I received a letter that Dr. Pandya at UT Southwestern will no longer be seeing patients with CTCL. I've been grateful to him for his care over the last few years and am nervous about seeing someone new. There will be another doctor (Dr. Heather Wickless) stepping up to take his place with the clinic, but as far as I can tell from researching her online, she doesn't have much CTCL experience. But everyone has to start somewhere, so I'll probably set up an appointment with her in June. I'll report thoughts once I meet with her.
Like the title says, I'm at 10 months without treatment. It's been going fairly well. I've had a few spots pop up here and there. There's one on my leg about the size of a blueberry that has been there for awhile now. It's not gotten any bigger so I'm not all that concerned, but I'll still be sure to show the new doctor. The end of the school year is always a stressful time, and stress definitely exacerbates my skin. We're also moving this summer and the sheer amount of stuff that we've accumulated from the various roommates is overwhelming. My wife's mom moved in with a 20' moving truck and moved out with a sedan. A large part of me wants to just pay someone to come take absolutely everything, but the rational part tells me that I need to go through it all and sell off what we can.
Anyways, not much else going on. As I've said before, no news is good news, so I probably won't be posting for awhile but feel free to contact me with questions or just to chat.
Hi,
ReplyDeleteI am a 37 years old man with MF diagnosis.I have to tell you that my life changed completly in the moment when I was told this diagnosis.
After a few days of crying I started to find out the brighter side of the facts.Reading articles, opinion of persons who has similar disease an so on.I want to ask you about your condition and which was the first treatment you got at the begining!?
Sory for my poor english.I wish you all the best!!
The first treatment I did was Narrowband UVB. It is a box that you stand in with a lot of lightbulbs in it. Things are going well for me right now. I have not needed any treatment for the past year and other than some minor things, I haven't really had any issues. In my experience, things got a ton better once I was diagnosed and started treatment, so I know it can seem like this is a really low point, but from here on out, things can get better.
DeleteLet me know if you have any other questions.
I am glad to hear that!I am still waiting for the second opinion.Do you have a normal life?Did you hear about someone who had a complete remission?
ReplyDeleteBest regards.
I do have a completely normal life now. Before receiving treatment I was too embarrassed to go to public pools or the beach and would wear long shorts and shirts to swim in. Now that my skin is clear, I wear regular swim suits which is awesome. The term "remission" isn't really used for CTCL, but my doctor said about 20% of his patients never have to come back to see him once they're clear, so there's definitely people who never have to deal with it again.
DeleteI'm still clear enough not to need treatment, and that feels like remission to me.
Hi,
DeleteI t is very good for me to hear that you feel good and do not need treatment.I think the ideea of having MF needed long time to be accepted by you.I ant to send you a pictures about my lower legs spot to see how it looks.
My only wish is to have a normal life and if possible enough long to see my children growing up.
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