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Almost 42 a little over a year since diagnosis

Home Demo forums Patient Message Board Almost 42 a little over a year since diagnosis

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    Shaun Fuller

    I am creeping up on my 42nd birthday, which is fairly young for an MDS diagnosis. I’ve been sitting on watch and wait for a little over a year now. Hgb is sitting at just under 10, wbc usually just under 5. Platelets are another issue, hovering around 20 which is dangerously low. My oncologist has recently put me on promacta to see if it will raise my platelet counts. So far, no dice. I know that promacta is generally used for itp and have read that it is not for mds. I’ve also read some studies that show it can be helpful in raising platelet counts in people with low risk mds which is where I’m currently at. I still work 4 days a week and am able to carry on a fairly “normal” life. I have met with a few drs at Roswell in Buffalo to discuss treatment options, including stem cell transplant. At this point, still on watch and wait. Getting weekly blood draws to monitor counts while taking promacta. I havent really noticed any side effects from it yet either so I guess thats good. Anyone else have any experience with promacta for mds?

    Kathleen Till

    Ask your doctor about, I think it is called Venclexta by Genentec. It is not approved for MDS as far as I know but my doctor put me on this before my transplant last September because my blasts were too high and they wanted them lower. I took them for 14 days and they put me in remission and my platelets went up from 34,000 to 505,000 far too high I know but I was going in for transplant and knew during chemo they would come down again.

    This is a long shot I know but worth asking about. Probably not for you but who knows. During my five months of chemo before transplant my platelets got as low as 13,000 and I never had any platelet transfusion or blood transfusions.

    They do carry a high deductible but the company will pay for them if doctor puts in order directly to them.

    Certain people with other blood cancers are on these for months.

    By the way I am 73. 42 is far too young but kids have been diagnosed as young as 9.

    Good Luck with your treatments.

    Hope this makes sense.


    Jean Ira

    My husband, 70, was diagnosed with intermediate MDS in February 2020 and has been on watch and wait since that time. He feels well and leads a normal life. He has labs and an appointment every 4 – 6 weeks. He started on Promatca in June 2021 because his platelets had been dropping. It is thought that Promatca has kept his platelets at least stable. (17 in June; 22 this week; HGB 10.5; WBC 2.68: generally closer to 1.5) The only side effect he has had is some coughing.


    Shaun – I’m sorry that you’ve joined the club at such a young age. I’m 50 and was diagnosed in October ’21. I’m on a watch and wait, but it’s being suggested that I would bypass treatment when my numbers start dropping and instead look to the stem cell transplant. I have heard several times recently that Dr’s are moving more towards aggressive streatment (i.e. SCT) in young, relatively healthy individuals before the disease has an opportunity to progress. I’m curious to hear if you’ve been told the same thing? For what it’s worth, I’m being treated at a COE.

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