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

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  #1  
Old Sat Mar 7, 2009, 03:34 PM
helen c. helen c. is offline
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Constipation and back pain

hi ny husband just finished 2nd round of vidaza followed by 5 ddays of neupogen. does anyone else have a terrible constipation problem and also about july of last year pain in the back and groin area he is in pain mangement and had x-rays and cat scan (cant have mri due to pacemaker) physical therapy cortisone shots in back and still pain. dr. says its not the neupogen but just finished 5 days of neupogen and can barely walk this morning. so does he just have to accept the fact that the way it is we dont know what else to try by the way he was treated with vidaza all of 2008
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  #2  
Old Sun Mar 8, 2009, 01:08 PM
Birgitta-A Birgitta-A is offline
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Neupogen

Hi Helen,
As far as I understand it is common with pain from for example joints when you take Neupogen. You never know what they mean when they write moderate:

"Mild-to-moderate bone pain was reported in approximately 33% of patients in clinical trials. This symptom was readily controlled with non-narcotic analgesics. Generalized musculoskeletal pain was also noted in higher frequency in patients treated with NEUPOGEN®."

http://www.neupogen.com/pi.html#adverse
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen 2 injections/week since sepsis Sept 2007, asymptomatic
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  #3  
Old Sun Mar 8, 2009, 02:50 PM
helen c. helen c. is offline
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thank you for answering me Briggitta. the doctor says its not from the neupogen but funny to me that he is on vidaza every four weeks followed by a week of neupogen and his pain is much worse after the 5 days of neupogen i had him stop the tylenol after i read about it lowering platlettshis platletts were at 56,000 but 74,000 last monday we will see what they are tomorrow. his constipation is better since its been a week since vidaza, he will have blood work tomorrow and a procrit shot and if its good he will get 2 weeks b/4 vidaza again
she said he will get vidaza every 4 weeks until it stops working
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  #4  
Old Mon Mar 9, 2009, 06:13 AM
Birgitta-A Birgitta-A is offline
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Neupogen

Hi Helen,
Too bad that your husband have adverse reactions when he gets Vidaza and Neupogen - hope the drugs have positive effects too and that his counts will be OK!
Kind regards
Birgitta-A
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  #5  
Old Mon Mar 9, 2009, 07:53 PM
helen c. helen c. is offline
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went for blood work today and platletts were 17 so went to hospital for infusion this is first time for that
have blood work every monday so hope they are much better next week
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  #6  
Old Tue Mar 10, 2009, 01:22 PM
Birgitta-A Birgitta-A is offline
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Vidaza and low counts

Hi Helen,
Yes, your husbands counts should be better when the bone marrow has rested one more week from Vidaza and he got a platelet transfusion. You know many patients get a good response to Vidaza but perhaps after the 4:th cycle.
Kind regards
Birgitta-A
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  #7  
Old Sat Apr 18, 2009, 01:56 AM
jamesgeorge55 jamesgeorge55 is offline
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Hey for the constipation u can try some herbal medicines which are really really effective and for back pain u can be continued with the physiotherapy treatment.
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  #8  
Old Sat Apr 18, 2009, 08:26 AM
Margie Margie is offline
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constipation and back pain

Jamesgeorge55
Could you be a little more specific about the herbal medicines for constipation? Thanks.
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  #9  
Old Sun Apr 19, 2009, 04:44 AM
helen c. helen c. is offline
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update on the back pain
the mds dr. just kept increasing the pain meds so we made an appointment with a orthopedatic dr. and he dx avascular necrosis in both hips and worse in the right and recommended a totl hip replacement in the right (total) of course he cant have that now he hasnt had any vidaza since the end of feb. 09 b//c his counts are too low she switched him from peocrit to aransep and said he wasnt responding transfusions every 2 weeks now neupogen is not helping with the white count. last mon. his counts were 8.4 so he got blood his white was 2 and platletts were 37 she has made him an appointment with H.Lee Moffit cancer center in tampa fl. for the 27th of this month he is using a wheelchair now b/c of the hip his words are hes screwed. he is depressed b/ of the pain and being completely homebound except for doctors we will see her agin Monday for bloodwork we hope whwn he goes to tampa they will have some fresh ideas thanks for letting me vent
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  #10  
Old Sun Apr 19, 2009, 05:57 AM
Birgitta-A Birgitta-A is offline
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Pain

Hi Helen,
Very good that your husband got the correct dx - you know cortisone shots can make avascular necrosis worse since cortisone leads to osteoporosis.

Hopefully the doctors at the well known Moffit Cancer Center will find a drug that will increase your husband's counts!
Kind regards
Birgitta-A
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  #11  
Old Sun Apr 19, 2009, 09:31 AM
Dick S Dick S is offline
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Helen C, when you get to Moffitt, insist on seeing Dr. Alan List. He is the discoverer of Revlemid and what I hear is one of the best in the industry.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #12  
Old Sun Apr 19, 2009, 03:27 PM
helen c. helen c. is offline
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thank you Bregettia yes she has told us he cannot have cortisone. we go to see her tomorrow maybe she will have some fresh ideas
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  #13  
Old Sat May 28, 2011, 07:03 PM
cheri cheri is offline
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Unhappy Constipation!!!!!!!!

Oh Lord..... YES!!!!! I have been there very recently and whew...it wasn't something I want to ever to through again!

Last month, between the Vidaza, Zofran, (anti nausea) and Neupogen, I really thought I would end up in the hospital....at one point, one morning for 3 hours, I was in a VERY bad way...
I will spare you the horrible details, and tell you this----Pre treatment, DAILY this month I will use:
1-Stool Softener (like Colace)--2xdaily (lunch, dinner)
2-Mild laxative with stool softener, (like Miralax) with breakfast
3-Prunes--3-6
4-Reasonable Fiber/lots of water--moderate exercise
5-PRAYER!

I did all of the above at one time or another , but last month was a different story....Seriously, it can be one horrible experience!
Best of luck!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #14  
Old Thu Jun 9, 2011, 10:21 AM
mausmish mausmish is offline
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Like Cheri, I suffer terrible constipation from the Vidaza Zofran combination and take similar measures to hers. The normal fiber, exercise, herbal remedies don't seem to touch it. I ended up in the ER one night. My hematologist said to take as many stool softeners as needed during treatment week to keep things moving.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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