MDS.....Cancer????

[5Q-spray]

How many of you with MDS have been told you have blood and bone marrow cancer? I am now seeing a doctor from a Center of Excellence and he says it is CANCER! Just wanting to hear your thoughts! Thanks

[Birgitta-A]

Hi 5Q-spray,
As far as I understand all MDS patients have cancer except perhaps some patients that are on the border to Aplastic Anemia.

You know patients with CML have got several drugs (among them Gleevec) that has changed the prognosis for all these patients. We hope that we will get drugs with positive effects too. The research about the TET2 mutation is very interesting.
Kind regards
Birgitta-A

[Neil Cuadra]

MDS is considered a form of cancer at some treatment centers and not at others. There are biological similarities and differences between MDS and the well-known forms of cancer. MDS can be a precursor to leukemias such as acute myeloid leukemia (AML) and Chronic Myelomonocytic Leukemia (CMML), which are always considered cancers, but MDS falls into more of a gray area.

Patients and their families may have a different reaction to an MDS diagnosis when it's called cancer because of what they know about other forms of cancer, but the classification of the disease doesn't affect the prognosis or treatment. However, the classification may have an effect on insurance coverage if there are specific provisions for cancer in the policy.

[Frank Winn]

Neil, my MDS has migrated to AML They have me on 28 day cycles of Vidaza in hopes that the progression may be slowed down. Last BMB had 43% blasts with 30 marking the crossover to AML. My counts as of yesterday are showing some improvement. WBC back down to 12 from 23. HG 9.9, and Platelets 226. Start 3rd cycle Next Monday.
Best Wishes,
Frank

[Charlie]

I currently have a cancer policy that is calling MDS a precursor to Acute Leukemia and not paying a dime go figure! My Husband was diagnoised with MDS in 2007. We are going to MD Anderson next week for a 2nd opinion due to the fact that his current doctor is ready to do STem CEll Transplantation. If Md deems it necessary for the Stem Cell Tranplantation , I feel he will be in a better place.

[kertkkey2007]

Originally Posted by 5Q-spray

How many of you with MDS have been told you have blood and bone marrow cancer? I am now seeing a doctor from a Center of Excellence and he says it is CANCER! Just wanting to hear your thoughts! Thanks

Yes, we were told that at UAB hospital in Al But his Dr. that gives him his kemo has never said that and I haven't ask. I ask the Dr. in Al

[Bob Macfarlane]

According to a paaper written by Dr. David R Steensma, while he was with the Mayo Clinic College of Medicine, MDS is most certainly a form of cancer. Dr. Steensma's paper was entitled "Are myelodysplastic syndromes 'cancer'? Unexpected adverse consequences of linguistic ambiguity" and published in the Leukemia Digest Dr. Steensma is now with Harvard Medical and has written a letter in support of my claim with the Veterans Affairs.

The article, which I have a copy of, will cost you about $35 but if you get it online. If you will email me a fax number, I will be happy to fax it to you free.

Dr. Mikkael A Sekeres with the Cleveland Clinic published in the Cleveland Clinic Journal of Medicine "Myelodysplastic syndromes: A practical approach to diagnosis and treatment". The the abstract Dr. Sekeres clearly states "MDS are now considered the most common form of leukemia.

I am out the door to a VA appointment but get back to me. AirAmrka@aol.com