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Hi Eileen,
Thanks for asking about John. He's doing really well. We actually feel like we have our life back. He still has to deal with some issues from all of this but they're minor compared to what he went through.
Keep an eye on your PN. Our experience with it is that most docs don't really deal with it well because they don't have anything in their bag of tricks to fix it. From their point of view, it's part of the collateral damage to treatment, and it may go away once you stop treatment. I don't think they can really appreciate how badly it can effect your quality of life.
We found nutritional and complementary therapies to be very effective for John in reducing his pain level and improving the PN. When it first hit, it was 24/7 pain at 7- 9 level on the pain scale. He's maybe at 1 now. We actually saw dramatic drops in pain which directly correlated with what we did. So if you would like to know what we ended up doing, I would be happy to share it with you.
Take care,
Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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