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What helps with the pain of T cell lymphoma?
I was told this morning that I have t cell lymphoma. Needless to say, I am devastated by this diagnosis. This is my second cancer diagnosis. I survived the first and I know I will survive this one as well.
Does anyone else share this diagnosis? My is extremely painful, My skin just feels like it wants to rip. I have used steroids and topicals but I can't seem to reach the pain, I prefer not to use opoids Any suggestions would be greatly appreciated. I see my oncologist in 2 weeks. Not sure what the treatment plan is going to be.
Thank you in advance for any suggestions,
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Good morning, I too suffer from T-Cell Lymphoma, my subtype is known as Sezary Syndrome. My diagnosis was in Jan. ‘23 so quite new to this cancer. My first line of treatment was a weekly dosage of Methotrexate & a short regime of Prednisone & 26 sessions of ECP. When this became ineffective I was switched to infusions of the immunotherapy drug, Brentuximab. After about 12 weeks this lost its effectiveness & I’m awaiting a start with Mogamulizumab. Heard good things about this drug so anxious to get started.
My most serious symptoms are chills & itching. For the itching I use a steroid cream & hydrocortisone in mixture i make up with a glaxal basecream.
Don’t really consider this a pain, just an irritation.
Trust this a little helpful
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2 ReactionsGood morning @frustratedforthe2ndtime. Your @name says it all. The frustration and disappointment has to be enormous. I’m so sorry you’re having to deal with yet another round of cancer. It wasn’t easy the first time, I’m sure, but you now know you have the coping skills and the hutzpah to tackle this head on!
There are other members in the forum, like @norseman44 who have this form of lymphoma. There’s a discussion you might like to follow with members @cindylb @somed @shari715 and several others in this discussion:
Anyone have Cutaneous T Cell Lymphoma? https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
They may have some more insights for you. There are a number of treatments available so I’m hoping with your upcoming visits with your oncologist that you’ll find some relief.
A reliable source article from verywellhealth.com might give you a little more information on what to anticipate with your appointment.
https://www.verywellhealth.com/t-cell-lymphoma-5222238
Will you let me know what you find out please?
Thank you for reaching out and providing me with the information. I will definitely look into finding the others. I am going a little crazy waiting for my appointment and not knowing what to expect so I appreciate everything you provided me..
God Bless You. Stephanie
Hi Stephanie, I thought I would check in. I think you have not yet met with your oncologist. But I was wondering if you were able to reach a symptom management nurse or another team member to get some help with pain management. How are you doing?
Tomorrow will complete 15 sessions, 25 weeks on the immunetherapy drug Mogamulizumab.
In spite of being developed for the treatment of Sezary Syndrome the results have not been favourable.
I still have all of the symptoms of SS, have become diabetic and been hospitalized 3 times for the IV treatment of a bacterial infection in my blood stream. This bacteria also created an elevated heart rhythm which had to be treated with shock therapy.
If there is anyone out there who has had similar experience I would very much appreciate.
If you have had favourablr results I would like to hear about those as well.