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MDS Myelodysplastic syndromes

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  #1  
Old Sun May 1, 2016, 08:33 PM
beverly beverly is offline
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Neulasta

My husband David had a Neulasta injection on 4/22. The following day, he began to feel pain in his hip and leg bones....it seems to be increasing each day. Has anyone else had a similar experience? Our oncologist is surprised because he says most don't have this experience. We have an appintment on Monday to see his cardiologist and his vascular surgeon for a check up just in case this is a PAD problem. I did read some people do have severe bone pain...just would like some input. Thank you, Beverly
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Old Mon May 2, 2016, 01:10 AM
DanL DanL is offline
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Beverly,

Bone pain is one of the potential side effects of Neulasta and other WBC stimulating factors. I only had 2 injections back in November 2015 and experienced minor bone pain and achiness for a couple of days.

From what I understand, it is not always present and should resolve within about a week. It may be dose dependent, and then of course, there are always a few people who just don't respond very well to it. I am hoping that this is only a short-term adjustment to the drug for your husband.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Mon May 2, 2016, 12:32 PM
maggiemag maggiemag is offline
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Beverly, I have had Neupogen, but not Neulasta. I always got very minor bone pain, took nothing for it. I do have 2 friends who've had Neulasta; both got relatively severe bone pain, and said that they felt like they'd been run over with a truck. They were both given pain med prescriptions and it helped. The good news is that the Neulasta lasts a whole week I believe, the effects on the white count I mean. Here's hoping your husband responds well to the drug.
Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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Old Sun May 8, 2016, 04:32 PM
beverly beverly is offline
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Neulasta and a question about supplements?

Figured out the problem - NEULASTA was given same day as day 5 of Azacitidine! Should have been a two week break between. David crashed. Hct 20 and Hgb 6! 2 units of paced red cells and he is functioning again.
Also a curosity question? Has anyone with an MDS diagnosis taken Turmeric and Fucodian? Hear they are great supplements but fear they might be contraindicated with Azacitidine. Your input is greatly appreciated. Thanks David and Beverly
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