The Leukemia & Lymphoma Society - Fighting Blood Cancers
37 Replies Latest reply: May 16, 2013 12:34 PM by memy RSS

If you have myelofibrosis

kathydeang Registered Users
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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.

  • Re: If you have myelofibrosis
    DEE11 Registered Users
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    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

    • Re: If you have myelofibrosis
      kathydeang Registered Users
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      Dee, I am feeling great, now, thanks for asking.  I am 125 days past my stem cell transplant.  All i can tell  you is bone pain and spleen enlargement are signs of myelofibrosis, but they may be signs of PV, too.  I was also very anemic when diagnosed with myelofibrosis.  I never had any symptoms with ET except when I was diagnosed.  At that time my platelet count was 1.4 million.  It came down with no treatment, as Mayo clinic did not want to treat because I was 28 years old and otherwise healthy.  I hovered between 650,000 and 850, 000 for 20 some years until I was diagnosed with myelofibrosis.  My spleen ended up the size of a football, so if yours is just slightly enlarged, maybe it is something else...

      • Re: If you have myelofibrosis
        DEE11 Registered Users
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        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

        • Re: If you have myelofibrosis
          stavan Registered Users
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          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

        • Re: If you have myelofibrosis
          kathydeang Registered Users
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          Dee, did you ever have a bmb and how are you??

          • Re: If you have myelofibrosis
            DEE11 Registered Users
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            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

            • Re: If you have myelofibrosis
              DEE11 Registered Users
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              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

              • Re: If you have myelofibrosis
                kathydeang Registered Users
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                Yikes, everyone bases thier beliefs on their own experiences, right?  And I have never had good luck with blasts -- I have none and then all of a sudden I have two (I never had just one), and then a few months later I have 16 or more.  That is what happened to me, my first hemotologist wasn't concerned about the blasts.  Or rather, HE DIDN"T PAY ATTENTION.  I said, Do you even look at my labs?  And he said, They are supposed to.  They?????????  Anyhow, Dee, I don't want to scare you, because they did tell me before transplant that anything under 4% blasts would be considered remission, and when I confronted my first doctor, he said having some blasts was normal.  HOWEVER, when I went to Mayo, and was pretty sure my myelofibrosis had switched to leukemia while everyone was sleeping, I said to him, having myelofibrosis, shouldn't I have become a critical care patient the second blasts showed up in my blood, and he said YES.  I can't remember, Dee, if you have MF or ET, but I do remember you were going to a PCP.  For sure find a GOOD hemotologist, but, if it were me with MF and I had one blast, I would get affiliated with a transplant facility ASAP (use one of their docs if you have one near you), because they will watch you and jump on it before it makes a change to leukemia.  Again, I don't know for sure the odds of ML jumping to leukemia, and since mine did, it makes me wish you would be very proactive on this.  But, my first hemotolgist said he had patients who had had myelofibrosis for decades and not turned to leukemia...I hope you are in that group!

                 

                BTW, yesterday was my 6 month stem cell transplant anniversary.  No sign of leukemia, and they say in a year or so I might see great improvement in the myelofibrosis.  So, get a good doc and hope for the best!!

                 

                Kathy

                • Re: If you have myelofibrosis
                  kathydeang Registered Users
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                  Dee, I just re-read your post.  You have PV.  I don't know a darn thing about that.  So take everything I am saying with a grain of salt.  i don't know that PV skips to leukemia like myelofibrosis can...in fact, it probably doesn't, so...maybe you are fine with 1% blasts -- go to a doc and find out!

            • Re: If you have myelofibrosis
              stavan Registered Users
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              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.

  • Re: If you have myelofibrosis
    margot Registered Users
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    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.

  • Re: If you have myelofibrosis
    kathydeang Registered Users
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    It has been 1.5 years since stem cell transplant.  My labs are better than they have ever been.  No leukemia, no blasts, no amemia...I have some pigment problems with the skin on my back, and that's about it.  I hope you have good results, too!

