my old man has MDS
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March 21, 2005 at 3:03 am #4891ArkadiMember
Hello Im new here, and Im counting on some much appreciated support from you. Im getting to know the language of this disease like cell counts and clinical treatments.
My dad was first diagnosed in 2001 apparently his hematologist just informed us a few months back of the possible prognosis associated. I enrolled him to another specialised who took another bone marrow sample. The specialist told us he has MDS.
RARS
age 62so he has been talking vitamin B and Thalidomide and apparently its working his cell count is increasing.
I spoke to a few other hematologists and specialists and they were very positive saying that theyde had patients surviving for 20 years!
These last few days my father has been sick, maybe its the flu so we are concerned to say the least. Well probably take him to his doctor
What other alternative treatments exist, I hear Procrit and Vidaza are also alternatives
March 21, 2005 at 3:16 am #4892eveMemberis your dad being treated at a center of excellence in nyc and/or by a hemodoc who has experience treating mds patients – my dad is on vidaza and procrit – initially he was on procrit alone and it did very little to help his condition-the vidaza has helped lengthen the time in between transfusions – i hope your dad has brought his flu symptoms to the attention of his doctor very important for patients with mds to get immediate treatment so that there are no major complications
eve
March 21, 2005 at 11:19 am #4893andrzej g.MemberWelcome to the Forum, Arcadi
As you probably know, RARS is a subtype of MDS having – generally speaking – relatively favourable prognosis. Median survival from the time of diagnosis is ca 4 years, but – as the biology of the disease is inconsistent – it may vary.
Much depends on the cytogenetics – but only every fifth patient have changes in his karyotype. No abnormal chromosomes mean favourable prognosis.
Only ca 5% of RARS progress to acute leukemia.In a MDS patient every fever, every cold should be considered as a potential medical emergency and should be consulted with a doctor immediately.
Patients with MDS should have their CBCs/blood smears evaluated quite regularly to monitor their blood cell counts.
Even satisfactory levels of blood cells might in particular patients be not enough because the defects in their maturation and differentiation make them infunctional.Referring to the other alternatives you asked about I would need some more detailed data on the blood smears and bone marrow biopsies.
Vidaza is of course an option, but it is more probable to work on RAEB patients.
Erythropoietin (EPO, Procrit) is an option especially in early stages of disease and when serum EPO levels fall below 200 U/l.
Thalidomide is an experimantal agent in context of MDS and appears to be a good choice of your father’s doctor. It works on every fifth patient to show complete response. Patients with refractory anemia or refractory anemia with ringed sideroblasts in the early phase of disease demonstrated a better response than those with more advanced disease. Responses included the correction of anemia and/or increased platelet and neutrophil counts.If the disease progresses and your father’s health allows it, I would think about a transplant option in case a perfect matched donor was avaiable. Prof. Mufti’s outcomes at King College England (Greg posted the specific ‘Blood’ Journal link) seem to be very promising.
Best wishes for you and your father
Take care
March 21, 2005 at 3:02 pm #4894TerriMemberMy Husband is also on Vidaza and Procrit, Maintaining at this point. If you look at some of my other post you will find we also engaged a Nutritionist who has him on a lot of Vitamins, supplements and healthy diet.
I wish your Dad well.
March 26, 2005 at 1:56 pm #4895ArkadiMember…thanks for the information everyone, He getting much better and it appears the flu has subsided.
A bone marrow transplant? well, dont you think it would be out of the question at his age???
March 26, 2005 at 4:10 pm #4896shirlsgirlMemberHi Arkadi,
not necessarily. Another panel member’s mom (Greg’s mom)was I think 65 when she had a midi transplant in November. She’s had some ups and down’s but is doing well +100 days after transplant.
Jody
March 29, 2005 at 2:16 am #4897SuzanneMemberThey would have recommended one for me if I had a matched sibling. Did not recommend using the marrow pool but a lot has changed in the past two years.
March 29, 2005 at 6:28 pm #4898LexingtongrnMemberMy friend is 65 and is going through a BMT right now and so far it is successful.
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