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.…Read more

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 a…Read more

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…Read more

I wish MPIP was more active, but like Celeste I know many will read your description a…Read more

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…Read more

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…Read more

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…Read more

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…Read more

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…Read more

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…Read more

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…Read more

Best wishes Mark

Am sorry for your recurrence. I hope some of the experts here will post and help you out.

In a way, I think I did neo-adjuvant: in that I was stage III and kept having local recurrences so in the end they gave up on repeated surgeries and put me on immunotherapy. This didnt work either, until they added TVEC and then I started…Read more

Robert, I too was in-transit I think 3d, perpetual in-transit as whenever they did surgery then it…Read more

I will reply since the experts are not replying yet (and I am concerned for you!).

Personally, I think I would stick it out. This is your first scan (but you say you have had keytruda and targeted therapy before so I guess you must have had other scans before) and it is showing mainly good results but sadly a few bad. So it seems to be…Read more

I am sorry but I am not an expert, and also I dont want to give you bad advice. You may need to wait for experts like Ed or Celeste to post or others to give their views. But you did seem urgent so I want to try to help.

Celeste has always said that immunotherapy can take time, be patient with the patient. I am guessing these are…Read more

Sorry about your news, but glad that you found us. I am not a Facebook guy either (I closed my account a year or more ago, good idea). However, this forum used to be really active – and there were more experts who would check in more regularly, so questions would be answered quite quickly. Now it;s much slower and a lot depends on…Read more

Sorry for not writing earlier. There are many fellow sufferers here but unfortunately in recent months less postings and less activity than 3-4 years ago, when this Board was super helpful.

We have some experts here like Celeste and Ed and others who are good on the technical side and on the latest treatments. I dont know NKTR-214…Read more

Am sorry for the pain you are suffering and also your worry.
I am not an expert, but I agree w Judi’s quick response. You are in lots of pain and the oncologist wants to look – so why not? Maybe it is nothing and that would be good to know. Maybe its a problem but not bad enough so oncologist then decides to continue treatment and then c…Read more

I think Celeste remembers what I went through better than I do. I do remember now some metallic taste or just loss of any interesting taste. So I didnt particularly want to eat. And I lost 25-30lbs. (I had gained when on steroids!). Not completely unwelcome – I dropped a few sizes – although of course I was worried that this was a sign…Read more

My hair turned white too – my oncologist denied it had anything to do with my treatment (old age instead) – but it could have been stress or, perhaps more likely, the immunotherapy maybe working. My daughter tells me that my hair is not grey but white (and quite distinctive as a result). This is the only form of quasi vitiligo that…Read more

I asked my doctor and he did not seem to be aware of this though. So like Celeste, I would like to…Read more

I am only replying since no one else did to your last message – but essentially Celeste’s message and summary of treatment is the best information. We all want immunotherapy to work (and it is amazing if it does) but for some of us it does not – which is probably bad news – but in your mother;s case you can use targetted therapy as a…Read more

Am sorry for this bad news, but I hope they can solve your knee problem and the rest remains stable

I have not seen MarkR on the Board for a long time so I dont know how he is doing

I think Celeste and gopher list all the options, although there was a study on relatlimab plus nivo at ASCo which they claimed was promising (I am not…Read more

As always, I agree w Celeste, she gives great advice. I guess to obtain the biopsy first (because the ctDNA test is suggesting no melanoma (I think) and yet melanoma is suspected. Then Dr. Lipson will give you options. I think at that time, when you have the information and the options, that would be a good time to get a second…Read more

I lost about 25lbs too while on treatment – but that was because of loss of appetite and taste. I think I only wanted to eat spicy foods or ice cream. I was worried it meant something was spreading but I think it was just a side effect of treatment. After coming off treatment then I regained (sadly) much of the weight loss. But I…Read more

I had to stop drinking red wine (alcohol) because my ALT and AST numbers (liver) shot up while on immunotherapy. I dont think the alcohol was the cause, but I was told to stop / not to take chances. Also no tylenol.

After stopping treatment and w prednisone, my ALT/AST fell back to normal. Then restarting treatment ALT/AST stayed…Read more

I just tried to respond to you but I forget to mention I was not a robot, so my response failed and I have to type in again.

First, am sorry for this news for you and the anxiety it must cause you.

Second, I am not really an expert – there are others far better qualified on this board who can help you. ALso you can learn a lot by…Read more

I do think (and hope) it is a good sign!! In my case my hair turned white – but my doctor said that was simply aging (or maybe stress/shock) more than vitiligo. But I think and hope you have the real thing, and this could be good news. It shows something is happening to your skin, the immunotherapy is acting on your skin, so maybe…Read more

Am sorry I didnt reply earlier, because I didnt know how to reply – didnt have the information and understand all the issues. But obviously I was concerned for you!!! (Even if I didnt reply)

I think gopher’s explanation / description makes sense. If the trial only means continuing with ipi/nivo (since you have done STING already and t…Read more

It could also be that treatment options have standardized compared to…Read more

I hope your response continues – I had very light tumour burden but pembro didnt work so I had very slow progression, but over one year more than doubling. Until TVEC came along.

So if you are responding then yes its possible that you can get to NED, many of this Board have been lucky enough to do so. If you are feeling down,…Read more

I think Christina may be right in that nowadays as long as you find a melanoma specialist then their advice should be good and centered around immunotherapy. Back in 2016 Stage III i was being offered a trial of interferon vs. ipi (I think), making agonizing decisions and hoping you would get into the right trial,…Read more

I dont like the new format and the loss of profiles (maybe you can put them back), but not sure this is the reason it has gone quiet. Seems just fewer patients are posting. Also perhaps less news as there are fewer treatment breakthroughs. We do…Read more

I hope you will both be OK. I hope restarting treatment will work again as it did in the past – and that for you Jennifer the side effects will be less (although sometimes these signal that they are working) and that you can stay with the treatment.

I find this a terrible twilight disease – as Celeste…Read more

I am sorry for what you are going through. I am not one of the board’s experts so dont really have the best advice.

That said your treatment plan seems reasonable. It may be that the ipi nivo works better than the pembro and also that it has had a chance to work on the latest recurrence, so then it becomes neo adjuvant – it has an i…Read more