[mdsfound]

Hi Tereze, Dizziness and fatigue are potential side effects of azacitidine. Be sure to talk to your doctor about the side effects you are experiencing.

[mdsfound]

Dear Karen, Thank you for your email 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. An MDS expert can then determine the best treatment to help with her 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 helps. If you need any additional information, please email me at patientliaison@mds-foundation.org.

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

[mdsfound]

Hi Mark, You may want to consider seeking a second opinion from one of our MDS Centers of Excellence if you have not done so already. Many patients seek even third and fourth opinions. If you would like help in arranging a second opinion, please contact patientliaison@mds-foundation.org and we will be happy to help.

[mdsfound]

Hi Don, If you cannot make it to the mainland, there is an MDS specialist who is a member of the MDS Foundation. His name is Dr. Jonathan Cho and he is in Honolulu. Please message patientliaison@mds-foundation.org if you need his contact information or if you have any questions.

[mdsfound]

Hi Jim, If your wife’s blasts are nearing the 20% range this shows a sign of progression to AML. Are they considering another transplant?

[mdsfound]

Hi Cecile, Read more here https://www.mds-foundation.org/recent-news/ about the INSPIRE Trial this may be an option for you.

[mdsfound]

Dear Nancee, Have you considered getting a second opinion from one of our MDS Centers of Excellence? Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. Please email patientliaison@mds-foundation.org if this is something that you are considering. We can arrange a preferential appointment for you.

[mdsfound]

Dear Victoria, Thank you for your post. Please make sure to sign up for our MDS Foundation Mailing List. The MDS Foundation has 2 publications to provide healthcare professionals and patients from around the world with timely information. If you would like to be included in future mailings, then please subscribe to receive up-to-date information on clinical trials, research and news by submitting the form on this link https://mds-foundation.us2.list-manage.com/subscribe?u=e4f8c6774f935c5e98accb9e6&id=d38f8bc841&MERGE0=&subscribe1=GO. Please note that you must enter your physical address to receive the MDS News (only your email is required for the e-newsletter).

[mdsfound]

Dear Miriam, Thank you for your post. I know this is a difficult situation for you and I know that you have many questions. I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. Some patients get even third and fourth opinions. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. If you have any further questions or need help in any way, please email patientliaison@mds-foundation.org. I hope this information helps.

[mdsfound]

Hi Lisa, Thank you for your post regarding your mother’s health. The chemo that they may be referring to could be Vidaza or Dacogen. They are not chemotherapy in the traditional sense – they are hypomethylating agents. She will not lose her hair for instance. I know many patients on this treatment regimen who are having a better quality of life. I hope this helps. If you need any additional information, please email me at ahassan@mds-foundation.org.

[mdsfound]

Hi LeAnn, I would suggest getting a second opinion. Are you close to New York? There is a great MDS transplant doctor in NYC. His name is Sergio Giralt and he is at Memorial-Sloan Kettering Cancer Center. If you have any further questions, please email me at ahassan@mds-foundation.org. I hope this helps.

[mdsfound]

Dear Jayanta, Thank you for your post. We have two MDS Centers of Excellence in India:

Tata Medical Centre
Laboratory Haematology, India
Deepak Kumar Mishra, MD

Tata Memorial Hospital
Department of Medical Oncology, Parel, India
Purvish Parikh, MD

I would recommend that you seek a second opinion with either of the two MDS experts mentioned. If you have any further questions, please email me at patientliaison@mds-foundation.org.

I hope this helps.

[mdsfound]

Dear Laraine, Only Sylvester Cancer Center in Miami was given an MDS Center of Excellence designation. The Chairman of our Foundation, Dr. Stephen Nimer, is at the Miami center. A lot of MDS patients who are not near any of our MDS centers will go to one once a year. There they will find the best treatment plan and then they can have their local hematologist, who may be a mile down the road, carry out the treatment that the expert determines would be best. I hope this helps.

[mdsfound]

Dear Laraine, 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/. In the meantime, you can also view this video https://www.mds-foundation.org/you-and-mds/. I hope this information helps.

[mdsfound]

Dear Ray, It may be that the high white blood cell count and neutrophils is likely from steroids which are being used for treating the GVHD. It is difficult to know without more information.

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