hiperfibrotic mds

[VIOLA]

Hi ! My Dad has MDS 5Q .Last bmb indicated also bone marrow fibrosis.I also found some informations about hyperfibrotic myelodysplasia -bone marrow biopsy shows increased fibres, megakaryocytic hyperplasia and dysplasia. They wrirte that it is difficult diagnosis (myelofibrosis-mds). They also describe case with patients with hiperfibrotic myelodysplasia who responding to treatment with steroids. I also write about treatment Thalidomide+Prednisone, but I don’t know is there some drugs which can to cause the improvement in bone marrow fibrosis???which can slow down this proces???

[KP2112]

Hi Viola,

It is interesting that you bring up this subject. At my Dad’s last Dr’s appointment he said he did not know why after my Dad’s tx that the blood, which is suppose to last around 90-120 was not. I asked him how we could figure this out and he said he did not know. Well, I started looking around and I came across fibrosis in which the bone marrow gets fiberous and is unable to produced blood cells. That only told me perhaps why counts could drop but not why newly introduced blood fails to last as long as it should. I have also looked into autoimmune problems to try to make a link. He is taking prednisone, while checking his blood sugar levels 3 times daily.

In terms of your situation, I think it depends on the type of fibrosis. I don’t think there is necessariliy a cure but there are medications that can help with it. I will look through some of my resources and see what I can find.

If anyone has any thoughts on this, please respond.

Kind Regards,
Karen

[sarah]

HI, Drs have told my husband last 2 times they could not do a bone marrow aspiration because it was fibrous. They got nothing out. Any one else having this difficulty getting aspiration? Are there different types of fibrous tissue, I am just not educated on this?

[lindajo]

As far as transfusions lasting, I have heard from other patients that it depends on how long the blood from the blood bank has before it expires.

Each unit has an expiration date or shelf life. The closer you are to that date, the less it will last when it gets into your body.

I don’t have any experience with fibrous marrow.

[Donna]

Hi Sarah, I don’t know much about fibrous tissue, I do know though that mom had the same problem with her one and only bmb. She was in excruiating pain during because they had to go much deeper than anticipated to get a sample. As it was, they couldn’t get much because her marrow as well was so fibrous.
I spoke to someone at the red cross about that and they told me sounded like mom at a different type of mds one that is strongly associated with fibrous marrow. I never did find out.

Take care,
Donna

[VIOLA]

Karen! thank You and I would ask You has Your Dad had any negative reacions after taking Prednisone??and is it improvement?? Sarah!Donna! my Dad had aslo problem with his bmb, because His marrow was fibrous.I try find some informations about drugs which can to cause the improvement in bone marrow fibrosis? I also talk to women who has mielofibrosis and she told me there is not drugs which can do it. I’m very arfraid …. Best wishes for everyone!!! I’m thinking about You

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