mds lifestyle

[tracy]

My father, age 66, has just been diagnosed w/ this disease. The doctor is calling it “moderate”–his blood counts are low in all areas & he has 8% blasts. He has also just started taking Procrit. This forum has been so helpful in providing info, but there are some issues I am really unclear about.

MY Dad has always been extremely active–biking, running, golfing, etc. He still feels very good right now except for some shortness of breath. His doctor told him to continue doing whatever he felt like, but we have also read that people w/ low blood counts should not get heart rate too high. Can anyone give any insight into this?
Also, does the disease ever ‘plateau”—is there a chance that some of the therapies & drugs we have been reading about can actually slow the progression of the disease? I would like to hear what daily life is like for someone whose disease is at the same stage as my dad.

Two weeks ago I had never heard of this disease & we are trying to learn as much as possible–if anyone can direct us to some good sources I would appreciate it!! We do have an appt at the Indy Center in a few weeks.

Thanks so much!

[lindajo]

The disease behaves differently for everyone. Some progress rapidly and some do plateau and do fairly well for a long period of time. I have only had supportive care, antibiotics and transfusions for 15 years.

The patients that seem to do the best also seem to be the ones with a positive attitude and the williness to seek outside the traditional medical community to alternative therapies. I feel that vitamin supplements have helped me a great deal. So has reducing my stress and activity level.

Exercise is still extremely important. I use yoga and aquasize to keep limber and active. Your dad should do what he can as much as he can. Golfing will probably make him feel better than something as physically demanding as biking or running.

Look up the Aplastic Anemia and Myelodysplastic Foundation at http://www.aamds.org They will send you tons of great information. Sometimes this disease will be much harder on you than the patient. Take good care of yourself too. You can’t be of any help if all you do is get stressed out and worry yourself. Take care. Lindajo

[SusanJ]

Tracy,

Your situation sounds almost exactly like mine. My 73-year-old dad was diagnosed about 2 weeks ago with this disease that we had never heard of before. I nearly lost my mind with worry at first but have come to a certain peace about it now. This forum has helped to calm my nerves a lot. Everyone has been so helpful and nice. My dad, like yours, has always been very active and is still working every day. He has always walked at least 3 miles every day until shortness of breath kicked in. He also has congestive heart failure, and I’m not sure how these 2 conditions will work for/against each other. He has started to try to walk again a little each day. He has to stop to rest now though, he didn’t before. This has been so hard to take. It helps to know that we will walk this walk together. You are not alone as I learned from this forum. I will pray for you and your dad daily. God bless you.

Susan

[Suzanne]

Even the effects of low counts are different for different people. I did not lose as much energy level as many do and I stayed active walking almost every day over 2 1/2 miles. Even when I was in the hospital for chemo I walked a mile most days in the halls(they had the distance measured for us and encouraged the activity excpt when they were acivily administering chemo or tranfusing and we had to stay in our room. My Docs say the exercise helped me. always told me to do as much as I was comfortable doing-inother words “listen to your body”(and maybe push it just a little)Since I never Plateaued for more then a few weeks I can’t answer about that. My docs did work hard to give me the best quality of life possible at each step of the disease at my request.

[tracy]

Thanks Linda, Susan & Suzanne,

It really helps to hear your perspectives on this. Right now I seem to be gathering the best info on this forum & I really appreciate the support everyone shows each other. It does help to know that we are not alone!! Best wishes to all of you!!

[Neil]

Hi Tracy,
You have probably read that MDS impacts patients differently. As a result it is tough to compare most patients with one another, particularly those with RA or RARS with those who have RAEB.
But his doc provided good advice. As long as he feels good he should continue with his normal activity level.
Procrit or Aranesp can provide some with a boost to red cells that make life a lot more enjoyable.
White cells can get pretty low and one can still deal with infections.
One point you made in your first messgage addressed blasts. You may wish to ask how they are going to deal with them. He does not want to have his blast level increase and he certainly does not want blasts in his peripheral blood. If they stay at 8% and he continues to feel well he can have a pretty good prognosis. But it is important to track his counts and to make sure they do not begin a downward trend without any plan to deal with what is causing the change.
Lots to consider. A lot can be done, but if he continues to feel well there isn’t much point in starting a protocol that may make him feel worse.
New patients have much to consider. Getting up to sprrd on MDS helps, but emotional swings over the first year can be hard to deal with. I went from terror at the time of my diagnosis to a calm state after a few months. In my case Procrit resolved the fatigue issues, but there is that underlying thought about when my symptoms are going to become worse.
Leading a healthy lifestyle helps. Staying fit ( outside of the MDS issues ) can’t hurt. I follow a low carb, low fat diet. Take a multivitamin, B complex and vitamin C. Also get in as much exercise as I can tolerate.
Seems to work in my case.
His doc should be filled in on any vitamins, supplements etc he might be considering before starting on them.
He should also be examined by his internist on a regular basis to make sure the rest of his body is functioning normally. Over time MDS can impact various organs. It is important that his basic health be monitored so if there is a potential problem it can be addressed early.

[tracy]

Hi Neil–Thank you so much for your expertise. You provide so much info on this forum & it is so helpful to those of us who are trying to understand.

Tracy

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