It has been a few months since I have been on the group. Tyler my 33 yr old son has CTCL/MF.
We are still having a hard time understanding this. I feel there isn't enough information out there or we are just not understanding this condition. Tomorrow Tyler goes back to NYC to Sloan for his 3 month follow up with the dermatologist and oncologist. He has been using Triamcinolone Cream since he was diagnosed in July and receiving photo therapy since the end of December.
I need to thank you @shari715. You answered a lot of questions for me. If I was not a part of this support group I do not know where we would be regarding Tyler's treatment and my piece of mind. I have absorbed so much information reading this thread. I record the appointment so if we missed something or may have questions later, listen, ask questions and make suggestions when we go to Sloan.
It is nice to have a group to go to for support and give support.
Tomorrow we will see what is next....