MDS-update for Gary

[Gary52]

52 years old, Diagnosed with mds in march 2006 after at least 2 years of low counts, MDS confirmed by BMB no specific classification as yet. abnormalty deleted chromosome 7,no blasts, no treatment recommended as of yet, diabetes also and prednisone dependent x 15 years for asthma. Most concerned that abn chr 7 indicates possible progress to luekemia. wondering does anyone have abn chrom 7 and still doing great, i welcome advise and support from anyone thank you. Gary

[Frankie]

Hi Gary

There are different kinds of MDS…which can be determined through a bone marrow biopsy. I have MDS RARS and have lived with it…with supportive care (blood transfusions) for 12 years. But, I am not diabetic. There is a lot of info here online.

Frankie

[Gary52]

Thanks Frankie, I wasnt quoted any particular form of mds although bone marrow biopsy indicated a deleted chromasome 7 i do know that when i was diagnosed in march i had been suffering from low counts for two years maybe more, thats why im curious how long patients can go in my stage without progressing. my physician says i have a slight risk of developing leukemia.Thank you

[Suzanne]

There are quite a few of us now that have lived several years after diagnosis-even some of us with the types of MDS that have a prognosis of living only months. There are even some with diabeties-Neil aren’t you diabetic?My guess is that Diabetes might go more with the typical age we get MDS then it does with the disease. Go to a center of excellence for MDS and take one step at a time.

[Neil]

Hi Gary,
How old are you?
Type 2 diabetes is frequently a result of too much of the “Good Life” in ones younger years.
My docs feel MDS and Diabetes ( including the meds) are not related.
There are several suspected causes, such as chemical (benzene, acetone, toluene) exposure, pesticide and herbicide exposure.
Some patients develop secondary MDS as a result of chemo and or radiation after treatment for different types of cancers.
Have had MDS for 9 1/2 years.
Lots depends upon your classification and risk level and if you have any abnormal chromosomes.
The presence of symptoms is another factor. The younger patients and those with counts on the low side of normal can feel quite well. Those with lower counts feel the effects more and more as the counts decline and age increased. Sometimes an increase in WBC well over normal can have nasty implications.
Do NOT let your glucose get away from you! Lots of patients focus entirely on their MDS and do not keep track of the rest of their body. MDS may impact organs slowly. Keep in touch with your internist so you are aware of your entire physical condition.
Talk to your doc about vitamins, diet and exercise.
I Take a multivitamin, Vitamin C, B Complex with Foli Acid and garlic. Eat a low fat, low carb diet. Get as much exercise as I can tolerate.
Takes time and patience to determine your prognosis and to examine the options. I have been on Procrit and now Aranesp with excellent results. Have not gone to any of the options that would make me feel rotten and may drive my counts down.
The presence of symptoms is an important factor.
Discuss “What if” situations with your doc. Figure out what you will do in the event of a decline in counts (or an increase in WBC). Then update these options as the treatment state of the art changes.
Lots to think about. Get as much info as you can digest. It is a lot easier to deal with MDS if you have a knowledge of the disease, particularly your classification.
All MDS patients are different! We respond differently to the disease and to treatments. What works for one may or may not work for others.

[chuckk333]

Gary,

I was dx’d in Jun 06 and at frist was very concrned as to how long I would have before developing symptoms (I have none yet) It is helpful for those who may want to respond to your posts to know your age, your type of MDS,CBC summary Chromosome abnormalities,etc. As Neil says get as much knowledge about the disease as you can, it can help you when dealing with your Dr. and will get you thru the initial shock at the dx. Use this forum, the MDS foundation sources of information ans support. Also check out the other legitimate sites, such as the AA&MDS International Foundation (http://www.aamds.org/aplastic/)

Best of everything in your fight.

Chuck

[chuckk333]

You can add the information on the details by adding it to your Profile

[Gary52]

Thank you Neil and Chuck for your response I think my wife has also spoken to Neil by email very helpful, also updated my post hope this helps I’m new to this and didn’t realize the importance and difference of all the facts. I’ll be praying for everyone.

[Gary52]

Thank you Suzanne for your advise glad to see you are doing well your positive attitude is probably the reason,I have an onco/hemo I would like to find a place that does see a lot of mds patients though. I will research my area.

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