Forum Replies Created
-
AuthorPosts
-
mdsfoundModerator
Hi April, Thank you for your inquiry. There are occasional familial cases of MDS, however, these are exceptionally rare. In cases such as this, I let other family members know that they should have annual bloodwork done and to watch their counts as an indicator. I hope this helps.
- This reply was modified 8 years, 5 months ago by mdsfound.
mdsfoundModeratorThough an all-cooked-food neutropenic diet may destroy needed nutrients, it is still generally recommended for MDS or other patients with severe neutropenia. Check with your treating physician to see what they recommend because the guidelines for a neutropenic diet vary by cancer center. Since our white blood cells help to fight infection, it is important to follow the USDA’s food safety precautions for people with cancer if your white blood cells are low: http://www.fda.gov/downloads/Food/FoodborneIllnessContaminants/UCM312761.pdf. For more information regarding diet and anemia and/or thrombocytopenia, email ahassan@mds-foundation.org.
mdsfoundModeratorHi Ravinda, Was she seen by one of our MDS Center of Excellence physicians? https://www.mds-foundation.org/mds-centeres-of-excellence/
mdsfoundModeratorHi Elaine, Is your husband seeing one of our doctors located at one of our MDS Centers of Excellence? https://www.mds-foundation.org/mds-centeres-of-excellence/
- This reply was modified 8 years, 8 months ago by mdsfound.
mdsfoundModeratorDear Maria, Thank you for posting information regarding your brother’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. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment except supportive care like transfusions or epogen (Procrit).
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 you can view here https://www.mds-foundation.org/bboh/. I hope this information helps.mdsfoundModeratorDear Joyce, 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. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. Your husband should be very carefully assessed before undergoing any treatment especially since a bone marrow transplant is not a benign treatment. Our MDS Center of Excellence will do a benefits versus risk analysis for your husband.
mdsfoundModeratorDear Laura, Thank you for your post. I would recommend that your husband seek a second opinion from one of our MDS Centers of Excellence especially in light of his being a kidney transplant recipient. Your husband should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment except supportive care like transfusions or epogen (Procrit). Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps.
mdsfoundModeratorFollowing is a link to our MDS Centers of Excellence by State https://www.mds-foundation.org/mds-centeres-of-excellence/. The MDS Foundation does not give this designation easily so you can feel confident that your grandfather will be in good hands. It is so important to get advice from top doctors in the field of MDS about what to do when diagnosed.
mdsfoundModeratorDear Carolina, We 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 on to ahassan@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I would also 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. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/.
March 17, 2015 at 8:26 am in reply to: 12 wks pregnant with 1st child and diagnosed high risk MDS #26668mdsfoundModeratorDear Mallissa Ann,
Thank you for your question regarding the recent diagnosis of MDS. Your case does present a number challenges, and is a rare situation indeed.We can not provide you with specific treatment recommendations as these are determined by a full review of your clinical data and a face-to-face evaluation. What we would suggest is that you consider a second-opinion with an MDS expert at one of the Centers of Excellence. The MDS centers in the UK are listed here https://www.mds-foundation.org/mds-centeres-of-excellence/. If you would also like me to assist by arranging a preferential appointment for you, please contact me at ahassan@mds-foundation.org. The most important first step is to confirm the diagnosis, which will then provide you with a better understanding of prognosis and what you might expect.
We would also suggest you seek consultation from a high-risk Obstertrics provider to discuss the detailed management of the pregnancy and the risks of infertility with treatment. Ideally, these two specialists would work together to manage your care.
Our heartfelt wishes for strength in working through this very difficult situation.
Best wishes,
Audrey- This reply was modified 9 years, 1 month ago by mdsfound.
-
AuthorPosts