Myelodysplastic Syndrome – Life Expectancy, Prognosis, Treatment, Symptoms

What is Myelodysplastic Syndrome?

Myelodysplastic syndrome is a group of hematological conditions resulting from the ineffective function or production of the myeloid blood cells. Formerly known as pre-leukemia, the bone marrow develops progressive failure and results in cytopenias (low blood count). About 30% of patients with MDS progress to acute myelogenous leukemia, which can occur within a few months or years from the onset of the condition.


MDS originates from a disorder in the stem cell in the bone marrow which reduces the number of blood-forming cells, resulting in impaired blood production or hematopoiesis. There is an increase in myeloblasts which are immature and unable to produce mature red blood cells. The primary manifestation of MDS is anemia due to low red blood cell production.

Classification of Myelodysplastic Syndrome

Myelodysplastic syndrome can be classified as:

  • Refractory Anemia. This involves less than 5% of myeloblasts and pathological conditions in the red blood cell precursors.
  • Refractory Anemia with ringed sideroblasts (RARS). This involves less than 5% of myeloblasts, but with greater numbers of abnormal iron-stuffed red blood cell precursors known as the ringed sideroblasts.
  • Refractory Anemia with Excess blasts (RAEB). This involves up to 20% of myeloblasts in the bone marrow.
  • Refractory Anemia with Excess Blasts in Transformation (RAEB-T). This involves 21-30% of myeloblasts in the bone marrow.
  • Chronic Myelomonocytic Leukemia (CMML). This involves less than 20% of myeloblasts with greater than 109/uL monocytes in the blood.

Some cases of MDS are difficult to classify, as in cases with neutropenia (decreased circulating neutrophils) and thrombocytopenia (decreased platelet count). The incidence of MDS increases with age. People aged 70 or over are more at risk, but some documented cases were in patients younger than 50 years of age. MDS in children is rare, and males have a higher incidence of developing MDS than females. The incidence of MDS is up to 20,000 cases per year.

History of MDS

MDS was first described as pre-leukemia in 1953. There were many terms that described MDS until 1976 when it was popularly known as myelodysplastic syndrome.
Death occurring from MDS is not directly related to the progression to leukemia, but is influenced by infections and hemorrhage, despite absence of leukemia. MDS which progresses to leukemia is also resistant to treatment.

What are the Symptoms of Myelodysplastic Syndrome?

Symptoms of myelodysplastic syndrome are related to the decreased circulating blood component levels. These include:

  • Anemia. Symptoms and signs include shortness of breath, chronic fatigue. chest pains, chillis and paleness
  • Thrombocytopenia. Symptoms and signs include increased bleeding episodes, bruising (ecchymosis), purpura (several hematoma) and petechial rash (reddish pinpoint rash on the skin)
  • Neutropenia. Symptoms and signs include increased risk of infection and sore throat
  • Hepatomegaly or splenomegaly. This is due to rapid hemolysis of the blood component, which is filtered by the spleen and liver.
  • Abnormal characteristics of blood cells. These are normally identified by examination

What Causes Myelodysplastic Syndrome?

The exact cause of myelodysplastic syndrome is not known, but several risk factors contribute to its development. Risk factors include:

  • Smoking or tobacco use.
  • Old age (more than 60 years old).
  • Exposure to radiation such as in the presence of an atomic bomb or nuclear reactors.
  • Exposure to benzene and chemicals used in the production of rubber and petroleum.
  • Previous radiation or chemotherapy and radiomimetic agents such as nitrosourea, busulfan and procarbazine.
  • Disorders such as Fanconi anemia, acquired aplastic anemia, congenital neutropenia, familial platelet disorder and Shwachman-Diamond syndrome

The disorder occurs along with the mutation of the bone marrow stem cell which causes impairment in the blood precursor cells. There is also an increased rate in apoptosis (cell death) of bone marrow cells leading to impaired blood cell production.

How to Diagnose Myelodysplastic Syndrome?

