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lynette
MemberSandy,
I sent you an email
LynetteMemberSandy,
I’m so very sorry. I’ll be praying for you and your family.
LynetteMemberTerri and Suzanne,
I am so happy for both of you!! It gives us hope!
LynetteMemberTerri,
Thanks, we needed support right now
LynetteMemberMy Mother’s situation was similar to Suzanne’s. We were told exactly the same information. “T” = transformation. Usually, it is a shortened time between transformation and AML. Hence, the new terminology. Our Oncologist did not specify that RAEB-T was a result of prior Chemo/Rads. Rather, any type of MDS could be a result of prior Chemo. Every doc probably has his/her own thoughts on the subject.
MemberKristy,
I am so very sorry. Take comfort in the fact that you were there for your Mom. My prayers are with you and your family.
LynetteMemberRuss,
My Mom was on Decitibine in July. It was covered by Medicare B because it was given in a Hem/Onc office.
LynetteMemberHi Jeff,
We’re cheering you on!!!
LynetteMemberKristy,
Prayers for you and your Mom. hang in there.
LynetteMemberGloria,
My prayers are with you.
LynetteMemberHi Kristy,
Oh do I know what you are going through. I was in the same exact spot in July. Mom tried a week of Revlimid($3500, was going to be one month; counts went too low). Then, she tried a week of Decitibine. At that point her AML was back–no doubt. Her counts were very similar to your mom. Her Decitibine was covered by Medicare because it was given at the Hem/Onc office. I don’t know how Medicare paid–perhaps because she started w/ MDS that transformed to AML.
Mom eventually needed standard induction. It was the ONLY option. It was not easy, and she had every side effect and problem one could imagine. My Mom is 75, otherwise no other health issues.(I feel strange stating that—AML is more than enough!)Her docs held off w/ the heavy Chemo until there were no other options, and told her that the treatment could cause her demise. However, she wanted to try it.
I pray for you and your Mom. I know how you feel. It is a very tough place to be. In the end, it will be her decision.
Prayers and understanding,
LynetteMemberHi Jeannine,
My Mom was dx. with AML at age 74. The only chance at a remission was through a Center of Excellence. We went to New York Presbyterian, and during her 2nd clinical trial, she achieved remission. Our local docs had nothing to offer her due to her age.
You may use my email if you have further questions.
LynetteMemberHi Janice,
Sorry to hear that your Dad is in the hospital. Infection is a probable cause. Is the fever/chills after the Decitibine? A possible s/e is fever.
Take care,
LynetteMemberI will pray for both of you
God Bless
LynetteMemberJim,
Dacogen can be administered either way. There have been a few research studies that favored the 5 day outpatient route. Mom had the outpatient infusion–1 hour per day for 5 days.
Lynette -
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