  • Re: If you have myelofibrosis
    amandakm_83 Registered Users
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    Hi Kathy!

     

    I see that his is a fairly old thread. My father has had MF since at least 2008. This past April we found that it had bumped into AML.  He is in the process of finding a donor and hopefully will stay in remission long enough to get the transplant.  How are you now?  Are you having to take any meds for the MF now?  I saw in one of the older posts that you mentioned that you were around 6 months out from the SCT and everything was going good and that you were having to treat some.  Any insight to this would be very helpful for us.  My dad is 57 and ready to get this mess over with!!! I am trying be educated about the matter, be as supportive for him as possible, and trying to keep an eye out on things.

     

    Hope you are still doing wonderful!!!

    • Re: If you have myelofibrosis
      kathydeang Registered Users
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      Sorry, I got locked out of this site for awhile.

       

      I just had my 4 year STC anniversary.  I am doing very well and have more energy than I did before transplant.  Some GVHD of the skin, but so far manageable. 

  • Re: If you have myelofibrosis
    macnanna Registered Users
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    hi, i"m very new at this, so here goes, i"m a 55 yr old female. Was told 4 weeks ago i have polycythemia vera primary, i had my first phlebotomy done 2 weeks ago, was told to go back in 3 months, the dr said to see him in 3 months, my husband and i are very confused, we were told this is a type of blood cancer and is serious, yet when i rang to see the dr, because i get short of breath and a lot of pain in the chest, was told he is on holidays for a month, any one else get treated like this?

    • Re: If you have myelofibrosis
      DEE11 Registered Users
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      Welcome... next time you reply ry to click on " living with part 4" there are a steady bunch of us who will support and try to help you work thru your questions.First of all its a must to get copies of each and every blood work...Also to go to a good ONC/HEMATOLOGIST. I,m guessing but the chest and breathing probs is due to the HCT not being lowered enough.If you could get you labs and let me know what your counts are it would be a big help.Good lcuk and look forward to your next reply at the other thread.tata =D

      • Re: If you have myelofibrosis
        macnanna Registered Users
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        hi dee, thank you soo much again for your input, its nice to know some one out there knows how i feel, i will get all of my counts nxt tuesday, will let you know what they are ok, yes i take 100mg asprin a day, it feels like some one is sitting on my chest, when i'm lying down in bed at night. Some days good and some days bad, how long have you had pv for? I"m married and havee 4 grown kids and 5 g kids, used to work cleaning spa chalets. But found it to much, so no work now.So i have a lot to get used to, so this is a type of blood cancer? So many sites so many diff things, Were do you live? I try and read as much as i can about this disease, but its best from people who have it themselves, take care macnanna  julie xo

        • Re: If you have myelofibrosis
          amandakm_83 Registered Users
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          MacNanna,

           

          How long have you been treating with your Doctor?  If you are not comfortable with him, I would like to suggest to you that you may want to get a second opinion.  However, I will say this, after my father was diagnosed with Myelofibrosis he visited with his doctor about every three weeks as well.  Only when things seemed like they were changing is when he asked that my dad visit every one to two weeks.  It has been suggested to me that I take a recorder with us in the room that way we can always play back what the doctor says. I think that what you have is something to be taken very seriously and should not be something that is blow off.  I believe that you should try to write down your questions for your doctor for your next visit.  Try not to let him get out of that exam room until you feel that you've got the questions you have answered. Your doctor is working for you!! I wish you the best with your journey!!