The exact diagnosis of MDS is difficult because genetic testing needs to be done to determine gene mutations. However, several general tests are normally done to determine the extent of blood cell impairment. Other causes of low blood component levels should be ruled out to diagnose MDS. These include:

  • Medical History and Physical Assessment. The complete medical history of the patient is assessed to check for any risk of development of MDS. Physical examinations are also done to assess any signs and symptoms of the disorder.
  • Complete Blood Count. The complete blood count is taken to determine levels of RBCS, hemoglobin, hematocrit, WBCs, and platelets in the blood. Specific levels of WBC type are also taken such as the neutrophils and monocytes.

Types of MDS are identified using the following indicators:

  • Refractory Anemia – there are few RBCs, but the WBC and platelets are normal
  • Refractory Anemia with ringed sideroblasts – there are few RBCs with excessive iron in them. WBC and platelets are normal.
  • Refractory Anemia with excess blasts – there are few RBCs with up to 20% of blasts in the bone marrow with normal amount of blasts in the blood. WBCs and platelets are sometimes low.
  • Refractory Anemia with excess blasts in transformation – there are few RBCs, platelets and WBCs in the blood. Up to 30% of bone marrow cells and more than 5% of blood cells are blasts.
  • Unclassifiable MDS – there are few blood cells in the blood, the level of blasts is normal and the condition is not characterized as MDS syndrome.
  • Bone marrow aspiration – Samples of the bone marrow are collected using a long-thin needle on the pelvis or breastbone of the patient. The samples are subjected to biopsy or cytogenetic analysis.
  • Biopsy – The bone marrow cells are examined to determine any cellular aberrations or changes. The common finding is a dysplasia of the bone marrow cells.

Myelodysplastic Syndrome biopsy


Biopsy procedure


Source – cancer.gov

  • Cytogenetic Analysis – Sample bone marrow cells are examined under a microscope to check the chromosome and cell characteristics.
  • Peripheral blood smear – This involves the checking of the shape, size and iron-loading of the red-blood cells. Certain types of MDS show excessive iron in the red blood cell precursors.
  • Tests for other causative factors of anemia – Diagnostic tests for renal failure, vitamin B deficiency, hepatitis, lupus, heart failure, HIV and hemolytic anemia are done to determine if the anemia is caused by other factors or by MDS.

How to Treat Myelodysplastic Syndrome?

Treatments for MDS is focused on alleviating the symptoms, improving survival rate and preventing progression to acute myelogenous leukemia. These include:

Chemotherapy

Chemotherapy is administered with hypomethylating agents to reduce the DNA methylation that causes abnormal and excessive production of blood cell components. Chemotherapeutic drugs include 5-azacytidie, Lenalidomide and Decitabine. These drugs are expensive averaging $9,000 per month of therapy. Chemotherapy with these agents may lessen requirements for blood transfusions and may increase the life expectancy of clients with MDS.

Stem Cell Transplantation

Bone marrow transplantation is done to replace the non-functional stem cells that produce abnormal blood components. Bone marrow transplantation is done with severe forms of MDS. Stem cells are usually taken from compatible donors.

Blood transfusions

Transfusions with blood components are essential to normalize the blood component levels in the body. Anemia may require RBC transfusions and thrombocytopenia with platelet transfusions. Blood transfusions should be monitored because frequent transfusions may lead to iron overload.

Iron Chelation Therapy

Patients with high iron levels in the blood may be treated with deferoxamine (IV) or deferasirox (oral) to decrease iron overload.

Prognosis

The prognosis of MDS depends on the type. Refractory anemia and RARS have the best prognosis among possible MDS types. Patients with these types of MDS may live up to one more decade, even without transplantation. The worst prognosis is from RAEB-T which has a life-expectancy of less than 1 year upon diagnosis. Patients with RAEB-T may also progress to having acute myelogenous leukemia.

Prognosis also depends on the following factors:

Good prognosis factors

  • Younger patients
  • Moderate neutropenia
  • Moderate thrombocytopenia
  • Low blasts count in the bone marrow (less than 5%)
  • No blasts in the blood

Poor prognosis factors

  • Old age
  • Severe thrombocytopenia and neutropenia
  • High levels of blasts in the bone marrow and in the blood
  • Abnormal karyotypes or chromosomal abnormalities

Life Expectancy and Survival Rate

The life expectancy of patients with MDS also depends on the type of MDS. The mean life-expectancy is 18 to 24 months in mild cases of MDS or longer when stem cell transplantation is done. Mild cytopenias, low blasts and normal chromosomes have this range of life-expectancy. On the other hand, patients with severe cytopenias, chromosome abnormalities and high blast levels in the bone marrow and blood have a mean survival time of 6 to 12 months. There is a low survival rate of MDS, and patients may only live up to a maximum of 10 years when treatments are instituted.

