Myelofibrosis-Mayo Clinic

Mayo Clinic Dr. Ruben Mesa discusses the symptoms, treatment and research being conducted for Myelofibrosis.

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Science & Technology

Tags:

• Mayo Clinic
• Myelofibrosis
• Mesa

[atmaku]

hi Dr. Mesa. my mom has been diagnosed myelofibrosis about 2 years ago. she was in malaysia and i am currently in the united states. so i didnt know how her progress so far.

currently, what i noticed that her blood level decrease every month. and the latest, it has been only 3 weeks since the last time she go through blood transfusion in order to increase her blood level.

my question is, : what is my mother stage if currently her blood level drop to 5hb and approximately how long she has left?

[mayoclinic]

@atmaku - We are working to get you an answer on this.

[mayoclinic]

@atmaku - I forwarded your questions to Dr. Mesa and received the following response: Progressive anemia is a concerning problem in myelofibrosis. I would be happy to accept a question from your Mother’s doctors in Malaysia to help in any way I can.

If you would like to provide information to Dr. Mesa, I would be happy to pass it on to him. Thank you.

[mayoclinic]

@atmaku - I forwarded your questions to Dr. Mesa and received the following response: Progressive anemia is a concerning problem in myelofibrosis. I would be happy to accept a question from your Mother’s doctors in Malaysia to help in any way I can.

If you would like to provide information to Dr. Mesa, I would be happy to pass it on to him. Thank you.

[XsecretXfireX]

hello Dr. Messa my 53 year old mother just died of MF. my mother they say had undetected MF for about 15 years(so since i was born) or longer. two years ago we found it after they ruled out a disease she had as a child. she was unable to go a full week at one point with out maybe 2-3 transfusions. It got to the point where a Bone Marrow Transplant was her only way to survive because she was so weak during which time she also had a splenectomy and died of septic shock...what else could we do?

[mayoclinic]

@XsecretXfireX

My very sincerest sympathy for your loss. The options we have for myelofibrosis are increasing every day, never have there been more options in clinical trials. That being said if she were this ill even today our options are tough and incomplete. I hope for better options for MF patients for the future.

Ruben Mesa, MD

[mortero2005]

hi my name is Alexis from chile , my mom had Polisitemia vera and now she has mielofibrosis , how is possible that change.? , she s 62 , zorry my english s bad.

i wait understand me .

saludos.

espero alguna respuesta

[L919Jazzy]

Hi Dr. Mesa. My mom is 73 & has been treated for a blood disorder, now diagnosed MF, for 19 yrs. She did well, until earlier this year, on agrylin, now hydrea. She's severely anemic & getting transfusions. Spleen is estimated at 19 cm & causes great discomfort, constant sweats, trouble breathing. Doctor doesn't recommend surgery, but will start her on Rivlimid. Research that I have done on MF is disheartening. What are your thoughts on Rivlimid? Any direction you can give is most appreciated.

[mssundaisy]

Hello Dr. Messa I have polycythemia vera, and I'am trying to figure it out. Am I correct in thinking it is a rare form of cancer? I have to have blood remove at least once a year. I also had a heart attack caused by a blood clot. I'am 65 years old.

Will wait for your answer.

Thank you

Glenda

[mayoclinic]

I am sorry to hear of your sister's challenges. Determining what is the best course of action requires a confirmation that the disease is truly myelofibrosis, and assessing how threatening the disease is to her. Bone marrow transplant might be an option based on her youth, but I would suggest see a specialist in this area for coming up with the optimal plan tailored for her. Dr. Mesa