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
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Now displaying records 1 to 15 of 30.

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Q : 1 10/13/2009	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 : 2 09/23/2009	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.
Q : 3 08/18/2009	If someone is diagnosed with leukemia 6 months after having a child, is it possible that the baby could have a form of cancer also? It would be extremely unlikely for a baby of a mother diagnosed with leukemia after, or even during, pregnancy, to develop leukemia or another cancer. There are numerous reports of women diagnosed with leukemia during pregnancy, and, to my knowledge, no reports of affected babies. Nor are there reports of these diagnoses in babies of mothers diagnosed following pregnancy, to my knowledge.
Q : 4 05/03/2009	My dad is 77 years old and was diagnosed with MDS 6 years ago. He has an extremely low platelet count and has had recurring problems with rectal bleeding. When he suffers an episode of rectal bleeding (which used to be every few months, but now seems to be happening almost weekly) he is given a platelet transfusion, which sometimes stops the bleeding. If it does not, then seigmoidoscopy is performed to determine the source of the bleed and saline is applied in an attempt to seal the cut. The bleeding then usually stops for a while only to recur about a week later. Do you know of any alternative treatments since the measures being taken aren't working so well and we've been told there is nothing else that can be done? There are two possible approaches to answering the question that you have posed. The first is to consider whether there are treatments for your father's MDS that might improve his platelet count. To answer this, I would need to know more details about his MDS and the treatments that he has already received. The second is whether, given his low platelet count, there are effective approaches to preventing him from bleeding. One approach is local - are there lesions in his colon that can be addressed? The other is systemic- is he receiving platelet transfusions to prevent bleeding, or does he not respond to them? Also, epsilon aminocaproic acid (amicar) is a medication that can be effective in preventing and/or stopping bleeding in people with very low platelet counts, though the effective dose, when given as pills, represents a large number of pills several times per day. Best wishes.
Q : 5 02/27/2009	I was diagnosed with Hairy cell leukemia (HCL) in 1997. I received two courses of cladribine and had a three-year remission. In 2000 I had a relapse and received the same treatment, which was also successful. I am now being tested for lupus and arthritis due to inflamed and painful articulations, accompanied by leg swelling and chronic fatigue. Could any of these conditions be present due to residual effects or complications from HCL? My oncologist told me my bone marrow would never be normal again due to scar tissue inside my bones caused by HCL, and my blood counts have never been back to normal levels. Is this permanent? Arthritis and other "autoimmune" problems can be present in patients with active hairy cell leukemia, but resolve when the disease is in remission. It is not uncommon for blood counts not to recover to completely normal levels following treatment for hairy cell leukemia, but this is not usually associated with symptoms or problems. You obviously need full assessment of your current problems and of the status of your hairy cell leukemia. The relationship between the two may be difficult to ascertain.
Q : 6 01/25/2009	My husband recently was diagnosed with primary myelofibrosis. Differential diagnosis against chronic megacaryocyte leukemia is not yet available. Treatment with erytropoietin has been started. Do you think this is safe re: the risk of stimulating tumor growth? There are very few cases here in Sweden. I assume that your husband has anemia and has a low erythropoietin level. If so, his anemia may respond to erythropoietin, and the benefits would outweigh the possible risks, so a trial of erythropoietin is reasonable. If it is not effective, or is only temporarily effective, there are some other recent approaches that may be helpful, based on early data. Best wishes.
Q : 7 12/12/2008	My husband was diagnosed with MDS in 2001. He started with prociet shots three times a week which worked in the beginning. Changed to 5-Azacitidine; has been on weekly blood transfusions since 2006 with high iron overload. Recently doctors tried TLK199, but after two months he was too sick to continue. Doctor now suggests a new clinical trial. His liver is only working 1/3 and his spleen is enlarged; he also has cardiomyopathy and fluid in his lungs. Platelet count is too low to consider surgery. If he is too sick for a clincial trial, what are our other options? He is very determined and willing try anything. We would appreciate any help at his point. To be able to discuss your husband's options, I would need to have additional information, including his white blood cell count and platelet count, the percentage of blasts in his bone marrow, and the chromosome changes in his bone marrow. Clinical trials usually exclude people with significant other medical problems, so this may limit his clinical trial options, but he can be evaluated for the particular clinical trial. Other non-clinical trial options might be available, depending on some of the information above.
Q : 8 12/11/2008	My platelet count is 60-70,000. Sometimes I bleed from the gums. My doctor advised me to take steroid 2mg daily. I weigh 72 kg. I have no other problems. Please advise what to do next. Your question raises several issues. First, in order to recommend treatment for your low platelet count, I would need to know its cause or presumed cause, and this is not clear to me from the information in your question. Secondly, a platelet count of 60-70,000 is usually not low enough to cause bleeding, so I would wonder about conditions or medications that might interfere with platelet function. Finally, a steroid (prednisone?) dose of 2 mg is low, but I would need to know the diagnosis that has been made or is being considered and the full treatment plan. I would suggest seeking clarification of these points.
Q : 9 09/04/2008	My father, age 67, has profuse bleeding of the gums. Is this something to be alarmed about? He is not one to discuss any major issues with anyone. Could this be a sign of something more serious than simple gingivitis? Profuse bleeding of the gums could be due to severe gingivitis, but certainly raises concern about the possibility of a low platelet count. I would recommend that your father seek medical evaluation, as well as dental care.
