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Any advice??

Home forums Patient Message Board Any advice??

This topic contains 11 replies, has 1 voice, and was last updated by  Neil 14 years, 10 months ago.

Viewing 12 posts - 1 through 12 (of 12 total)
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  • #2891

    Sarah J.
    Member

    Hi! I’m new to this message posting site so I will tell you a little about me.

    In August of 2004, I was diagnosed with MDS [associated with isolated del(5q)] and Essential Thrombocythemia. I recently turned 24 and am a full time college student and a full time legal assistant at a small law firm. I will graduate from college in May of this year.

    I am trying to educate myself on both of these diseases. I have wonderful doctors who are very helpful, but I’d like to talk to other patients or families of patients so I can get an idea of what life is going to be like for me now.

    I haven’t met anyone with these diseases and apparently, my doctors haven’t dealt with someone my age who has both diseases. I’m a little scared and am searching for some advice. Anything would help, I’m sure. THANKS!

    #2892

    czaring
    Member

    Welcome Sarah. You may notice that a number of us have gone into our profile (see button above) and altered the signature area to include an abbreviated summary of who we are and why we’re here …. much as you did in the first paragraph of your posting. (In my case – it is my mother who was recently diagnosed with this – as I’ve indicated) That seems helpful and if you stick with these boards for a while – you’ll begin to understand why. As this forum seems to operate – you will be hearing from the ones who have volunteered to be the resident experts here. They know a lot and they’ve been dealing with this stuff for a while …. those that know much more than I do. I’m just learning too – but I DO know that your young and tender age will really work to your advantage. I know that you will feel as if you’ve found the right place when you stumbled across this board and registered yourself!!

    #2893

    czaring
    Member

    Sarah …. P.S. ….
    Until you hear from Neal or one of the other more experienced members … look at the list of Centers of Excellence here at the site. Knowing where you can go for the best possible care and protocols will be mentioned to you as important. That – and finding a doctor who HAS seen as much of this stuff as possible. There are not all that many of them – relatively speaking. Look over that list for the possibilities while you’re waiting for the other advise that is sure to come from the others at this site.

    Cindy Z

    #2894

    Donna
    Member

    Hi Sarah,
    Make sure that you’re seen by a specialist who deals specifically with MDS, there are many centers. I’m sure others on this panel will recommend certain ones.Do you know what your classification is? Being young Sarah will definitley work to your advantage. I’m sure you will get lots of responses to your post, there are a lot of people on this forum who are filled with information and will be able to help you. This forum is a
    amazing source of strength, knowledge and support. You have come to the right place.

    Take Care,
    Donna

    #2895

    Carl
    Member

    Sara J.,

    Sorry to hear that someone else has this disease, but I am glad you found this forum. It is an excellent place to learn more about the disease and treatments. I would recommend that you view the “web air” messages by going to the web address on the link below to get a overview of the doctors’ explaination of MDS.

    http://www.aplastic.org/webinar/

    Neil and others on this site can give you a ton of information about MDS, treatments and Centers of Excellence.

    Good luck and God Bless.

    #2896

    Bob P
    Member

    Hi Sarah J,
    I’m very sorry you have reason to find this site. The best advice you can get from anyone on here is to go to a center of excellence to get an experienced hemodoc who has treated many MDS patients. There is a list of them from all over the country at another page on this site. Most local hemo’s may see only a handful of MDS patients during their whole practice. The specialist in most cases will work along with your doctor.
    At the present time the benchmark cure for this disease is a full bone marrow transplant. A lot of trials and work with stem cell transplants are being done with good success and one day that might be the bench mark. The younger you are the better the results and the better you can tolerate a BMT. At 24 you should do very well. Only an expert can tell you that though.

    Bob….

