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Myelodysplastic Syndrome

rodc
Posts: 1
Joined: Mar 2012

Under discussion boards there was not a board listed for MDS or a board for blood cancers. However under the leukemia board I did find some older post re: MDS. Myelodysplastic Syndrome is one the least known of blood cancers as well as Myeloproliferative Neoplasms. If you ask the man on the street what is Mylodysplasia, Lymphoma, Myeloma or leukemia, the response more than likely they will have perhaps some accurate information on those other than Myelodysplasia. MDS is a diagnosis of cancer and unless you are a victim or family of a victim of this disease, sadly you know very little or nothing of this disease.
I am 73 years old and was diagnosed in September 2011 after a bone marrow biopsy. After a period of 6 months and constant pushing from my son, I got a 2nd. opinion at the Duke Cancer Institite and I wish I had done so earlier. If your hesitant in getting a 2nd opinion and feel like your betraying your original physician, stop feeling that way, a good doctor would understand you wanting the best. Complicating my problems with MDS is the fact I am also under treatment at Duke for pulmonary fibrosis. A double whammy!! At present my RBC and hemaglobin although low are not low enough to initiate any treatment e.q. chemotherapy. At this point my platelets and WBC are normal and my blast are not high, however I do have a deletion of chromosome 7 which is an indicator of a poorer prognosis.

I have never joined in any type of chat room, but discussion is therapeutic. I would like to hear from others with MDS and to see a separate chatroom for Myelodysplastic Syndrome.

dasspears
Posts: 233
Joined: Feb 2009

Hi Rodc:

I was treated for anal cancer in 2008 with chemotherapy and radiation. My red blood counts continued to be low so my onc performed a bone marrow biopsy that showed mild myelodysplastic syndrome. I have been anemic since I was 16 (now 56) and it is a type of anemia that does not respond to iron so the doctors were always perplexed. My onc thinks I may have had MDS then. My counts run low normal with adequate neutrophils so we are taking a watch and wait stance.

I know nothing of this disease and would be interested in learning how it affects the quality of life for people.

Debra

MMHancock
Posts: 1
Joined: May 2012

My Father was diagnosed in 2007 at age 71 and has been undergoing treatment the past few years. I am also frustrated at the lack of attention this is given on this site. He is not doing well and I was looking for support from other family members giving care to their loved ones with MDS. Best of luck to all with treatments.

rorkesdrift
Posts: 2
Joined: Jul 2012

I am 75 years old.Bone anomalies were discovered 3 years ago after a biopsy for prostate cancer.Numerous X-rays, a cat scan, an MRS and finally 2 bone biopsies were performed to detemine the possibility of MDS.No final diagnosis was possible owing to the fact that the bone biopsies resulted in 'dry taps'-either because of my massive bone structure,the insertion of the needle at the wrong angle,or physical weakness on the part of the tiny
female oncologist-haematologist.As I have no overt symptoms and have enormous physical strength(easily bench press 4 time a week 6 sets of 12 repetitions at 165 lbs), I refused a third bone biopsy.However,I asked my GP to authorize a CBC test evey 3 months.The blood components have had ups and downs.The last one,however showed terrible results and I agreed to my GP's advice to have a third bone biopsy done by a different specialist.I still have no overt symptoms but I suspect that liquid bone marrow will confirm some form of MDS
and that it will eventually take me away to the 'great somewhere'.MDS is a new name for a condition that has been around for some time.My GP assures me that medicine is an inexact science and I secretly chuckle because my education and profession demanded great skill in inductive logic (the basis of all so-called human knowledge)and a very high level of skepticism.Best regards to you.

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