Q : 10 08/10/2008	About a month ago I found a small lump under my left armpit and I chalked it up to being an ingrown hair. Now it is larger than before and I have another one that I noticed an inch away from it. I am male, 35 years old and I have been diagnosed with young onset Parkinson's as of 3 years ago. Could this be serious? This could be serious, but could also not be. You definitely need to see your physician now in order to be examined to determine whether the lumps are in your skin or in your lymph nodes, and to have any appropriate tests done, depending on the findings when you are examined. If it is serious, it will be attended to quickly, and if it is not serious, you will be reassured quickly. I do not readily see a connection to Parkinson's.
Q : 11 07/30/2008	I am 52, female, and frustrated. Although two bone marrow biopsies revealed foamy blue histiocytes (approx. 3-4 yrs. ago), extended tests/evaluations yielded no definite diagnosis, except for a prolonged antibiotic regimen based tentative diagnosis of Whipple's disease. Suddenly, in October '07, my WBC dropped and my primary pare doctor sent me for a bone marrow biopsy, which revealed MDS, but no macrophages as seen a few years previously. No DNA or chromosomal abnormalities. Since diagnosis, doctor has prescribed Aranesp and iron injections for me every two weeks. I also received 2 units packed red blood cells and was hospitalized in May after severe rectal bleeding, when I received 2 more units of blood. A colonoscopy revealed no GI cause for the bleeding. Since then, I have bled from my nose, fingernails, toenails. 7/28/08 labs: RBC: 3.81, HCT: 31.7, WBC: 2.8, HGB: 10.6, PLT: 90. (These are all increases from the previous labs.) I haven't been able to obtain a perspective from my oncologist and am interested in whether there is a more aggressive treatment to pursue. Perusing yourwebsite and reading your comments has already infused a bit of much-needed optimism into my life. You indeed have a complicated history! I would want to understand how your previous history fits with the current diagnosis of MDS. Additionally, significant bleeding is surprising with a platelet count of 90,000, so I would want to further investigate your bleeding tendency. If the diagnosis of MDS is firmly established, there are indeed other treatments that have the potential to be beneficial.
Q : 12 07/28/2008	I have a questions about megaloblastic anemia. For the past 6 years, whenever I have had blood work done (probably 10 times over the past 6 years) my RBC is always low and MCV high. Sometimes the MCH is high. More rarely the hematocrit is low (maybe twice). I have had ferritin checked (fine) and B12 and serum folate (normal and high respectively). If my B12 and folate levels are adequate in my blood, can I still have this type of anemia and if not, can you advise on where to go from here for further information? In addition to low B12 and folate, there is a broad range of other causes of a high MCV, including increased young red blood cells (reticulocytes), abnormal blood proteins, an early bone marrow disorder and liver disease. It is hard to assess the significance and the cause without more information.
Q : 13 05/26/2008	I am an 83-year-old man with a prosthetic heart valve. Lately, I have been terribly fatigued all the time. I have had all the tests (CBC, liver scans, echocardiograph, X- rays) and the diagnosis was MDS. I had a bone marrow biospy that showed no accumulation of blasts, occaisional siderblast, no evidence of non-Hodgkins, lymphoma or leukemia. The primary blood count numbers were in the normal level. I know that MDS is a precurser to AML, a deadly form of leukemia. In your professional experience, have you encountered a leukemia patient with low, close to normal CBC counts? MDS can indeed be a precursor to AML, but most of the time it isn't! Only 25% of people who have MDS will develop AML, and typically it is those who have very low blood counts and already have accumulation of blasts in the bone marrow. Since your blood counts are not much below normal and your marrow does not show increased blasts, your outlook should be relatively favorable, and the likelihood that you will develop AML should be quite low. Also, there are now treatments that can slow progression if it begins to occur. So hopefully you will continue to do well!
Q : 14 01/16/2008	I have slowly declining white blood cells and chronically low platelets (70K for over 15 years). I am 60. After many other tests, by exclusion, MDS is being suggested. A bone marrow biopsy was normal, with normal cytogenetics and normal flow cytometry. If this is MDS, is there any advantage to early treatment? Also, I have an underlying mild autoimmune condition, which the neurologist thinks is CIDP. My blood chemistries are very good and I am physically active and feel very well. Do patients with autoimmune issues tend to respond better to ATG and similar drugs? Any comments will be appreciated, understanding I have given you minimal information. You present a very challenging problem -- low blood counts without positive evidence of myelodysplastic syndrome, but without other obvious explanation. First of all, if this did turn out to be myelodysplastic syndrome, it would very likely be low-risk based on the information that you gave me about blood counts, and normal appearance of the marrow and normal cytogenetics. Thus, the outlook would be very good, and treatment would not be indicated. In addition, given your autoimmune condition, you might in fact not have myelodysplastic syndrome, but rather immune cytopenias or a condition called T-LGL propliferation (blood flow cytometry would be used as part of evaluating for the latter). So, should you require intervention in the future and should you still not have positive evidence of myelodysplastic syndrome, a trial of corticosteroids might even be considered. Please bear in mind that these are general thoughts based on what you have told me -- not medical advice, since I have not reviewed your records, etc... Best wishes!
Q : 15 01/10/2008	I have just been diagnosed with Lymphoma and am 4 weeks pregnant. No s/sx. To stage the disease, isn't a MRI preferred. What is the next step? Your staging studies will need to be chosen carefully because of your pregnancy. Importantly, lymphoma responds very well to treatment and may be treated with the goal of cure, but the treatment depends on subtype and stage, and, in your case, will need to take your pregnancy into account. It is important that you seek care in a center with an expertise in all aspects of lymphoma management and care. Best wishes!

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