If it's not MDS, what could it be?

[alexandra7]

Hello Shellie!
I think your father should take more care of himself .This is not right . Maybe it would be good to talk to a hemathologist who specialises in MDS . He should have the BMB as soon as possible. Your father should understand that keeping his health is the most important thing.I mean he must treat what there is to treate before it’s too late and there is no solution left . He should have more tests that maybe would conclde to someting. Maybe if I had gone earlier to the doctor I would have found out earlier that I have Anaemia and they could have given me other things that would have cured it faster an wouldn’t have gotten me to this point .The same thing goes for your father. God be with you and have faith. Alexa

[Shellie]

Terri, I’m glad to know your husband is doing well. Is he still able to go about a normal day? My father stays in bed nearly all the time. If he’s not in bed then he’s sitting up in his office. He does absolutley nothing else besides walk to the bathroom. He is just so weak. Is it the normal progression of this disorder to be this weak? Is it possible to go from being this bad off to being able to function again?

Alexa, I know what you are saying. Trust me, we have tried everything to get him to understand how important this is. I don’t want him to give up. I believe his fear of hospitals and doctors is just so great that it’s clouding his better judgement. I won’t give up on trying to convince him though. Thank you. PLease take care of yourself. I’ll keep you in my prayers.

[gina]

Andrea, thanks! And…congrats to your sister’s surival from breast cancer! Yikes, hope she’s doing better now – that’s rough, but yeah…know how she feels getting hit with stuff after her cancer

Yes, my oncologist/heme also said that that can happen with infections. However, I did have a bone marrow biopsy, and it showed a 25% cellularity out of a ‘normal’ of 47% (rule of thumb: 100% – age = normal cellularity). Since my hgb went from 12 to 11 to 10 (in 6 weeks) then back to 12, he’s thinking it’s all over and nothing more will happen. I AM getting a 2nd opinion at a local ‘center of excellence’ – Karmanos Cancer Institute, Detroit, MI (I live in the metro detroit area). The decrease you describe in hgb and so on w/infections – would that also cause the bone marrow to have only half the cells a normal person would have??? Someone said it like this: “Your bone marrow is a factory, and 50% of the employees are on strike. When the remaining 50% get tired, they get replaced – leaving no more than 50% still doing the work of 100%, and the replacement is transfusions, and the wearing out of the employees is you getting sick because your counts are going down, and when the demand for more work is put upon the ’employees’that are left, they can’t do the job (and you need a transfusion)” Pretty good analogy

My biggest thing now is that I want to know why it happened, is it still happening? Could it be the beginning of AA or bone marrow failure, and if so, is there something we can do to stop it from happening, fix it, or…??? I guess I won’t be comfortable until we do another bone marrow without me on antibiotics and see if it still shows the hypocellularity. There are also a number of plasma cells there but they don’t ‘override’ the rest (3%). I have another appt. with the onco/heme the 28th of this month, then the next day, Karmanos.

Again, my best to your sister! God Bless Her! Tell her my daughter is going to walk the 3-day here in Detroit (Komen) for me, her and all other survivors out there! This takes place in July, 2005. She’s already fundraising and training for it now!

[Terri]

Shellie, Bob has his good and bad days, there are days he doesn’t feel like getting out of bed but he does, He walks the dog, Today he put together a stationary bike that our Kids gave him for Christmas so he can start exercising. He is most tired during and the week after his Vidaza treatment. He is usually better during the day then evening by then he is tired. If we want to go out to eat, preference is a late breakfast since that is usually his best time.
I hope your Dad starts feeling better.

[lauram]

Wow, there are a lot of good suggestions for you. It certainly does sound like MDS but again, you need the Bone Marrow Biopsy before you’ll ever know for sure. Then again, agree to that he has to be mentally sound about wanting to know and trusting the Drs to find out. While BMB sounds bad, there is much that they can do about the pain. My father is having his 4th one on Monday with sedation. I’m surprised that he is open to Procrit. Does his Dr think that procrit is working? We get very tired of all the testing as well but unfortunately, we live in a world where malpractice is foremost on a Dr’s mind and they have to cover their bases. Keep us posted!

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