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Zoe
MemberShari,
Thanks for the info. For now the Aranesp is holding my hgb in the 10’s which I can live with. It is so hard to tell when it is going to stop working. I have had my counts fall a little each time for months, and I thought for sure Aranesp was losing its efficacy for me, only to suddenly have a hgb count of 11.5 one month! When it stops working is it a sudden drop, or a slow decline? I would like to have some time to start the process with Amgen. But I reckon it won’t work that way. But hey, maybe I will be one of those lucky ones who goes into a spontaneous remission–at least until I find a rich husband to pay for my meds :*), or win the lottery or inherit a million from some unknown relative…there’s always hope
Zoe
MemberBirgit,
I am sorry to hear about your mom. I will be praying for you.
Zoe
MemberI hear you Jack. My insurance will not cover non-generic pills. I dread the day Aranesp stops working, because Revlimid is the next choice. There is no way I can pay for it.
Frankie,
Does that program for Revlimid take long to get into?Zoe
MemberFrankie,
I hear you about medical professionals. Honestly, I feel blessed with my PCP, but if I have to see the other CNP, I dread it. I think she believes I am a hypochodriac this past year.
I get the achy joint thing too. I also get that creepy, crawly feeling all over my skin. There is a link between MDS and autoimmune disorders. I am starting to wonder if I have developed fibromyalgia or something. I have so many unexplained pains any more. Some are quite severe, but they come and go, so it is hard to know what to do. I am only 48.
Zoe
MemberJack,
Prayers sent for you all.
Zoe
MemberI have been sick time after time this year. I have wondered the same thing because previously I hardly ever got sick. It has been a bad year for illness, at this point I am contributing it to that. My girls have all been sick this year also, so I think it is just a bad year.
Zoe
MemberWarren,
Blasts are immature cells. In MDS cells often overproduce, the problem being they are not healthy cells and they don’t survive. Hypercellular tells that the cells are overproducing. Very plain answer, maybe someone can give more detail. Seems by the time I get on the board I am exhausted.
Zoe
MemberSorry to hear you were in the hospital again. How are you are feeling about the upcoming transplant? It sounds hopeful. Prayers and best wishes.
Zoe
MemberDo you mean Lab Tests On-Line? http://www.labtestsonline.org/
They do have good basic info on different tests.
Zoe
MemberJack,
I am glad you all figured out what was going on. What a tough road you all have had. Can she go somewhere else for the transplant so she doesn’t have to wait? I will keep praying for you all.
Zoe
MemberNo, not too bad.
Zoe
MemberNESon,
I am sorry you and your family are going through this. To answer your question, the BMB will reveal much. It is not used exclusively for MDS, but can help diagnose it or other issues. It will also show if there is any chromosome damage.
Have they done blood tests to rule out nutritional deficiencies? Many things can cause low CBC’s besides MDS, although the fact that all lines are dropping dose often point to bone marrow failure disases. Even if it is MDS, there are so many new treatments to help, so don’t despair.
Keep us posted,
ZoeMemberLynn,
Welcome. Like you I have no cancer history, and I am 48. I am doing well in regards to my MDS, which is also a low risk MDS. Looks like Jack got you set up to start learning. There are so many wonderful and knowledgeable people on this forum.
Zoe
MemberJack,
I will pray for your wife. Went to Urgent Care today and was diagnosed with astmatic bronchitis. She added an Albuterol inhaler (what a God send, just that alone helped with the breathing so much) and steroids for 6 days. I actually ate dinner, though any effort still tires me.
You hang in there too. Let us know what you find out from the probe culture.
Zoe
MemberEve,
Last night the fever only hit 100, and twice it was normal. The only reason I checked it was because I woke up sweating. I still feel terrible though. Pain that radiates across my lower chest, and a tender kidney (maybe another kidney stone?, although I didn’t get sick like this last time). Nauseaus, but not throwing up, no appetite to speak of. I have to force myself to eat anything. Saw my CNP on Tuesday, labs were done the previous Friday (today is Saturday).
Choijk,
Yeah, I kind of figured the monocytes were from whatever the infection is, although usually my neutrophils go up too. Maybe it is the type of infection.Thanks for letting me vent. My girls have enough to deal with my being sick, they don’t need to hear me complain too.
Zoe
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