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Posted by @jfinlay in Cancer, Dec 11, 2011

I have recently been diagnosed with a rare form of leukemia, myelofibrosis, and wondering who else out there might have this leukemia? I took hydroxurea for a while but eventually had to have my spleen removed. I'm now scheduled to see Dr. Tefferi at the Mayo Clinic in Minnesota. Worried and anxiety through the roof. All comments welcomed.

Tags: Cancer


Posted by @cathyd, Jun 24, 2012

Hi husband carries this diagnosis along with myelodysplastic syndrome. This has all been pretty recently discovered and all very confusing getting different answers everywhere we go. I am wondering how you are and your symptoms and treatments. Thank you..


Posted by @jfinlay, Jun 24, 2012

Hello Cathy.
Sorry to hear of your husbands's diagnosis. I was diagnosed 11 months ago and it's been a roller coaster ride. Some good days, then bad days. I took hydroxurea for a while due to an enlarged spleen, but it didn't help so last October I had a splenectomy. Then in February of this year I went to the Mayo Clinic in Minnesota. I saw Dr. Tefferi. I really liked him, and he was encouraging. He put me on an oral chemo (Revlimid). It brought all my blood counts down, which was expected. My local doctor had to take me off due to the white cell count getting too low. I took the chemo for 28 days (5 mg) and I've been off for 7 weeks. My counts had started coming up, but last week the platelets went back down. So, with all that being said, I've decided to try an alternative treatment, hopefully in early July. Rather than me try to explain this treatment, I'll give you several word to google and a website to go check. I'm skeptical, but I've got to try it. Here's the website and words:
Johan Boswinkel
I'll be going to California to get this treatmen, and I'll let you know what happens.
I'll also be praying for your husband and you.
You can reach me at if you like.
God bless.


Posted by @memy, Jun 28, 2012

Hello John!
I am MImi McGuire from Southeast Louisiana, and I, too, have been recently dx'd with myelofibrosis. I am here to help you with any Q's you may have. I came to have MF via the Polycythemia vera which I had for 15 yrs. It's sort of the natural of the slow growing MPN's that we both share. I breezed thru the PV and am doing great so far with MF. I take 1500 mg's of Hydrea, a chemo drug to control my blood and the counts. My counts are perfect presently--for the past 2 months. I appreciate your looking into other remedies for healing aids and kudos to you for doing so.
Do u know how u came abt to have MF--like was it from another MPN that u had in the past (as mine did). I stay in touch with other MF patients via Robert Tollen's MPD digest that is published everynight and it is full of different links to read abt from A to Z and I highly recommend it. There is one area on Mr Tollen's digest devoted to just MF discussions which I so appreciate and have learned so much from. Mr Tollen is also a patient of MF and is very accessible to all all of us In fact, he listed your post on his digest this evening. My email is open to the public and feel free to email me AT ANY TIME. I also keep up with friends I have had for over 7 yrs via the LLS ( The Leukemia and Lymphoma Society). Those folks are like my extended family. The site, itself, is open for reading to the public and should u like to make a post, u would then have to register--no fees. Also, just for having a form of leukemia (as u and I both do have) that entitles you to $100 annually from the LLS. All u have to do is be a member of LLS.
Every case of MF is unique unto itself--all cases r treated according to that patient's needs. The most important thing for you to do is have a doc that you totally trust with your life and that he/she runs CBC (blood tests ) on you monthly--sometimes weekly as case may be. I get a copy of all my lab work for comparison from month to month--it's quite handy to have.
MF is not a death sentence--it is a manageable disease. As I mentioned earlier, each case of MF is different from the next.
I wish you great health and feel free to email me ANYTIME.
My other Q's that I had are the same as Cathy's.
Best Wishes,


Posted by @gouldh, Jun 29, 2012

Hi John, I've had PMF for 12 years and was told at diagnosis that I had three to five years to live. So, first order of business--don't obsess about all the bad things you'll hear--not that they can't come true, but that you've got plenty to be thankful for. I, too, have had my spleen removed and presently am on HU to moderate my increased platelets and WBCs. I get weekly CBCs to monitor those counts. I've had numerous other challenges. If you're interested, there is an initiative for MPN patients through the company 23andMe by which MPN patients spit in a tube and thus send their DNA to the company in an effort for worldclass researchers (oneof them being Ruben Mesa of Mayo Clinic) to try to find more treatments or cures. My daughter, who works for the company, initiated the project. For more on it, read my post, "My Daughter, Myelofibrosis and Me" at my Good fortune. Harvey Gould


Posted by @djr, Jan 4, 2013

I do not know why you had the spleen removed. As far as I know and I am not a doctor there are drugs to help control spleen enlargemernt. Do you understand why you spleen was enlarged? I have had myelo-fibrosis for several years and I hope I can shed some light on your concerns.

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