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DiscussionWhat is the prognosis of living with CLL beyond 20 years?
Blood Cancers & Disorders | Last Active: Jun 5 3:41pm | Replies (7)Comment receiving replies
Replies to "Welcome to Connect @traillens47. You’re looking for information of the prognosis of living with CLL beyond..."
Thank you Lori.
I have been receiving IVIG, or Privigen infusions every 4-6 weeks since 2010.
This is my second visit with Pyoderma Gangrenosum. It happened in 2016 and appeared on my leg. My dermatologist tried to diagnose it and when I showed it to the PA in my oncologist office she said it was "just a bug bite.". Ha ha. The dermatologist finally did a biopsy which confirmed PG. I underwent chemo and multiple experimental treatments and skin grafts to finally heal the PG but I was left with a large, deep scar on my thigh. Since then I have been seeing several new PA's and getting IVIG routinely. Six weeks ago I had blood work and the PA happily said everything looks fine but if you want the IVIG infusion we can do it. I began to compare test results and they didn't look right to me so I talked to my internist and he is the one that contacted the oncologist to do more thorough blood work which showed the SLL. Last week I noticed a slight itch on my face with a little sore which became quite large and inflamed. God bless my dermatologist who saw me the same day and confirmed it was PG on my face and immediately injected it with steroids. Had more blood work today and the numbers look even worse than 2 weeks ago. I'll see the oncologist Friday.
I lead an extremely active life and have managed to ignore the CLL except for keeping my appointments. This rapid change has really knocked the wind out of my sails and as I am approaching the 20 year mark Im quite concerned about what to expect . I don't know if you've seen pics of PG but it is very ugly and to have that on my face along with CLL/SLL is a frightening prospect. It really has become overwhelming and that kind of stress makes things much worse. I do wish there was more information about the prognosis at 20 years.
Thank you for your thoughts Lori. I can tell you I won't deal with a PA ever again!