Strange Diagnosis

[stocker1]

I have been diagnosed with MDS for over a year but my blood counts have stayed pretty stable going down just slightly.Has any one else have this ?

[Zoe]

My counts have been stable, though once my reds dipped into the 9’s I started Aranesp. For a year now they have been just below normal. I am happy with that. My whites and platelets are OK. I was diagnosed in November 2006.

Zoe

[Neil]

Hi George,
Quite a few of us have your experience.
My counts went down for several years, leveled off for a few years, went down a bit more til I started on Procrit then Aranesp. Then held for about 5 more years.
There is a lot more for you to reveal before any of us can really share experiences.
Age, class of MDS, any treatments, abnormal chromosomes,any blasts in the marrow any in the peripheral blood, any transfusions?
Take a look through some of the older postings. Lots to read about.
You will note the change in many of the messages since the approval of Vidaza, Dacogen and Revlamid.
You will also note there is a huge variation in risk between those with RA, RARS and those with RAEB. RCMD and CMML will have both high and low risk patients.
One thing you will find is none of us are alike. We all respond differently to the disease and to treatments. What works for one may or may not work for another.
A few years ago you would find patients who went for many years on a transfusion every other week. Since the approval of Vidaza, Dacogen and Revlamid some patients have found they do not need transfusions as frequently for maybe a year or two.
AN experienced hematologist is really necessary. At one time it was difficult to find a doc with much experience. Since more and more of us have MDS the experience level had gone up. Eleven years ago my doc had treated a few patients but I was the only active one he had for a few years. Now there are about 7-8 and 2 have passed away.
Lots to learn and lots to think about.
Also, keep in touch with your internist! You want to make certain your MDS does now occupy all of your time. I also have type 2 diabetes and have been dealing with treatment for head and neck cancer for the last 4 months. You must keep track of the rest of your health while dealing with your MDS. A year ago I felt that after 10 years of MDS I could handle anything. After 4 months of going through surgery, radiation, chemo, throat therapy and physical therapy, I don’t feel so invinceble.
Make certain you are getting the best possible care, have a great support team with friends and family, and educate yourself on your version of MDS. You will find it is much easier to deal with it if you have a good grasp of the disease and what you can expect downstream. Lots you might be able to do to make that trip downstream more comfortable and slower with a good understanding of what has happened to you, is happening to you and will likely happen in the future.
Remember the progress over the last 2-3 years has been significant. Hopefully it is just the beginning of a possible better future for MDS patients!

[fotis]

My mother diagnosed with very low whites nearly 2 years ago(May 2006, 2.3) and she is doing fine. She has MSD-RCMD and all 3 lines are above min range. No medication till now, just supportive care and visits to the doctor every 3 months. We are more then happy with the results.

[Author]

Posts