Myelodysplasia Support Group

I know not what is usual in the States, but in the UK, most hospitals test your blood once per month, as Hemaglobin levels can drop dramatically. I understand that it is not necessary to have frequent Bone Marrow Biopsies, but the blood test will also determine what is happening to the platelet count, and white cell counts. All three are important, and can drop dramaticcaly in a fairly short period. Good luck, keep us in touch. We all can learn from each other.!

Thanks for you reply. After reading all the posts on this site, I have a better idea of questions I need to ask my doctor. I agree with you, as do others, that waiting 4 mths for lab work is too long. I will get another opinion and hope for a better understanding as to what my next step should be.

Good luck to you....I'll keep in touch

I go about every 3 weeks for lab. I am newly diagnosed with MDS. I am so tired it is hard to get thru the day,then other days its not to bad.

I was diagnosed 3 years ago, My white cells are fine, but my red cells are very low. Keep on top of it.If you are not happy with your doctor find one you are comfortable with. I saw 3 doctors until I got answers I felt good about. I also have children and a business.So it is very scarey.Keep your spirits up! Where do you live. I am near New York city, I go in every week for shots of arenecsp.Keep in touch we can all help each other.

It strikes me that there are only 4 or 5 of us who are active on DS. who have myelodysprasia.

I must agree with kareskids, that we can help each other. We should all add to this every time we go to see a Doctor, Haematologist or other medical specialist.

I have found the books and written work on this subject are not necessarily accurate in terms of lifespans, and Karenskids has been living with it for a long time. That gives me hope, that th 1.2 years the books gave me, from inception are probably far too pessimistic.

I dream that at my next appointmnet my counts will go up, and the same the time after that, and the following time too.

So to Karenskids, Cnemeti, Jeni4H, and anyone else with MDS, lets us form a bond and really keep each other informed. I send you all my good wishes as I know I have yours.

If only we could take to the streets with placards and banners, and hope to be able to put matters right.!!! Another dream!!

I agree with you Chris. Even though I am early stage. I am so tired. I can hardly function. I dont even know if that is normal?

Yes, I agree that we can help each other out and share our info after seeing a Dr. My counts were low for over 2 years before my MD sent me to a Hematologist, I always compalined of being tired but just fought it. Not sure if I've had this for that long or not and I'm not sure if my biopsy will detect that info...I will ask when I get my appt with MD Anderson. I do know that I will do anything to survive and I will keep a positive outlook on life. I am grateful that I found this site so I can share with you...and thanks for sharing with me!

I have to add this tidbit. I went to my Dr. because I had passed out several times within a few mths time...long story. That is when my Dr. noticed how long both counts (red & white) had been low. I did find out that the MDS has nothing to do with me fainting and I do still need to look into that. I kinda think it could have been a sign for me to demand attention from the Dr. We'll see, maybe not if I faint again!! I think, and believe, that some things happen to you for a reason and maybe it's to open your eyes to life around you. I don't like going thru life with blinders on, there is too much to see and do in this beautiful world.

Hi Jeni4H,
I was diagnosed with MDS (5q- syndrome) in 2003. Since then, I have had monthly blood tests. One of the problems with MDS is that it can sometimes change rather quickly into acute leukemia. If the blood tests show that change, your doctors can take action quickly. For that reason, I would recommend that you get in to MD Anderson as soon as you can. I do not say this to scare you, but to share information from my doctors to help you make good decisions.
When I was first diagnosed, I, too, was exhausted. I entered a clinical trial for a medication called Revlimid, and as my hemoglobin counts rose, my energy rose as well. The medication itself can cause fatigue, and I don't know if I will ever be at my previous energy levels, but it is significantly better than it was.
Last month, for the first time since the year 2000, my blood counts were all in the normal range, which I think is great cause for celebration!
There are other new medicines on the market now for MDS, and MDAnderson tends to be on the leading edge with rare cancers, with very knowledgeable doctors. I go to them in Orlando, and have received excellent, caring treatment.
If you google myelodysplasia, there are a number of excellent websites that can tell you more about this rare cancer. Try to choose those from reputable sources, such as Mayo Clinic, the MDS foundation, etc.
As for fatigue, working and raising children, I have been a single mom, with my own corporation, raising a daughter. I know how hard it is, I have been there. In my opinion, it is important for you to communicate your fatigue to your girls (and your husband, if you have one, and other family members as well) and enlist their assistance in the household chores on a regular basis. Teens are capable of being a huge help, and it is to their benefit to learn how to cook, clean, pay bills, mow the yard, do laundry, etc.,etc., as these are all things they will need to do once they "leave the nest." With my daughter, I have found that she feels much more competent as a person. Many of her friends are from homes where everything is done for them, and they cannot even warm up spaghetti in the microwave. My daughter is now proud of all of the things that she can do to help, and her level of compassion for others has increased through all of this, as well.
As I am single, and my daughter's father is not in the picture, we have also enlisted assistance from our neighbors, and they have been incredibly wonderful at helping us. Your church may have a program to help people with chronic illnesses, as well.
You might also consider attending a support group with the Leukemia and Lymphoma Society. They now include MDS in their list of diseases supported. They have a wealth of information, and also some financial assistance for low income patients.
I wish you the best of luck, and please keep us posted! Have courage, and hugs to you!

I have had Myelodysplasia for three years now and I am improving slightly. I still have my blood tested every month and receive a shot of aranesp as needed. I really think four months is too long to go between tests. The medicene does not work quickly and needs to build in your system. I started getting a shot every month and last year I received only three for the whole year!
I am very encouraged to see so many responses to this posting. I thought I was the only one with this problem. How can we stay in touch?

Welcome Dizzygal and Butter.

Lets just keep adding to this Journal, and see how many more we can get. The more information we share the better it is for all of us. I think 6 or 7 have contributed to this topic, but I hope more will do so. PerhAPS DOUG CAN HELP TO GALVANISE SOME MORE MDS SUFFERERS.

gOO