MDS diagnosed Sept 09

[Mary in Alabama]

My husband Jim will be 88 next month(Nov.09) and was recently diagnosed with MDS. The doctor is doing nothing for him at this time. We go back to the doctor in December and he will do bloodwork again. His hg is 12 so I assume that is the reason for no treatment now. I have been reading on this website and have learned a lot but now realize that I have SO much more to learn. Should I talk to the doctor about some treatment now or wait until his Hg gets lower? After reading the post that lots of you have shared, I will call and get copy of his bloodwork and BMB so that I can see all his numbers. If any of you have advise, please, I welcome it ALL.
Thanks
Mary in Alabama

[5Q-spray]

Hi Mary! Sorry to hear that your husband has MDS I was diagnosed June 09 with MDS 5Q-. I am 38 yrs old and live in Tennessee but go to UAB for treatment/doctor follow ups. I am not on any treatment at this time because my levels are not low enough yet. I have an enlarged spleen and I have been having problems with that not my MDS. I am to go for a CT tomorrow so I hope they can get to the bottom of my pain. I ck the forum often so feel free to ask ?'s if you have any. Best of Luck!

[Neil Cuadra]

Mary,

I'm glad to hear that you want to learn more to help your husband. Knowing his blood counts is a good start, as is watching them over time to notice any changes.

Patients typically can't understand all the medical language in bone marrow biopsy reports (although Marrowforums members can sometimes help each other decipher them), but at a minimum they can be the basis of a conversation with the doctor, who can explain what they mean for the patient's care.

If you have any questions at all, go ahead and ask the doctor. Helping you and your husband understand what's going on is part of the service doctors should provide.

Is your husband having symptoms of low red cells, such as unusual fatigue, headaches, or shortness of breath, or the unusual bruising or bleeding that low platelets can cause? I say "unusual" because he knows what's normal for him.

With counts that aren't dangerously low, an absence of symptoms is likely to make "wait and watch" the best strategy, so it doesn't surprise me that his doctor isn't recommending instant treatment. Even if your husband's red cell count and hemoglobin get lower, a red blood transfusion might be all that's necessary. The aggressive therapy for MDS that you read about in some of the threads here is not what doctors use for an 88-year-old for whom they would likely do more harm than good.

[Mary in Alabama]

Neil,
Thanks for you answer. I will get the paperwork and bloodwork this week and then I can at least know what some of the numbers mean. He is fatigued and has a lot of bruising. He sleeps 10 hours a night and then naps in his chair all day. He worked full time until last year. He also has a problem with his Equilibrium is off and he has to hold to me to walk easier. Maybe that is just from weakness.
I will post again when I know his numbers.
Thanks again. I feel a little better.
Mary

[Mary in Alabama]

5Q-spray,

Thanks for your note. You are so much younger that my husband. Hopefully you can have BMT. Good luck to you and UAB is the best.

Thanks again.
Mary

[Dick S]

Originally Posted by Mary in Alabama

Neil, He also has a problem with his Equilibrium is off and he has to hold to me to walk easier. Maybe that is just from weakness.
I will post again when I know his numbers.
Thanks again. I feel a little better.
Mary

Mary, good to hear from you.
It is probably not his equilibrium, it's probably from his weakness. I'm 75 (will be on the 24th) and I am on a "wait and watch" status right now too beacuse my numbers aren't low enough yet. I wobble around the house all the time from the weakness factor, most times my legs feel like Gummy Bears and my arms feel like they are made of Jello. Don't know what I would do without my daily naps.......it's normal. A cane helps me maybe you should get one for your guy. Tell him to hang in there and we will all pray for him.
P.S. I just had bloodwork today and my numbers actually came up a slight bit, so it's "wait and watch" time again.
Good luck and keep us posted.

[Mary in Alabama]

Dick S,
Thanks for you reply. He will not say very much about his condition. I sort of thought the weakness could be the problem. It helps to hear someone else say it too. I will pray for you too. That's all I can do, but that is probably the BEST thing.
Mary In Alabama