... rash that appeared when I was 24 and now it's spread to 5 different patches. It's been 6 years and doctors have pushed it off and said it was just a rash and no one has ever really taken an interested in it. It hasn't appeared like the normal lymphoma, It's just red patches of skin, they don't itch hurt or burn. I have found 2 amazing doctors who have finally found the answers. Now they feel as if I'm ready to take the next step in treatment and start. They have given me 3 different options. 1 is a steroid cream 2 a narrow band UVB light and 3 is the radiation therpy. I'm not gonna lie and say that this scares me it's cancer. I'm very lucky that it's only been isolated to my skin. I'm just looking for someone to talk with to see what they have tried and how they reacted to different forms of treatment. Thank you in advance for any help or advice you may have
So sorry to hear about your diagnosis. Unfortunately you're story is a common one when it comes to cutaneous lymphoma. I'm 43, was diagnosed at 40. My diagnosis came about 10 years after my rash first appeared. I'm a doctor myself and so is my wife. She told me to have someone look at it because she was worried about it being lymphoma. I had multiple biopsies then finally I got the diagnosis. It's a really really hard diagnosis to make. Doesn't make it any easier to deal with though does it? Anyway, I've undergone #1 and #3 of your choices. Should be relatively easy to tolerate. Lots of ways to attack this stuff. I will also recommend asking your physicians about topical nitrogen mustard. I've used it many times over the years and it has worked for me with very few side effects. While it stinks, hang in there! One last thing, there's cutaneouslymphoma.org. They are a great resource. They have a "living with CTCL" online booklet that goes over the disease and helps let you know what to expect. You're gonna do great!
Hi, I just finished with Non-Hodgkin's orbital lymphoma. Had 4 treatments of Rituxan and 20 treatments of radiation. Also went through tremendous anxiety. I learned, and wish this on to you, that you do not have to let anything horrifying you. Do what you have to do for you. Get it done and live each day, one at a time.
The greatest thing I did was ask for God's help. After that, my mask no longer bothered me when I was getting radiation. My second PET and 2nd MRI turned out negative for any sigh of regrowth. I do have to see the doctor every 6 mos. For 5 years, and then 1 time a year. I hope that I have helped you. Remember, you have the power to put your own mind at ease. Don't let things bother you.
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