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Viewing 13 posts - 1 through 13 (of 13 total)
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  • in reply to: Choosing no meds; only transfusions #58285
    Jack Allen
    Participant

    I truly believe that the best medicine is a positive attitude.
    I always think of something I really want to do tomorrow.

    in reply to: How to increase neutrophils #58283
    Jack Allen
    Participant

    Hi Paula,

    I was on Revlimid 10mg for almost 2 years and it worked very well for about 18 months.
    My neuts also went below 0.5 but I was given NeuLasta, one needle/month and my neuts stayed well above 1.0.
    I have since seen some notes about side effects but I never had any that I know of, and hey in our world everything can have severe side effects

    in reply to: How to increase neutrophils #58284
    Jack Allen
    Participant

    Hi Paula,

    I was on Revlimid 10mg for almost 2 years and it worked very well for about 18 months.
    My neuts also went below 0.5 but I was given NeuLasta, one needle/month and my neuts stayed well above 1.0.
    I have since seen some notes about side effects but I never had any that I know of, and hey in our world everything can have severe side effects

    in reply to: Choosing no meds; only transfusions #58270
    Jack Allen
    Participant

    Hi Mary,

    I have tried most if not all of the drugs associated with red cell MDS.
    Almost all of them had little if any side effects, but to be honest most didn’t do much for me.
    The exceptions where Revlimid, which is in pill form and helped for about 18 months. The other was Vidaza. It was very painful and I wouldn’t wish it on anyone eventhough I endured it for over 2 years.
    I have been transfusion dependent for 17 years now. Up to about 1.5 bags/ week now.
    The higher you can maintain your counts the better. Use an Iron chelator to offset the Iron you get from transusions. A positive attitute and iron management and you can go a long time on transfusions.

    in reply to: New to MDS, any answers/stories greatly appreciated #58232
    Jack Allen
    Participant

    Matt,
    There are many versions of MDS and it will depend on which one he has and whether reds, whites or platelets are affected, or all of the above. Low grade is most likely only red cells.
    I have ringed sideoblasts with only reds affected. They told me to get my affairs in order, then 3 months later suggested 5 years. That was 20 years ago.
    When blood counts drop you start the get other ogran problems so my advice is,
    1. get as much blood as possible.
    2. get on an oral iron chelator (e.g generic version of exjade. I like the one made by sandoz the best)
    3. Personal preference to try various drugs offered. None of them work for very long for most people, but some have had good success with red cell stimulants like exprex, procrit.etc. and more chemo like drugs like vidaza revlimid, and luspatercept. I got about 18 months transfusion free on revlimid (oral pills) but it seemed to kill my thyroid).
    To summarize, itf there is little else wrong and only red affected, transfusions can carry you a long time.
    Good luck

    in reply to: Excessive Sweating and MDS #58162
    Jack Allen
    Participant

    I had excessive sweating, even during the day.
    Turned out that the prolonged excess of iron had an extremely negative effect on my testes.
    All cleared up with hormone replacement (i.e testosterone).
    Simple blood test to check levels.

    in reply to: Fevers, multiple transfusions #58158
    Jack Allen
    Participant

    Hi Dale,
    I am 72 and also have many co-morbidities.
    Stage 4 liver problem due to long term iron overload, heart failure, severe calcification of coronary arteries,
    and now lung problems such that my O2 saturation is so low I need home oxygen.
    However, I was diagosed more than 20 years ago and have been transfusion dependent for 17 or 18 years. Luckily for me, my MDS affected red cells only. I have tried many different drugs over the years including Vidaza. It also worked for me for about a year.
    Revlimid worked for almost 2 years and actually gave me transfusion independence for most of that time. I am currently on Luspatercept. It is supposed to be the perfect drug for me, specifically for ringed sideoblasts. It is having minor improvement on my reds, but it has actually improved my white cells and my platelets to everyone’s surprise.
    I am currently close to 1.5 bags of blood every week.
    Do not give up !!!
    As long as you and your husband keep a positive attitude, blood products should not be his demise. I have probably had at least 500 bags of blood with only 2 minor reactions

    in reply to: Blood transfusions #58147
    Jack Allen
    Participant

    Mary,
    I have no idea why he started you at 5mg. I started at 10mg in May 2008 and it stopped working early Feb 2010, so 20 months later. Worked very well. I wish I knew why it stopped working. At the top end I hit 12.0.

