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 15 posts - 1 through 15 (of 47 total)
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  • in reply to: Day -6 #8192
    doreen
    Member

    Thank you EVERYONE. The worse part of this is not being home in my own home and smelling the fresh air but knowing there are others that are thinking of each other makes living like this so much easier. I know now how much I appreciate everyone else that has been in this position. Its not easy to have any disease and I admore you all for all your strenght, the love and the support you give. THANK YOU!!

    in reply to: Day -6 #8179
    doreen
    Member

    For any followers out there.. here is my web page
    http://www1.caringbridge.org/mn/sadieflowers/

    in reply to: My BMT #7971
    doreen
    Member

    Dave, thank you for taking the time to keep everyone informed. I wish you the best and know that you can get through this and look forward to better days and years. I am tentively schedule for my transplant after being diagnosed with mds in april 04 on tuesday August 5th. I read these posts to help give me courage and strength to get through this. Best wishes to you Dave.

    in reply to: update #7812
    doreen
    Member

    Suzanne, Good for you! I am so happy for you and really, you are a good inspiration for us all with MDS. All my best always, Doreen

    in reply to: BMT Scheduled for next week. #7628
    doreen
    Member

    Dave- That is so great! Its good to hear such good news. I wish you the best of everything. Be strong, smile, have faith…

    in reply to: Hoorah! #7181
    doreen
    Member

    Suzanne – I am so happy for you. I can only imagine what you are going through.. ENJOY the feelings!!!

    in reply to: weight loss #6880
    doreen
    Member

    hello.. being in and out of the hospital alot lately, you pick up alot of good information. many of the patients i see are on a medicine to increase their appetite. What Eve mentioned-megastrol- sounds familiar. sounds like its used quite a it here because appetites are such a problem. i cannot stomach boost or ensure but did find that the instant breakfast in a blender with some ice cream is not too bad. i never thought there would be a day that i would need calories!!!!!

    in reply to: Revlimid FDA Review #6718
    doreen
    Member

    if it is not too late, please add my name. thank you so much for doing this

    Doreen Ward
    2316 schmmidt ct. se
    rochester, mn 55904

    in reply to: How long before your white count comes back? #6377
    doreen
    Member

    Thank you both for your input! I was starting to think there was something wrong. The dr. keeps telling me that this is normal but apparently I thought I was superwoman and they would come back in a week. Guess not! Thanks again! Doreen

    in reply to: Dad is in the hospital with a fever #6398
    doreen
    Member

    Hi Carrie, What is VRE? I was in the hospital for Cdiff for 4 days with IV antibiotics (flagel) and then now for 9 more days on oral Flagel. I guess it can get nasty but they told me that after my chemo since chemo hits the stomach, mouth and hair hardest that it was not unusual for me to get it. I hope your father feels better very quickly

    in reply to: new here #6357
    doreen
    Member

    Genew, Its unfortunate that we have to meet this group of wonderful people in this way but they are wonderful and so supportive. Never feel like you cannot ask or express anything here. Best of luck to you.

    in reply to: New and confused… #6380
    doreen
    Member

    Pam – The doctor should know what type of MDS from the bone marrow biopsy. I would be insistant on what they found and if there are blasts in his bone marrow. I talked to a 70 year old the other day while I was getting a tranfusion who said he opted not to get chemo because of his age. It takes alot out of a person – instead he continues to get transfusions when needed. 3.0 is not that low for white. The platelets and hemoglobin can be transfused. I am not a doctor but keep asking questions of them until you get the answers. Best of luck to you and your father. I know that it it not easy, but keep your chin up.

    in reply to: Wanted to tell everyone hello #6106
    doreen
    Member

    Hello.. I am back out of the hospital. I had C-diff, an intestinal infection. Whew! glad they semi have that out of control. Home again. Neutropenbic, and impatiently waiting for those counts to come up and being very careful! Kathyrn, thanks for the little extra. It must have helped. Good news is that the chemo did get rid of the blasts but need to take another one when my counts come back up. Bad news is that my hair is thinning very quickly!!! Smiling today and glad I am alive. Thanks everyone for your support!

