Myelodysplasia Support Group

Hi
I was diagnosed almost 3 years ago, but was anemic for the past 10 years,I am at low risk but was just recently put on arenesp shots.I am fifty years old and live in the ny area,If you have any questions please feel free to ask.What is your first name?Do you have any symptoms other than the anemia?

Hi Karen, my name is Sharon. I'm almost 70 and live in central California not far from Yosemite NP. My first question is why are you now on arenesp shots? Is there a marker in your blood counts? (I was told that when my hemoglobin falls below 10, I will be getting shots, but I'm not sure if they are the same thing.) No other symptoms besides anemia, which is certainly enough for me. I'd like to know if the shots you're getting improve your counts and/or your energy level; also, how often do you get them?

Hi Sharon,
I, too, have myelodysplasia. From the doctors I have talked to and the online research I have done, many people have a slow progression of MDS and can do well for quite a long time before they start needing blood transfusions. There are new medications out there now that can help significantly. I did not have arenesp; I don't know if it was available when I first got sick or not. I did have Procrit shots, which helped to raise my hemoglobin and red blood cell counts, and definitely helped me have more energy. Not like normal, but better than without, for sure. How often you need whatever shots you get will probably depend on your response to the medication - every "body" is different. You could probably call your doctor's nurse to ask what kind of shots he is thinking of for you. The nurses usually have a bit more time than the docs, and mine have been a wonderful source of support.
Best of luck to you!

That is how mine was discovered. I was talked into giving blood here at the Medical Clinic where I work. I was turned down also. So that started my yr long blood test and every other test you can imagine, they knew I was anemic, but didnt know why, till finally I said enough, changed Drs he took one look at my blood test reports and sent me to a hemotolgist. Did the Bone Marrow Test the same day. Mine came back early stage also. I see him about every 4 to 6 wks unless I am really really tired and I give him a call and go up and get my blood drawn. Right now they are also testing me for Auto ammune disease. Just waiting on the results. I said I am just tired of being tired. How ever today is a good day and am not to bad.
You will find there are good days and then bad days.
Thanks Carol N

I thank you for responding. Procrit is the shot my Dr talks about. Apparently other procedures aren't going to happen in my case (they're for younger patients than me). But I have some hope that the disease will be slow. Actually, the benefit is that I've done some hard thinking about the years I have left, & what I want to do with them.

I'd like to hear some of the day-to-day effects from y'all. For example, I'm experiencing flattening & spooning of my fingernails. Anyone else? I've read that this is a byproduct of anemia. It's hard to tell what is a result of simply getting older & what is MDS-caused.

Thanks to the Aranesp shots, I have been slowly improving a little, but still have to deal being tired all of the time. All do others deal with the on going fatigue? Avoiding stress when possible is a help, but what else?

It's great to have so many people commenting! Dealing with fatigue is an ongoing thing, with it's ups and downs. I usually have most energy in the morning, less in the afternoon and least in the evening. So I try to schedule my activies according to the energy level I need: hardest things needing most energy in the morning, take a nap after lunch, then medium energy level activities, take a break before making dinner. This is gross, but I leave the dishes til morning because I'm just too tired. Evenings I spend with my daughter, watch TV, lie down and read. I have started knitting for M.D. Anderson's volunteer program, because I can do that in the evening while watching TV. I never used to be a couch potato, but .. I am just tired in the evenings.
I try to get in a walk during the morning or mid-afternoon to keep some muscle tone.
Yoga helps me have energy. I think the breathing techniques really help. With anemia, we don't have enough blood cells to carry oxygen to all of our body. The deep breathing, I think, can help to re-infuse our bodies with oxygen, which helps the energy levels.
Hope this helps!

As for your issue of fingernails changing, mine have been very dry and ridged, and some curl under, even with use of rubber gloves, etc. I have a friend who is a masseuse, and she says her fingernails are always great because her hands are covered with massage oils so much. So at night, right before going to sleep, I rub olive oil or almond oil into my fingernails, with attention to the cuticle and the area between the cuticle and first knuckle, as well. This is really helping.

I had such a good two days and now today I am just exhausted. Does anyone know if there is a particular diet that is helpful with this. I still am working full time, but it is getting hard.

It sounds to me like chronic fatigue is the BIGGIE here. Certainly that's the main difference in my own health. Fortunately, being a senior, I don't have to go out & earn a living any more. (I work for free now, lol.)

For the first time in my life, I have just begun hiring help for heavy chores, particularly gardening. Sometimes I can only keep up on things by doing my work 15 minutes at a time, rest by playing a computer game, work another 15 minutes, etc. I go to bed early, usually by 8 pm, & get up early but take my time. Because of that, my most productive time is usually late morning and early afternoon.

That's how I cope. I'm just worried about what it will be like when my blood counts fall. Anyone out there want to comment on future stages?

Birdmom. How low have your blood counts been. That is why I am just so confused, because my Dr keeps saying I shouldnt be this tired with my count being at 11. But I am. I have had more energy the last two days, but that is unusal.