milofibrosis vs MDS

[lucym]

I just got information from BMB on my Mom that she has fibrotic marrow. When I asked if she had progressed to AML the doctor said she did not see it progressing to that but to milofibrosis. Can anyone tell me what that is and the difference between that and MDS? Is it a form of MDS? Any information would be most appreciated. Thanks to all Lucy

[Jimbob]

Lucy,
Google myelofibrosis to get explanations. I believe that MDS, and some other things, can cause myelofibrosis. It is kind of like scar tissue or debris build up inside the bone and it takes up space inside the bone that reduces the space for healthy bone marrow. It was one of the things that I had been warned about if I wanted to put off having a SCT. The hemo docs said the longer I put it off, the more time the myelofibrosis had opportunity to build up. Once it is there, it cannot be removed.

[lucym]

Jimbob are you saying SCT not possible now? My Mom is scheduled for middle of May.

[Jimbob]

NO, I am not saying that at all. I think that the doctors were trying to encourage me not to wait too long if I wanted a SCT. They were able to tell that there was some fibrosis and said that OVER YEARS it could crowd out bone marrow. In my case, the hemo docs did not want me to wait and see.

[sarah]

Lucy, my husband was dx’d MDS RAEB Dec 01. We were unable to find bone marrow match. However in July 05 we too were told his marrow had become fibrous, unable to aspirate. Spleen was enlarged and removed Sept 05. Spleen had enlarged to around 4 lbs. Tough surgery. University of Minnesota hospital found 2 cordbloods, not perfect match but we planned to go forward with it. Checked in to our local hospital for induction chemo Nov 14, 05 to get blast down. We were told we would be there 30 days , then fly out to Minnesota prepared to go forward right away with more chemo, raditation then double cordblood transplant. Drs in Minnesota were very concerned marrow had become fibrous, was not sure if he would have engraftment. If so it would be slow. We were prepared for that. Needless to say we never made it to Minnesota. What was suppose to be 30 days turned into 59, he passed on Jan 9th. Acute renal failure. The chemo caused him congestive heart failure, elevated liver and kidney functions, white count never recovered. ANC remained zero. I never thought he would pass away during this induction. We were told the mylefibrous played a big part in this. To what degree we will never know. We thought after 4 1/2 years of not finding a bone marrow match the cordblood was a answer to prayer. My husband was 49 when dx’d, 53 when he passed. As you can probally tell by my post I am hurting. I have been with him since I was 17, we would have been married 30 years this coming July. I am 47. He is the love of my life. One day at a time is the best I can do. Wishing the very best for your mom.
God Bless

[lucym]

Dear Sarah,
I am so sorry for your pain, it is very kind of you to share your story with me. The information is very helpful. My Mom does not have any issues with her spleen or kidney. This all started with her having low platlets. Now all cell lines are effected. We were concerned about advancing to AML now they have given us this fibrosis diag. I will be sure to ask the doctors how the fibrosis will effect the SCT. Continue taking one day at a time, I will keep you in my prayers and all the other members of this forum.

[JAGGYONE]

Sarah,
Reading your story has touched me very deeply. My husband had a BMT in August 2004. We felt so blessed because we found a non-related donor (9 out of 10 match) within a few months of starting treatment at Sloane Kettering in NY. He was doing well until a major setback (not related to the BMT) happened almost a year ago. The lastest news is that his own cells (the bad ones) have begun to show up in his marrow and now the doctors feel that they have tried everything they could. Every medication he gets that fixes one problem causes two others to occur. They are talking about the possibility of a boost from the donor but that won’t cure anything – only help keep his counts up. He’s dealing with that as well as graft-verses-host-disease. I haven’t come across much about GVHD here. Is anyone experiencing this horrific side effect? The bottom line is that they are now trying to maintain his quality of life (albeit very poor) for as long as he chooses to continue his fight.
It’s heartbreaking to see him so down day after day believing there’s no hope for a cure any longer. I just feel so helpless.
I wish you strength and offer you prayers and sympathy in your time of great loss and sorrow.
Judy

[Engel]

Dear Judy,
Was very touched by reading your story, my husband has just been diagnosed with MDS and I have found very little help in Ft. Myers, Florida he has had two transfusions, they seem to last about 6 weeks and he receives Procrit which sofar has not helped at all. Any information would be helpful. Gloria

[Neil]

Hi Gloria,
A couple thoughts for you to think about.
Is your husband seeing a hematologist experienced in treating MDS patients? This is important!
How long has he been on Procrit? It might take a while to kick in.
Were his Epo level and iron levels checked before starting Procrit. If Epo was normal to high chances are it will not work. Procrit needs iron to function. If iron is low a supplement might help.
If he has been on on Procrit for over 90 days with no response, you might want to discuss switching to Aranesp. There are cases where Arenesp worked when Procrit did not.
You might wish to see Dr Alan List at Moffitt in Tampa. He is one of the best in the MDS field.

[Engel]

Hi Judy,
Thanks for the information, we had another transfusion today his count was way down again. The doctor Dr. Raymond seems to be very knowledgeable about MDS, I will try to get an appointment with Dr. List I have heard of him. My husband is having a hard time accepting this and wants to believe it will somehow go away.
Thanks, Gloria

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