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Russ
MemberJen, It’s a bit different in the US – when I had Vidaza, I went in for 7 straight working days and got an injection on both sides of my stomach.
There was no need for a bed, I just drove home.
My prayers go with you and your Dad – you are not alone.MemberCarl, Hang in there. My prayers will continue for you. I needed the Neulasta too but will see what Doc says on Monday.
MemberLucy, My condolences and prayers.
MemberAll, It has been 10 days since finishing the 1st round of Dacogen my counts were all down. PTL
I don’t feel bad. Doc will check again next Monday. My prayers for all you patients and caregivers. I saw about a clinical trial using valproic acid with decitabine – looked like promising results with MDS and AML. (MD Anderson Cancer center ran the trial,)MemberSusan, Kathy: My prayers for you and your Dads.
May you be comforted and sustained during these trials.MemberLucy, Regarding premeds, they gave me an anti-nausea and a steroid (decatron, I think) before the decitibine. After the 1st day the amount of steroid was cut back and am not sure if the anti-nausea was used every day. Hope your mom starts feeling better soon.
MemberTerri, Bob has my prayers and you also. I know that it is often harder on the caregiver with what my wife goes through. May your faith sustain and comfort you during these trials.
MemberThanks, Carl. Best wishes for success with Dacogen and God Bless
MemberJanice,
Thanks for the prayers – they really help. Wish I understood all variations of this disease.
My chromo is supposedly normal but still have those high blasts. It seems to me that the type of chromosome has little to do with whether the various treatments work. I’ve had 4 bmbs and each time a different pathologist has done the report and uses some different terms. Does anyone know where I can find what the lymphoid & myloid marker percentages mean? (I have all the cytometric reports.)
Many prayers for all,MemberJanice and Kristy, May the decitabine continue to work for your loved ones. It is good to hear some encouraging news and I will continue to pray for all. How about that, Carl?
MemberFran, I just said a prayer for you and Jim. Each night in my prayers I bring up to the Good Lord forum members who are fighting this disease.
Read all you can and consult with specialists.
You need to be pro-active in Jim’s care and keep the faith. If you haven’t seen these sites check them out:
http://www.aamds.org/aplastic/
http://www.umassmed.edu/entities/hema_oncology/MDSCenter/index.cfm
http://patient.cancerconsultants.com/myelodysplastic_cancer_news.aspx
http://www.mdanderson.org/
God bless you – one day at a time.MemberJan,
My condolences and prayers for you in the loss of your mother. May your memories of better times sustain you through this period.
God bless,MemberKristy
Exciting news about that remission word. I’ll pray to that end. Regarding the platelet thing that I tried Coenzyme CQ-10 and it helped for a few weeks. Later did fresh pineapple and it also worked but only for a few CBCs. Platelets are tricky – it seems mine will be low then jump way up in the 200’s but only for awhile.
Best regards and wishes for your mom.MemberLucy,
Exjade dosage that the costs were figured was at the max – my wgt is 170#. If I actually went on it it might have been started lower. That mung bean sounds interesting.MemberHi Lucy, Can’t tell you much about exjade except it is terribly expensive. My hemo suggested it for me and I found my co-pay with the new Medicare part D would be $2458 for the 1st month. (Actual cost was over 5000 so you hit the donut hole immediately.) I decided at my age I would chance any organ damage from iron overload. Prayers for your mom.
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