Rare T-Cell Lymphomas 

This is so very sad to hear. May your daughter be free of this torment 🙏🏼

Our Daughter has Peripheral T-cell lymphoma stage 4. She went through 5 chemo treatments and by the 6th one she was too weak so her Oncologist postponed it. Prior to her 6th treatment her Dr said she shouldn’t be having pain, the chemo should have been effective enough by this time so instead of doing a full body pet scan she referred her to a pain Dr thinking she had become addicted to the pain meds. What a bid mistake that closed minded Oncologist had made at the expense of our Daughter, she is now in Hospice and we are waiting for her to Die, I’m so angry right now I could scream. I want every person that has anything to do with this or any other cancer to hear this so hopefully no one else will go through this. Our precious daughter is 44 years old. This just shouldn’t happen but it did because this Oncologist said it never goes there, well guess what, it did go there, to my knowledge it made its way between the skull and protective layer around her brain, it had also settled in her spine.

Hi, my mom’s diagnostic is T-Lymphoma with Sezary syndrome. She is treated with Poteligeo. Her skin was flaky but after 2 treatments, the skin looks good, no flaky. BUT, the worse thing is the itching all over the body. No creams help her. What should we try to calm the itching on the skin? It doesn't let her sleep. How can we help her?

If anyone has been given an HSTCL or NK lymphoma diagnosis I have information extremely helpful.