Complications

Complications of MDS may result, such as:

  • Iron overload. Patient receiving frequent blood transfusions due to anemia and cytopenias may develop iron overload.
  • Severe anemia. This is the most common complication of MDS due to decrease in RBC production rate.
  • Infection. This is the most common reason for death among MDS patients. This results from low WBC count which decreases the immune system.
  • Hemorrhage. This results from low platelet count in the body which reduces the blood clotting mechanism.
  • Leukemia. Severe types of MDS can progress to acute myelogenous leukemia over a period of months or years.

Prevention

Although there is a big genetic predisposition to MDS, some risk factors can be avoided to help prevent the disease. These include:

  • Avoiding too much radiation exposure.
  • Wearing personal protective equipment in factories to prevent exposure to chemicals.
  • Stopping smoking and tobacco use, and avoiding other forms of carcinogens.

The Role of Genetics

Researchers have indicated that there is a loss of mitochondrial function and accumulation of DNA mutations in the stem cells of the bone marrow. The mutation occurs specifically in the gene U2AF1. The role of genetics has led to the use of DNA methyltransferase inhibitors which improves the DNA methylation profile of the bone marrow stem cells. Loss of DNA methylation results in abnormal and uncontrolled cell growth. Inhibiting its dysfunctional DNA methylation by the DNA methlytransferase inhibitors restores normal blood cell production and prevents progression to leukemia.

Also read – What New Research Studies Have to Say About Myelodysplastic Syndrome?


Edited and proofreading done by Chris


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58 thoughts on “Myelodysplastic Syndrome – Life Expectancy, Prognosis, Treatment, Symptoms

  • 12/05/2012 at 8:38 PM
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    Myelodysplastic disorder is usually acquired from intake of chemotherapeutic drugs. It is essential to talk with your physician on the goals of your therapy as well as providing you with adequate dosage of chemotherapeutic drugs in order to prevent severe affections of the bone marrow. One of my patient experienced myelodysplastic disorder and after blood transfusions, he recovered completely.

    Reply
    • 17/05/2012 at 8:48 PM
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      Yes Annare, although there is a low survival rate of myeodysplastic syndrome, some patients may recover. However, you should still constantly check the blood levels of your patient because the improvement in the blood components after blood transfusions may only be temporary.

      Reply
    • 27/05/2013 at 8:50 PM
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      Blood transfusions are mostly just bandaods for those with MDS.
      DANGER: Iron overd, AIDS, Infections ect.
      PLUS- Christians with a deent comprehension of the lord God Almighty’s view of BLOOD abstain from blood intake in any form.

      Reply
      • 03/12/2015 at 3:21 PM
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        There are transfusion dangers to be mindful of, as any doctor will advise. Any religious belief is personal and need not be shoved down the necks of people with their own minds and sense.

        Reply
      • 25/02/2016 at 6:19 AM
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        Complete morons would not attempt a blood transfusion that has a high success rate of helping and curing many disorders and illnesses, based on their beliefs in a book that was written over 2000 years ago. You are a complete dumbass. What if your child needed a transfusion to live? Would you let them die based on a belief that has never been proven?

        Reply
  • 19/06/2012 at 3:14 AM
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    Hi,
    My mother has beem diagnosed with mds refractory anaemia, she is 63, diabetic for 20 yrs, but never had any radiation /chemo therapy or exposure to benzene. Why did this happen to her? Is stem cell transplant an option to increase the life expectancy or is it ruled out because of age factor? Pls advise.
    Thanks,
    Santhosh

    Reply
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  • 12/10/2012 at 2:41 PM
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    my mother has MDS of RAEBII, She has been given chemotherapy of Decitabine 35 mg for 5days/ cycle for a period of 6 months. Previously her cytogenetic report show 20q deletion of 30%. Now after diagnosis her cells become normal i.e 20q deletion 100%. But still her Hb was not good, it is stable up to 8.0 even 6 units of tranfusions given after each cycle( Initial it was 5.2),. We are confused whether she has been recovered or this is a temporary situation. Please suggest what care should be taken or is there need for firther treatment.Her age is 57.

