The skin cancer is a sarcomatoid SCC, so life gets more uncertain, as it’s a rare complication of an already rare disease. Excision was OK, with clear margins and no sign of metastases, but there is some likelihood of future spread. But not enough data to put a number on it. So, life goes on. I’m seeing surgeon for a proper debrief next week - this was a phone call - but she did say that vitamin B3 had been shown to help reduce metastases in SCC in Australia, and she’d tell me more then.
Rachel
Rachel, I’m so sorry to hear this, how worrying for you, but very good that it has been cleanly removed. Thank you for passing on the information about vitamin B. Do let us know if you find out any more details. Sending you E hugs. Xx
So sorry to hear this Rachel but it’s good that it was all removed. I have heard of the vitamin B3 helping to control these types of skin cancers, as I have friends in Aus that have both suffered (husband and wife) with Sarcomatoid SCC all have been removed and they also take large doses of B3 and so far they have had no more flare ups, also this was quite a few years ago now and have regular checks, but it has worked well for them.
Sending you hugs
Jean x
Thats good to know. Interested that yr friends have been using B 3. WhenI find out how much to take and what formulation, I’ll post the references here.
R
Rachel, I'm very sorry indeed to hear about this. As if you don't have enough to worry about. I'm thinking of you.
Paula
Sorry to hear this Rachel, but very encouraging that there are clear margins. Hope you get more clarity on the situation next week.
Keep us updated and take care.
Mary xx
So sorry to hear about this, but glad it's been removed. Best wishes for the debrief next week.
Hi Rachel,
I had a carcinoma removed from my face three years ago .It was just a red mark on my left cheek,as with P V we always have red blobs I didn't worry until it began to flake.I was lucky to have a top surgeon,however he had to cut my face from temple ,under eye then down my cheek next to nose as it had spread under the skin.I was in dressings for weeks ,changed by nurse every day.No -one really notices except me that my face is slightly uneven.
I really feel for you to have to have more problems...I see a Dermo lady who burns off several nasty things that appear,chest,legs ,back.Always something with our weird maladie....I hope you manage to get good help ,nothing more depressing than the face spoiled.I did an expo in U K when I still had dressings on,a lady asked me if I had had a face lift!!!!!
Very Best of Luck to you. Sally.
Skin cancer and hydroxyurea 
Scuba & MF while on Jakafi?
