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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 140 total)
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  • in reply to: MDS treatments #49229

    mdsfound
    Moderator

    Dear Clement, 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. 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/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

    in reply to: Has anyone seen Dr Alan List @ Moffitt Cancer Center #49096

    mdsfound
    Moderator

    Dr. Alan List at Moffitt Cancer Center, an MDS Center of Excellence, is world renowned in the field of MDS.

    in reply to: Shingles vaccine #48808

    mdsfound
    Moderator

    Only attenuated Shingles vaccines are recommended for patients who are immunocompromised – ask you provider before you get a Shingles vaccine. I hope this helps.

    in reply to: T8, MDS, PNH #48679

    mdsfound
    Moderator

    Dear Kathryn, Thank you for posting information regarding your health. 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 just to make sure you are not being undertreated. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/.

    in reply to: How to tell if Vidaza has stopped working #48678

    mdsfound
    Moderator

    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/. I hope this helps.

    in reply to: Bone pain #48677

    mdsfound
    Moderator

    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.

    in reply to: Pros n cons of having port #47402

    mdsfound
    Moderator

    Port placement requires a surgical procedure; IV access does not.

    in reply to: Vidaza Effectiveness–injection versus port #47401

    mdsfound
    Moderator

    A port is a very useful tool for both the patient and the healthcare team. A safe, suitable IV access site can be difficult to locate for some patients and the port can result in a more efficient access than an IV site which can also cause an injection site reaction which occurs more easily with an IV access, but would be very rare with a port. Using a port vs intravenous injection has no impact on the effectiveness of treatment.

    in reply to: Side effects of Aranesp #46927

    mdsfound
    Moderator

    Hi Kathy, For questions regarding Aranesp you can call their patient assistance hotline 1-888-427-7478. I hope this helps!

    in reply to: 5.5 months post transplant #46926

    mdsfound
    Moderator

    Dear Joseph, Thank you for sharing your update on your father’s health with us. Our prayers are with your father and your family during this difficult time. Hopefully another treatment and eventually a cure will result from our efforts. Most sincerely, The MDS Foundation

    in reply to: Our update #46798

    mdsfound
    Moderator

    Dear Melissa, 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/. We also have a wonderful educational resources available 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 5 months, 3 weeks ago by  mdsfound.
    in reply to: AML Cytarabine and Venetoclax Question #46797

    mdsfound
    Moderator

    Dear Shelley, 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. Many MDS patients get even third and fourth opinions – all from our MDS Centers of Excellence. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps.

    in reply to: Dangerous numbers #46796

    mdsfound
    Moderator

    Dear Pat, An average normal Red Blood Cell (RBC) count value for men is 15, and an average normal value for women is 13-14. When the Hgb/Hct falls below normal range, a patient is referred to as anemic. Severe anemia generally refers to Hgb values below 8 g/dL. If the Hgb falls patients may start experiencing shortness of breath, fatigue, and chest pain. Other symptoms that patients describe include lightheadedness, difficulty with memory or clear thinking, and less clear vision. In normal individuals, the total white blood cell count is approx. 4,000-11,000/mm. An ANC of less than 500/mm is severe neutropenia. The risk of developing a life-threatening infection increases as the ANC decreases, and the risk is especially high with an ANC below 500/mm. A patient with neutropenia who develops a fever should consider it a medical emergency because the body’s immune system may not be able to fight infection. If you experience signs and symptoms of a low hemoglobin or white blood cell count, make an appointment with your doctor. I hope this helps.

    in reply to: Grandma stopped treatment and tranfusions #46762

    mdsfound
    Moderator

    Dear Kim, Thank you for your post with information regarding your grandmother’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 just to make sure she isn’t being undertreated and that there may be options for her to have a better quality of life. 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 is a very difficult situation for you. Hopefully another treatment and eventually a cure will result from our efforts.

    in reply to: Emergencies #46615

    mdsfound
    Moderator

    Hi Pat, Yes, especially if your platelets are low which can cause excessive bleeding to occur since the clotting function of platelets may also be abnormally affected in MDS (thrombocytopathy).

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