Husband just Diagnosed

[CAR]

Reading about MDS since Thursday March 16, 2006 has been overwhelming. My husband was just told hours ago that he has MDS (Alan is 56). At this point we don’t know the classification or what stage the disease is classified. The only thing I know for sure is that his platlets and white count are ok but his RBC is low (11.7 which isn’t too bad from what I understand). Regular blood tests also indicated some issues with B 12 and Folic acid and a gene abnormality. He received this diagnosis as the result of a bone marrow biopsy and we see the hemotologist next Wednesday.

I would appreciate any guidance from those of you that have gone before regarding questions to ask and research I should do. I’m having a hard time seeing the screen through the tears right now. I’m sure you’ve all been there.

Thanks
Chris

[Suzanne]

Chris, Hold on until you get all of the results of the bone marrow test when you meet with the hemotologist Wed.Sometimes it is not as scary as it seems at first. You might as well only learn about the type that your husband has becasue all the informaion can be overwhelming . Some types are not nearly as serious as others as far as life expectancy and living with the disease and a lot of progress has been made even in the high risk classifications in the past few years. Your husband is also young enough so that some more treatment options might be available. Be sure you get the classification of MDS and the “risk score”. Also you will want to know the any specific chromsome changes and whether there were an abnormal amount of blasts (immature white cells) in the marrow and/or blood) Don’t be totally shocked if the prognosis is a short time to live-the statistics are somewhat outdated and many of us -even with high risk types- have and are living a lot longer with good quality time. The next step is to get a consultation at a center of excellence for MDS. There is a list available on the main page of this site. They are usually hospitals where research is being done on the disease. Also email or call Aplastic Anemia & MDS International Foundation (800-747-2820) and ask for their free packet of infomation on MDS. They can also help you with recommendations of Centers of Excellence and Doctors with a lot of experience with MDS in your area. Good luck, have hope and get back to us with the details when you have them. People here dealing with a similiar diagnosis can give you the benefit of their experience.

[PaigeS]

Chris,

This is a wonderful place to come for support and guidance with this disease. I agree with Suzanne….try to wait until you see the dr. before reading too much. I made the mistake of researching MDS too soon and was a basket case before we even saw a dr. Lots of the info you read online is out dated too.

Hang in there!

[franm]

Hi Chris.

My husband who is 73 was diognoised with MDS 1 year ago. He has seen many different Oncologist and each said something different. He finally found one that he likes and so far she has been doing no treatment. She has him take a blood test every month and then see’s him a week after the BT. She said she is waiting until his white and red blood test go down more.

He had a BMB in August of last year and it showed 10% blast. She will do another BMB next month.

So, right now he is tired but that is all the signs he has.

We live in the Phoenix area and husband saw the Oncologist at the Mayo clinic. They have a clinical trials there but the doc didn’t think that Jim was a canadiate for the trial.

Good luck with your husband and if you need anymore info, please e-mail me at: fmaguill@cox.net.

Fran

[JulesH]

Chris,

I am 68 and almost 3 years ago I had my first diagnosis of CMML.

My WBC was about 20.0, my platelets were about 100 and my HGB was 9.2.

All they did was watch me for the first year and then they started treating me when my WBC climbed to 99.0 and my HGB was below 8.0 and platelets were well below 100.

I was receiving 2 units of blood per week for about 5 months.

They tried several different treatments until VIDAZA was available to me in September 2004.

I thought at one time I had just a few months left.

VIDAZA has stopped my need for tranfusions.(no transfusions in 1 1/2 years).

Currently my WBC hovers around 15.0, platelets 200 and HGB around 10.2.

I now feel confident that I could easily have 10 to 15 more years.

There is a lot of different treatments for this disease and a lot of reasons not to let the disease overwhelm you.

The median life expectancy for my disease (CMML) was 2 years when I was first diagnosed.

Keep your spirits up there are a lot of worse diseases that you could have.

Sincerely,

JulesH

[CAR]

Thank you all for the advise. The Doc says Alan has MDS-RA with no treatment (RBC is at 11.8) except blood tests every two months and B 12. However, the cytogenic test is not back yet and if it comes back with the chromosomes looking normal then it could be argued that this is not MDS at all but merely anemia related to low B12. That is what I’m hoping for. If it is MDS-RA for sure he is setting us up with City of Hope to look at the transplant since Alan is so young and in such good health. Anyway, the research we did ahead of time really was right on, albeit overwhelming, and we shocked him with our knowledge of the situation and understanding of treatment options. He is board certified in hemotology, oncology and internal medicine and we were right on top of everything thanks to this foundation and the other reasearch we did.

[Author]

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