    #2897

    shirlsgirl
    Member

    Hi Sarah,

    Welcome! I’m sorry about your diagnosis. You’ll find alot of information and tremendous support on this board. take care, Jody

    #2898

    alexandra7
    Participant

    Hi Sarah!!
    Well I’m 20 years old and I’m kind of in the same situation. This forum is great you’ll see you’ll always find someone to confort you when you feel sad or give you advice when you need one or share info about this “MDS”.
    Alexa

    #2899

    Neil
    Member

    Hi Sarah,
    Did the docs classify your MDS?
    There are a number of basics that every MDS patient should follow.
    Make certain you are seeing a hematologist that is experienced in treating MDS, particularly your MDS classification and in treating thrombocytopenia! This is a must. There are too many variations of the disease and an experienced doc is necessary.
    All MDS patients are different! We react differently to the disease and to treatments. What works for one may ar may not work for another.
    At your age, I would seriously consider a Stem Cell Transplant. There is a lot to consider with respect to a match and to what your long term prognosis actually is. This is a tough decision, but with a bit of time a logical decision can be reached.
    Thrombocytopenia can be elusive to treat. Some of us can have a low plt count (10,000) and not have any symptoms while others can have much higher counts and have bruising and bleeding. It also takes a bit of time to see where the platelet level will settle in. They can jump around a bit. The equipment used to measure them is accurate within 15,000 on counts between 50,000 and 500,000. It leaves something to be desired when counts are below 20,000. It usually takes a number of CBCs over time to see where they settle in and a reasonably consistant level is obtained. Unfortunately they tend to drift downward as time passes. There may be times when a very low count pops up that is not consistant with history. It can create a bit of panic with the patient and the lab personnel. They usually want to get transfusions under way. This is a time for calm. When this occurs my doc has a slide made and he does a manual count. They always turned out to be at my “normal level” which is 9,000-10,000.
    If transfusions (TX) do become necessary make certain they use irradiated/filtered blood for both packed red cells and platelets. It will prevent some downstream problems with a match and will prolong the time platelet TX will be effective. Platelets live around 5 days, maybe a little longer with some people. Unfortunately one cannot have an unlimited number of platelet TX. Eventually the body becomes refractory to them and they do not work. Using I/F platelets will prolong the time TX will be effective.
    At the moment there are no drugs that will build platelets long term. Prednisone helps for a short term and has some nasty side effects. Decitibine has helped a few patients as well as Vidaza.
    I started on Procrit to boost my red cells and found it was also helping my WBC and Platelets slifgtly. Am getting a shot every 14 days. At the 7 day point my platelets, RBC and WBC are higher than at the 14 day point when I get my nex shot. This is rare. It does not react this way with very many patients.
    If you included your e-mail address in your profile I’ll send some additional info that is much too long fot The Forum.

    #2900

    sarah
    Member

    Hi Sarah J,
    Welcome to forum. As you can tell my now , you are among friends. Please keep us updated. We are here for you!
    Sarah

    #2901

    Sarah J.
    Member

    I noticed someone asked which MDS I have, my doctors have said that it is the eighth type, MDS associated with isolated del(5q).

    Neil, my Essential Thrombocythemia causes my platelets to be the exact opposite of yours – I have way too many. At the highest count, my platelets where 2.6 million! For about three months now I have been taking Anagrelide to help reduce my platelets. I have a CBC weekly and my last count was around 700,000.

    For the MDS, I am scheduled to have a bone marrow biopsy every three to four months and I have the weekly CBC. In fact, I just had my second biopsy last Thursday.

    I have a doctor in my hometown who specializes in the ET and I have doctors at WVU who specialize in the ET and the MDS.

    #2902

    Neil
    Member

    Hi Sarah,
    Oops, I read it a thrombocytopenia. Sorry.
    I have been charting my WBC RBC HGB and platelets
    in an Excel spreadsheet. Then put them put them on a graph. Makes it easy to observe long term trends.
    Have your BMB results changed from the original? The every 3-4 months is quite frequent. If there are no changes you might wish to ask the doc to exrend the interval. Can get rid of some discomfort. Might be worth discussing with your docs.
    Once they saw my marrow was not changing very much they lengthened the interval. If my CBCs indicate something might be going on, my doc sets one up. Just a thought.
    Neil

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