[mdsfound]

Hi Mark, Unfortunately, MDS patients with a low white blood cell count are highly susceptible to getting infections. Your low platelet count is a result of your MDS not due to your urinary tract infection.

[mdsfound]

Hi Ed, Please email me at patientliaison@mds-foundation.org so that I can forward some helpful information to you. Also see more information on MDS and Agent Orange here: https://www.ashclinicalnews.org/features/agent-orange-hematologic-malignancies-fog-war-still-hovers/.

[mdsfound]

Dear Ross, A mom of an MDS patient started a pediatric MDS Facebook support community. Here is the link https://www.facebook.com/Familiesofpediatricmds/. I can also connect you to the wonderful women who is trying to make a difference in the world of pediatric MDS. Please message me at patientliaison@mds-foundation.org and I will e-introduce you to each other. I hope this helps.

[mdsfound]

Dear Rebecca, Chills are 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. If we can be of any further assistance, please do not hesitate to contact us.

[mdsfound]

Hi Sandra, Here is more information on the trial for you https://www.moffitt.org/clinical-trials-and-studies/clinical-trial-18939. I hope this helps.

[mdsfound]

Dear Timothy, There are occasional familial cases of MDS, however, these are exceptionally rare. The genetics of MDS are complex, and the influence of inborn and inherited changes is either subtle or non-existent. In cases where there is an established history of MDS in the family, I always let other family members know that they should have annual bloodwork done and to watch their counts as an indicator. If your counts are abnormal, I would then make an appointment to see a hematologist. The Mayo Clinic in Jacksonville is not too far from St. Augustine so I would recommend that you go there. 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.

• This reply was modified 6 years, 10 months ago by mdsfound.

[mdsfound]

Dear Lisa, Chills are 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. If we can be of any further assistance, please do not hesitate to contact us.

• This reply was modified 6 years, 11 months ago by mdsfound.

[mdsfound]

Dear Lisa, You can search the NIH registry of Aplastic Anemia clinical trials underway in the USA and beyond at http://www.clinicaltrials.gov. A doctor who also specializes in AA can also help determine which course of action would be best on behalf of your mother.

[mdsfound]

Hi Raphel, Welcome to our Message Board. More info on the ASTX727 trial can be found on these two links: https://clinicaltrials.gov/ct2/show/NCT02103478?term=ASTX727&rank=1 and here https://www.mds-foundation.org/wp-content/uploads/2014/11/ASTX727-01_MDS_FastFacts-v3.pdf. I hope this helps.

[mdsfound]

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/. 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]

Several features are often shared by patients with 5q-syndrome, although some variability exists in the clinical course and presentation. These features are: relatively good prognosis with long survival and a lower chance of developing AML; chronic anemia requiring red blood cell transfusions; elevated platelet count; and distinct pathologic features on bone marrow specimens, especially involving the platelet precursor cells, megakaryocytes. It has been found that the drug lenalidomide is highly effective for patients with the 5q- subtype of MDS.

[mdsfound]

Hi Judith, In our next MDS Foundation Newsletter, set to print within the next week or so, we have included an article ‘Nutritional Considerations in MDS’. If you email me at ahassan@mds-foundation.org, I can send you a sneak peak before publication. I hope this helps.

• This reply was modified 8 years, 5 months ago by mdsfound.

[mdsfound]

Hi Roger, The MDSF has prepared a Guide to Assistance Programs for insurance and reimbursement resources for MDS patients. Please email ahassan@mds-foundation.org with your postal address and we will be happy to send it out to you. In the meantime, I would call Diplomat Specialty Pharmacy toll free 1-877-977-9118. They provide clinical and reimbursement solutions for MDS patients. They have a dedicated team to help patients gain access to required medications.

[mdsfound]

Hi Maria, Thank you for your post. I would recommend that you take your brother-in-law to one of our Centers of Excellence in MDS for a second opinion just to make sure he is not being undertreated. 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 at 1-800-637-0839.

• This reply was modified 8 years, 5 months ago by mdsfound.

[mdsfound]

Hi Mike, 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. 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 ahassan@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 at 1-800-MDS-0839.

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