THALIDOMIDE NEXT STEP

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• January 24, 2006 at 6:04 am #11459
  diner

  Member

  Hi Everyone,
  The VIDAZA didn’t work for me and my doctor said he just wanted to let my body rest for a week without doing anything. I went in for blood tests today (week is up) and platelets were 3,000 and HGB was 8.3. I will have 2 units of red cells tomorrow and 1 of platelets.
  My doctor went to a meeting with several specialists in attendance and he spoke to Dr. Curtin at OHSU and others about my case. They didn’t think REVLIMID would be for me, but after researching my chromosome problems, they agreed that a low dose of THALIDOMIDE might help me. My doctor also called OHSU Clinical Cytogenetics Lab and spoke to someone there and they agreed that a low dose would be called for with my chromosome findings.
  Here we go again. We have to go through paperwork, pre-approval etc.
  I’m still taking my Essiac tea capsules and my L-lysine capsules for mouth sores.
  Dee

  January 24, 2006 at 8:02 pm #11460
  Kathryn

  Member

  Dee, my father was on a low dose & from what I can recall, didn’t experience any significant side effects.

  I’m sorry things are challenging for you…. Keep the faith though & it will work out alright.

  I’ll be praying for you.

  Hugs,

  Kathryn

  January 25, 2006 at 1:16 am #11461
  lynette

  Member

  Dee,
  Did you ever try “Magic Mouthwash” for your mouth sores. A prescription is needed, but it works wonders for patients with painful mouth sores. Typically, it is a mixture of viscous Lidocaine(for numbing), Benadryl(for inflammation), and Maalox(for excessive acid production). It is used three times a day as a swish(never swallowed). Also, if you see white patches in or around the sores, your doctor might want to prescribe Nystatin. It is an anti-fungal that works very well.
  Good luck w/ the new treatment. You’re in my prayers.
  Lynette

  January 25, 2006 at 1:31 am #11462
  diner

  Member

  Lynette, unfortunately I’m allergic to Benadryl.
  Had reaction to my platelets today. Itched all over. It was awul. They gave me a pill to stop it but i don’t remember the name. Dee

  January 25, 2006 at 7:20 am #11463
  patti

  Member

  Hi Dee,

  I’m sorry the vidaza didn’t work and I’m glad they were able to come up with another possibility. I know there are a number of people that thalidomide has helped, I hope it will work for you also. Sometimes it just takes a few days and a few more heads together to come up with another try. Keep looking up.

  Patti

  January 25, 2006 at 5:33 pm #11464
  CarolineG

  Member

  Hi Dee,

  I’m sorry that you have to go through all of this. I hope that Thalidomide will be your answer.

  Best Wishes,
  Caroline

  January 26, 2006 at 6:04 pm #11465
  JaniceR

  Member

  What were your chromosone findings. My father was just recently diagnosed with MDS RAEB w/Monosomy 7. They want to put him on Vidaza, but we’re going for a second opinion with a specialist in NYC.

  January 26, 2006 at 6:06 pm #11466
  JaniceR

  Member

  What were your chromosone findings? My father was recently diagnosed with MDS – RAEB w/Monosomy 7. They want to start him on Vidaza. We are going to get a second opinion with a specialist in NYC

  January 26, 2006 at 6:06 pm #11467
  JaniceR

  Member

  What were your chromosone findings? My father was recently diagnosed with MDS – RAEB w/Monosomy 7. They want to start him on Vidaza. We are going to get a second opinion with a specialist in NYC

  January 26, 2006 at 6:27 pm #11468
  JaniceR

  Member

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