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Russ P.
MemberJack,
You started dacogen the same day I started my 8th round. The 2 previous rounds were at 30mg which were easier on me but let my WBC climb to 63. Now at 40 mg and hope it will get the WBC down. Keep us posted how your doing – on my 3rd day I experience a lot of stomach rumbling and gas. Looked like the zarnestra kept your WBC down.
Happy belated birthday and blessings,
RussMemberDear Virginia,
My heart goes out to you and your husband. I have AML after a bout with MDS and know that time is short. However it is my faith that keeps me positive knowing that because of God’s love through His Son, I will dwell in the house of the Lord forever. After reading many posts there is no doubt that each case is different but one constant is that this disease is very difficult for the caregivers. Knowing that I pray for you both that love will be foremost for family and friends. Blessings,
RussMemberIn January 2007, I had a note from Dr. Raza that they had a clinical trial with a monoclonal anti-CD33 antibody. Sounds like the drug you mentioned, Birgit.
RussMemberDear Rose, Prayers for you in your loss. May you be comforted with your memories and God’s grace and mercy.
RussMemberCheryl, May you be comforted by your memories and the fact that your father’s love for you goes on. I pray our heavenly father will be your solace in the days ahead.
RussMemberKristi,
Thanks for asking. I’m hanging in there and my 7th round of dacogen seemed better than previous ones. Hope you and family are doing well. God Bless,
RussMemberNeil,
Get well soon – we need your knowledge about
these blood disease. Best wishes and prayers,
RussMemberTom, Check with a good hemo/onc as there other options like using stem cells from a placenta or an autologous transplant which doesn’t use a donor. Try http://www.LLS.org for info.
Blessings and prayers for your mother.
RussMemberCarruth, Not sure about the AML diagnosis with blasts at 5%. I didn’t go from MDS to AML untill the blasts were over 20%. Anyway it is difficult to say how your MIL will do as everyone responds differently. Vidaza and Dacogen both knock down the WBC, PLT, & ANC so it helps to have the numbers up to start. Pray she will come through it OK.
RussMemberHi Mary,
Shari’s comments makes one think that your doc’s theory of the fever burning up or using the RBCs is a plausible explanation. I pray that Mike will get his fever down very soon. Many prayers for you both – you’ve been through a lot.
Blessings,
RussMemberZeke, I read the internet article you posted and just want to add that the disease is so varied and the individual’s response to different treatments is all over the lot. No one seems able to predict who will be better on one or the other hypomethylating agent. Also note that the FDA approved dacogen treatment schedule is not what is recommended by MD Anderson. Am surprised that your dad’s clinic only offers the one choice. I think it’s important to know why only dacogen is recommended. I have had AML since Jan. 2007 and was on Vidaza + an HDAC inhibitor for 9 months. My WBC was increasing so stopped the Vidaza and I’m holding my own now with Dacogen. Hopefully your doc’s decision is based on information other than that’s all they have. Best wishes and prayers for your Dad.
RussMemberJSRN, My clinic has a web page: http://www.mhopc.com/index.html
The ph. # is: 574 234-5123 (There’s also a toll free.) A nurse can be contacted 24/7. The nurses are the most well trained and nicest people. There are several hemp/oncs but my experience has been only with Dr. Taber. Note that they have offices that may be closer to you -my doc makes regular visits to the office in Plymouth. Best wishes and prayers,
RussMemberJSRN,
Can’t understand an ONC that would ignore a patient’s wishes and order a drug that she apparently cannot afford. My ferritin is 1910 and being the same age as your mother decided to take my chances on the iron overload. I understand her wanting quality of life more than extra years. Is our treatment prolonging life or prologing death? FYI, I have an excellent, caring Hemo/Onc in South Bend if you happened to be in this area. Prayers,
RussMemberLuAnn,
I sent this e-mail to Dr. Issa at MD Anderson: “Noted that on the Dacogen web page it shows the dosage as 15mg/m², IV over 3 hours, every 8 hours for 3 days, cycle repeated every 6 weeks. By comparison the 1st week I had 40mg over an hour each day for 5 days – to be repeated every 4 weeks.” This is his reply: “Your doctor is following our own advice/protocol, which we think is better than the FDA approved dose that is on the web page.”
Hope this helps,
RussMemberJack,
Did your wife’s docs indicate why the reservations? My hemo did not say yea or nay but goes along with whatever works. I feel like it has given me some benefit at this point.
Russ -
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