    in reply to: How will I know? End Stage of MDS #58139
    Jack Allen
    Participant

    Caroline,
    Going down to 7.3 from 9.2 over 2 weeks is equivalent to 1 bag of blood every week.
    I have been doing that for several years and see no reason to stop any time soon.
    I have many other co morbdities including heart failure.
    For the last several months my shortness of breath has become unbearable from lung problems and probably
    clinical trial luspatercept and I am taking tests to determine if I qualify for O2 at home.
    It sounds like your dad is either eady to throw in the towel or he has a lousy doctor.

    in reply to: Blood transfusions #58138
    Jack Allen
    Participant

    Hi Mary,
    I was diagnosed with MDS RARS 20 years ago and have tried every drug offered for my version of MDS.
    Revlimid worked the best (for about 2 years).
    Early in the process my thyroid died completely so make sure you get your TSH tested regularly.
    My other main side effect was a big drop in WBCs, especially neutrophils (down below.5) so I had to take neupogen, but switched to the once/month shot of NeuLasta which solved the problem.
    Others seemed concerned about transfusion levels.
    I get 1 or 2 bags every week. Getting to the point where I don’t make many useful RBCs of my own.
    Unfortunately, im my opinion, we are slowly being killed by low transfusion levels.
    When I lived in Calgary we discovered that I had heart arythmia when my count went under 100 (10.0 for you U.S. people), so my doctor ordered my blood to keep me over 100 and I had no problems.
    My wife said we had to move back to family in 2006 so we went to Ontario where you could not get a transfusion at 85 or over.
    Stupid , stupid , stupid. They saved 2 bags of blood and what happened; I went into heart failure. So it cost the health care system annual cardiologist vists, echo cardiograms, etc. I went for 3 cardiac ablation surguries which did not work. I also needed 2 stents put in and apparantly have severe calcification of my Aorta and coronary arteries.
    The various health care segments seem to only look at their own costs not the overall costs and patient effect.

    in reply to: Neupogen (Zarxio) injections #58137
    Jack Allen
    Participant

    I was on neupogen self injection every other day while taking Revlimid.
    My Dr. switched me to NeuLasta which is 1 shot/month.
    This brought my neuts from, .5 to 2.5 and solved my problem for the full 2 years I was on Revlimid.

    in reply to: secondary cancer due to Rivlimid #58136
    Jack Allen
    Participant

    Hi all,
    I was diagnosed with MDS RARS,hemachromatosis and non alchohol steato-hepatitis in March of 2002. My ferratin levels got to 2500 due to substantial iron overload which caused my liver deterioration. I do not have Delq5.
    I was told to get my affairs in order with the expectation of a sort life span. Obviously they we wrong since I am still here 20 years later, I am now 72.
    As you can imagine I have tried virtually every drug and chemo offered to me.
    One of them was Revlimid. I worked for me for about 2 years with 2 main side efeects.
    1. It relatively quickly destroyed my thyroid gland. Fortunately they have pills to replace this function.
    2. My WBCs, especially neutrophils went down very low. I had to take neupogen needles every day for some time and then Nulasta came along with a monthly shot. Easy peasy.
    I am currently getting transfused one or 2 bags of blood a week
    I was trying Luspatercept but its help was very minimal and my lungs are imflammed and damaged causing severe shortness of breath and very low O2 satuation.I and now being tested to see if I can qualify for home oxygen.

    in reply to: Reblozyl #58135
    Jack Allen
    Participant

    Hi all,
    I started Reblozyl in Aug 2021.
    I appeared as the perfect candidate with RARS and transfusions every week.
    On my first dose I got improved platelets and white cells but no improvement
    in my red cells. I thought WTH this not right.
    Dr. said most people don’t respond until they get to the top dose (dose 7).
    I seemed to tolerate the drug, but even after many many shots I would say I went from 7 bags over 6 weeks to 6 bags over 6 weeks. Not helpful enough.
    I just discontinued because I am very short of breath, my O2 sauration is very low, and my lung damage has increased. Perhaps a different problem, but I think it is related to this drug.
    I was diagnosed at age 52, and told to get my life in order. Life expectancy not high. I am now 72 and tried every drug and chemo offered.
    The best one I has was called Revlimid. For over a year I could come off my iron chelator. Easy peasy pill once a day.

Viewing 13 posts - 1 through 13 (of 13 total)

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