[mdsfound]

Dear Jason, Thank you for posting 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 in MDS for a second opinion. I don’t want him undertreated and there may be options for him to help him with his quality of life. In Chicago, we have a number of MDS Centers of Excellence that you can choose from. I am happy to arrange a preferential appointment on his behalf. 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.

[mdsfound]

Hi Roy, Familial cases of MDS are rare, and individuals with familial MDS are usually diagnosed with their disease at an earlier age (before the age of 50). Therefore, it is extremely unlikely that MDS can be passed to one’s children unless there is an established history of MDS, or a similar blood disorder such as acute myelogenous leukemia (AML), already diagnosed in more than one closely-related family member – a parent, aunt, uncle, or sibling. I hope this helps.

[mdsfound]

Dear Kathy, Thank you for posting. 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 haven’t done so already. In your post, you mention that you have seen a few experts. Some MDS patients go so far to even have third and fourth opinions all from our MDS experts. It might be a good time to have another expert weigh in on this for you. 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 me at patientliaison@mds-foundation.org.

• This reply was modified 5 years, 3 months ago by mdsfound.

[mdsfound]

Dear Joseph, Thank you for sharing your journey with MDS with us. 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 should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. I can also help arrange a preferential appointment for one of our MDS experts to see your father.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have wonderful educational resources that we can mail to you. 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 me at patientliaison@mds-foundation.org.

• This reply was modified 5 years, 3 months ago by mdsfound.

[mdsfound]

Thank you for your post 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. Some MDS patients get even third and fourth opinions all from MDS Centers of Excellence. 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 can also assist in arranging a preferential appointment at any one of our centers on behalf of your mother. If this is something that you would like us to do, please email patientliaison@mds-foundation.org. I hope this information helps.

[mdsfound]

As is the case with other MDS drugs, you may feel even worse before you feel better. You may not see any improvement in your mother’s health until you have taken azacitidine for at least 4 to 6 cycles (about 4 to 6 months). So it’s important to stick with the treatment to give the medicine a chance to work. Her doctor will monitor her during treatment and may test her blood more often due to aza lowering the number of blood cells in her bloodstream. The doctor will also support her with blood transfusions when necessary.

[mdsfound]

Thank you for your post with information regarding your boyfriend’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 in MDS for a second opinion. We do not give this designation to just anyone. He should be very carefully assessed before undergoing any treatment. You may also want to make sure that he is not being 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/. We can also help arrange a preferential appointment on his behalf. I hope this information helps.

[mdsfound]

Hi Lisa, Thank you for your post with information regarding your mother’s health. When you have 19% blasts you have MDS. When it reaches 20% it is Acute Myeloid Leukemia. 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. There are many drugs in the pipeline for those who have AML. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. If we can be of any further assistance, please email patientliaison@mds-foundation.org. I hope this helps.

• This reply was modified 5 years, 4 months ago by mdsfound.

[mdsfound]

Hi Carol, More information on luspatercept can be found in this recent press release: Celgene Corporation and Acceleron Pharma Announce Results of the Phase 3 MEDALIST Trial Evaluating Luspatercept in Patients with Myelodysplastic Syndromes at the ASH 2018 Plenary Session http://investor.acceleronpharma.com/news-releases/news-release-details/celgene-corporation-and-acceleron-pharma-announce-results-0. I hope this helps.

[mdsfound]

Hi Diane, Other MDS patients with mouth sores have found Biotene oral rinse helpful. There is also Magic Mouthwash – read more about it on this link https://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071. Make sure to let your treating hematologist know that you are experiencing same. I hope this helps.

[mdsfound]

Hi Donna, The MDS Foundation would love to help you create an MDS Support Group in the Houston area. Please email patientliaison@mds-foundation.org to discuss further. Thank you.

[mdsfound]

Dear Janice, I know this is a difficult situation for you. Some MDS patients seek not only second opinions but third and even fourth opinions all from our MDS Centers of Excellence. This way you can weigh all of your options. 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]

Hi Claire, Thank you for your post. Following is a link to our MDS Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. Here you can view the centers of excellence in SoCal. I am not sure if any are in the Kaiser network but I would check with your insurance just to confirm. 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. I hope this information helps.

[mdsfound]

Hi Joseph, Thank you for posting information regarding your father’s health. I know this is a difficult time for you and your father. If you would like to speak with someone who has gone through transplant or if you need anything at all, please do not hesitate to contact me at patientliaison@mds-foundation.org.

• This reply was modified 5 years, 4 months ago by mdsfound.

[mdsfound]

Dear Ray, Thank you for your post 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/. Fred Hutchinson is one of our designated centers of excellence. I would recommend either Dr. Joachim Deeg or Dr. Bart Scott. I hope this helps.

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