    in reply to: Wanted to tell everyone hello #6105
    doreen
    Member

    Hello.. I am back out of the hospital. I had C-diff, an intestinal infection. Whew! glad they semi have that out of control. Home again. Neutropenbic, and impatiently waiting for those counts to come up and being very careful! Kathyrn, thanks for the little extra. It must have helped. Good news is that the chemo did get rid of the blasts but need to take another one when my counts come back up. Bad news is that my hair is thinning very quickly!!! Smiling today and glad I am alive. Thanks everyone for your support!

    in reply to: Revlimid – anyone heard of this? #6282
    doreen
    Member

    Hello. I could not get to your page. But I just was sent the article also. I am assuming it is
    the same one.

    Drug’s Effect on Cancer Stuns Doctors

    By MARILYNN MARCHIONE
    AP Medical Writer
    Published May 16, 2005, 9:06 AM CDT

    ORLANDO, Fla. — No one could have been more surprised than the doctors themselves. They were just hoping to relieve the symptoms of a deadly blood disorder — and ended up treating the disease itself. In nearly half of the people who took the experimental drug, the cancer became undetectable.

    Specialists said Revlimid now looks like a breakthrough and the first effective treatment for many people with myelodysplastic syndrome, or MDS, which is even more common than leukemia.

    “It may be, if not eradicating the disease, putting it into what I would call deep remission,” said Dr. David Johnson, a cancer specialist at Vanderbilt-Ingram Cancer Center who is familiar with but had no role in the research.

    Revlimid “is not yet on the market but almost certainly will be” because of these findings, he said.

    MDS refers to a group of disorders caused by the bone marrow not making enough healthy, mature blood cells. About 15,000 to 20,000 new cases are diagnosed each year in the United States, and as many as 50,000 Americans have it now. They usually suffer anemia and fatigue and need blood transfusions about every eight weeks to stay alive.

    “It’s a serious problem, it tends to occur in older people, and it’s fatal for most,” said Dr. Herman Kattlove, a blood disorder specialist at the American Cancer Society.

    Revlimid is similar to thalidomide, a drug notorious for the birth defects it caused decades ago but that in recent years has proved effective against another blood cancer, multiple myeloma. Researchers don’t really know how it works other than that it boosts the immune system in a number of ways.

    In small studies, Revlimid also showed promise and with far fewer side effects. In a new study, doctors tested it on 115 people with MDS who have the most common chromosome abnormality that causes the disease.

    After about six months on the drug, 66 percent no longer needed blood transfusions, said the study’s leader, Dr. Alan List of the H. Lee Moffitt Cancer Center in Tampa, Fla. A year later, three-fourths of them still don’t need transfusions.

    But the big surprise was that signs of the genetic mutation fueling the disease diminished in 81 patients and vanished in 51.

    “The chromosome abnormality completely disappeared, something we’ve never seen before” from a drug aimed just at boosting red blood cells, List said.

    Dr. Bruce Johnson of the Dana-Farber Cancer Institute in Boston compared it with what doctors saw in early tests of the drug Gleevec on people with chronic myelogenous leukemia several years ago.

    “If you extrapolate what they saw, it’s one of the signs for long remission,” he said of the abnormality’s disappearance.

    Dr. Jasmine Zain, a blood specialist from the City of Hope Cancer Center in New York, said the results warrant further testing on the drug.

    “Nowhere do you see 60 to 70 percent responses,” she said.

    About one-third of people on the drug had temporary drops in other blood cells and clotting components, fixed by briefly interrupting treatment or lowering the dose.

    The study was sponsored by Celgene Corp., which makes Revlimid. List is a consultant for the company and reported results Sunday at a meeting of the American Society of Clinical Oncology in Orlando.

    In other news at the conference:

    * A five-year study of cancer care in America concluded that most people get good care but that quality differs from region to region.

    The oncology society commissioned the study by Harvard University and the RAND Corporation after a 2000 Institute of Medicine report said that not all Americans were getting good cancer care and that this seemed to be a substantial problem.

    continue >>

Viewing 15 posts - 1 through 15 (of 47 total)
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