Hi,
Just wondered if anyone had experience having melanoma then getting CML? I had melanoma with lymph node involvement a few years back and am about to start imatinib today (deep breath! Very scared)
im a little worried as melanoma is supposed to be a cancer associated with the immune system & doesn’t imatinib suppress your immune system?
I appreciate it’s a bit of a long shot / difficult to answer, but wondered if anyone else had been through the same things..
kind regards Caroline
Hi Caroline,
I have not had melanoma, but I have been on Gleevec for over 9 months and have not had so much as a sniffle. My WBC has been low since about 2 mos. post diagnosis but my doctor says my neutrophil count is fine. This is not evidence of anything in particular but that my immune system is functioning very well under Gleevec. Good luck to you!
Justine
No supplements but I do try to eat well, mostly lean protein and vegetables. I have been on 400 mg Gleevec since day 1, going back and forth from brand name to generic because of insurance demands.
Take care!
Hi Caroline,
regarding skin cancers and Vitamin supplements. There is a member of this forum who developed non-melanoma skin lesions after starting therapy for CML - this is not thought to be related to CML and is very rare anyway. He was having a real problem with new lesions every month or so, in spite of having them treated regularly. He did a lot of research and came up with a clinical study in Australia that was treating this kind of non-melanoma skin cancer with high dose vitamin B3, in the form of niacinamide, at 1,500 mg per day. The study was showing some success.
He talked with his haematologist about adding high dose niacinamide to his daily regime and started taking high dose niacinamide daily. Within a month he told me that new skin lesions had reduced dramatically and he had no new ones. I have not heard from him for a while but he was very well last time we talked.
Sandy
I believe flu jabs for those of us on TKIs are very important. The nurse practitioner at my GP is rigorous in making sure I turn up, and over this winter I have not had the level of flu/cold symptoms that many have suffered. As I have a low wbc this is a particular concern, and we all know that flu jabs a re guess about the strain of flu which might turn up, but still worth it for many I would suggest.
I am the member who found the research on Niacinamide (actually my dermatologist found it and recommended it to me). To complete the story, the skin cancers I got were squamous cell and there is no doubt in my mind or in the minds of my dermatologist and oncologist that Tasigna was the major culprit. So I started taking the Niacinamide (1,000 mg per day) and also started reducing dose with my oncologist's blessing. From March to December, I reduced my dose from 600 mg/day to 150 mg/day. I have not had anymore skin cancers since April 2017. I am still on Tasigna 150 mg/day and have been PCRU since September of 2017.
