› Forums › Cutaneous Melanoma Community › Chronic Hives, Angioedema and immunosuppressant drug treatment
- This topic has 7 replies, 3 voices, and was last updated 7 years, 10 months ago by
Sharon93065.
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- July 10, 2016 at 12:23 am
Hello,
I am wondering if anyone has any knowledge or experience with immunosuppressant drug treatment. I have had dozens of moles removed, they were all dysplastic. My melanoma was diagnosed as 2A, ulcerated and a high miotic rate. I have been NED for 7 years and while I don't stress over re-occurrance I do worry about the risks of immunosuppressant drug treatment.
I have had chronic idiopathic urticaria ( daily hives) and angio-edema ( subcutaneous tissue swelling) since 1983. Angioedema causes large, disfiguring facial swelling, the hives are hot, itchy and some are painful. I have head two long remissions, first 15 years, then 12 years. My last flare was 3 1/2 years, the current one 2 years. Antihistamine treatments have failed as well as prednisone, and just recently a prescription drug named Xolair, a protein that resembles one type of human antibody. I am afraid to take immunosuppressant drugs because of the risk of the malignancy they all carry.
I'd appreciate any help anyone here might offer from experience or knowledge, thanks!
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- July 11, 2016 at 2:59 pm
I guess that no one has answered because your question is so tricky.
I am not a doctor. I have no relevant personal experience. I am answering because I feel someone should try to!
Over the last ten years, it has been increasingly obvious that our immune systems have a role in destroying melanoma cells. I have benefitted from Ipi and many others have benefitted from anti-pd1 – both treatments that use the body's immune system to destroy melanoma cells. Also, I believe there are examples of organ receipients developing melanoma because their immunosuppressed system cannot fight melanoma cells that have arrived as part of the transplant.
On the other hand, there shouldn't be any melanoma cells in your system. Your melanoma was stage 2A, so the cells never went anywhere and were completely removed. Your seven years' NED supports this. So taking the immunosuppressant drugs shouldn't be any more dangerous for you than a person who had not had a stage 2A melanoma.
Does that help at all? Have you had this conversation with your immunologist?
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- August 12, 2016 at 1:02 am
Yes, I brought this up with my immunologist at my appointment 2 weeks ago and he refuses to treat me with any immumosuppresant drugs. He says quote " it could kill me and it would be his fault" unquote.
Yet he offered me cyclosporine, but after his comment I was afraid to try it. Since then I found a black spot at the base of the nail on my big toe. Probably nothing but I am going to post about that now.
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- July 2, 2017 at 11:53 pm
What was the black spot? I also have one under the big toenail at the bottom. At first thought it was a bruise but that was months ago. I am making appt with dermatologist anyway i'll have it looked at. I have daily hives now, didnt' have them before. Even before the immunotherapy started. Onc Dr told me i could take Allegra or Benadryl.
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- August 12, 2016 at 1:02 am
Yes, I brought this up with my immunologist at my appointment 2 weeks ago and he refuses to treat me with any immumosuppresant drugs. He says quote " it could kill me and it would be his fault" unquote.
Yet he offered me cyclosporine, but after his comment I was afraid to try it. Since then I found a black spot at the base of the nail on my big toe. Probably nothing but I am going to post about that now.
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- August 12, 2016 at 1:02 am
Yes, I brought this up with my immunologist at my appointment 2 weeks ago and he refuses to treat me with any immumosuppresant drugs. He says quote " it could kill me and it would be his fault" unquote.
Yet he offered me cyclosporine, but after his comment I was afraid to try it. Since then I found a black spot at the base of the nail on my big toe. Probably nothing but I am going to post about that now.
-
- July 11, 2016 at 2:59 pm
I guess that no one has answered because your question is so tricky.
I am not a doctor. I have no relevant personal experience. I am answering because I feel someone should try to!
Over the last ten years, it has been increasingly obvious that our immune systems have a role in destroying melanoma cells. I have benefitted from Ipi and many others have benefitted from anti-pd1 – both treatments that use the body's immune system to destroy melanoma cells. Also, I believe there are examples of organ receipients developing melanoma because their immunosuppressed system cannot fight melanoma cells that have arrived as part of the transplant.
On the other hand, there shouldn't be any melanoma cells in your system. Your melanoma was stage 2A, so the cells never went anywhere and were completely removed. Your seven years' NED supports this. So taking the immunosuppressant drugs shouldn't be any more dangerous for you than a person who had not had a stage 2A melanoma.
Does that help at all? Have you had this conversation with your immunologist?
-
- July 11, 2016 at 2:59 pm
I guess that no one has answered because your question is so tricky.
I am not a doctor. I have no relevant personal experience. I am answering because I feel someone should try to!
Over the last ten years, it has been increasingly obvious that our immune systems have a role in destroying melanoma cells. I have benefitted from Ipi and many others have benefitted from anti-pd1 – both treatments that use the body's immune system to destroy melanoma cells. Also, I believe there are examples of organ receipients developing melanoma because their immunosuppressed system cannot fight melanoma cells that have arrived as part of the transplant.
On the other hand, there shouldn't be any melanoma cells in your system. Your melanoma was stage 2A, so the cells never went anywhere and were completely removed. Your seven years' NED supports this. So taking the immunosuppressant drugs shouldn't be any more dangerous for you than a person who had not had a stage 2A melanoma.
Does that help at all? Have you had this conversation with your immunologist?
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Tagged: cutaneous melanoma
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