[mdsfound]

Chronic and high exposure to benzene, other solvents, insecticides or herbicides are known to increase the risk of developing MDS.

[mdsfound]

Dear Rebecca, Thank you for your post. Both you and your mom probably have underlying auto immune problems. If you want to check for a genetic link, you could be referred to a geneticist, or genetic counselor. I hope this helps.

[mdsfound]

Thank you for your post. I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address. In the meantime, you can also view this videohttps://www.mds-foundation.org/bboh/. I hope this information helps.

[mdsfound]

Hi Donna, Since your mother is not ambulatory, I would recommend that her physician consult doctor to doctor on her behalf. It will be easier for your mother and her doctor will have all of her records that he can share during his consult. I would show her doctor our list of centers of excellence. The world of hematology is very small so it is likely that he or she may know one of our experts.

[mdsfound]

Dear Lynne, The primary concern surrounding the use of RBC transfusions is the risk of iron overload, which occurs when excess iron is accumulated in the body over the course of repeated RBC transfusions due to the body’s inability to clear the increased iron. The consequences of sustained iron overload are serious, including organ damage resulting in congestive heart failure, diabetes, liver dysfunction, as well as dysfunctional hematopoiesis.

As MDS are cancers most commonly diagnosed in older patients, comorbidities are also more common. In a large, population-based study of 1,708 newly diagnosed patients with MDS, 51% had comorbid conditions. The most common nonhematologic comorbidities observed were diabetes, congestive heart failure (CHF), and chronic obstructive pulmonary disease (COPD). Patients with MDS and CHF or COPD had significantly shorter survival than patients without those conditions, whereas diabetes did not appear to have an impact on survival in this study.

[mdsfound]

Dear Chov, I know this is a difficult situation for you and I would recommend that you take your father to one of our Centers of Excellence in MDS for a second opinion. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

[mdsfound]

Dear L. Ann, Thank you for your post with information regarding your mother’s health. I know this is a difficult situation for you. Please give me a call at 1-800-637-0839 Ext. 210 at your earliest convenience. I would like to discuss some options for you. Thank you, Audrey

[mdsfound]

Dear Donna, Thank you for your email with information regarding your mother’s health. I know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. She should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

[mdsfound]

Dear Cosmo, Thank you for your email with information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence for a second opinion. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps.

[mdsfound]

Dear Max, Thank you for your email with information regarding your health. Do you have a copy of our Building Blocks of Hope or 100 Questions and Answers About MDS? Please email me at patientliaison@mds-foundation.org and I will put together an information packet for you. I can also connect you with another young MDS patient for support. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

[mdsfound]

Dear Joey, We are sorry that this is happening to Mil and it must be painful, but I don’t think we can determine whether or not the treatment for the DVT was indicated, and whether this was the cause of her bleed into the brain. There are circumstances when blood thinners are given to patients with low platelets, but that is determined one case at a time. This should certainly be discussed with the hematologist who is treating Mil.

[mdsfound]

Dear Irene, I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion if you have not done so already. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have information regarding MDS/MPN and on MDS with fibrosis. Please email me at patientliaison@mds-foundation.org with your postal address and I will mail it to you.

• This reply was modified 6 years, 7 months ago by mdsfound.

[mdsfound]

Hi Sharon, I would have your father check with his hematologist. I recently spoke with a patient who complained of numbness in his feet. His hematologist had a Vitamin B12 and folic acid test run and the tests came back with my B12 at <2000 with top of the normal range being about 900. I hope this helps.

[mdsfound]

I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.

[mdsfound]

Hi David, If you do not want to wait seventeen days to see the hematologist in Asheville, I can arrange a preferential appointment at one of our MDS Centers of Excellence. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. Please email me at ahassan@mds-foundation.org. I am happy to help.

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