MDS is a bone marrow failure disorder
MDS is a blood cancer
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Viewing 15 posts - 1 through 15 (of 28 total)
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  • in reply to: 52 years old MDS q5 deletion Anemia and RA #58182
    Kathleen Till
    Participant

    There is a really good MDS site on Facebook if you are on there. People share so much stuff on MDS.

    Fight Myolodysplasticsyndrom

    Think I have not spent it right but spell correctly and out in on Facebook.

    Kathy

    in reply to: Fevers, multiple transfusions #58155
    Kathleen Till
    Participant

    Can he not have a Stem Cell Transplant. I had one last Sep and I am 73.

    Kathleen Till
    Participant

    I had mine Sept 9th last year in Moffitt in Tampa Florida. I was in for 21 days, then had to find an apartment close to hospital for two months. If you live close, within 15 mins you can go home, otherwise apartment. I was five mins from hospital, which was great as sometimes you have to visit twice a day and at least once a day for over two weeks. It really depends on how much progress you make. I was exceptionally lucky that I did really well and doctor let me go back home after 62 days.Usual time is 90-100 days.
    I had a friend look after me during that time.
    I. Hospital my daughter stayed with me all the time in my room. They had a sofa bed for her which was very comfortable and they provided the sheets and blankets, she could not leave the hospital because of Covid and I could have no other visitors at all, not even my husband.
    The hospital will give you a booklet to read and it goes through everything you might need for your stay.
    You have to wash all your clothes after only wearing them for one day, that is the hardest to do, good to take a supply.
    The hospital I was in provided other things, like massages in your room, arts and crafts, music recitals and physical therapy.?
    You should have been given a lot of this information already. You can call LLS Lymphoma and Leukemia Society and they will give you a lot more info about everything and grants etc.
    Hope this helps. There are also some good groups that you could join on Facebook if you use it. I have two that I belong to and lots of advice given there.
    Kathy

    in reply to: chemo -vidaza injections #57809
    Kathleen Till
    Participant

    Have they given you a biopsy to see where you are blast wise.
    I had high level MDS and had to have a Bone Marrow transplant, which I had at Moffitt in Tampa on the 9th September.
    Doing really well and last biopsy showed no signs of MDS.
    I am 74 in June.
    Kathy

    in reply to: Allogenic Stem Cell Transplant #57784
    Kathleen Till
    Participant

    I had transplant on Sept 9th last year. Just over 6 months out now. Had slight GVHD in digestive system but did not last. They gave me some medicine and it cleared up. Most people get some stomach problems at first, I think mainly because the chemo changes the taste of food. I did not want to eat but as soon as they gave me the medicine it sorted it out.
    Have not had any other problems except got fungal pneumonia but believe I had this when I went in for transplant due to the fact that I love gardening and my immune system was too low before to cope with it, was on a pill for three months and now cleared up.
    I am happy with my progress but one never knows from day to day what might happen, but none of us know anyway so have transplant, keep exceptionally positive and take it day by day. Everyone gets upset stomachs and some sickness during treatment but do not let this get you down, it goes away.
    If you do not have transplant and carry on with your treatment it will never go into full remission. I had MDS high level with Trisomy 8 chromosome.
    I am 73 and was grateful to be a candidate for transplant.
    We are all different.
    Good Luck with your decision. Reading all the bad things before transplant is not always a good idea. I left that to my daughter to do the worrying for me.
    She stayed in my room for three weeks because of Covid I could not have visitors. Having her there all the time was great. She gave up a lot to be with me, but she was the best medicine ever.
    Sorry this is long winded. They let me come back home on day 62 which was great as usually you have to stay very close to hospital for 90-100 days. I am 45 minutes from Moffitt now. ❤️❤️❤️

    in reply to: Almost 42 a little over a year since diagnosis #57173
    Kathleen Till
    Participant

    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.

    Kathy

    in reply to: FISH RESULTS #56397
    Kathleen Till
    Participant

    That is a question for your doctor, I think.

    in reply to: How do I respond to posts that I read #56386
    Kathleen Till
    Participant

    Press the topic link and you can reply there.

    in reply to: Help #56379
    Kathleen Till
    Participant

    BMT are done in Florida at Moffitt has one 60 days ago now.

    Where are you located and how old is mum and is she fairly physically fit?

    Not sure what you meant by in here though.

    in reply to: Medicare part d plan #55933
    Kathleen Till
    Participant

    I had Vidaza for five months and mine was covered by Medicare.

    Just has Transplant and Medicare covered that too.

    Have a grant for prescriptions and that pays the cost of most of my Medicare co-pays. Also pays for my monthly Medicare payments, monthly prescription for RX and my supplemental.
    The above I believe is only offered when you get a transplant.
    At the moment we are only living in Social Security so we qualified for grants. You can still own a house and get these grants, they only take SS into account.

    Hope this helps.

    Kathy

    in reply to: Common Colds in Low and Medium Risk MDS People. #55827
    Kathleen Till
    Participant

    I was having chemo for high MDS and caught a cold. It lasted 2 weeks and I
    Got no Ill affects from it. I even managed to fit my chemo in but not everyday. Had no temperature.

    I am now 49 days post Bone Marrow Transplant and doing quite well.

    Kathy .

    in reply to: Common Colds in Low and Medium Risk MDS People. #55828
    Kathleen Till
    Participant

    I was having chemo for high MDS and caught a cold. It lasted 2 weeks and I
    Got no Ill affects from it. I even managed to fit my chemo in but not everyday. Had no temperature.

    I am now 49 days post Bone Marrow Transplant and doing quite well.

    Kathy .

    in reply to: shortness of breath #55296
    Kathleen Till
    Participant

    I just had Bone Marrow Transplant at
    Moffitt Cancer Centre in Tampa. It is a long haul to get better but taking one day at a time. Certainly lots of hurdles to get over, but this is possibly the only cure for MDS.

    Transplant was in September 8th so very early days yet.

    I am 73.

    Kathy

    in reply to: shortness of breath #55297
    Kathleen Till
    Participant

    I just had Bone Marrow Transplant at
    Moffitt Cancer Centre in Tampa. It is a long haul to get better but taking one day at a time. Certainly lots of hurdles to get over, but this is possibly the only cure for MDS.

    Transplant was in September 8th so very early days yet.

    I am 73.

    Kathy

    in reply to: MDS High Risk #55276
    Kathleen Till
    Participant

    Sue,
    Had no idea you had gone through all of this for many years.

    Somehow I do not get notified when posts come up. My daughter told me you had been on.

    Sent email today.

    Hope you are keeping well.

    Kathy

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