    Reply
  • 20/01/2013 at 4:18 AM
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    What are the patients symptoms close to death and how can you tell? with Myelodysplastic Syndrome.
    My father is 75, and is having blood and platelet transfusions, loosing weight, and has bled from the bum and nose.
    Thank you

    Reply
    • 08/11/2014 at 7:58 AM
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      Did you fine out about how long

      Reply
    • 08/11/2014 at 8:07 AM
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      Tracy did you find out about life expectancy? Please reply husband is 77 and has mds. Chemo quit working and they are not giving him anymore blood and platelets. We have just started hospital.

      Reply
  • 05/03/2013 at 11:45 PM
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    Is myelodysplastic something our parent can Pass on to us children

    Reply
  • 31/03/2013 at 2:07 AM
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    I have Myelody Splastic Syndrome -refractory anemia with ringed sideroblast .It is difficult health and medical world can not help us.

    Reply
    • 04/12/2015 at 7:45 AM
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      Go to Froedtert Medical Hospital.My mom has Myelodysplastic… Dr.Ehab Atallah saved her life!!!!
      He’s our Guardian Angel.Please go to him.

      Reply
  • 18/04/2013 at 9:00 AM
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    What is Myelodysplastic Syndrome… This, I found when my father was diagnosed with it, is a VERY COMMON “Syndrome” in the elderly. My father never had Chemotherapy, he was never sick in his life in any serious manner. He was a social drinker, and he was no longer the smoker he had been for many years earlier. I have heard people say (in the beauty shop, for instance).. I have Myelodysplastic Syndrome and they have no idea that they will die from this disease! Their Dr. has not told them the severity or the nature of the disease. My father was anemic, he was so tired he could no longer function. He had several blood transfusions, after trying some “new” shots that help to boost red blood cell production and give patients with this disease a reprieve from the most extreme symptoms. My father died five years ago. He essentially bled to death internally. Bone marrow no longer works, liver no longer works as it should, and blood transfusions can cause clotting problems. Only the younger patients have a chance with a bone marrow transplant, this is not offered to the elderly patient. This disease changes or mutates into a Leukemia after a few years.. there are many details, books, information available from the LLS (Leukemia and Lymphoma Society) and it tells you something that this is where you find information on Myelodysplastic Syndrome. Here is a website: (please if you or your loved one have this, look it up, read about it, and see a Hemotologist/Oncologist asap. God Bless.
    http://www.lls.org/diseaseinformation/myelodysplasticsyndromes/

    Reply
    • 28/05/2013 at 4:30 AM
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      Thank you yvonne.. my mum has this too, we find it difficult to get informaton and we get conflicting views from the doctors (however nice they are) I would like some direct information on how far this has progressed as i feel this would help. On reading your post i think it will help me ask some direct questions so thank you.. sorry about your Dad im sure you miss him loads take care.. nanette

      Reply
    • 20/10/2016 at 12:16 AM
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      My husband has MDS. Does anyone have info on the possibility of bone marrow problems with Agent Orange exposure in Vietnam.?

      Reply
  • 28/08/2013 at 5:57 AM
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    what should I not do tohelp myself

    Reply
    • 17/01/2014 at 10:23 AM
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      is there a support group for this

      Reply
    • 01/02/2015 at 5:31 AM
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      I was diagnosed 2 years ago, and have been taking Revilimid since diagnosis. I have the deleted Q5 form, and the Revlimid has been helpful. I am 72 years old.
      My advice of what NOT to do would be:
      1 don’t be angry at your body for being unwell. Bless it and take loving care of all your needs.
      2. Pay a lot of attention to your “self-talk”. If you start to have negative thoughts ….STOP YOURSELF, and put a positive thought into your mind instead.
      People remark that I have a good attitude…still have a good sence of humor, and don’t look like I have a serious cancer.

      I always tell new people briefly what my diagnosis is, followed by the comment that I’m doing well.

