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Zoe
MemberOK, I am going to look at this stuff. Can it cause chromosome abnormalities? Or is this just for folks with normal chromosomes?
Zoe
MemberYeah, me too. Just started my AVG. Found a “Trojan Horse Downloader.Small.57.BA” Caroline, do you have a virus scan? If so, try running it. Anyone know what this does?
Zoe
MemberI am so sorry to hear about your dad. Why do you think it was the Viazda? I really don’t know anything much about it. Will be praying for you .
ZoeMemberI don’t know any of the top of my head. It does seem like you have to take a handful if they are small though. Try looking around http://www.iherb.com/store/
They have reasonable prices and a really great variety.
I just went there and poked around a bit. They have liquid vitamins with no iron too. I may look into that myself.
Zoe
MemberThanks for sharing the good news. Have a wonderful time!
Zoe
MemberMay God bless you with peace during this difficult time. Praying for you.
Zoe
MemberBette,
Hang in there girl. Just sent up a prayer for you. We are there with you in spirit.
Zoe
MemberGood news! Glad to hear it, just sent up a prayer for you all. Good luck with your knee surgery.
Zoe
MemberCool, I am going to check it out. I do foster care so I have index cards for everyone in my wallet. However, I love freebies, and am always looking for new ideas, I am off to check the site out.
Zoe
MemberSandy,
I am so sorry. I will be praying for you.
Zoe
MemberWow! Good news on two fronts! Congrats Suzanne and wonderful news for you and Bob, Terri. Here’s hoping the good news streak continues…I get the results from my latest BMB today.
Zoe
MemberPhylis,
Welcome to the board. It is a very helpful and hopeful board. It is good news that you have no chromosome abnormalities. It is nice to “meet” you.
I don’t know anything about the vaccine except what I saw here.
Zoe
MemberLydia,
My first BMB showed 85% of my cells had the 5q- and showed one cell with -7 (chromosome 7 missing an allele–I think that is right–someone please correct me if I am wrong). The hematologist at the cancer center (where my 2nd BMB was done)is doing a more sensitive chromomsome test which will specifically look for the -7. -7 carries a poorer prognosis than 5q alone.
The first hematologist did only an aspiration (even then, the smears were unreadable and useless, and the pathologist called the clot sections adequete–meaning not great?). He did not do a biopsy at all. Not to mention the whole atmosphere was horrible, I cried and it hurt like heck!
The second one at the cancer center was much better. They gave me an Atavan, allowed my friend to stay in the room with me, joked and told me what they were doing each step of the way.
Did she have to start the Exjade due to the transfusions she had? Or was it from the Revlimid? I know the doctor at the cancer center said she wants to keep a close eye on my ferritin levels. Yes, please let us know if the Revlimid starts working again. Is it just her RBC that is affected by the disease?
Your mom sounds like a trooper. Here’s hoping her counts hold at good numbers.
MemberYes, we are lucky to have Revlimid. I admit I am anzious about taking any perscription meds, but if it keeps me transfusion free that would be great. Right now we are watching my counts, if they start dropping Revlimid will be the first course of action.
Zoe
MemberI finally found some info. It seems it is typed 5q- syndrome by the characteristics, not the karyotype (other than the fact that 5q- can be the only abnormality). 5q syndrome has moderate to severe anemia, normal to high platelets with mononucleated megakaryocytes, and less than 5% blasts. So far I have that covered. What is confusing is that not everyone considered 5q syndrome has all of these, and some who start with this go on to other aspects of the disease. I wonder if the diagnosis changes then, i.e., they say, “Oops, we were wrong, it wasn’t 5q sydrome.”
So far, my counts are holding, they are off, but they have been about the same for the past year. If it turns out I really don’t have -7, maybe they will continue to hold for a long time. Heck, maybe if I do have -7 they will hold for some time.
I am starting to relax a bit, but I think I may get anxious again next week about Wednesday (the day before I get my new results).
It is frustrating that I have to pay for the first BMB that was so poorly done and had to be repeated two weeks after receiving the results from the first one.
Zoe
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