MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 5 posts - 1 through 5 (of 5 total)
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  • in reply to: New Vidaza Patient #35712

    EVERETT VAN HOESEN
    Participant

    I see it’s been quite a while since somebody posted on this site. Perhaps this will help those were curious about how Vidaza works. I am just beginning my 18th month of treatments. I have been quite accustomed to receiving the treatments and do well. I received Decadron steroids 4 times during each one week cycle. Hopefully, I will go on for at least another year. For me Vidaza certainly has been a lifesaver and I hope it will be for all of you who will be needing it.

    in reply to: New Vidaza Patient #32253

    EVERETT VAN HOESEN
    Participant

    I hope I will be able to provide helpful information. In January 2016, after a BMB done by Florida Cancer Specialists, I was diagnosed with Primary Myelofibrosis PMF. At that time my blasts (immature cells) were approximately 3%. I was put on a “watch and wait” routine, because PMF is often chronic and can go on for many, many months, or even years. In July, I arranged an appointment with Dr. Verstovsek at MD Anderson. Dr. “V” is head of Anderson’s leukemia department and considered a top world expert regarding blood cancers. At MDA I had another BMB and it was quite revealing. First, they tested approximately 25 chromosomes vs. twenty at FCS. Consequently, they identified the chromosome causing my problem. They also determined that I had Myelodysplastic Syndrome (MDS). I ws continued on “watch & wait”. At the end of September another BMB was done and the result was bad. My blasts were 28% and my diagnosis was Acute Myeloid Leukemia (AML). Consequently, I began Vidaza treatments on October 3rd at FCS. My treatments consist of seven days infusion Mon>Sat + Mon) followed by 21 days “Gap”. Each infusion starts with Aloxxi, an anti nausea drug. I have never experienced an infusion related nausea episode. On Monday, Wednesday, Friday and Saturday I also receive a 20 minute infusion of Decadron–a steroid. Decadron is VERY BENEFICIAL, because it stifles pain, including long standing lower back pain, and it puts me on a high. Lastly, I receive my Vidaza. Initially, it was infused in 40 minutes, but now it too is infused in 20 minutes. Following my first treatment round I experience some itching on my chest, but that was easily taken care of by topical cream prescribed by the Doctor. In February 2017 I returned to MDA for another BMB. At that time my blasts were down to 9%. I asked Dr. “V”, ‘How do we know if the Vidaza is working?’ His reply, ‘if it was not you would not have been able to come to Houston for this appointment’. I have now completed 9 months of treatments and feel much better than I did at the beginning. I have asked my nurses about their experience with other patients and have been pleased to learn that many, many people have been on Vidaza well beyond the 24 month median prediction. One nurse has been treating a patient who started on trial 70 months ago–almost 6 years (:-). Two other notes. First, I had an infusion “port” installed by a general surgeon. It is used for all blood testing and infusions–I highly recommend it. Second, during my “Gap” weeks I receive an injection of a generic version of Neulasta once each week. The purpose is to stimulate my bone marrow to produce white cells. Usually, within 48 hours after the shot I am a bit wiped out, but I think it is worth it. For those who have low platelet counts (mine went down to 30K), I recommend that you prepare a Papaya smoothie from a fresh papaya, banana and mixed fruit. My platelet counts are typically about 90K. You can google papaya and dengue fever to learn more.

    in reply to: New Vidaza Patient #32251

    EVERETT VAN HOESEN
    Participant

    This is a test reply

    in reply to: New Vidaza Patient #31085

    EVERETT VAN HOESEN
    Participant

    My experience using a port has been so positive that I find it difficult to understand why any hematologist would not recommend it for every patient taking by Vidaza. They insert a needle on Mondays and leave it in place through Saturday and then have to reinsert it on Monday. All of my blood tests are taken through my port. If you do not have a port please look into it.

    in reply to: New Vidaza Patient #31084

    EVERETT VAN HOESEN
    Participant

    I have been on completed two cycles on Vidaza. An initial BMB in July revealed that I had MDS. Subsequently, in August a second revealed that I had AML. My platelets were at 41. My treatments have gone exceedingly well. I had a port installed so that I am not dealing with any of the bruising or difficulties mentioned by others above. I am on a very strong dose 150 each time. Initially they gave me anti nausea injection as a part of the treatment, but now it is only given at the first treatment not the subsequent six. Two of the 7 treatments include infusion of a steroid. It makes me feel great and stops my back pain hand pain in the legs. I have been living a pretty normal life including getting in 9 holes of golf weekly and playing bridge 3 times a week. After my first BMB done by doctor Daniel Morris had Florida Cancer Center Naples Florida I was fortunate to be able to book a visit to MD Anderson in Houston. There I met with Dr. Versetovsek better known as Dr. “V”. He is recognized as the world’s foremost expert on all forms of Leukemia and heads-up that department at MOORINGS Anderson. When my diagnosis advanced from MDS to AML he together with Dr. Morris decided upon the Vidasa treatment. The only problem I have had with the treatment is that it has caused severe bouts of constipation. So far, I have not had a good solution. It even resulted in a 2 night stay in the hospital to have a bowel blockage cleared. We are still working on the best diet and drugs to take care of the problem. If any of you have suggestions I would welcome them. Another suggestion for all of you is that a papaya smoothie does an incredibly good job of help keeping up the platelets. Read about it on the internet. I make a smoothie using a hole papaya, one banana, and mixed fruit in a blender. Take It 2 or 3 times a day. My HEM has been impressed with the result. Finally, my HEM has one patient in remission and another that has been taking the drug for more than 2 years.

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