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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 15 posts - 1 through 15 (of 127 total)
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  • in reply to: My Homestretch Legacy #52955
    Site Admin
    Moderator

    Dear Kathy, It saddens us all to hear about this difficult time in your life. It’s also very admirable of you to be thinking of supporting others during this most challenging time. Hopefully, another treatment, and eventually a cure, will result from our efforts. Most sincerely, The MDS Foundation

    in reply to: Thank you to the MDS Foundation #52890
    Site Admin
    Moderator

    Dear Rita, We were saddened to hear the news of Stephen’s passing and know how much you miss him. Our prayers are with you and your family and remember all the good times and memories you have to cherish. Hopefully, another treatment, and eventually a cure, will result from our efforts. Most sincerely, The MDS Foundation

    Site Admin
    Moderator
    in reply to: Familial MDS… Hereditary? #52440
    Site Admin
    Moderator

    Thank you for posting Pam. For those who missed out or would like to revisit this webinar, please view it here

    in reply to: Vidaza induced remission…stop Vidaza and watch? #52439
    Site Admin
    Moderator

    Hi Kathie, Thank you for posting. I know this is a difficult situation for you and your husband and I would recommend that you seek a second opinion from one of our Centers of Excellence in MDS. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/.

    in reply to: MDS to AML=No hope? #51372
    Site Admin
    Moderator

    Hi Wen, Thank you for sharing information regarding your father’s health. I know this is a difficult time for you. The MDS Foundation has created an AML resource intended for patients with AML view here https://www.mds-foundation.org/what-is-aml/. Here you will find expert advice. I would also recommend that you take him 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/. Drs. Karen Yee and Rena Buckstein are both in Toronto. I hope this helps.

    in reply to: Mottled rash all over body #50855
    Site Admin
    Moderator

    Hi Janet, 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. Please email me at ahassan@mds-foundation.org and I will be happy to arrange a preferential appointment for you to see Dr. Peter Greenberg at Stanford. I look forward to hearing from you. Best, Audrey

    in reply to: MDS bone and muscle pain #50565
    Site Admin
    Moderator

    Dear Marcy, I know this is a difficult situation for you. Bone pain is a symptom that many patients experience with MDS. This can be due to lack of oxygen to the muscles, an immune component to MDS much like arthritis. However, good to hear that your transfusion burden has lessened.

    Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/, if you are interested in seeking a second opinion. 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.

    in reply to: MDS and Covid-19. Getting Vidaza Injections #50494
    Site Admin
    Moderator

    Hi Owen, Thank you for posting and sharing your recent experience getting your treatment during this most challenging time. I have a quick question for you. If you would email me at ahassan@mds-foundation.org it would be greatly appreciated. I look forward to your email. Best, Audrey

    in reply to: Dehydration MDS Patient #33989
    Site Admin
    Moderator

    Hi Neri, Thirst isn’t always a reliable early indicator of the body’s need for water. Many people, particularly older adults, don’t feel thirsty until they’re already dehydrated. That’s why it’s important to increase water intake during hot weather or when you’re ill.

    Dehydration can lead to serious complications such as low blood volume shock (hypovolemic shock). This is one of the most serious, and sometimes life-threatening, complications of dehydration. It occurs when low blood volume causes a drop in blood pressure and a drop in the amount of oxygen in your body.

    As you age, your body’s fluid reserve becomes smaller, your ability to conserve water is reduced and your thirst sense becomes less acute. These problems can be compounded by chronic illnesses, and by the use of certain medications. Older adults also may have mobility problems that limit their ability to obtain water for themselves.

    I hope this helps.

    in reply to: OK to have radiation treatment for skin cancer? #32977
    Site Admin
    Moderator

    Dear Hope, In some patients who have received radiation therapy for a prior cancer, the bone marrow is damaged by the treatment itself, resulting in MDS, and this is called secondary MDS. Secondary MDS occurs in a minority of patients treated with these drugs but higher cumulative doses can increase the chances of its development. Patients with secondary MDS generally have a worse prognosis compared to MDS patients who have no prior exposure to radiation (“de novo MDS”). Because MDS typically develops at least 5-10 years after treatment with radiation and because your father has low risk MDS, I believe he has de Novo MDS. What has his treating hematologist determined?

    • This reply was modified 3 years, 7 months ago by Site Admin.
    in reply to: High Risk MDS/ AML #32952
    Site Admin
    Moderator

    Dear Shaveta, Thank you for your post. 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.

    In India we have two MDS Centers of Excellence: Tata Medical Centre in Kolkata and Tata Memorial Hospital in Mumbai. 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.

    in reply to: MDS and Rheumatoid Arthritis #32614
    Site Admin
    Moderator

    Dear Lori, Thank you for your post with information regarding your husband’s health. 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 any institution or doctor. It’s important to make sure he is not being undertreated and our MDS specialists will help weigh his options to help him with his quality of life. 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.

    • This reply was modified 3 years, 8 months ago by Site Admin.
    in reply to: hb not increasing #32141
    Site Admin
    Moderator

    Dear Kiruthika, 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 helps.

    in reply to: MDS and spleen #32140
    Site Admin
    Moderator

    Dear Candy, Thank you for your post. I know this is a difficult situation for you and I would recommend that you take your husband 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 helps.

Viewing 15 posts - 1 through 15 (of 127 total)

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