I have Cutaneous T-Cell Lymphoma I have had it for years and after years of it being miss diagnoised for exema I finally got a biopsy and got the right diagnosis. I have been treated since 03 and I have tried everything from Puva treatments to Chemo. The best stuff so far that worked for me was Total Skin Electron Beam Therapy basically radiation therepy. I had patches and tumors over 70% of my body and after the radiation I only had 10% left it was the original mass on my leg that lead me to seek treatment. It takes 9 weeks, 4 days week. It wearsd you down but you can manage its doesn't make you as sick as Chemo. I also did some Chemo for 5 months but the results didn't do much so I may wait to go the radiation again.
I fight this everyday and trust me there is days I want to give up but I am a father to three beautiful kids and a wonderful wife and I do it for them I see them and I fight harder! Don't ever give up!
pzo thanks so much for sharing your courage. i have been dealing with an illness that has had me bedridden a majority of the past year and am just now able to gimp about a little in house for small increments of time. your courage has given me hope and a little get up and go. thanks so very much and continued success with your treatments.
Do it for yourself too you deserve it. It is hard when you have to keep repeating things to keep your cancer in control, but look at it this way you are alive to repeat it whether it be for yourself or your family. It sounds like a long haul but your attitude is good. This is half the battle. HUGS and prayers your way for strength to continue the fight for control of your cancer.
Welcome PZO,Truly sad so many folks being miss diagnoised.I had radiation so I know how tiring that can be running everyday for treatments.Not always the easiest road but so worth the good days.Sending healing thoughts your way.Take care,Michele Dx95 FNHL3
Amen! The truly good news is that there are an increasing number of options for those with T-Cell Lymphomas. They are insidious diseases, masquerading as common illnesses - eczema in your case, and a common virus in mine. Have you investigated some of the non-chemo treatments such as Belinostat or Romidepsin? Or even Pralatrexate in the chemo realm? Not to say that any of these will be the answer you are looking for, but opting into a clinical trial of Romidepsin has kept me in remission for over two years now, after an immediate relapse following intensive chemotherapy in 2008. While Romidepsin is not the perfect drug, its toxicity remains low and it is approved for CTCL. I would certainly ask about it.
All the best.