[mdsfound]

Dear Marcy, Thank you for your post. 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. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We hope you get the answers that you need but it is important to seek the opinion of a doctor who is an expert in the field of MDS. I hope this information helps.

[mdsfound]

Dear Malissa, You are correct, the IPSS is a tool to assess risk. The bone marrow biopsy will diagnose MDS and then we use the IPSS-R to assess risk.

[mdsfound]

Dear Nazina, Thank you for your post. 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. Some MDS patients get even third and fourth opinions. 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.

[mdsfound]

Hi Rich, 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. Dr. Dale Schaaar at Rutgers and Dr. Stuart Goldberg at Hackensack have this designation. 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]

Dear Debra, Chills can be caused by muscles contracting and relaxing rapidly. This occurs when the body is trying to generate heat, in order to raise the body’s core temperature. This can occur when the body has low hemoglobin levels – a protein that is found in red blood cells. A common symptom of this condition is chills without a fever. Accompanying symptoms may include pale complexion, fatigue, chest pain, dizziness, shortness of breath, and headaches.

I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. He has options and I don’t want to see him undertreated. 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 Theresa, The MDS Foundation includes information on assistance programs for those on MDS medications in our Insurance & Reimbursement Resources Guide for MDS Patients included in our Building Blocks of Hope Booklet. To request your free copy email patientliaison@mds-foundation.org. In addition, here is a link to other financial support services http://www.cancer.net/navigating-cancer-care/financial-considerations/financial-resources.

Also, this Patient Advocate foundation does have funds available if the patient is eligible https://www.copays.org/diseases/myelodysplastic-syndrome-and-other-pre-leukemia-diseases. I hope this helps.

[mdsfound]

Dear Alex, No there is not really a benefit from getting a related blood donor but of course blood donors are needed so we would encourage anyone who is able to donate.

[mdsfound]

Hi Nazina, I can help arrange your appointment with Dr. Mishra. Please email me at patientliaison@mds-foundation.org and I will get the appointment going for you. Best regards, Audrey

[mdsfound]

Hi Donna, Thank you for your post. Although you may not be seeing the doctor that we have designated at our MDS Center of Excellence, it is very likely that the doctors work as a team so you are good.

[mdsfound]

Thank you for your sharing information regarding your father’s health. 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. 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 us at patientliaison@mds-foundation.org.

[mdsfound]

Dear Rich, Thank you for sharing information regarding your health. Mount Sinai is an MDS Center of Excellence and Lewis Silverman who heads the MDS Dept. there is one of the top experts worldwide. I would definitely consult with him regarding your care. We always recommend that patients with MDS 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.

• This reply was modified 6 years, 3 months ago by mdsfound.

[mdsfound]

Dear Maria, Thank you for your post. 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/. If you would like a preferential appointment, the MDS Foundation can help assist you with this. Please email patientliaison@mds-foundation.org. 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 us. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.

• This reply was modified 6 years, 3 months ago by mdsfound.

[mdsfound]

Dear Barb, Flow cytometry sorts individual cells so that specific proteins on the surface of the cells can be identified. Because immature cells such as blasts have specific surface markers, flow can be useful as an approach for identifying the percentage of marrow blasts in the marrow. Because other types of cells in addition to blasts have abnormal expression of protein markers on their surface, flow may sometimes be an additionally useful method to help when findings of dysplasia are subtle or chromosome abnormalities are not present. I hope this helps.

[mdsfound]

Thank you for your post. Aranesp is a long-acting growth factor that can help build up the red blood cells with the basic goal of delaying/decreasing the need for RBC transfusions. 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]

EPO is used primarily in lower-risk, anemic MDS patients. It is recommended at least a 6- to 8-week trial of either EPO or darbepoetin. A rise in the hemoglobin of 1.5 g/dL or decrease in red blood cell transfusions are basic goals that you and your physician should be looking for by the end of this time period.

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