[mdsfound]

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 4 years, 11 months ago by mdsfound.

[mdsfound]

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.

[mdsfound]

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.

[mdsfound]

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.

[mdsfound]

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).

[mdsfound]

Hi JoAnn, Some MDS patients have reported excessive sweating. It is best to let your husband’s hematologist know so that he can help determine the cause and what options he may have to help.

[mdsfound]

Dear Andrea, Thank you for your email. I know this is a difficult situation for you and I would recommend that you take your mother 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/. At UCLA, I would recommend Dr. Gary Schiller and at Mayo, Dr. Jeanne Palmer.

• This reply was modified 4 years, 12 months ago by mdsfound.

[mdsfound]

Dear Claranne, When you have a low platelet count, the risk of bleeding may become evident as nosebleeds, gum bleeding, blood in the urine, or tiny purple spots under the skin. When beginning Vidaza treatment it is expected that your counts may get worse before they get better. This happens because the hypomethylating agent is deleting those cells that are not doing their job, however, in the very beginning some of the good cells get caught up in the deletion process. This is an indicator that the drug is actually working. Typically it takes between 4-6 cycles to see an increase in your counts. It also takes time for the Procrit to kick in. Hopefully your nosebleeds will subside once the medicine kicks in giving a boost to your bone marrow.

[mdsfound]

Hi Janice, 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. 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. If we can be of any further assistance, please do not hesitate to contact us.

[mdsfound]

Hi Pat, It’s important to talk to your doctor about any vitamins or supplements, any drugs you are considering.

[mdsfound]

Dear Linda, Thank you for sharing information regarding your husband’s health. Huge breakthroughs have been made in recent years in regard to understanding the genomic landscape for AML and how to best manage this rare cancer. Syros has promising clinical data from their ongoing Phase 2 Trial of SY-1425 in Genomically Defined AML and MDS Patients…Tolero Pharmaceuticals also has an ongoing Phase 2 Zella 201 Study… Daiichi Sankyo has a new drug application for FLT3 Inhibitor Quizartinib for Treatment of Patients with Relapsed/Refractory FLT3-ITD AML… and Agios has the Ivosidenib Phase 1 Dose-Escalation and Expansion Trial in IDH1 Mutant Positive Patients with Newly Diagnosed Acute Myeloid Leukemia (AML) Ineligible for Standard Treatment and Myelodysplastic Syndrome (MDS)…just to name a few.

[mdsfound]

The need for vitamins and iron differs from person to person with MDS. MDS patients who have chronic anemia and require frequent blood transfusions often suffer from iron overload. In these cases, taking extra sources of iron by mouth can be harmful so in this case a multivitamin formulated without iron can be taken if you so wish. This may sound strange since most people equate anemia with iron deficiency, but in MDS, it isn’t the iron that’s missing, it’s the red blood cells themselves, so taking iron supplements doesn’t help and may have a negative effect. It is best to consult with your treating hematologist before taking any iron or vitamin supplements.

[mdsfound]

Hi Donna, We would love to help create an MDS Support Group in Houston. Please contact me at 1-800-637-0839 at Ext. 210 so that we can discuss further. Thank you, Audrey

[mdsfound]

Hi Daniel, You are going to an MDS Center of Excellence so you are in good hands. I can connect you with other transplant survivors in case you have any questions regarding the process for support. There are also other treatment options just in case Vidaza isn’t working for you any longer. Email patientliaison@mds-foundation.org.

• This reply was modified 5 years, 1 month ago by mdsfound.

[mdsfound]

Dear Subra, 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.
Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.

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