The Leukemia & Lymphoma Society - Fighting Blood Cancers
11 Replies Last post: Sep 24, 2009 8:21 PM by stavan  
kathydeang   35 posts since
Jul 23, 2009
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Jul 23, 2009 7:11 PM

If you have myelofibrosis

I had ET for 23 years, and then it turned to myelofibrosis when I was 43.  If you have myelofibrosis, or anything else I guess, learn how to read your labs.  Especially watch for the word "blasts".  If you even have one of them, you should get an opinion at a transplant facility.  My myelofibrosis turned to leukemia over a 4 month period, and my doctor didn't even notice until the lab called him!!  I asked him if anyone read my labs, and he said, "They are supposed to."  I don't know who "they" are, but I walked out and never went back.  I went to Mayo Clinic Scottsdale and was in the hospital for a month with induction chemo, and then another month for another round of chemo.  Neither of these put the leukemia in remission.  MD Anderson told me at that point I had very little hope and should try an experimental treatment.  I asked if it had ever worked to put leukemia in remission, and they said no.  They wanted me to take a JAK2 inhibitor, and I don't even have the JAK2 gene or mutation or whatever.  So, I went back to Mayo Clinic for a stem cell transplant, spending a third month in the hospital.  This did, thank God, put my leukemia in remission, and may eventually correct my other bone marrow issues as well.

 

Good luck with your journey.

DEE11   537 posts since
Mar 26, 2009
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1. Jul 25, 2009 3:22 PM in response to: kathydeang
Re: If you have myelofibrosis

Wow you have a story and you have been through so much.. i have the jak2 gene but they labeled me with PV however my whole left quard side can get intense with pain ,slight enlargement with spleen ,, and also alot of bone pain in legs.. Going for a bmb 8/11..I would like to know how you are feeling now ??We have another friend (living with pv and et) Emily who has been through the mill with ET. I wish you a lifetime of remission !!! Take care

DEE11   537 posts since
Mar 26, 2009
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3. Jul 26, 2009 3:39 PM in response to: kathydeang
Re: If you have myelofibrosis

My platlets were only slightly  elevated for yrs and my pcp would listen to my abd. and always said it sounded like someone singing lol. That was yrs ago.. Then when i went for a physical my new pcp notice an increase in hct. But i was under so much stress at the time i really did,nt buy the pv dx. My pcp wanted a bmb back then but the onc (who i left for many reasons) said i did,nt need one.Even thouogh my wbc was slightly elevated as well. With me slighlty elevated means high i tend to run low. When the pain in the left side got to be to much they did a cscan and noticed liver abnormalities as well as enlarged spleen. I have pain that brings tears to my eyes.in the left side. Hydrea use to help but not so much now. Plus my platlets seem to go to far down after taking hydrea for  a few months so i have to skip here and there.Now i have small amt blood in urine as well as ketones andi,m not a diabetic.So all this and i,m still waiting for my bmb. Was surpose to be 7/14 but was postponed after me skipping hydrea for a week.Needless to say this camper was,nt happy. but what can ya do ?So my new pcp is very good and is trying to figure out things.Personnally would you think bmb is the right move ?I know your not a doc .I value opinions from those who have been through what you have been through.Hey thanks for the ear(eyes lol) sry to dump my stuff but i think sharing can help each other.I,m so glad you feel good..are you still anemic ?I am thats the hard part. I,m usually perpetual motion but now i have learned to rest inbetween doing everything.Have a gr8  week Thank you

stavan   6 posts since
Sep 21, 2009
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4. Sep 21, 2009 9:40 PM in response to: DEE11
Re: If you have myelofibrosis

HI i am new this cite. 32 years old diagnosed about a month ago. I have to decide on treatment not sure about hydrea. Im very scared it will progress into leukemia. Im determined im not going to let this beat me. I read nothing positive about this illness.I guess prognosis depends upon symptoms. I to had et and transformed into myelofibrosis after taking anagrelide for 9 years. Anyone have this condition for more than 5 years and what meds are you taking

DEE11   537 posts since
Mar 26, 2009
Currently Being Moderated
6. Sep 24, 2009 5:58 AM in response to: kathydeang
Re: If you have myelofibrosis

Stavan do you have MF?Sry if you told us i,m not with it at the moment. Kathy yes the bmb was done and it said blasts%1 so i guess thats nothing thank god also i do have PV... no leukemia thank god. The issue with me is i believe spleen and liver sometimes the pain is so bad i cant even describe it.Been on hydrea everyday and my platlets are no longer crashing..but now i guess my body is getting use to it. The worse feeling is after eating i swear i,m going to pass out.Lasts for about an hour and the groin pain is terrible but i have been dealing with it....getting my brain ready for Dana Farber...I know you have been through alot and i pray you improve..sending you positive energy and prayers oh ya coffee too lol tata=D

DEE11   537 posts since
Mar 26, 2009
Currently Being Moderated
7. Sep 24, 2009 1:39 PM in response to: DEE11
Re: If you have myelofibrosis

cathy i was lead to believe that %1 blast is ok ... why did you say it should be looked into ??? just curious. Not doubting you jst need info ty

margot   1 posts since
Sep 24, 2009
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10. Sep 24, 2009 5:54 PM in response to: kathydeang
Re: If you have myelofibrosis

i am 50 years old and was diagnosed with myelofibrosis this past january. i had been misdiagnosed with ET for 10 years ago (discovered after i had surgery for colon cancer. 10 year survivor from cancer. i obviously inherited some exciting genes!) but was asymptomatic until last summer when my spleen really started to grow and i became anemic. my local doc finally put 2 and 2 together and came up with the right diagnosis. fired the local doc. went to mayo clinic in MN to get treatment options. there i learned that i'd never had ET....it has always been myelofibrosis....going back as far as 1988 which was the year i happened to get some blood work done. i would strongly encourage anyone with this disease to go to the nearest mayo clinic. they really have cutting edge knowledge and treatment. like many, i am still too 'healthy' for any of the treatments. my spleen is massive and does cause some discomfort but i can live with that. my liver is a little enlarged. i have lots of lytic lesions so i have some bone pain. and i have fatigue from the anemia. but, i feel super lucky. i ride my bike to work everyday and stay extremely active. i have found that giving in to the fatigue only makes it worse. i get blood work done every 3 months and send it to mayo for review. they have been great. i'll go there once a year for check ups. in the meantime, i'm hoping their research team comes up with the treatment to bump this disease into remission. i'm also thrilled to hear the stories of folks who have had BMT and are still hear to write about it! inspiring and helps me stay hopeful. my best to everyone.

stavan   6 posts since
Sep 21, 2009
Currently Being Moderated
11. Sep 24, 2009 8:21 PM in response to: DEE11
Re: If you have myelofibrosis

Yes I Have MF. I dont have any blasts on my bmb and no abnormal karotyopes i guess that mean chromosomes. I just started taking hydrea yesterday because they think anagrelide caused the fibrosis on my marrow. my liver is not enlarged and spleen is only mildly im praying this medication will bring platelet to normal and maybe that will stop marrow from scarring any further. I had an appt at mayo they said not to be concerned right now. I giving this to God because only he can take care of it and praying the clinical trials they have will bring good results soon.

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