[mdsfound]

Hi Stephanie, Email me at patientliaison@mds-foundation.org. Thank you.

[mdsfound]

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. 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 are also happy to arrange the appointment on your father’s behalf. If this is something that you would like us to do, please email patientliaison@mds-foundation.org.
I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

• This reply was modified 5 years, 11 months ago by mdsfound.

[mdsfound]

Dear Ceyhan, Thank you for your email 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. 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 in Turkish here: https://www.mds-foundation.org/wp-content/uploads/2015/11/BBOH_Handbook_A4_TRK_11.12.15_single_ebook.pdf.

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.

[mdsfound]

Dear Marilyn, A sign of transgressing from MDS to AML would be the rise in your blast count (immature white blood cells). An increase to 20% would mean AML while 19% is still MDS.

[mdsfound]

Dear Darlene, Bone and joint 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. 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/. I hope this information helps.

[mdsfound]

Hi James, Thank you for your question. There is no connection with MDS and Guillain Barre Syndrome.

[mdsfound]

Hi Walt, Not too long ago, we had an oncology dietician speak at one of our events. If you email me at patientliaison@mds-foundation.org, I can provide you with her notes and presentation. In addition, we include nutrition information in our Building Blocks of Hope resource.

[mdsfound]

Dear Greg, 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. I see you have been to Dana Farber but many patients seek third and even fourth opinions. Happy to arrange a preferential appointment should you wish to do this. Please email patientliaison@mds-foundation.org. 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.

[mdsfound]

Dear Jenny, Thank you for your post. I would definitely seek a second opinion from an MDS expert. You have many questions and it is understandable that you don’t want to be undertreated. I would recommend that you go 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/. I hope this information helps.

[mdsfound]

Dear Philip, A nursing home stay is not supportive care for someone who has MDS unless they did not have a caregiver and were not ambulatory. There are treatments available but it is important to be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. 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. 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.

[mdsfound]

Hi Philip, Our Patient Summary Guide including the latest scientific information from our recent 14th International Symposium on MDS in Valencia, Spain is now available on our website https://www.mds-foundation.org/wp-content/uploads/2017/09/Patient-Summary-MDSF-Valencia-Symposium-2017-1.pdf. I would also sign up to receive mailings from the MDS Foundation here: https://mds-foundation.us2.list-manage.com/subscribe?u=e4f8c6774f935c5e98accb9e6&id=d38f8bc841&MERGE0=&subscribe1=GO. The MDS Foundation always publishes literature highlights of the latest research studies in its MDS Newsletter https://www.mds-foundation.org/newsletters/. In addition, a summary of the latest research from the American Society of Hematology under the auspices of the MDS Foundation can be found here: https://www.mds-foundation.org/wp-content/uploads/2018/02/ASH-2017-Patient-Summary-Final.pdf. I hope this helps.

• This reply was modified 6 years, 1 month ago by mdsfound.

[mdsfound]

Patients with MDS should contact their hematologist before scheduling dental procedures or surgeries. Because neutropenia or thrombocytopenia can develop during the course of MDS, you could be at risk for serious infection or excessive bleeding during or after dental procedures or surgery. Your hematologist should work with your dentist or surgeon to decide whether you need antibiotics to prevent infection, or whether one or more platelet transfusions or additional medications might help to reduce the risk of bleeding. In the case of a patient requiring a platelet transfusion, it may be prudent for the transfusion to be given the morning of the procedure, since platelets don’t survive long. Certain medications can be given as a swish and spit solution to help form blood clots if there is excessive bleeding in the mouth. If inpatient or outpatient surgery is required, ask your hematologist whether the risk of a procedure or surgery outweighs the potential benefits. If this is the case, your physician will tell you the concerns and discuss the alternatives. For example, if you were to undergo an elective dental procedure, such as routine teeth cleaning, with a very low platelet count, the potential risk of substantial bleeding would likely outweigh potential benefits.

[mdsfound]

Dear Jennifer, 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 go to one of our Centers of Excellence in MDS for a second opinion. She may be having an adverse reaction to one of her medications. For her mouth sores, Biotene oral rinse or Magic Mouthwash Rx can help. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this helps.

[mdsfound]

Hi Mark, I would check with your hematologist. I recently spoke with a patient who complained of numbness in his feet. His hematologist had a Vitamin B12 and folic acid test run and the tests came back with his B12 at <2000 with top of the normal range being about 900. I hope this helps.

[mdsfound]

Dear Iliana, 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.

[Author]

Posts