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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 144 total)
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  • in reply to: MDs and bone pain #50134
    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: Neglect on doctor’s part #49902
    mdsfound
    Moderator

    Thank you for your post 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 if you have not done so already. It is not unheard of for some patients to get even third and fourth opinions from our designated Centers of Excellence. 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.

    in reply to: Has anyone had this happen with a biopsy #49884
    mdsfound
    Moderator

    Hi Pat, Thank you for your post with information regarding your husband’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. 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 Ext. 210.

    in reply to: WE *HATE* MDS :-(…. #49883
    mdsfound
    Moderator

    Hi Alan, The MDS Foundation can connect you with other MDS patients who have gone through the transplant process as well as provide you with material resources. Please contact us at 1-800-637-0839 Ext. 210. Happy to help!

    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 8 months, 3 weeks ago by mdsfound.
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