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sdrake
MemberFran,
My dad takes his shots over the weekend. He takes his at our local hospital both weekends and week days. He has gotten along well with the Vidaza with his only real complaint being constipation. I hope Jim has as good of results as Dad has. My thoughts are with you both.
MemberCaroline,
I admire your attitude. I feel like I am in a constant state of worry about my dad’s CMML. My dad, like your’s, is a real trooper and is not letting this disease get him down. He is active and doing well. I want so much to be a help to both my parents as well as my own family. How do you do it?
MemberNeil,
You mentioned that the ANC seems to be a vital component. I was wondering what your’s normally runs with your wbc in the 1.1-1.4 range?
MemberDad’s wbc was 1.3, his seg neutrophils 61, and his band 4. I guess this figures out to be an ANC of 845. Dad’s oncology nurse told us to multiply the wbc by 10 and then multiply that by the neutrophils + bands. I think I have that right. It seems different labs use different measurements. It is all too confusing.
MemberMy dad had 4 1/2 rounds of Vidaza, and things were looking good. His counts stayed up except for his wbc. Dad has CMML, so we were happy that the white count was getting lower. His ANC got too low to continue treatments, so they were delayed about 6 weeks. During this time his rbc and hemoglobin got quite low. He didn’t have any tx but had to be very close. I was very afraid that the Vidaza had stopped working. Once his ANC got above 1500 treatments were started again at a reduced dose. Thankfully his counts began to stabilize again, and his treatments have continued. I too am concerned about when the Vidaza may stop working again and wonder what to expect.
MemberKnow that you and your family are in my prayers. Others do care and prayers are answered. Stay strong.
MemberSandy,
My dad started Vidaza in February for CMML-1. His oncologist said that Dad would need at least 3 rounds before they would know if it was working. Dad was fortunate and there was improvement immediately. His wbc fell into the normal range, and his rbc and hemo went up. He got along well through 4 1/2 rounds of treatments until his ANC got too low, and they delayed the shots until it came back up. During this time his rbc and hemo dropped pretty low again although he didn’t get any tx – he had to be close. I was afraid that the Vidaza stopped working. They started him on a reduced dose of Vidaza after a delay of about 5 weeks. His numbers improved again. He has commmented that he has no energy at times but remains pretty active. From what I read, he has gotten along quite well with the treatments as they have not really made him sick or completely wiped him out. We just pray that things keep going well.
MemberHi Jimbob,
Best wishes to you. Your good news is inspiring to all of us who are touched by MDS in some way. Thanks for sharing and continued good health.
MemberMy Dad’s spleen started to shrink with the Vidaza treatments. His oncologist says that he cannot feel it any longer – I assume this is good. When it was so large we asked about removing it. The doctors told us that it was too dangerous. It makes me curious as to why some are removed and others are not.
I assume that 7.9 and 79 would be the same thing but am not sure. Here they use 8.0 as the transfusion number. When Dad’s got to 7.9 they said we would wait another week and see what happened. Thankfully they started coming back up and the Vidaza really brought them up again.
As to knowing more about Dad’s numbers, I ask LOTS of questions. Probably make a nusance of myself, but I just remind my Dad that it is because I love him. It seems one way I feel like I am helping is by trying to find out everything I can about this nasty stuff.
I am also curious about Revlimid. I read that it is working for 5q MDS. What exactly is 5q and does Revlimid work for CMML? It sounds so promising. I just keep praying that it is something that will help Dad.
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