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so many questions 9 years 6 months ago #32912

  • Jpwerner
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My daughter is 10 and was diagnosed October of 2012. Her first count was ayt 8000. The first round of treatment was Prednisone on and off after counts would go low. In January her count was a 0 so she was put in the hospital for her first IVIG treatment. We did 2 of those over a few months and then moved on to the WinRho after seeing a speicalist at the Rodger Maris Cancer Center in Fargo ND. She has had 5 treatments of the last now. It works but doesnt last. Her veins are getting so bad that we dont know how long we can do this. I dont know where or what to do next. Her doctor just prescribed Mercaptpurine but I wont do it. I wont let my 10 year old daughter go through the loss of hair when she was told she doesnt have cancer. My husband and I are so frustrated and scared. Poor girl couldnt do volleyball, recess or gym this year..It jusat hasnt been fun

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so many questions 9 years 6 months ago #32931

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Have they ever used a butterfly needle to draw blood? That is easier on veins. If not, you can ask for one.

Have you thought about Rituxan? It has helped put many into remission whereas IVIG and Win-Rho usually don't do that and are temporary fixes.

All treatment options are hard. I hope you find something that works soon.
The following user(s) said Thank You: Jpwerner

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so many questions 9 years 6 months ago #32955

  • Jpwerner
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Thank you Sandi for your reply...I have always wanted to touch base with you.... The med you suggest has never come up in any conversation with our daughters doctor. Today my husband reached out to the specialist whom we thought was working with our doctor...and found out that he did not recommend the med I spoke of. Now we are confused beyond belief as my husband was told he has not been consulting with our doctor here in our hometown ...our doctor will call to discuss things when she needs but we have been under the impression that she was getting direction from him. He is a well known hemotologist at the Roger Maris Cancer Center. We have a meeting with her this Thursday morning but she has no idea it's just with my husband and I . I have since made an appointment at the Mayo clinic in Rochester MN for June 6th....

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so many questions 9 years 6 months ago #32964

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2369
It sounds like you are on a good track now. See what this doctor suggests and mention Rituxan to him if he doesn't bring it up.

I know it gets confusing when doctors give conflicting advice. That is when you take the bull by the horns and make your own decision. That is very hard to do when it affects your child, but you'll have to do it. 6MP is usually a last resort treatment, so you could always go back to that down the line if all else fails. You do have other options to try first.

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so many questions 9 years 6 months ago #32972

  • crystal lee
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Hello

My son has had the option of 6mp or rituxan also..6mp was suggested before rituxan was. I could not get any help here when it came to 6mp..it just doesn't seem to be used. When it was suggested to me it wasn't by his hemo it by a 2nd opinion. So when I got home I called his hemo and told her what was suggested, and I asked why she didn't suggest it, she said the side effects are well known, in over 30 years she has only given it to one ITP patient. The only reason we still considered trying it over rituxan was if side effects do occur you can stop 6mp and they usually clear up, rituxan continues to work for like a year or something and he may have trouble fighting anything in that time..

Good Luck..And keep the faith, you will find something you are comfortable with that works!!

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