  • Re: If you have myelofibrosis
    Bonita Registered Users
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    I'm just starting, again to research treatments and different chemo. I am 49 years old. I was diagnosised with ET at 16 and it progressed to MF at 33. I started on hydroxyurea for about 1 year and then Interferon for 7 years. Now I'm back on the hydroxyurea but I would like to know what other options I have.  The last 3 years I have had pneumonia at least once every winter and this last winter was terrible. I got sick in November and was in and out of hospital until May. My immun system is so bad and now I struggle with COPD. Anybody, have any ideas or help>

    Bonita

    • Re: If you have myelofibrosis
      kathydeang Registered Users
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      I have not posted here for awhile.  I started with ET, which went to MF, which went to AML.  Bonita, I  had a dwindling immune system, too, with pnemonia some and a vicious cough some.  I am sorry to say I don't have any advise for treating MF.  I never treated it, and it went to AML.  I can tell you that after my stem cell transplant, which has put my leukemia in remission for 2.5 years, they told me the MF would gradually get better, which it has.  Now that actually get bone marrow when they go in my bones, whereas before they were so scarred it usually didn't happen.  I hope someone can give you some good advice and that you have a doctor you can talk to.

       

      Kathy

      • Re: If you have myelofibrosis
        memy Registered Users
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        Hello All:

             I have post pv mf. Recently dx'd. It progressed to mf over the past year. BTW, I am Mimi, 61, dx'd with pv in '01. I am presently on now med for the mf as I am having a prob with low blood pressure. However, when my spllen reached 25 cm's a few months ago, doc put me back on HU 1,000 mg's daily for one month tho help shrink spleen. That worked well. Last appt, doc said my BP was too low to start on Ruxolitinb, which I have received from Incyte. So everything's on hold presently till I get better and strong enough to handle the ruxo. I see doc once month thru our Charity system and am having blood work every other week. Slightly anemic, low sodium. I am starting to feel symptoms of MF again--bone pain is just creeping in again and I am starting to have abd pains from the spleen. If BP doesn't improve by 2/22 which is next appt, he will put me in hopt. I am normally with perfect BP. Lately it's been running: 95/59; 80/52; 92/58, and so on. I have no idea what is going on? That's it. Good luck to everyone, mimi

    • Re: If you have myelofibrosis
      kathydeang Registered Users
      Currently Being Moderated

      Bonita, this post is old now, but I had ET then I also had 2 pnemonias and COPD.  After transplant from AML, all of that is gone.  My immune system seems to be back up.  4 yrs since transplant.

  • Re: If you have myelofibrosis
    sherabby Registered Users
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    Kathy,

    My mom is undergoing diagnosis for MF.  She had PV for 23 or more years.  Her docs are also worried she has already moved to AML.  They want to do a stem cell transplant.  Can you offer some suggestions on what to do?  I'm really scared for her and she is needing transfusions.  She has now had 4 since April 1st.  Last one today. 

    Sherri

  • Re: If you have myelofibrosis
    ltlee172 Registered Users
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    Hello everyone!!  My name is Linda and this is my first time reading and responding to your comments.  I was given a pamphlet at the hospital last week and they suggested that I try this sight.  I am diagnosed with Myelofibrosis since April 2008.  That's almost 5 years ago.  I've had many problems and have changed my chemo drug a few times in these past 5 years.  As of Christmas week I was taken off of Hydrea completely and not put back on anything else in its place.  I was also taken off of blood thinners over Thanksgiving because I was having internal bleeding. 

     

    When they sent me home over Christmas without the Hydrea I was concerned because I feel like I'm on auto pilot but I truly like and trust my doctor so we'll see.

     

    Most of you have talked about your enlarged spleen.  That was why I went to the doctor's in the first place.  The following year in February I had my spleen removed.  My doctor and the doctor who gave me my second opinion both agreed that I am not a candidate for a bone marrow transplant....

     

    Since I have nobody to talk to about MF first hand, I hope to see you again and listen to what you have to say.  I do have trouble following all the short cuts and initials to all these deceases but I guess I'll be learning.  Guess I'll have to learn more than just about myelofibrosis.

     

    God Bless you all!  I'm so glad that I have found you.

     

    Linda

    • Re: If you have myelofibrosis
      pegetha Registered Users
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      Hi, Linda, I'm sorry you have myelofibrosis, and had to join our little group.  However, since you do have MF, we welcome you and hope you stick around.  There are several of us who often post on the "Living with MPN's . . . Sept., 2012" thread, who have myelofibrosis.  (Feel free to join us there, also.)  For the most part, we have either post-PV MF, or post-ET MF.  (If you stick around, you'll get used to the new language.

