This disease is driving me crazy.

[Dick S]

Got the call from the doctor (Oncologist/Hema) today that my BMB result shows I have RCMD Intermediate with less than 5% blast. Chromosomes may take another week to get results. He says that unless chromosomes shows worst case, they are not recommending any medication at this time and we have to monitor it for another 4 months. He also can't explain why I am exhausted all the time and sometimes my butt is downright dragging. Anybody else have, or had, the fatigue I am talking about in the early stages?????? I, for one, am thoroughly disgusted with this disease. Maybe I will feel better once we get to the bottom of this.

[Neil Cuadra]

Originally Posted by Dick S

I, for one, am thoroughly disgusted with this disease.

You're not going to get an argument from the rest of us about that, Dick. At least you have a specific diagnosis now.

Every treatment has risks, but your fatigue is reducing your quality of life. The conservative "wait and watch" approach has pros and cons, and your doctor should be discussing with you just what those are for each choice of treatment, once you get your cytogenetic results.

How often are your CBCs checked, what are they now, and have they changed much since you introduced yourself in January?

[Zoe's Life]

Dick,

For a man at 10.8 (if that is still where you are), would, I think, be enough to drain some energy. I am in the mid to high 10's and it affects me. Although I think I am learning to manage it better, some days I still drag. I try to take breaks when I need them during the day, even if for only a few minutes.

I agree with Neil. If it is affecting your life, looking at treatments might be an option.

Zoe

[Birgitta-A]

Hi Dick,
Have you asked your doctor about your serumEPO ? If it is less than 500 you could perhaps try Aranesp or a similar drug for your HGB.
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006 with HGB 70, transfusion dependent from dx, serumEPO more than 800 at dx so I never tried Aranesp or similar drugs

[Dick S]

Originally Posted by Neil Cuadra

You're not going to get an argument from the rest of us about that, Dick. At least you have a specific diagnosis now.

Every treatment has risks, but your fatigue is reducing your quality of life. The conservative "wait and watch" approach has pros and cons, and your doctor should be discussing with you just what those are for each choice of treatment, once you get your cytogenetic results.

How often are your CBCs checked, what are they now, and have they changed much since you introduced yourself in January?

I don't know much, but I am learning.
I get a CBC every four months. The last one 4/22/08 was:

WBC...3.6
RBC....3.6
HGB....10.9
Hematocrit...35.9%
RDW-SD...54.2 fL
Bands...13%
Monocytes...29%
Neut Absolute CT....88 K/uL
Mono Absolute CT...1.12 K/uL
And some other abbreviations I don't understand.

He makes comments about eventually Procrit and Revlimid.

[Birgitta-A]

Hi Dick,
The results for WBC and HGB are low but nothing to worry about. How are your platelets (thrombocytes) - you know low platelets can make you bleed.

When your doctor talks about Procrit he means a drug that stimulates the RBC:s (like Aranesp) - that kind of drugs give the best results in patients with a serumEPO less than 500. You should ask for the result of that test.

Then you should ask about chromosome defects – 75 % of patients with loss of a small part of chromosome 5 respond well to Revlimid.

About Revlimid (lenalidomid)
”Recently, researchers have discovered that some people with MDS respond very well to a drug called lenalidomide. Three-quarters of patients whose MDS is characterized by the loss of a small part of Chromosome 5 need fewer blood transfusions after being given lenalidomide but only a quarter of people without this chromosomal defect respond to the drug.

Unfortunately, most patients with MDS do not have this chromosome abnormality and there is no way to predict which of these patients are likely to respond to lenalidomide. Lenalidomide is a toxic drug that damages white blood cells and platelets, so it is important not to give it to people who might not benefit.

In this study, the researchers have used gene expression profiling (a technique that catalogs all the genes expressed by a cell) to try to develop a way of predicting who will respond to lenalidomide...

...The erythroid specificity of the lenalidomide response signature is consistent with the biology of the 5q− syndrome in MDS. Patients with the 5q− syndrome have a severe anemia, a normal or elevated platelet count, and a relatively preserved neutrophil count.

The gene or genes on Chromosome 5q that block erythroid differentiation have not been identified. Our gene expression data indicate that lenalidomide–responsive MDS patients lacking 5q deletions have a defect in erythroid differentiation analogous to the ineffective erythropoiesis in patients with 5q deletions, indicating a possible commonality in the molecular basis of MDS in patients who respond to lenalidomide...”

http://medicine.plosjournals.org/per...l.pmed.0050035
Good luck with your learning
Birgitta-A

[Zoe's Life]

Dick,

I know they would not let me start Aranesp until my hgb was in the 9's. Now they keep it in the 10's with Aranesp. Actually, for several months in the beginning, I actually made it to the 11's. I function in the 10's, but I am slower, particularly the lower I go. Regs have recently been changed (like within last one to two years). That may be why they are holding off.

Zoe

[Dick S]

Thank you all for your replies, I feel somewhat better now and maybe I am not the only one feeling this way. I have to admit there are some days that are better than others. It certainly is a very baffling disease and the number of things you have to monitor is mindboggling. Men, as you know, are not very patient, but I guess the "waiting" is sometimes better than the "cure" from what I have heard.

[Joan]

Dick;

Just reviewed your comments and some of the replies. My husband has had MDS_RCMD for a couple of years. His last hgb was 9.6 and we are happy when he stays in the 9.s He is back on aranesp. Zoe was right that if you are on medicare they keep changing guidelines for EPOs for MDS patients. Also, since normal HGB is different for men and women how high or low the HGB has to be to get EPOs differs.

Don is frequently tired, some days worse than others. But he has adjusted to a new "normal". Since he is retired, he can do as much or as little as he feels like.

It is a crazy illness and one just has to go with the flow.

Good luck.

Joan

[Dick S]

Thanks Joan your comments and thoughts a very comforting. I too am retired, so thank God I don't have to try to keep pace with the world today. Some days, it would be nice though to play a round of golf and be able to just finish it, instead of barely being able to drag myself out of bed and doing a simple task of making the coffee. On a bad day, it's an effort to just shave and shower. My frau, Heide (bless her heart), does most of the work and gardening around here and tries her best to give me support and understanding. The one job I will hold onto 'til the ending is doing the cooking for the two of us, which is my passion and passtime.

I think having a forum, such as this, is so helpful, just to know that there are are others out there, like Don, going through some of the same things I am and I am not alone. God bless you all.