Sunday, July 7, 2013

Good news

As a teacher, May is an extremely hectic month. In addition there were a lot of other events, issues, and stressors that happened at the same time. This all culminating in me forgetting to go to treatment for 3 weeks. Despite missing treatments for awhile, my skin was still completely clear. In the 4th week of no treatment, I had an appointment with Dr. Pandya. He said that since I'd been clear while off treatment I can go ahead and discontinue the nbUVB treatments all together. :-D I can't express how happy this made me. He also said I didn't have to come back and see him unless some spots showed up again. So for now I am 100% clear with no evidence of disease or symptoms.  

While the word remission does not get used with CTCL unless a stem cell transplant has been done, it still feels really good to not have any doctor's or treatment appointments in the foreseeable future. Dr. Pandya says about 20% of patients who get clear can stay clear without ever coming back to see him. 

I will likely discontinue posting unless something happens again. So if you're reading this, no news is good news from here on out. 

It has been an emotional journey for me. One I am strangely grateful for. Cancer is the ultimate prioritizor and I am a stronger, less stressed, more zen person than I was before. 

Please feel free to comment or message me with questions. I will still receive them.

I wish everyone the best of luck on their journey. 
Posted by at

3 comments:

  1. AnonymousNovember 22, 2013 at 5:49 AM

    congrats on the all clear. I am 28, diagnosed at 27 after what I suspect were patched for 4-6 years. Only using steroid creams at present to clear skin up but on the whole have remained fairly clear. im from the UK, never had scans or bloodwork done either but my dermo has said i am patch stage (never been staged 1a/1b etc) All the best god bless

    ReplyDelete
  2. AnonymousDecember 30, 2013 at 5:07 PM

    Judy1418--I was just diagnosed on the Friday b/f Christmas. Was previously thought to have Pityriasis Rubra Pilaris. Biopsy confirmed CTCL. Will be going to University of VA dr to discuss treatment. I have suffered with skin condition for about 3 years and don't know what stage. Thank you for this blog. It's comforting to know I don't travel alone.

    ReplyDelete
  3. AnonymousJanuary 9, 2014 at 10:01 AM

    Hi, I can't seem to find a contact form or anything and I was hoping you could help. I only just heard about this condition today and it rung alarm bells straight away. I had severely bad 'eczema' (as the doctors said) which lasted about 5 years and cleared up about a year ago. It looks exactly like the images I've seen of stage 1 of this. I used a hell of a lot of steroid cream and it provided some relief but not much. But now I have nothing apart from my skin being a bit dry and sensitive. Is that even possible with Mycosis Fungoides? If it is, is it even worth a trip to the doctors? I also found that when it was bad it cleared up in the sun like you said yours did. E-mail me on a-beebuzz@hotmail.com if you can help!

    ReplyDelete

Subscribe to: Post Comments (Atom)