      My body seems to be obedient to that proclamation of doing well.My blood counts are still good entering into my 3d year. The median, average, length of life is between 2-3 years, so I am proud of all the “inner” attitude and belief work I have done to keep me going, and doing as well as I am.
      I wish you well, and keep good thoughts for me too!

      Reply
      • 22/04/2015 at 2:54 AM
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        I was diagnosed in November with 5 q deletion. I by accident found out I have a partial missing of chromosome 7–doc never told me. I want to know as much as possible–I have a right to know. I am 59. I just want to know what the average time most people have for this condition.

        Reply
      • 26/06/2015 at 12:39 AM
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        I was diagnosed in my late forties, more than 10 years ago. I did a 3 year stint on Revilimid and have had a few transfusions. I get the “you don’t look sick” all the time, but I agree with Molly. Stay positive. I have out lived my est. life expectancy by 3 years. It is not easy. But you have to fight. My biggest issue is the hematologists I have dealt with. My two that retired were fabulous, but the last few years have been a struggle. I hear “call you pcp, way too much. “You shouldn’t fee that way, can’t be the disease.” Yet when I look up the symptoms, they are classical for MDS, but my come in flares. It is good to read these posts and know I am not alone. Stay positive and keep fighting.

        Reply
  • 20/09/2013 at 1:49 AM
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    Was diagnoised with MDS in June. Routine blood test showed low counts, wound up in hospital when they hit 4.0. Felt better after getting blood, but bone marrow test confirmed MDS. Will be getting Stem cell transplant in Oct. @Nanette:Your Moms age and health would determine if able to get a SCT. A bone marrow biopsy should be able to tell how far the MDS has progressed. Hope this little bit helps.

    Reply
  • 24/10/2013 at 6:54 PM
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    I h ave been diagnosed with mds and even mylo fibrosis. I will be treated with chemo and shots of nupragen (sp.)? They said that hopefully I can do this for 3-5 years and then after I will have to have a bone marrow transplant. I was wondering is this common practice and why not do the transplant now at age 52 with good health instead of waiting till I am 58?

    Reply
    • 29/07/2015 at 11:21 AM
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      Check with your insurance carrier. The older you are, lessons your chances for approval.
      I would question docs reason behind his decision.
      My brother died because they did not get ahead of this disease while he was stable.

      Reply
  • 04/01/2014 at 1:31 PM
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    My daughter has mds chemo and bonemarrow transplant from me 50 percent match donor she just turned 4 I’m not reading anything about children I honestly don’t understand all this It seems the rare condition at this point just buys time no cure 🙁

    Reply
  • 13/04/2014 at 2:11 PM
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    Is O2 useful in the treatment of MDS? 20% of the surface area of a red blood cell absorbs O2, 80% is displaced by inert nitrogen, N2. Would O2 therapy increase the oxygen capacity of the cell and slow the loss of cells between blood transfusions?

    Reply
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  • 20/08/2014 at 2:41 AM
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    Had MDS for about 9 months and being with Procrit maybe all may praying will help me to survive God bless to all

    Reply
  • 02/10/2014 at 11:35 PM
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    There is a wonderful Facebook group called, Fight Myelodysplastic Syndrome. Bunch of great people who are currently battling the disease and their supportive families. I’ve found it to be very helpful.

    Reply
    • 14/05/2015 at 10:49 PM
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      My husband has mds and hemochromatosis which is an iron overload. Need to learn more about this. I really don’t understand it.

      Reply
      • 28/08/2015 at 12:19 AM
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        I was diagnosed 3 years ago and told not to worry. Now I read these notes and I am confused. I had a stem cell transplant 16 years ago after lumpectomy and chemo for stage 3 breast cancer followed by radiation. i was never told much about this disease other then I had it. They found it after a bone marrow draw. I was not told anything about treatments. Lately I am washed out and exhausted but my red count is still 33 which is as good as it was when I was on procrit. Other than tiredness I am alright. Should I be worried or just let the whole thing alone?

        Reply
      • 19/12/2015 at 3:02 AM
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        My husband also has this combination. Was diagnosed with MDS 2007, hemochromatosis Dec 2015. Dr has reported he had a similar patient, and when he was treated for the hemochromatosis the MDS went away! When he reported this to other physicians they were not surprised. Can’t find any research on this.

