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General Health Issues Diet and appetite, sleep and fatigue, pain management, exercise, etc.

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  #1  
Old Wed Aug 13, 2008, 10:17 AM
Eileen Eileen is offline
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Neuropathy & Procrit

HI EVERY ONE.
HOPE YOUR ALL DOING WELL.
HAS ANY ONE HAD NUMB FEET & HANDS ? WAS SO BAD COULD HARDLY WALK A DAY LAST WK. MY PRIMARY DR SAID I TS NEUROPATHY FROM PROCRIT,WHEN I HAD BLOOD WORK THIS WK I WAS TOLD BY THE NURSE THEY WERNT GIVING IT ANYMORE.ALSO MY CALCIUM WENT DOWN SO THEY DOUBLED MY CALCIUM TO 2400 MG A DAY .WHATS GOING ON/?

HOPE THE SUN IS SHINING WHERE YOU ARE
EILEEN
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Eileen.72,dxMDS 2007.currently on vidaza,procrit & neuprogen.
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Old Wed Aug 13, 2008, 03:54 PM
Marlene Marlene is offline
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My husband has neuropathy also but the procrit did not effect it all. The PN can be from multiple things ranging anywhere from vitamin deficiencies to drug toxicities. The calcium issue can be contributing to it also. Is the neuropathy constan,t or does come and go depending on when you get your procrit? Or for that matter, any other med.

If your hemaglobin is up (usually around 12 ), they will stop the procrit.
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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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Old Thu Aug 14, 2008, 09:33 AM
Eileen Eileen is offline
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neuropathy & procrit

Hi Marlene,
Thanks for your quick reply.
My NP is usually at night before bed or first thing in the morn..I`s not all the time except for a few severe days.That wk it was during vidaza & the wk after.they gave me procrit 2 wks in a row before vidaza ,they don`t usually.my hmg was just under 12
My calcium went up this wk since they Db. my calcium intake. We`ll see.
I Hope John is doing OK.He`s so lucky to have you,
.Eileen
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Old Fri Aug 15, 2008, 01:12 PM
Marlene Marlene is offline
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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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Old Fri Aug 15, 2008, 02:40 PM
Eileen Eileen is offline
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Join Date: Nov 2007
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Posts: 47
neuropathy & procrit

Hi Marlene,

Thats great about John.It`s so difficult trying to be upbeat at times.Is easy when you feel good.
I would really like to know what worked for John.I have a lot of faith in natural treatments.

Keep smiling,
Eileen
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Eileen.72,dxMDS 2007.currently on vidaza,procrit & neuprogen.
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  #6  
Old Sat Aug 16, 2008, 09:17 AM
Marlene Marlene is offline
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Eileen,

I sent the information via your email. Please let me know if you don't get it.

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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