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DonnaParticipant
Lillian…..How low were your counts? Is that the regular transplant they are talking about or that mini one (I forget what they call it) that is supposed to be a bit easier to tolerate?
DonnaDonnaParticipantThomas, I’m wondering about the result of your bone marrow biopsy. I hope you are well. I also treat at Dana Farber. Are you aware that on this site where they list the upcoming workshops/lectures regarding MDS, it has Boston listed. It is the first time I have seen anything informational in MA since I have been interested in MDS. I hope you had good news.
DonnaDonnaParticipantThanks, Sherry. Is it that you get Vit D deficient because of MDS or is it that Vit D deficiency can make it look like you have MDS? Do you think by my taking the additional Vit D supplements prescribed that it will increase my numbers, like my platelets?
DonnaDonnaParticipantHi…………I have only been diagnosed with pre-MDS and my doctor has me take an antibiotic when I have my teeth cleaned. I’m sure it is because your WBC must be too low to chance the infection you could get from the bacteria in the mouth. That’s my thought.
DonnaParticipantI just read your post. I am very sorry for your loss. May he RIP.
DonnaParticipantYour story about your son is so touching. I am glad to hear that he is doing well. It has to be difficult to keep a 5 year old boy down with restrictions. Thank you for sharing your son’s story with us.
DonnaDonnaParticipantMelissa, how did the bone marrow biopsy come out? Good news I hope.
DonnaDonnaParticipantI am still called pre-MDS, however, my MD is talking chemo when my platelets get down to 50,000. They are about 67,000 now. He is talking about Decitabine (Decogen). Has your doctor mentioned that as an option?
DonnaParticipantThanks for the response.
DonnaParticipantThomas…….How did your bone marrow biopsy come out? I hope you had good news.
DonnaParticipantI am wondering if treating your home with chlordane for termites plays any part in MDS. I have read that homes treated even 30 years ago or more still register something bad in the air quality. They stopped using this chemical in I think the late 70s or 80s because it is considered a carcinogen. Does anybody have any knowledge about this contributing to MDS? I have lived in a house treated with chlordane 43 years ago. Hmmmm. Just wondering.
DonnaParticipantHi Mark,
When you say the room was spinning, it does sound like ear. I have had dizzy feelings at times in my life but the spinning is so very different. When I get the spinning, I am unable to function until it stops. Then I go to my ear doctor who does an Epley’s Maneuver and I will not have spinning for a couple of years. It is a very simple thing the doctor does to move the crystals back in place in your inner ear. I’m not saying that is what it is but if so, it is like a miracle. I had this long before I was diagnosed with MDS and doctors diagnosed it as all kinds of things. It ended with a great ear doc. Good luck to you.DonnaParticipantHI Alan,
Your journey seems like it is moving along very slowly which sounds good to me. The doctors have been watching my blood work for several years. When my WBC went to 3.8, my PCP sent me to hematologist/oncologist. He followed me a year or so and then started talking about myelofibrosis and my need for BMB. His alternate diagnosis was chronic leukemia. That is when I went to the second hematologist/oncologist and he said no to myelofibrosis because my spleen isn’t enlarged. He is just calling it pre-MDS and planning chemo when my platelets reach 50,000. Hmmmm. I guess I have a lot of questions for him at next visit. I don’t go back until June. Meanwhile I am just seeing my PCP over the question…..do I have ostoporosis or not. Bone density test in Oct. said no and x-ray of spine in Jan. says diffuse osteoporosis. Something else interesting. I wish you well in your journey.
DonnaDonnaParticipantHi Ray,
At what age did you have the stem cell transplant? Was the donor a relative? I wish you well and hope things become easier. I am treating at a Center of Excellence, but not with the specific doctor mentioned. I really like my doctor, yet I sometimes wonder if another opinion would be good. This is actually my second opinion though. The first one was also at a Center of Excellence. I had most of the blood work and the BMB with the second doctor. He said I might possibly be a candidate for a mini-stem cell transplant. I don’t understand all this talk when I am being told I am pre-MDS. It is a bit confusion.
DonnaDonnaParticipantRay and Alan…..Thanks again for responding. I thought I would get an e-mail when someone responded on this site but I did not and unfortunately did not come on to see the latest notes. Ray, if you don’t mind me asking, how old are you and what is gvhd? Alan, does your doctor talk about treatment or when to start treatment. As for myself, my compression fracture is not as painful, so I assume healing. I go to see my PCP soon to see if I need to be treated for osteoporosis. Bone density test says I do not have it and spine x-ray said diffuse osteoporosis. A puzzle. My PCP talked to my hematologist/oncologist and it is up to my PCP what to do. Again, I’m wondering if I should already be treating or if the diagnosis could be something different. It is all such a mystery. I hope you are both doing okay.
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