        Reply
        • 31/07/2016 at 3:15 AM
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          My mom was diagnosed with MDS and has hemochromatosis. She is 73 and cannot have bone marrow transplant.
          I am ready the the life expectancy and am worried.
          Do you have any information? She will have to have chemo.
          Would love to find out about the treatment for hemochromatosis?! my email is ddebastiani@comcast.net
          Thank you
          Vikki

          Reply
    • 26/06/2015 at 12:41 AM
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      thank you for the info, I will be checking this out for sure.

      Reply
  • 24/11/2014 at 12:39 AM
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    my wife age 28 yrs old has mds in 12q deletion dr. Started medicine with lenadidomide with 5 mg after that she tell 10mg and 20mg tablet i want to ask u is that effective in 12q deletion plz reply fast i’m tense!

    Reply
  • 03/12/2014 at 8:50 AM
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    Hello, I’m literally waiting in my mothers hospital room. She is 84 year old and this year has been in full kidney failure (kidney count 203 Aus), was in septic shock and also has had (little known) MBL. We are awaiting the removal of kidney stone and stents to be replaced. BUT this can not go a head atm as her hemoglobin level is 73(Aus Level). She is about to recieve two units of blood. The doctor said today she has shown postive to Myelodyspastic screen test. We’ve been told to have further testing once shes feeling better. Is there any chance the screen test is wrong?

    Reply
  • 05/03/2015 at 8:45 AM
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    hi I’ve been diagnosed with MDS for 2 years deletion 7q is detected 39% already had an Auto transplant,my doctor is telling me that I need a second transplant but I’m not sure I want to go through it may not be worth it,I don’t have a donor or a caregiver I am 46 years old,I’m not sure if the outcome would be good, what you think I should do,right now I’m just trusting God,and live day by day,Thanks

    Reply
    • 10/06/2015 at 4:23 AM
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      You are young! Go for it. I have learned that the younger you are, usually you have a better outcome. They will do Allogenic transplant this time?

      Reply
    • 19/07/2016 at 11:33 AM
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      I was diagnosed with MDS del 20q six years ago. I had 11 treatments with Vidaza thru a PICC line starting early 2012. A year after tx started, deep DVT developed along my PICC. The PICC was removed but not until I had complete occlusion of my subclavical vein. I stopped tx. The clots hurt very badly even though they were partially dissolved with belly shots I gave myself. Six months later it was too much for my body. I had to enter Adult Foster Care because I had no one to care for me when I could barely move. 8 months later I moved “up” to Assisted Living and believed I’d be returning home soon. Bone pain replaced the DVT pain. By now I’ve been in long term care over 3 years. Although much of live is full of suffering the moments when I am happy despite pain and fatigue make it worthwhile….I don’t always feel like it is worth this suffering, but somehow I KNOW IT IS.
      God Be With You and give you Peace.

      Reply
  • 02/06/2015 at 3:57 PM
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    I have a relative, 68 and was given a diagnosis of MDS. His doctor advised him that without treatment his life expentancy is about 6 months. How accurate is this thought process?

    Reply
  • 10/06/2015 at 4:21 AM
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    My husband (62 yrs) was diagnosed with MDS in 2009. He went through revlamid , Vidaza, neupogen – had enlarged spleen, etc. in April of 2013 it went into AML. He had high dose chemo in hospital for 28 days, then in October 2013 he had stem cell transplant 10/10 March unrelated donor. The AML was not there after transplant, but the MDS was still there. He had a very positive attitude, walked, hydrated – did all the right stuff. He did very well, then January of 2015 the AML came back again. He was devastated, but still would not give up. They told him he had weeks to live (74% blasts), but still fought. They gave him Decitibine and transfusions, but in the end the leukemia was too strong. He lost his battle in May of 2015 (64 yrs) Don’t give up. Fight. One day, they will cure this monster. It’s a tough one for sure. Some have asked about the end stages….his white count skyrocketed, he had bleeding of nose and gums and developed leukemic sores on his body. Hope this answers some questions.

    Reply
  • 15/06/2015 at 3:08 PM
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    Hi,

    My Mom having MDS RAEB 2 having blast 13% and age 50 years.
    Please suggest me what to do.

    thanks

    Reply
  • 08/08/2015 at 12:07 AM
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    I have 2 brothers ages 82 and 76 and both have been diagnosed with MDS. Is this a genetic mutation and why both of them if its not?

