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• February 21, 2008 at 4:48 pm #20272
  Lasko745

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  On December 27, 2007 my mother was diagnosed with MDS. She is 54 years old. She has had 3 blood transfusions since November. Yesterday the doctor told her they will do the BMT within the month. She has an identical twin sister who is her match. I have been reading a lot online about blood cancers and BMTs. There isnt much out there with just MDS so I was glad to find this site. I’m terrified, nervous, and relieved that we are getting the show on the road and hoping I can get some support here! I have never even heard of MDS until my mothers diagnosis. I don’t have time to ask why or how…just have time to be positive.

  February 22, 2008 at 12:39 am #20273
  poppyshope

  Member

  Welcome, and know that there is definate support here. Optimistic is good and informed is best- so you have come to the right place. From what I understand of this disease a BMT is the only way to a cure, and since this disease is different for everyone if you have the chance it is the way to go- (i think anyway). Your mom is young enough and with a twin sister she has her match so good luck to you and we will keep you in our prayers! BTW- would you mind telling us how was your mom’s MDS diagnosis came to be and where she is doing her transplant? Again, thoughts and prayers to you and mom, and try and stay optimistic, Jen

  February 22, 2008 at 1:11 am #20274
  Lasko745

  Member

  Thank you! About a year ago, my mom was told she was anemic. She was taking pills for that. But she was still very tired all the time so she went back to the dr. It was appointment after appointment not knowing what was the exact problem for quite some time. They were testing her for just about everything it seemed. She had too much iron so they took her off the pills along the way. She had her BMB and the dr sent her to Karmanos in Detroit. That is where is was diagnosed. The transplant will take place at Harper Hospital next door to Karmanos. I have not had any experience with that hospital and since is in a bad part of town I am somewhat weary, but because of the area not the drs!

  I know that the BMT is what we have to do to fight this, but it is hard because besides being tired she seems fine. I have an idea what to expect with the BMT and the coming months, but nothing can truly prepare you. I just hope by this time next year, I might be able to exhale.

  February 24, 2008 at 9:13 pm #20275
  MNladyslipper

  Member

  Optimistic,
  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.

  February 24, 2008 at 11:19 pm #20276
  Lasko745

  Member

  MNladyslipper…her latest transfusion was this past Monday and beforehand her hemoglobin was 7.5, I am not sure about the other numbers. I asked to see her paperwork last night actually and they have not given her any with counts. Just told her the hemoglobin count each time. That is what red flagged her doctor, so to speak, because before they knew what was wrong, it kept dropping. The lowest it has been is around 5. And beyond that, the only thing I know is her white has always been where it is supposed to be. They have not said anything about chromosome damage but I will be sure that she brings that up. I would hope that is something the dr would of told her though. She has to keep in touch with the dr at least once a week right now.

  After reading on this forum, I told her that she needs to request a copy of all the counts. I appreciate the knowledge here.

  On a positive note, we did find out that insurance will pay 100% and there is no cap. She will get long term disability from work as well. Now we just wait for my aunt to make plans to fly out here…she is in Denver and we are in Detroit.

  February 25, 2008 at 9:54 pm #20277
  jaxem

  Member

  optimistic
  you should find out what sub-class MDS your mom has; anemic w/ excessive blasts, anemic with sideroblasts, etc. always review the counts everytime she has them done. getting below 8.0 hg, neutrophyls 0.5 & platelets 20 is time for transfusion or white count shot (neupogen/neulasta). GGRReat she has a donor IF she really needs the transplant. without knowing her sub-class, hard to say if she needs one or not. many people live a quality life w/o having to get one although your mom has needed a lot of transfusions in a short period of time. get back to us with more info. mds is basically aml with less than 20% blasts in the blood.

  March 18, 2008 at 1:43 pm #20278
  Lasko745

  Member

  Ahhhh finally back. Mom went to the dr today. She had another BMB last week and all the tests to see if her body is otherwise healthy. Things are looking good as they can in this situation. I completely forgot to ask about subclass though. I will find out. Dr says her does have chromosome damage. She does not have any blasts. Can someone explain what exactly these mean?

  The plan is for her to go into the hospital next week to get the show on the road…

  March 18, 2008 at 2:09 pm #20279
  Neil

  Member

  It will depend upon the chromosomes involved and her classification. Some chromosome abnormalities have a better prognosis than others.
  RCMD with a 20q- has a pretty good prognosis.
  RA with a 5q- presents some options for drugs that do well.
  No blasts is a big plus. Hopefully they will not appear.
  RA, RARS are the more “favorable” classes. RAEB generally is much more severe. RCMD usually has a good prognosis, but can present problems that make it more difficult to deal with.

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