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PamyRn
MemberLola
The only thing I know about abnormal chromosomes is if you ever look for a bone marrow donor it will make a match harder. So sorry to hear about you having to battle both the return of your breast cancer and MDS. May I ask how old your are? When did you first start treament for the breast cancer? Good luck with any treatments you decide to continue or start!
God bless PamMemberMamyKayz
Im excited for you but share your fear. I also am scheduled for BMT at University Of MI, March 5th. I have no chromos abnormalities and have had two 10/10 matches so far. First guy flunked his physical so as of Tues they are contacting another 10/10 and asking to rush the process as a admission date for March 5 is scheduled. Are both you and donor neg CMV? So we are but with as many transfusions I have had I may not be now. THey have rechecked it tues and will again on admission date. My donor and I also share the same blood type so that will help also. Male donor. How about yours?Christine has kinda scared me moe than I already am.
MARSHA AND CRISTINE:
Have questions for both of you? Would like to know how close your matches were??? Male or female donors?? Related or unrelated? You and donor neg for CMV?? Was your blood types the same?? How was your general health going into the transplant? (besides the MDS)Also do you have any chromosome abnormalities and did you donor share this abnorm? I dont mean to be drilling but just want to know If I am going into a similar situation and what I might have to look forward to. I know with AML I really dont have any other option for “possible” cure. But also worry about quality of life. Any info would be helpful. Thanks so much
PamMemberKathy does your Dad have MDS or AML?? You said the blast count in the “blood” has gone down (my impression is if blasts are showing up in peripheral blood then that indicates there is alot of blasts=AML)but the WBC count is high. The day my WBC count, which was always low, went from 9-17 in one week they did a peripheral smear and the blasts showed up in my blood and they said I converted from MDS to AML and immediatly went into hospital the next day for a “round” of chemo.
Best of luck with your Dad
PamMemberHey everyone
I have been taking benadryl and atarax for the itching and do use hydrocortisone cream. MOst recently have prescription for pramasone cream which has 2.5mg of cortisone in it. Have some relief from creams and meds, but have been taking them since 2nd week of Jan and it still bothers me. Started to think I was crazy and maybe it was psychological because if Im busy I dont have the urge to itch like I do when Im sitting down for the night….LOL Just wondered if anyone had similar experience
PamMemberSuzzane
I am so excited for you. If I remember right they were unable to find a donor for you so that is why you went for this alternative treatment which seems to work. I was diag with MDS-2 first of Nov…went into AML Jan 5th. Into hospital for “round” of chemo…..First biopsy two weeks after showed remission…Scheduled March 5th at U of Mich. Yesterday found out donor failed physical so actually they had another specimen and they match also 10/10, 30yr male, same blood type. Hope to keep same admission date, but prob will take an extra week. Anyway I wish I knew if the treament you have been taking would work for me. Im so afraid of this BMT. I have some residual skin issues after that first round of chemo and will post a new subject on that to get advice. I have had four BMB and have felt and remembered two of them…same drugs though. Demerol and Versed. Anyway the one I had last Fri that U of M required showed 3% blasts…but showed “slight” myleoblastic changes in the shape of other cells indictitive of MDS…so looks like I wont stay in remission long. I am so excited for you…hope you kick it in the butt!!
PamMemberMarsha
What part does the CMV play in a donor selection?
The first test I had it said I wasnt positive or negative..just kinda in the middle. They redrew me and I came back negative….does that mean they have to find a donor that is negative??? And if they are postive then I could battle with problems relating the that??? Right now have one 10/10 match…they are testing a second specimen and have two more coming this month that look to be 6/6. I probably will be going in for BMT by 2nd week of Feb. YIkes…anxious to get this over with but scared.Pam
MemberDavea
Have been working since this you were diagnosed?
How much time is consumed in getting transfusions, dr’ visits, feeling like crap ect?
I am also 48yrs old…have only been dealing with this since 1st of Nov and Im so tired of it all. Have been on sick leave from work. Im a health care worker. Have been so up and down with counts and transfusions. Thought I had at least 9 months but mine was RAEB-2 and it transferred into AML and I have now undergone one “round” of chemo. It went well but the week after has been the challenge. Had terrible rash, diarrhea, loss of appetite, hair starting to fall out, hgb went down to 5.5 and ended up in ER the other night as I couldnt wait to am to have transfusion. NOt fun. If there is no possible way to find a perfect match I would prob go with the BMT. I just want the chance to live a normal life. I know there are risks but it depends on how miserable this disease has been so far….Good luck with any decisions you make
PamMemberEve. Raeb in Nov with 14% blasts…wbc slowly went up and jumped from 9 to 17 in one week. Did peripheral smear and it showed blasts…doc said when blasts show up in peripheral that shows you have transferred into AML. Am still in hospital finishing my first “round” of chemo….had bone marrow before starting chemo and showed 26% blasts….Will get out tomorrow if no fever. Hope to be in remission as I wait for stem cell transplant.
PamMemberHey Neil
About procrit. I had a erthropoeiten level drawn and my counts were sky high……..meaning that my kidneys are pumping it out, but my bone marrow is not responding therefore I am not a canidate for procrit (synthetic form of erthropoeiten). Was wondering if this Arenasp is one of the same (synthetic form of erthropoeitne)?
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