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Viewing 15 posts - 1 through 15 (of 118 total)
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  • 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 1 year, 10 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 1 year, 10 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.


    Site Admin
    Moderator

    Hi Ray, Please email me at patientliaison@mds-foundation.org. I am happy to help.

    in reply to: neutropenia and working #32105

    Site Admin
    Moderator

    Dear Janice, Thank you for your inquiry. Your work environment does put you at risk for infection. You may want to consider a work re-assignment. The 5% reactive lymphocyte finding in your blood is difficult to interpret without the full context of your bone marrow abnormality. You should get more information once the bone marrow is completed. I also would encourage you to be evaluated at an MDS Center of Excellence. 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. I would refer you to the neutropenia section in Building Blocks of Hope. 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: Unanswered questions #32098

    Site Admin
    Moderator

    Dear Susan,

    I am saddened by your news and know how much you miss him. My prayers are with you and your family during this most difficult time and remember all the good times and memories you have to cherish. Hopefully another treatment and eventually a cure will result from our efforts here at the foundation.

    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 counts are abnormal, I would then make an appointment to see a hematologist.

    in reply to: MDS and spleen #32091

    Site Admin
    Moderator

    Hi Maureen, Splenectomy, or removal of the spleen, may be an effective treatment option for myelodysplastic syndromes patients with less than 10 percent immature blood cells and who do not respond to blood transfusions or initial treatment with drugs that suppress the immune system.

    The spleen is an organ that filters old red blood cells and platelets out of the blood stream. It also works to activate the immune system when an infection is detected.

    The spleen may be removed when it becomes so enlarged that it is destructive to red blood cells and platelets, when a hard blow to the spleen causes it to bleed, or if cancer spreads to the organ.

    Spleen removal is currently used to treat congenital erythropoietic porphyria, in which red blood cell proteins are not made properly, and congenital pyruvate kinase deficiency, in which patients do not produce a necessary protein to keep red blood cells alive.

    A small number of reports have suggested that the removal of the spleen is an effective treatment for myelodysplastic syndromes (MDS) patients with immune-related low platelet counts.

    in reply to: Newly diagnosed #32090

    Site Admin
    Moderator

    Hi Frances, Sherry Pratt Pratt9075@aol.com responded to your post above:
    Francis Kinder, do not be afraid of a stem cell transplant. I had one in Jan and I am in remission from MDS now. It is just a season you go through to be cured. Find a GREAT CRNTER OF EXCELLENCE WITH A GREAT TRACK RECORD and go there. Pratt9075@aol.com

    in reply to: New to MDS #32015

    Site Admin
    Moderator

    Dear Liz, 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. We want to make sure she is not being undertreated when there may be options to help her with her quality of life issues. 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. 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.

    in reply to: is a MDS Center of Excellence necessary? #31967

    Site Admin
    Moderator

    Thank you for your post regarding your husband’s health. A second opinion need not mean that you’re changing doctors, however; if you and/or your local hematologist wish to seek the advice of another hematologist who has particular expertise in MDS, a second opinion can be very useful in helping you and your preferred doctor to fine-tune your treatment plan. The MDS specialist can work closely with your local hematologist, who would manage the daily aspects of your husband’s care. For example, you may obtain lab reports every week or every several weeks, and visit the local doctor every month while keeping additional appointments with the MDS expert either on a scheduled basis (for example, every 6 months), when changes in your disease course occur, or when changes in treatment are being considered.

    in reply to: Cancer awareness wristband #31955

    Site Admin
    Moderator

    Hi James, Thank you for the post. We have MDS silicone wristbands here: https://www.mds-foundation.org/store/Bracelets. Help spread awareness and order an MDS wristband for a donation of your choice. To order, call the MDS Foundation office at 1-800-637-0839.

    in reply to: Need others #31944

    Site Admin
    Moderator

    Hi Devon, Thank you for your post. I know this is a difficult situation for you. Are you going to an MDS Center of Excellence? Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I can definitely connect you with other AML patients for support. If you would like to speak with another AML patient, please email me privately at patientliaison@mds-foundation.org with your contact information. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. It contains strategies and tips for patients living with MDS. 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.

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