Myelofibrosis-Mayo Clinic

[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

[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.

[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.

[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

[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

[ziquxilai]

Hello Dr. Messa,: Thanks for the for the video! My sister (52yr old, China) has just diagnosed as myelobibrosis. The two main clue is one, she has enlarged spleen, 2nd, she had dry tab three times. Also her WC has been high for years. She has been admitted to the hospital last week, and now is waiting to know which stage she is in. Is bone merrow transplant a best idea? What is a proper diet for her now? her symptom is minimal. -Jane from Canada

[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

[wunderbarmom]

can this cause restless leg syndrome? She is 68 and has had it for a while now, has tranfusions etc.

[mayoclinic]

A tough question. Given RLS is very common in the general population we see many MF patients who have this difficulty. Whether MF increases the likelihood of RLS is tough to say. Certainly when you have RLS and you have another condition (such as MF), the second condition tends to make the RLS more problematic. I hope this helps.

[rosushka]

Thank you for caring Dr Mesa.

My 66 year old husband was diagnosed with MF in 2005. He has splenomegaly (x5) and JAK2+? Current medication is Hydroxycarbamide. Recently, he is suffering intense joint and bone pain in shoulders, legs and arms. He has been treated for gout for 17 years. However, 7 years ago the Consultant Rheumatologist said it may not be "gout" but something else? Could "gout" be an early symptom/sign of Myelofibrosis? Hoping for a cure soon for all MF sufferers. Rosa

[mayoclinic]

In general, gout can be associated with the cell turn over (turnover of white blood cells) in myelofibrosis. That being said the exact situation for your husband is best assessed during a consultation with a hematologist. All my wishes for a happy and healthy New Year. Dr. Mesa

[DavidMFink]

Thank you again for this video. I hope you can do these from time to time to update us all on any new developments. I went to the MPD Patient Symposium, but as a 44 year old relatively recent MF patient, its all so just confusing, and this video truly clarified so many things in my head. So can you please update when warranted?

Thanks,

David Finkelstein and all other MF patients aroudn the world

[dbarrowsmith]

Dr Mesa, thankyou for this post it has helped me and my family understand my condition much more. I am 38 and my consultant here in the UK recently contacted you about my case, I am about to start treatment soon. The information you give has helped my parents understand as they didnt understand and were very worried.

Its also good to "see" you after hearing so much about you. Thankyou for setting me off on my journey - I hope I make it to the end!

[Ditey55]

Thank you Dr Mesa for creating this video. I too have Myelofibrosis. Diagnosed Sept 2006. I was in a study at MD Anderson with Dr. V. It was not successful for me, but I will not give up. I have done well since the study 2 years ago till now. My platelet count has been dropping to 40's and 50's so I will be going back to Anderson soon to investigate another study. Your video has put so much information into a format that I think most could understand that has no idea what the diease is.

[mayoclinic]

I am very glad you found the video useful. We are firm believers at Mayo that one key weapon you need against the disease you face is accurate information. Soon I will be posting similar videos on the other Myeloproliferative Disorders of essential thrombocythemia, polycythemia vera, and chronic myeloid leukemia. My very best wishes for you.

[realthing40]

Thank you for this Dr Mesa. I have read a lot about the Mayo Clinic. We are in UK and my 38 year old husband was diagnosed 18 months ago. No treatment yet, we hope the progression is very slow and that his age will stand him in good stead. Wait and see approach so far from the hospital. We hope a cure is found soon.

[mayoclinic]

Dr. Ruben Mesa: I am glad the video was helpful. I am very hopeful that the future for myelofibrosis patients is very positive given the rapid improvements in the understanding of the disease, and the many new treatments currently undergoing testing in clinical trials around the world. I too pray a cure, or at least a treatment that put myelofibrosis into a remission will soon be found.

[lexuskbe]

Thank you for explaining MF so our family and friends understand what it is.

[blest2bpw]

Thank you so much, Dr. Mesa! I'm glad that you mentioned the itching because I haven't seen this symptom anywhere else and I have itching with my CIMF; I thought it was just in my head. I really appreciate you taking the time to explain this disease.

[2009LeeAnn]

Thank you! This explanation has helped a lot and the beauty of it is that I can come back and listen to it again should I forget something you've said or a new development occurs.

[asandstedt]

I now have a better understanding of the drugs they are testing.

[Dobermangela]

Many thanks Dr Mesa.

I now have a better understanding of JAK2 because of your explanation.

Angela MF