I received my molecular diagnostics on my tumor before I start Pembrolizumab. I requested the test (not the doc btw). I am meeting with the doctor in about 2 weeks so in the meantime I’m scrutinizing every detail of these results.
- October 1, 2022 at 10:59 am
Recap: I was diagnosed at stage 2C about a month after my pregnancy. My tumor was FAST growing. It was flat dry skin on my lower back then became a bump (4.2 mm, ulcerated, 7 or 17 mitosis) over the course of about 6 months. I had it checked twice while prego and was told it would resolve after pregnancy. It seems like nodular but haven’t been officially told that. The people at MGH don’t seem to think the nodular classifications and whatnot are meaningful. I will start pembro soon. I’m not too rushed to start because of breastfeeding. I will have to stop bf-ing on Pembro because there hasn’t been any studies on it. The onc said she doesn’t see how it could harm a baby, but better to be safe.
So, as my doctor said, the mutations are not biomarkers (as far as they know) for immunotherapies response. She did say that gut microbiomes are being studied for biomarkers so that is TBD. Anyway, I got my tumor results and it says I am BRAF negative and NRAS positive and a bunch of other stuff. I think this is bad if this disease recurs. It has a low Tumor Mutational Burden which I also think is bad from what I have read. Actually, everything about this tumor is bad or potentially bad.
So my question is: Have anyone NRAS positive people had success on immunotherapy?
No pressure to respond and this is mostly a rant and I realize there are so many unknowns here, but any thoughts are very much welcome!
- October 2, 2022 at 8:35 pm
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
- October 3, 2022 at 9:59 am
Thank you for the response! People here are very supportive and I am very grateful for that!
You are correct that everything was removed with surgery, no lymph node spread. But nevertheless I am taking an aggressive approach because the tumor was thick and treatment is available! (THANK you adjuvant for Stage II approval!). It is interesting that you say the surgeon led you to think all was fine after surgery. My surgeon gave me that feeling too but not the medical oncologist. She makes me feel the opposite.
It sounds like you have been through alot. But it is wonderful that your treatment of Pembro plus Tvec worked! That is truly amazing. It sounds like you are doing all the right things.
You mentioned liver issues. Did you have any other side effects? I hear very mixed reviews about pembro, but generally pretty good.
Again, thank you for your thoughtful response! Its good to talk to others who have been through this.
- October 4, 2022 at 9:55 pm
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
No wine, oh my… I hope that didn’t last long. Your words and hope inspire me. Sometimes I get overwhelmed by worse case scenario, and that just doesn’t do any good. And the internet is filled with good information and ways to connect with others, but, at the same time, it can be a dangerous rabbit hole!
- October 5, 2022 at 6:38 pm
Also, one more question about your previous post: When you had another recurrence on your leg, did they not remove it, but just treated it with Pebro? For some reason its hard for me to wrap my head around immunotherapy targeting skin lesions.
- October 6, 2022 at 10:23 pm
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
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