I have been living with this for over 3 years now , Pain as got so much worse over the last 6 months at my wits end really i am, had another PET scan on monday now got to wait to the 21st july to see if CHEMO will help as nothing else as
Soul girl, I two am living with T-Cell Lymphoma, subtype Sezary Syndrome, I got my diagnosis 4 months ago & after 4 months on the drug Methotrexate was switched to the chemo,drug, Chlorambucil. As this drug has been unable get get the skin cancer under control, I’m starting on an antibody drug Brentuximab. With so many subtypes of T Cell this may not apply to you but if it does, perhaps this can help. my treatment also includes the blood treatment called ECP which has been most active in reducing white blood count.
Hi Norman, I have tried all the above and nothing as worked for me , Sorry to hear you have this illness as well, where is your Lymphoma , mine is in my back and it is eating the tissue away , got a big dip in my back, i have also had radio and that didnt work
Soul girl, thx for the return. So sorry that none of the treatments that I’ve had worked for you. Were you specifically on the drug Brentuximab? If so, any side effects. My lymphoma is in the blood and attacks the skin.causing scaling, uncontrollable itching and swelling of glands & face. Be starting the Brentuximab next week, one session every 3 weeks. Some radiation may be in my future & if so will be stopping the ECP.
