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Russ
MemberDottie, hope your husband keeps improving.
Kristy, your mom appears to be doing better on Dacogen which should be an encouragement to Carl and I who are just starting. Fortunately, I feel better than my bmb indicates but there is that worry about progression to AML. My prayers to all of you. God BlessAugust 30, 2006 at 1:59 pm in reply to: Looking for some tough answers to some tough questions #14688MemberLucym,
Wish I could help with answers but we need to depend on doctors and trust in the Lord. It is encouraging that your mom’s blasts have decreased. I have only had one week of Dacogen (decitabine) and no diarhea – but slightly constipated. My guess is that she would not do better on Vidaza as I went through that and my blasts went up. Consider a consultation at a teaching hospital that has expertise in MDS. (Like UMASS in Worcester, MA) My prayers are with you both.MemberCarl,
Hope your Dacogen experience goes well – in the short term, I was pleased that it seemed preferable to the Vidaza I was on before. My CBCs on 8/21 before Dacogen were WBC 10.37; HGB 8.7; PLT 237 (The WBC and PLTs were unusually high for me) By 8/23 WBC 4.88; HGB 8.2; PLT 209. I did not take the scheduled Neulasta shot on Friday deciding to wait until today’s test. Had 2 units of PRBC on 8/24. Today my WBC 0.98; HGB 11.6; PLT 89. I’m pleased with the numbers as the low WBC was expected – will see Doc on Tues. next week and get a Neulasta if the WBC doesn’t improve. Keep us posted on your treatment.
Prayers and best wishes,MemberDennis,
I’m too old for the transplanting bit, but you have my thoughts and prayers that all will go well with yours. Keep those spirits up and may
God Bless.MemberHi, Just went through 1st 5 days of Dacogen. Except for low HGB my counts were up to start – will get a CBC tomorrow and see what happened to the counts. I’ve been told it is normal for Dacogen to depress the WBC – they wanted to give me a Neulasta my last day but decided to wait for the CBC. Will keep you posted.
MemberSorry that your mother is experiencing so much pain. When I was on Vidaza, it was necessary to
drink lots of fluids, take 2 fibracon or metamucil tablets, and a stool softener. Even then it was a strain. Hope you find some help.MemberKatie,
Regarding the Vidaza, I thought it was working but my last bone marrow showed blasts increased from 10 to 18% so Doc put me on Dacogen.
Regarding your Dad’s lethargy – could be the low RBC. A bit of Prednasone to taper off of might help.
Best wishesMemberOops! the correct web site for the UMass MDS
center is: http://www.umassmed.edu/entities/hema_oncology/MDSCenter/index.cfmMemberYou are not far from UMass medical center so
would suggest a consultation with Dr. Raza.
Chk the website at: http://www.aamds.org/aplastic/
My prayers for your Mom.MemberKatie,
Suggest you try the web site:
http://www.aamds.org/aplastic/
Sign up to have the literature sent to you
that explains all the ins and outs of MDS,
various treatments, and glossary of terms.
Hope this helps. I know that prayer helps
so each night I pray for those who are fighting this disease – including me.MemberYes, good luck Chuck. I was very much impressed with Dr. Raza. She has devoted her study and practice to MDS. My own Hemo worked with her at
Rush in Chicago and calls her to consult for me.
Since all MDS is not the same, no one treatment
will work for all. It is best to consult with her and have her recommend treatment based on your own pathology.MemberHi Judy,
3 daily injections sounds like a lot but the dose of each is critical. Be happy your counts have improved. It took me at least a week to get over Vidaza and you may need a little more time after the injections stop.MemberThanks Lynette,
Ill pray that the decitabine works for her.MemberThanks Neil,
I thought it would be covered.
Dennis:
I’ll find out Monday if they need to put in a
port. I understand I’ll get the IV for 5 days
straight.
RussMemberHi Susan,
My prayer is that the Vidaza will work for your Dad. It’s not all that uncomfortable.
I’ve gone through about 9 cycles and once went
5 mos. without a tx. However my CBC numbers have been dropping (It’s been 3 mos. since my last tx.)
My recent BM biopsy showed an increase from 10 to 18% blasts. Dr. is now going to start me on Dacogen, I assuming that medicare will pay for it
but would like to find if anyone knows for sure.
Russ -
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