Cutaneous T-cell Lymphoma

My daughter was diagnosed in April. She never had the rash associated with this disease. She had a swollen node pressing on a nerve causing severe headaches. When at the docters he removed this one and biopsied three others, hence the diagnosis. Does anyone know what docter's are saying regarding prognosis in such cases. I can't seem to get anyone to give me straight honest answers.

I joined this support group hoping to get some feedback from others in my position or in my daughters. I can not believe that I created this post two days ago and not one person has responded.

I'm sorry no one has responded yet to your question, you must feel very helpless at this aweful news. I don't have much knowlege about T-Cell NHL, I am six months into remission from B-Cell NHL. I had a large tumor in my chest and another around my lung that caused difficulty breathing. The Good news was, a few weeks into the chemo the tumor had shrunk to the point where the breathing improved substantially. I hope this will be the case for your daughter with regards to some relief from the head aches. Hopefully your oncologist will be straight forward with you regarding the prognosis and what to expect. It can take a few weeks of tests sometimes for them to determine staging, etc. to give you an accurate assesment. My prayers and heart go out to you and Melissa, and hope for some encouraging news soon. Keep posting, you are not alone!

Love -Andy