the neo-adjuvant approach. But before doing this we decided to add TVEC, based on a second opinion and a last chance to avoid the third surgery (which would have meant a long recovery time and rehab after plastic surgery). In the end the TVEC plus Keytruda worked – the first few weeks the tumour probably grew slightly (you can see it on the ultrasound used to inject the TVEC) but then it stabilized and started to shrink. And one year later (just over) the tumour finally seemed to have disappeared.

So my point is, I think this approach can work. I would definitely favour TVEC plus keytruda vs. Keytruda alone. And if it works well maybe you can avoid surgery. But if not, then I think gambling a little by keeping the tumour in place and using immunotherapy could give a better result than surgery and then keytruda. So I think its an interesting plan, and if your tumour is localized (think it is) then I think it has more chances of working. And if ipi is too risky (as it was for me) then I think adding tvec is a good alternative way of getting the keytruda to work. I hope it works for you as it did for me.

Good luck Mark

Dear Gigi

I am not an expert and have not posted for a long time – you can read my earlier posts for my experience – `I hate to give you advice as it may be the wrong advice.

I was in the opposite position and was about to have my third leg surgery for which the prognosis was good or morbidity and after effects should have been ok, but would have meant a number of operations and I think the whole process would have lasted 10 weeks with a week or two rehab at a facility. I can’t remember the problem but I think they had to add a flap or something, i dont know. Anywat I was ready to do it but then my second opinion doctor said why not first try adding tvec to the pembro which I was taking but was not working although progression was local and slow but persistent.

So we did that and after three months it started to turn around and shrink. After a year I could not tolerate well but also it was tiny on the scans and they couldn’t see on the ultrasound so they gave up. Then three months later my scans were clear.

I guess my question to you and your doctor is, why can’t you stick w the treatment that’s working well? Could you do a biopsy to make sure it’s really melanoma still and not scar? Are they happt now it’s so small that surgery is finally viable and possible? Are they worried you miss this chance? If not, then why not keep going w the immunotherapy?

For me a lot depends on the risk of the surgery. For me it would have been lowish risk but an ordeal. I am glad I never had to face it. And also the risks the treatment stops working but maybe just super frequent scans could detect this and then go to surgery immediately if it stops working. I would talk through the risks and options with your oncologist and your surgeons. What would they decide? Are they melanoma specialists? I think I would also seek a second opinion from another melanoma specialist.

My instinct would be to keep w the immunotherapy if your melanoma was in only one place and the meds are working. But to be ready to go to surgery if the shrinkage stops and a biopsy confirms still melanoma. But I would not take my advice I would discuss w your doctors and ask them to recommend a second opinion doctor. Do they have a tumour board for you in the hospital and what does the board think?

Well done on the response, you are lucky, I hope you pull it off!
Good luck mark

Dear Ed – dont know what this is about, but thanks for making the extra effort to contact this person (the post seems to have disappeared). Really excellent of you!!!! Let’s hope for good news too!

Best wishes Mark