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#1
Sat Nov 16, 2013, 11:23 AM
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Vidaza headaches
Does everyone experience the headaches after treatment with Vidaza? My husband is down to 5 days of treatment 3 weeks off(total remission) and seems the headaches are worse than they have been. Fortunately he has only slight nausea, but eats very well.
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2 
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#2
Sat Nov 16, 2013, 12:01 PM
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I have had 7 rounds of Vidaza (complete remission after round 2), like your husband. after the 4th round we moved to 3 week/ 5 day just like your husband. After 3 rounds on this schedule my heme moved me to 5 days every 5th week (4 weeks off then 5 days).
Headaches.. I haven't experienced any yet. However, ZOFRAN can cause headaches, and many do experience this especially if taken IV. I take a pill an hour or 2 before and forgo the IV. Saves time in the chair and just as effective(according to my doc). Hope that helps. P.S. How is his blood pressure? If its high that too can cause headaches.
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#3
Sat Nov 16, 2013, 01:07 PM
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Vidaza headaches
He stopped taking Zofran due to constipation. He takes the pill now an hour or two before treatment (iv). His blood pressure is 117/78 so that has always been good. What is your age, and what is your plans for the future as regards to BMT?
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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#4
Sat Nov 16, 2013, 09:34 PM
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Miralax is incredible, and extremely gentle, I took it 5 days straight..
NYU CC recommended it over any other stool softener... It does take two or three days to be effective, and I took it the day before starting my second round of chemo... (ask your doctor though)... God Bless Quote:
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10  ; 5.5% blasts down to 3%, now 1% (post BMT)
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#5
Sat Nov 16, 2013, 10:02 PM
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Whizbang
Thank you for the info about Miralax. My daughter also suggested that. Will give it try for him.. God Bless and prayers to you.
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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#6
Sun Nov 17, 2013, 08:54 AM
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Mirolax was the choice of my husband's doctors and nurses when he was on Vidaza. However, he preferred Senokot.
Whatever choice you choose, make sure he is not taking Advil or any other aspirin based product due to the effect on the platelets. He had only an occasional headache and took Tylenol. Deb
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#7
Sun Nov 17, 2013, 08:15 PM
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Vidaza headaches
Thanks, but constipation is under control with plenty of fresh fruit, green juicing and stool softener. It is the headaches that bother him so much during his treatment week.
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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#8
Sun Nov 17, 2013, 11:48 PM
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Kathy, I never got headaches with Vidaza. Do you think that perhaps he isn't drinking enough because he is a little nauseous? It may be dehydration headaches.
Doesn't hurt to up the fluid intake and see if it helps.
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy. FISH reported normal cytogenetics but gene testing showed Xq 8.21 mutation Xq19.36 mutation Xq21.40. mutation 1p36. Mutation 15q11.2 deletion
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#9
Wed Nov 20, 2013, 11:41 AM
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Kathy,
I have heard that headaches may be a common side effect of zofran...
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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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