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Jack is right about the suppression of blood counts especially neutraphils that are needed to fight infections. C-diff and GI tract issues involved with Dacogen could be due to the normal intestinal flora getting out of whack. I started eating yogurt daily about halfway through my last Dacogen treatment. I believe it has helped so will keep it up. I looked for a brand with L. acidolphilus as it has been shown to be helpful in fighting diarrhea. I have no proof that it’s the answer but doc did not object and I can’t see any harm in it.
My prayers for all those going through this terrible disease.
So many beautiful words have been said in the foregoing posts. There is little I could add except for a heartfelt prayer for you and your Dad.
Just want to add some words of encouragement. I went from MDS to AML and can’t say it has really been much different. Prayers of family and friends have been so helpful and it has been a year since my leukemia dx. Wish I could say this or that treatment would be better but we all react so differently even when having the same diagnosis. Personally I have not have had a good experience with Neulasta or Aranesp but apparently it works for others. My only recommendation would be to get your Dad to a place like MD Anderson in Houston if at all possible. A prayer has been said for your father.
Shari, Not doing too bad so far. Just started 4th round decitibine today. My CBC this am was WBC 15.26; HGB 9.3 (up from 8.8 a week ago); PLT 83 (up from 50 last week). Have not had a tx for 9 weeks.
Jack, have not heard that yogurt was bad for MDS. Wish that search engine on this site was working.
Glad your Dad is feeling well on Dacogen. I also felt that it was easier than Vidaza. Regarding the 5 day regimin, I e-mailed Dr. Issa at MD Anderson and he said they felt that protocol was better than the 8day/3hour method approved by the FDA and shown on Dacogen’s web page. If your Dad nadirs hard and has very low WBC, I would not recommend Neulasta or Neupogen. This is just my own non-medical opinion – I felt it was very stressful on my bone marrow and may have hastened my transformation to leukemia. In lieu of those drugs consider extra care about exposure and/or prophylactic antibiotic and antiviral medicines. Best wishes,
I just finished my 3rd round of Dacogen today. (I had 4 rounds a year ago just before my MDS went into leukemia -AML) After a 9 month clinical trial of Vidaza + PXD-101 my white counts went up so my hem/onc put me on the 5 day Dacogen regimen. My minor problem with it has been constipation followed by some diarhea about the 3rd day. My CBCs have looked better after recovering from the nadir than the 1st round. Feel a little punk for a week after Dacogen but the good news is I have not had a tx for 6 weeks and my HGB is still 9.8. My 11 months of survival after the AML dx, I attribute to the prayers of many. Also I don’t feel too bad most of the time. Everyone can react differently with MDS so hope your dad’s is positive.
My condolences and prayers. May our loving God sustain you during this difficult time.
My sincere condolences. I know what a strain his illness has been on the whole family. May you take comfort knowing your dad is at peace. You are in my prayers. God Bless,
I am so sorry to hear about Mike. The last time I was at the Univ. of Chicago hospital I tried to contact you to no avail. My heart goes out to you with prayers that our God will comfort and sustain you. Words just don’t do enough but hope you can take encouragement in knowing that others care.
Mary, you are correct I just finished my 2nd rd Dacogen and my nadir was yesterday. My numbers except for HGB were very low but not quite as bad as after the 1st round.
E-mail me at email@example.com and I’ll send a Word doc with my CBC and treatment since 2005.
Go right to page 5 for the latest.
My premed consists of Decadron (dexamethasone 2mg) and Anzemet. The Decadron was only on the 1st day and the Anzemet was every day. My doc had a CBC run and checked on me 3 days out of the 5 that I was getting Dacogen.
As far as side effects, after the nadir of the 1st round I had blood blisters in my mouth (PLT of 13). So far OK this round but it could be a week early. I was very full of stomach gas the 4th day of both rds. I seemed to be more short of breath this time even with HGB of 10 and O2 of 98%. Doc said it was OK to try 5mg of prednisone for 3 days.
Let me know if I missed any questions I can answer by e-mail. I would like to recommend the Michiana Hematology clinic and Dr. Taber. Perhaps where you live in MI is not to far from South Bend.
Mike will be in my prayers. Blessings,
Prayers for you and your family. I know my demise may be soon also and pray it will be peaceful for your dad. We have a loving God
who will wipe away each tear and you can look forward to seeing your dad again someday.
Hang in there, pal. This MDS/AML stuff is bad enough without having other cancers. We appreciate your expertise and advise on this forum so get well soon. Many prayers for you.
Donna, I’m on decitibine (dacogen) and it will lower the WBC and platlets as well. It is difficult to predict how your dad will do but I found the decitibine easy to take by IV. The pre-meds of anti nausea and the steroid drugs seem to keep the side effects minimal. Constipation was a problem so he may need a stool softener and should keep his fiber and water intake at a good level. The low point of CBC results comes 2 weeks after the start of treatment and some patients need a little longer then 3 weeks to build them up. Perhaps you can learn how someone else with trisomy 13 has done.
Best wishes annd prayers,
Thanks to all for your postings. Saw my hemo yesterday and he thought the high B-12 could be due to my malignacy – like Zoe indicated. I’m not going to worry about it or my foot numbness as the AML is enough concern for now.
Bless you all,
Jack, the nurse giving the IV said I was getting less Dacogen and they used a standard amount rather than a by weight basis.
LuAnn, note that my platelets went up also. We’ll see what I get next Monday which should be the nadir. I suspect I’ll be due for a PRBC tx next week as it has been over a month since my last one. Also I was encouraged that my peripheral blasts were only 13% as they had been running over 40%. After one rd it’s too early to tell how it’s going. Hoping that I am prolonging life and not prolonging death.
Prayers for your father, LuAnn. Also for your wife, Jack.