MDS diagnosed Feb 2008

[bjbrew]

I just discovered this site. Please bear with me as I struggle to do this properly. I was diagnosed with MDS RAEB-1 two years ago. At time of diagnosis HGB was 8.0, with all other counts being okay. I began Vidaza treatments supplemented with blood transfusions six consecutive months. After 9 days of Vidaza, oncologist stopped treatment stating that I was not tolerating. He said I would be transfusion dependent for the remainder of my life. I am still here and have not had a transfusion in the last year. HGB levels vary from 9.0 to 12.4. I will be getting a second opinion in 10 days. I suffer from shortness of breath, extreme nausea and general feeling of utter exhaustion by noon each day. Another horrible symptom is insomnia. My current hematologist says unless my HGB falls below 10, I should have no symptoms. Any other cause of symptoms has been ruled out by a large number of specialists. My question to you dear people out there is this: Do you experience symptoms of MDS as I mentioned when all counts seem to be acceptable to your doc? I am so frustrated and miserable. The worst part is being told I "should not feel the way I do." Please, can anyone shed some light on my situation?

[Gene_In_Va]

Hi BJBREW,

Welome to this forum. I am sorry to hear of your condition. One of the major common threads for all of the members here that I have corresponded with is the fatigue we all feel either between transfusions or without treatment. Another is that our "conditions" differ so much from one to another. I gues it depends on what chromosomes are involved or if we have other things wrong along with our bone marrow conditions.

You don't say what part of the world you live in so I can't be to specific but there are many "Centers of Excellence" that specialize in bone marrow failure diseases. Here is a link to a listing of them on the MDS-foundation.org web page: http://mds-foundation.org/mds-centers-excellence.htm.

Also there is a good article on the mds-foundation.org's home page called "a patient perspective" on the right-hand side that may offer you some help.

So, this is a great place to get ideas from others and support. This is a tuff sickness to deal with. I too, hate it when someone says " You don't look sick..." Hang in there, you're not alone. There are several mediacations that can help as well.

Maybe by searching thru the various threads on this forum you can get a better handle on the situation. Knowledge is power in fighting this disease and helps each of us be our own best advocate.

I am glad you found this forum. Hope it helps some.

[Dick S]

Originally Posted by bjbrew

I suffer from shortness of breath, extreme nausea and general feeling of utter exhaustion by noon each day. Another horrible symptom is insomnia. My current hematologist says unless my HGB falls below 10, I should have no symptoms. Any other cause of symptoms has been ruled out by a large number of specialists. My question to you dear people out there is this: Do you experience symptoms of MDS as I mentioned when all counts seem to be acceptable to your doc? I am so frustrated and miserable. The worst part is being told I "should not feel the way I do." Please, can anyone shed some light on my situation?

You just told my story to a T. My counts are very similar to yours. WBC-3.0, RBC-3.1, HGB-10.1, Dct-31.5, Blast < 5%. Yet my PP and Hema/Onc doctors both repeatidly say "but you shouldn't be that tired all the time, you shouldn't have shortness of breath, you shouldn't be that nauseous, you shouldn't be gagging on your morning coffee, you shouldn't be showing these signs and feel the way you do". All I can say is "crap, you ain't me". They've ruled out everything else by a number of specialist, even depression. All I get is "watch and wait 'til your symptoms get worse". How bad do they want them to get before I scream!
It sure isn't fun having this disease when most day your quality of life just sucks.
All I can say is "hang in there", I do.

[Birgitta-A]

Hi bjbrew,
Many of the symptoms in MDS (and other malignant diseases) are caused by cytokines http://en.wikipedia.org/wiki/Cytokine

There are cytokines that are good for us like GCSF (Neupogen) and other that will make us feel ill. They can cause all kinds of so called constitutional symptoms like fever, fatigue, weight loss and night sweats.

Here is some info about cytokine storm just to show you what symptoms the cytokines can give us. Remember that you don’t have a cytokine storm. I only want to tell you that your symptoms are common among patients with diseases like MDS – I can hardly believe that there are doctors who don’t know that.
http://en.wikipedia.org/wiki/Cytokine_storm
Kind regards
Birgitta-A