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Anyone have Cutaneous T Cell Lymphoma?
Blood Cancers & Disorders | Last Active: Jul 9 8:01pm | Replies (175)Comment receiving replies
@shari715 do you use a chemo cream with your light box? My son is seeing his Dermatologist and oncologist on Nov 7 and I want to ask about some treatments. As I said in my initial post, we have pretty much have been left in the dark about this rare lymphoma. I am really hoping he will get staged at this visit and given a treatment plan.
How does everyone feel about Clinical Studies? My son is 33 and nothing has been talked about in going forward But, the oncologist called and wanted to put him in a clinical study that was just approved in June. There are not enough people with CTCL/MF in our area to have completed this study. They need 20 people to sign up for it and they don't have 20.
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I have only had this diagnosis for 8 months. In the next month I will see my dermatologist and oncologist again. I am only using the light box three to four times a week. I am not sure where you would put the cream as I don’t have visible lesions. The stage of the disease is very important and provides a course of treatment. I remain as of now Stage 1A. The oncologist indicated when the disease progresses there are multiple chemo drugs available. He did not say anything about a cream. I think you will have more information soon. Please keep in touch.