no chromozone damage and mds

[john e]

Hi every one I am new to forum. I was diagnosed with MDS 6/11/11 after BMB. I am a 62 year old male .

I battled non-Hodgkin’s lymphoma for ten years with lots of chemo after 4 recurrences. I have been in remission from the lymphoma for ten years and still in remission. My oncologist-hematologist says i am low grade with <1% blast and no chromosome damage. Red blood cells in normal range, palettes are 82 and white blood cells 2.8. Most recent blood test 11/02/11) shows numbers are the same. Because of possible insurance issues I have not gone to see a specialist in MDS yet. My doctor has conferenced with a MDS doctor at Cleveland Clinic and he recommends wait and see at this time. A question I bought up to my doctor at most recent visit was if I had novo or treatment acquired MDS. He believes I may not have t-MDS because there is no chromosome damage and the next opportunity he has to conference with MDS specialist he will ask about the no chromosome damage. I am not scheduled to see doctor for a couple of more months . Would like to hear from any body who knows if no chromosome damage means I do not have treatment related MDS. I would also be interested in any other MDS patients especially those with t-mds, as a t-MDS prognosis does sound rather poor .

[Darice]

Hi John
My hubby has t-MDS and, like you, has battled NHL for the past 10 years. And a couple of other unrelatedd cancers during that time. Lots of chemo and radiation, stem cell transplant (auto--for the NHL) in 2008, numerous recurrences . . . no question that he is t-MDS, trilineage, and it is chromosome 7 that is affected. We got the diagnosis started with a BMB mid-March following unexplained drop in blood counts (red, white, and platelets). Took forever to come up with the t-MDS . . . they were expecting and looking for a recurrence of the NHL. Confirmed with another BMB mid-May while he was still receiving treatment for the bladder cancer (right renal pelvis). Rushed through that so he could get started on Vidaza, which he did not tolerate well. Right now, he is getting a Neulasta injection every two weeks and is holding his own. I know it won't last forever, but we're happy for what we've got. I have had trouble finding other t-MDS folks . . . I'm thinking the poor prognosis probably means they aren't around long enough to find the boards. Welcome. And whether you have the "t-" variety or not I will be eager to follow your progress and hear your story.

[john e]

Hi Darice
Thank you for responding to my thread. Though I am new to the forum, I have gleamed much information from it already. Both you and your husband have certainly had many years of dealing with NHL, MDS and other major medical problems. I am fortunate to have been in remission for 10 years from NHL after having 5 reoccurrences the previous 10 years. Just when it appeared that I had no other options a new drug, Rituxin, came out and did for me what none of the other aggressive chemotherapy’s were able to do. I am sure that dealing with your husband’s MDS is a full time job for both of you. That certainly can just wear one down. I am fortunate, as your husband is, to have a loving wife (Jan) there as a caregiver and advocate. Over the years we have gradually learned not to let the disease pull us down every day. Certainly some days that is much easier said than done. I am so grateful for the time I have had. I don’t intend to sit around this time and worry about this on a daily basis as I did before. I will stay informed and do what is recommended and seems reasonable and just let my Doctor(s) deal with this since that is what they are being paid for.
Darice, I hope that in this difficult time you and your husband will be able to have more good days than bad days!

[akita]

Hi John,

this needs not to be a therapy-related MDS at all. You should consult an MDS-Specialist. Then supposedly a bone marroy biopsy will be done, which will probably reveal the the more exact diagnosis. So far as i know it is not obligatory to have chromosomal changes for an t-MDS diagnosis. Also there exists a diagnosis called "secondary MDS". If you would have MDS after a history of lymphoma this could then be you diagnosis if not t-MDS. For me it is not clear if there is a big difference between the diagnoses. It depends on the special person...

Just today as i started to read abstracts of the this year Conference of the ASH- American Society of Hematology (info thanks to Birgitta) i found also a study report regarding the perspectives for therapy-related MDS - they tried to create a prognosis system especially for people with t-MDS. As i remember the study and after reading your former postings i am quite sure that you are in a good prognosis group ... if you really have got an MDS!

In my opinion - i was a similar case with other medicaments in the past which worsened my MDS-Prognosis and probably caused it - it is anyway a disadvantage for you having received lots of medicines/chemos in the past which burden the liver, the kidneys - in general your body.

But it is a big advantage for you that you are experienced as a patient, and that you have got such a helpful and nice support from your wife..

Also i would - after my limited experience with does far not know enough to councel you - check you copper counts, your cink counts, do an examination of your liver-enzymes and try to do something for your liver in time if necessary; your vitamin statuses inkl. Vitamin B12. VitaminB12 and Copper deficits could cause changes in the bone marrow and could be diagnosed as an MDS. High Zinc supplementation or counts can bring wrong Copper counts etc... It`s just for specialists... I will post some studies i recently read in another thread... All the best for your diagnosis and treatments!
Kind regards, Margarete