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Myelodysplastic Syndromes Archive Questions

Below are Dr. Baer’s answers to Myelodysplastic Syndromes questions
received through the Ask the Expert feature.

This content is provided for informational purposes only, and is not intended
to be a substitute for individual medical advice in diagnosing or treating a
health problem. Please consult with your physician about your specific health
care concerns.

Now displaying records 1 to 15 of 43.

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Q : 1

Is MDS hereditary? If one of our parents had it, should my siblings and I be tested?

MDS is generally not hereditary, and you and your siblings are likely not at increased risk. Of course, you should all have standard periodic medical evaluations.

Q : 2

Does your center treat and evaluate amyloidosis?

Our center does evaluate and treat amyloidosis. Which physician or team would be most appropriate depends on the type of amyloidosis and the manifestations.

Q : 3

My husband is 64 years old and has been diagnosed with ITP. His platelet count was 33,000 and after his doctor gave him an injection of WinRho it went up to 48,000. The doctor was expecting better numbers and now wants to him to have four infusions of Rituxan. What is your opinion? Are there other treatments available that are safer? Should we get a second opinion?

Rituxan is good treatment for ITP, and while every treatment has potential side effects, Rituxan is relatively well tolerated and safe. Hopefully it will work. If not, your husband's doctor will suggest another treatment and/or you can ask whether a second opinion is advisable.

Q : 4

I have primary myelofibrosis. Does this cause my blood to over clot or keep it from clotting?

It can do either one, depending on whether your platelet count is high or low, and also depending on platelet function, or how well your platelets work, which is more difficult to measure.

Q : 5

My mother was recently diagnosed with primary myelofibrosis. She is being scheduled for a bone marrow transplant. I was wondering if primary myelofibrosis is considered a form of leukemia, and will a bone marrow transplant completely cure her of it?

Primary myelofibrosis is a bone marrow "neoplasm," as are the various forms of leukemia, meaning that they arise by transformation of a single cell in the bone marrow, which then populates the bone marrow with abnormal cells. Bone marrow transplant can cure primary myelofibrosis, and is in fact the only current treatment that can cure it, but it does not always cure it.

Q : 6

I am 74 years old and I have anemia, leukopenia and low platelets. What do you think the reason could be?

There are numerous causes of low blood counts. Bone marrow abnormalities that can cause this are myelodysplastic syndromes, leukemias and aplastic anemia. Other causes are vitamin B12 deficiency, medications, viral infections, an enlarged spleen, etc. Assuming that none of these seem to apply, bone marrow testing (aspirate and biopsy) is indicated.

Q : 7

For the last 5 years my RBC, hemoglobin and hematocrit have been lower then normal. My iron level is normal. My doctor recommends blood tests every 3 months to be on the safe side. Do you recommend that I do anything else? The problems with my blood tests were only discovered after I was rejected as a blood donor after being a regular donor for several years. My father died 4 years ago of MDS and it wasn't discovered until after he had a brain hemorrhage.

In addition to iron deficiency, other causes of an isolated anemia would include vitamin deficiencies (B12, folic acid), decreased kidney function, decreased thyroid function, anemia of chronic disease, and red cell destruction due to antibodies, among others. If none of these apply, early myelodysplastic syndrome is a possibility, and would be evaluated by bone marrow testing, including chromosome analysis. A myelodysplastic syndrome manifesting as an isolated mild anemia would not typically be treated, but rather monitored for progression with serial blood counts, and only treated at the time of progression, i.e. worsening of anemia or fall in other blood counts. Simply monitoring blood counts and deferring bone marrow testing is not unreasonable.

Q : 8

My 86-year-old mother has RARS. She has been on a therapy of Aranesp/Procrit, but now has to have transfusions every three weeks. What other options are available? She lives in Annapolis.

Other treatment options would include a trial of adding G-CSF (Neupogen) to Aranesp/Procrit, azacytidine (Vidaza) or lenalidomide (Revlimid). Azacytidine is frequently effective and is generally well tolerated, including at age 86.

