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Type: Posts; User: Joy

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  1. Replies
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    Thanks Mark for all your info on Mayo-very...

    Thanks Mark for all your info on Mayo-very helpful. So glad you got there & are now receiving such great & thorough care!
  2. Thread: Reccommendations?

    by Joy
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    Our daughters rheumy is also on the VF...

    Our daughters rheumy is also on the VF website-Nancy Allen @ Duke. Our daughter wanted a specialist somewhere close that she could drive due to time constraints & cost. We liked Dr Allen very much...
  3. I want to thank all of you for your posts-they...

    I want to thank all of you for your posts-they help so much & I feel your support & it means alot. We are in a strange place right now as the doctors do not think that the weg diag was correct. They...
  4. I do not know where to begin...which is probably...

    I do not know where to begin...which is probably why it has taken me so long. We took our daughter to Duke on Dec 21 & met w/ Dr. Nancy Allen. We all liked her very much & felt good to be w/ a wg...
  5. Thanks so much for your encouragement, I was...

    Thanks so much for your encouragement, I was curious -is your daughter doing the 4 or 2 treatments in a round of the rtx? I read w/ interest when Sangye reported on those 2 protocols. I also...
  6. Thanks Elephant! Before moving to NC my daughter...

    Thanks Elephant! Before moving to NC my daughter lived in Greenville. I remember reading somewhere that is where you are. I am in Anderson, so we are neighbors. We are still waiting for acceptance...
  7. Sangye, we are going to Duke to (Rheumy) Dr....

    Sangye, we are going to Duke to (Rheumy) Dr. Nancy Allen this week. My daughter emailed her 2 wks. ago after meeting w/ the oncologist & asked her if she could get the ball rolling to see if she...
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    Jeff, there will be more good days. I know...

    Jeff, there will be more good days. I know exactly what you mean when you said you could see her color come back. It's amazing...
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    Jeff-hello! Your post duplicates our recent...

    Jeff-hello! Your post duplicates our recent experience w/ our daughter who is 26. There are so many similiarities. My heart breaks for y'all as I remember that 1st week after diagnosis. I hope...
  10. Daughter recently diagnosed-see specialist in 3 days

    Hello all, I have been following this site for abt 3 wks. now after my daughters diagnosis in Nov. This is not my 1st post . I told a bit of her story in early Dec. on Mel's intro post. I decided to...
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    Thankyou!

    Mel, It was so good to hear from you! Your situation sounds very similar to my daughter. Your protocol is what the pulm. told her - IV CTx w/ pred. then MTX w/ pred tapering ,( the lupron was an...
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    I so appreciate your input-she will be seeing Dr....

    I so appreciate your input-she will be seeing Dr. Nancy Allen @ Duke. I originally contacted JH, Mayo, & CC but could not get her in until after the new yr. I could not get her in @ Duke either b/c...
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    treatment decisions w/ fertility concerns

    I was very interested to read your intro-my daughter was diag early Nov. w/ Wegeners @26. We are still very much in the gathering info phase , she is on 60mg. of pred. she has been healing from her...
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