    Reply
  • 25/09/2015 at 2:38 PM
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    I am 52 and I am in remission from APML. My doctor just informed me that he is more concerned about the Myler dysplasia and I am to go every three months for blood work for two years and then every six months for three more years. I already have shortness of breath, chest pains and fatigued but no one seems to think I should be having these symptoms. I am confused and scared after reading all of this. He said if my counts go up and down he won’t do anything but watch and if they drop then a transplant. I also have been diagnosed with two regurgitating heart valves, one is the aorta, and it is also enlarged. Can someone help with what I should do? My Marrow is that of and 80 year olds. It is at 80/20 instead of 50/50/

    Reply
  • 26/09/2015 at 4:07 AM
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    Consider joining PDSA (platelet disorder support assn.) which helps understand the various illness under this heading. Call 877-528-3538 or go online to pdsa.org. The group has 36 regional ITP support people. The national conference was July 24, 2015 in Nashville, Tn. I joined and am attending a meeting this Sept in Ft. Worth, Tx.

    Reply
  • 09/10/2015 at 4:58 AM
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    how long can live f 80 -hb 7.2 mds care whuir vidaza and blod transfer hige risk ipss
    tnks dan y

    Reply
  • 30/11/2015 at 5:33 AM
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    My Mom is 77 yrs old and has been diagnosed with MDS to be specific RARS. Her symptoms were anemia, never able to get warm, and extreme fatigue. The doctor has given her 10 yrs but thinks something else will get her first, like her bad heart. She is being treated with proscription shots, have you heard of this treatment ? Along with blood transfusions as needed. Her brother had the same syndromes but the doctor says it’s not hereditary ? Any info would be very much appreciated!

    Reply
  • 14/02/2016 at 5:14 AM
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    I am 89 with MDS diagnosed over a year ago. when will they treat me with transfusions/ I get very tired

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  • 19/03/2016 at 11:17 PM
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    My husband age 68 diagnosed with MDS in January, Hgb 6 to 8, platelets running around 35,000, WBC 3.5 with blood transfusions about every 2 or 3 weeks. Staged low to intermediate risk. BM showed 3% blasts, 10% sideroblasts, high retic count and hypercellular bone marrow. Ferritin level over 3 thousand and is taking Exjade. Just added new diagnosis of autoimmune hemolytic anemia and started on high dose Prednisone. Not a candidate for transplant as has heart disease, pulmonary hypertension, and renal insufficiency. I can not seem to find consistent information regarding prognosis. I have seen everything from 6 months to 10 years. Hematologist very vague. What do you think?

    Reply
  • 19/03/2016 at 11:22 PM
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    Addendum to previous email, my husband has two abnormal chromosomes, 21q and trisomy 13 ?

    Reply
  • 27/03/2016 at 9:08 AM
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    As I write, my stepfather is in the hospital battling this mystifying disease. He has been given a few months to live. They say they have done all that they could do for treatments, but his oncologist has applied for, and received permission, to prescribe the drug, Promacta, which has recently come out of experimental stage. It aids in the “manufacture” of platelets and has been used on patients whose spleen is no longer functioning or not functioning well. He has just begun that drug, to the tune of over $6,000 per treatment. Fortunately, Medicare and his retirement insurance will pay for a period of time. And, as it will not save his life, perhaps it will prolong it for a while, at what quality of life remains to be seen. But, he’s “right” with his Higher Power, so I believe it’s between the two of them now. Whatever your journey, Dad, godspeed and peace be with you.

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  • 02/05/2016 at 1:43 AM
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    My name is Zygfryd and I have Myelodysplastic syndrome _Refractory anemia with ringed sideroblast.I was using REVLIMID it worked for while but it stop then I was using Vidaza but is not working and now Ideveloped nose problem I do not nknow what couse it
    I am to old Thank you
    Zygfryd

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  • 18/08/2016 at 11:25 AM
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  • 08/11/2016 at 3:08 AM
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    I find it so sad reading about all these sick people. My husband had this disease for 8 years. He died in 2008. God bless you all. I hope you all het well.

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