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MNladyslipper
MemberJack, I forgot to ask about your wife. I know her bmb is coming up soon. I am holding you in my prayers!
MemberHe was out of town on a hunting trip. He went to the ER because he wasn’t feeling right, winded. They did the CBC and discovered his counts. They gave him and IV of Rocephin. That was in a small town of Shenandoah, Iowa. I immediately contacted his doctors at Mayo on Monday. They said as soon as he got home we should come over to have his blood typed. He had developed 6 antigens after his first transfusion two and a half weeks before. He had the transfusion Tuesday at Mayo in Rochester. We were supposed to be in Mexico this week, a trip we had planned last fall. First the doctors all said go, but after his neutrophils fell so low, they said he has to be within 3 – 4 hours of a US hospital. We didn’t want to risk it, so we cancelled our trip. We hope to make it someday!
MemberThe University of Minnesota – Fairview – Minneapolis, Minnesota
Seattle Care Alliance – Seattle, Washington
MD Anderson Cancer Center, Houston, Texas
are all ones I have read a lot about. My husband will be having his double cord transplant at the Univ. of MN. Our insurance covers it 100%. We are very fortunate!!MemberHi,
Free and Jdogsmit are both spam.
ThanksMemberWell, we went to Rochester Mayo Monday night. They had to type my husband’s blood. It turns out he has six antigens! The doctor thought it was very strange that he had only had one previous transfusion. He called up our hematologist who informed him he had had several 25 years ago following knee surgery. The way they explained it to me was that the antigens were introduced way back then, but had lain dormant until the new transfusion woke them up. The antibodies then act like little pacmen and eat up the antigens and other red cells along the way. Our doctor says he has one patient with 23 antigens. He also said it won’t interfere with the transplant, per se, but they will have to have lots of blood typed and stored up. My husband is B+ which is rare, and now with the additional antigens they typed it clear down to his DNA. We went in on Tuesday morning for the transfusion and then asked to see the doctor. It makes for a long couple of days!
MemberHe did get irradiated blood. We live two hours away from the Red Cross. I guess I just don’t understand why this happened. Thanks for answering.
MemberMy husband is 59 and also diagnosed with RAEB 2. He is on Revlamid. We go in for a second biopsy on April 3. We have been told he will need a transplant. His blasts were somewhere between 5 and 10. They are unsure exactly because it was a dry tap. Blasts have to be below 5 for a cord transplant. We are afraid of it moving to AML. RAEB 2 is a fairly high staging. I would be afraid to wait too long without treatment. Maybe you need a second opinion. Your dad’s age should be in his favor. My husband has a lot of chromosome damage. Do you know your dad’s? When was he diagnosed? Good Luck to you.
MemberMy husband is 59 and was diagnosed Jan. 28, 2008 with RAEB-2. He has lots of chromosome damage. He has just finished his first round of Revlamid and is starting the second round without any interruption. The doctor says the Revlamid should raise the hemoglobin and lower the blasts and has been known to reverse some chromosome damage. The Revlamid is being given to get him in a better position for his minitransplant of cord blood at Fairview in Mpls. He will have a bmb on April 3, so will know more then. If the Revlamid is working we will stay with it for a while. If it is not working, we will switch to one of the more agressive chemos. We have our fingers crossed! Good luck to you, I hope you will have better luck with a new medication.
MemberNeil,
No one has changed the prognosis. THey all said that the chromosome damage makes it difficult to predict. Do I ask the doctors for data on the drugs, or is there another place I can go. All we have been doing for the past month is reading and researching. My husband had his first blood transfusion today, his hemoglobin had dropped to 8 but the other numbers were at least holding. I thought it somewhat ironic that his transfusion came exactly one month after his diagnosis. Social Security called yesterday. They thought it a little different that he had applied for disability so soon after being diagnosed. I told them what I knew and she said hopefully it would just take a phone call to the doctor to get it approved. Just one more “little” thing to add to an already stress filled day!MemberJack,
I’m hoping your wife and my husband go in about the same time. We would all have someone who understands and we could commiserate with. Your wife has outlived my husband’s prognosis. We don’t want to give up any time that we could spend together and with the kids by going in too soon, but we don’t want to miss our window of opportunity either. They do have two cords available now that are a preliminary match. Will they be available in 6 mos. or a year? I want to bury my head in the sand!MemberWe went to Fairview yesterday and they said my husband did not have a match, but they did find two cords of blood that were a preliminary match. They wanted him to have a bmb after just one month on the Revlamid and if it is not working move him to Vidazda. If it had worked and his blasts were down below 5% they wanted to proceed immediately with the transplant which could be as soon as the end of March. I called Dr. Steensma at Mayo this morning and he disagreed with the rush to transplant. He wants to give the Revlamid a chance to work. He said at least two cycles. If it works it would give us time together hopefully symptom free. It is so confusing to get these different opinions! BOth Fairview and Dr. Steensma said we have about a 35% chance of a successful transplant with the cord blood. This is very scary!!
MemberOptimistic,
My husband was just diagnosed the end of January. It was just a few days before his 59th birthday. He has RAEB and a lot of chromosome damage. Does your mother have chromosome damage? We are going to the Univ. of MN Tuesday to talk to them about the future. What are your mother’s blood counts? My husband has never had a transfusion. His hemoglobin in 8.4, Neutrophils .48, platelets 150. He feels fine except for sometimes being shortwinded. The doctor says he will know when he needs a transfusion. Good luck and thanks for the info.MemberWell, we went to Mayo today and met with our regular doctor and then Dr. Steensma. You can check out the good news on our Caring Bridge site
http://www.caringbridge.org/visit/barryl
Dr. Steensma gave us some new and encouraging news about reversing chromosome damage. We go to Univ. of MN next Tuesday.MemberThanks for the advice. We are seeing Dr. Steensma this week and we are going to Fairview next week. Fairview sounds wonderful. They will have a social worker assigned to us, something Rochester did not do,even though we asked. They also handle all the insurance and sounded if not positive at least upbeat. I asked the doctor in Rochester about a cord transplant and he said it would not be possible for a man just over 200 lbs. Fairview on the other hand said it would not be a problem. They do double cord transplants. We found out today that my brother-in-law is not a match, so we were pretty down until Fairview called us. I am pretty impressed so far and looking forward to Tuesday’s appointment.
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