Been awhile

Chris17
Chris17 Member Posts: 175
in Lymphoma (Hodgkin and Non-Hodgkin) #1

It has been a while since i posted last, finally got this auto immune disease under control after being misdiagnosed for 7 months finally i know what im dealing with, oral lichen planus, which i will deal with the rest of my life. Last scan in Sept showed nothing as far as cancer, so i am 2 and half yrs in remission. Life has been throwing rocks at me but i keep moving forward, i hate this time of year holidays etc, my family is on west coast so it will be another quiet holiday here. Phone calls and text messages just arent the same. I am taking things one day a time, i cant allow myself to get stressed because it will make the oral lichen flare up and i dont want that to happen, i truly suffered with it. Hope you all had a good thanksgiving and i will post more often.

          

                                                                      Chris

Comments

  • po18guy
    po18guy Member Posts: 1,465 Member
    #2
    Transplant or no?

    Great news that you are still in full response. I ask about transplant, as oral cavity problems are so common post-transplant. What does doctor propose for the lichen planus? 

  • Chris17
    Chris17 Member Posts: 175
    edited November 2017 #3
    po18guy said:

    Transplant or no?

    Great news that you are still in full response. I ask about transplant, as oral cavity problems are so common post-transplant. What does doctor propose for the lichen planus? 

    I am on steriods

    I am on steriods "ugh" i keep steroid ointment with me at all times in case of flare ups, Doc said i was the 2nd worse case he had seen, i would hate to see what the worst case was as i suffered horribly. I will have this the rest of my life, stress can cause a flare up within a matter of hours as it has happened before. The Doc also told me to  use flonase and spray onn the inside of the cheeks when i have a flare up, was a bit gross at first but when the relief came i got used to it. I am hoping that 2018 will a better year as 2017 sucked really bad, thank you for responding, hope you are well. PS no transplant for me.

  • yesyes2
    yesyes2 Member Posts: 591
    #4
    Glad that you are getting

    Glad that you are getting some relief, even though it is through steroids.  I can not imagine what you went through as I know how sore and itchy mine can be.  Really hard for me to keep my hands away.  And like you my steroid cream is my trusty sidekick.  I have been lucky that it still is just on my lower legs.  Oral is questionable but it their pretty mild for me.  I am hoping that 2018 is a really good year for you.  Always nice to hear from you.

  • po18guy
    po18guy Member Posts: 1,465 Member
    #5
    Chris17 said:

    I am on steriods

    I am on steriods "ugh" i keep steroid ointment with me at all times in case of flare ups, Doc said i was the 2nd worse case he had seen, i would hate to see what the worst case was as i suffered horribly. I will have this the rest of my life, stress can cause a flare up within a matter of hours as it has happened before. The Doc also told me to  use flonase and spray onn the inside of the cheeks when i have a flare up, was a bit gross at first but when the relief came i got used to it. I am hoping that 2018 will a better year as 2017 sucked really bad, thank you for responding, hope you are well. PS no transplant for me.

    Steroids...

    Am trying to get off them. Since transplant (haploidentical allogeneic) I have been on high dose prednisone for the past two years, due to graft-versus-host-disease. Started off at 95mg daily. That was, um, interesting. Down to 35 mg alternating with 5 mg every other day. I have an idea what bi-polar disease is like.

    So, immune suppression/steroids is your primary treatment? Have you looked into a clinical trial? Not much to lose, as I see it.

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