Q : 9

I was diagnosed with CML in September 2009. Since then, I have been on Gleevec (400 mg/1 pill a day). My counts have been normal since late October 2009. I had a second BCR/ABL last month and again is negative 0.00. My doctor says that I have to continue on Gleevec 400 mg until I get a Gleevec count on my blood to see if they can reduce the dose. I am getting a skin rash in my arms that sometimes hurts pretty badly. Should I get a second opinion?

It sounds as if you have had an outstanding response to Gleevec, and the standard of care is definitely to continue it. With regard to your side effects, measuring the drug level is indeed an approach that makes sense. The options are then to decrease the dose if the level is high or to switch to one of the two other available drugs, though your leukemia is certainly responding extremely well to Gleevec. Skin creams should also be prescribed to try to improve your rash.

Q : 10

I was diagnosed with CMMOL 3 years ago. I have very severe systemic itching that seems untreatable. What can be done? Have you seen this in other patients? My blood counts do not require treatment according to my doctor, but my mononuclear numbers are twice the the normal reading. Is there some form of treatment for the CMMOL that could help?

Itching is a known complication of some other bone marrow disorders, but not of CMMOL. I would wonder whether there are some unique features of your disease that are causing this. Have histamine levels been measured? Treating the CMMOL might help the itching if it is causing it.

Q : 11

My daughter's father has myelofibrosis. Is she at risk of getting this disease?

There is no known familial myelofibrosis or genetic risk of myelofibrosis, so she should not be at increased risk for developing the disease.

Q : 12

I am a 51-year-old female diagnosed with ET in 2004. My current treatment is an 81 mg aspirin daily. Platelets average 450 to 525 with quarterly blood tests. Bone marrow biopsy two years ago did not provide adequate bone marrow specimen for reading. Is this considered a dry tap? Low hemoglobin results have come back from CBC three months ago and even lower in last week's CBC. Showing anemia and went back a few days later for another CBC with several other tests. I think it looks like myelofibrosis setting in since I doubt vitamin deficiency because I faithfully take a multivitamin daily. Do numbers and history look like myelofibrosis?

A dry tap is the inability to obtain a bone marrow aspirate. A biopsy should be able to be obtained, and one reason for a dry tap is myelofibrosis, which would be seen in the biopsy. Myelofibrosis would be one possible explanation for development of anemia in the setting of ET, but there are other possibilities. A comprehensive evaluation is indeed indicated. Additionally, if you are in fact developing myelofibrosis, there are several new treatment options, and the choice would depend on your symptoms and findings.

Q : 13

I have hairy cell leukemia and was in remission for 10 years after receiving 2-CDA. Recently, the symptoms have been increasing and my doctor wants to treat me with 2-CDA again. What chance do I have of the drug working again and if it does, will it last as long? I am 41 years old.

Based both on the medical literature and on my experience in treating patients with hairy cell leukemia that has recurred after responding to 2-CDA, there is a very good chance of responding to 2-CDA again. These second responses are durable, though it is of course impossible to predict exactly how long the second response will last.

Q : 14

I have a WBC count of 44,400 and Platelet count of 77400, and Hemoglobin of 11.8%. There are no other symptoms. Please suggest what could be reasons for high WBC and Platelets. I was diagnosed as diabetic a week back.

The high WBC and platelet count and mild anemia could be caused by a chronic bone marrow condition, such as a myeloproliferative disorder, or could be a reaction to an infection or an inflammatory condition. If you have no symptoms, a myeloproliferative disorder may be more likely. Knowing the white blood cell differential count would be helpful. Best wishes.

Q : 15

My husband has been diagnosed with primary myelofibrosis, first grade. His doctor said the only thing that can be done is a clinical trial after his disease progresses to the next grade. Is there anything that can be done or do we just wait?

The treatment for myelofibrosis relieves symptoms, but does not cure the disease, so there is no reason to start treatment unless/until symptoms begin to develop. The course of the disease is very variable, so the time to requirement for treatment is also very variable.

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