Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hi....I had some blood work done a few months ago for no particular reason and have low counts and they say: "dangerously" low white cell count.
I'm 64 and live in New Zealand which creates some problems in that the system here does not support any of the MDS medication advances, meaning that my private medical insurance won't cover it.
I have no symptoms.....maybe slightly run down. I'm not exactly forming a bucket list, but want to do the things I need to do as long as I am symptom free. This includes some travel and seeng my new (14 month) grandson in the USA.
I'm having trouble finding practical information. For instance, how long do people remain symptom free? What is likely to come next? Tiredness and lack of energy? Does it sneak up on you or does it arrive all at one time?
So, I guess my goal is to do as much as I can as long as I can. Any practical suggestions would be appreciated.
Regards
Jon
Auckland, New Zealand
jjunge@xtra.c.nz
I'm 64 and live in New Zealand which creates some problems in that the system here does not support any of the MDS medication advances, meaning that my private medical insurance won't cover it.
I have no symptoms.....maybe slightly run down. I'm not exactly forming a bucket list, but want to do the things I need to do as long as I am symptom free. This includes some travel and seeng my new (14 month) grandson in the USA.
I'm having trouble finding practical information. For instance, how long do people remain symptom free? What is likely to come next? Tiredness and lack of energy? Does it sneak up on you or does it arrive all at one time?
So, I guess my goal is to do as much as I can as long as I can. Any practical suggestions would be appreciated.
Regards
Jon
Auckland, New Zealand
jjunge@xtra.c.nz
Welcome to the club none of us ever wanted to join, and didn't even know about. I had never even heard of MDS, until August 2008, when I had a blood test prior to a planned vascular clean out in my legs. Never had the vascular clean out, and this is now strongly opposed by my Haemo.
Most of the time I feel fine. I get odd viral problems which last a long time, and other minor problems, and had a ghastly time in Dubai last year when a viral infection went to my ear, and I had an emergency mastoid operation.
But most of the time I am sympton free, I feel there is nothing wrong with me, but the Haemos do not agree.
So try not to worry, it is not always as bad as it seems.
Many of us write daily on NEW MEMBER that now has 388 postings. Read some of them, and please post on there, as you will get a lot of support, from USA, UK, & Australia.
Look forward to hearing from you, and very very good luck.
Christopher.
Welcome to the club. I am 61 and have MDS/CMML (leukemia). I was diagnosed a year ago this month. You will find out information as time goes on. You say you are coming to the US to visit your grandson....what about getting a 2nd opinion while you are over here? The US has wonderful clinical trials that possibly you could get involved with. It's worth a try. Are you on any medication now? I am on a clinical trial for oral Vidaza but this does not mean that this is the drug for all MDS/Leukemia patients. If you search the internet, you can find information on MDS but do not listen to the survival rates as most of these are so outdated. I was so depressed after I went to the internet. There are so many new advancements toward treating MDS....some work and some don't. That's why it's so important to get a 2nd opinion from somewhere that specializes in MDS treatment. Where will you be visiting when you come to the US? I travel 1,000 miles to go to Houston, Tx. (MD Anderson) for my treatment because I feel they are so competent. You are not in this alone. We here try to help and encourage each other, so you are in the right place.
Good luck to you and keep in touch.
Chris, it's always great to hear from you and all the others.
Hugss to all,
Susan
I'll ask about studies and other options and will consider visiting a specialist in the USA for a second opinion.
I'll learn more later, but it seems like the only thing that changes in the near term for me is what happens when I get the flu or a fever for some reason. They are telling me that if that happens, I'm to check into a hospital.
This is all new and I'm taking it in.
Thanks
Jon