       

      I was diagnosed with PV (polycythemia vera) about 11 years ago, and with myelofibrosis about a year and a half ago.  I took Hydrea for about 7 years, but had to be taken off of it, since I was developing some other problems that were a result of taking the Hydrea.  I took Anagrelide for a while to control platelet count, but was then put on the new JAK-2 targeted drug Jakafi a little less than a year ago.  I am primarily being treated by my local hem/onc doctor, but have been to MD Anderson in Houston a couple of times. 

       

      I had a very difficult time with side effects when I first started taking the Jakafi, and thought I was going to have to stop it.  However, my body has apparently adjusted to it, and now I don't have too much trouble.  It doesn't "cure" the MF (right now, there is no cure other than transplant -- and like you, I'm not a candidate), but it does help control the symptoms.  My spleen has definitely gotten smaller, and the night sweats are less severe and less frequent.  I'm hoping the progression of the MF has been slowed down, but I think the drug is too new for that to be known yet. 

       

      Why did the docs decide to remove your spleen?  I didn't think they would do that except as a last resort.  Do you go to one of the well-known hospitals (such as Mayo or MD Anderson), or are you being treated by your local doc?  Do you have primary myelofibrosis, or did it develop after one of the other MPN's?

       

      Sorry about the long post . . . hope I haven't put you to sleep yet.  .  And yes, I'm glad you found us, also.  Hang in there, and keep us posted.

       

      Hugs,

      Pegetha

      • Re: If you have myelofibrosis
        ltlee172 Registered Users
        Currently Being Moderated

        Hi Pegetha and thanks for returning my post.  Yes, I'm still awake-but not for long.

        Regarding my spleen, it was huge and pressing against nerves in my legs, making it very difficult to walk and balance.  The pain was about a #10 at that point.

         

        Other than the enlarged spleen I had no idea that anything was wrong.  I felt great and looked the best I had looked in years!  I went to a local doctor and and using my local hospital (4 miles away for both) but I went to Robert Wood Johnson for my second opinion and I know my doctor consults with that doctor.  I went to Cooper Hospital for the spleen.

         

        I do have primary myelofibrosis.  I'm not sure I'll ever learn all this new language.  What is ET?   I haven't been able to find that one yet.

         

        I'm in New Jersey and have never met anyone with MF or any other the other things I have been reading about.  I appreciate the posting you wrote and the calls I have gotten.  (My cat is not a good conversationalist.)  As soon as I mentioned to someone at the hospital that I looked up MF on the Internet, besides giving them a heart attack, they gave me the information for LLS.

         

        Been a long day and I am very tired.  I'll check in here everyday and hope to see you again.

         

        Linda

        • Re: If you have myelofibrosis
          memy Registered Users
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          Hello Linda!

               It's Mimi McGuire! We spoke on the phone last week--I called you on behalf of the LLS--Remember??? I am so glad you found this site--it is great to develop friends and bonds here as you learn about the disease and the meds and the other folks who have MF will relate their medical history in regard to how they came to be dx'd (diagnosed) and try to help you process all the information---you can discuss your side effects, if any ----and ask whatever question you like. So welcome to the site and I hope you find it helpful for you. ET is another type of the MPN's  similar to MF. MPN is the type of condition that you have (Myeloproliferative Neoplasms), also known as Myeloproliferative Disorders (MPD's). MF is in the category of an MPN, as well as PV (polycythemia vera), ET and a few others too, but I can't think of them now! ET stands for (I think--it's been a while since i have thought about all this stuff!) Essential Thrombosis---....and I think it is more of a white blood cell problem--again--I have forgotten exactly what it is. I had PV and it progressed into MF, much like Pegetha who you've met. What helped me sort of grasp an understanding of all the medical terms related to all this stuff is a medical reference book called the MERCK MANUAL of Medical information. Plus you can always search on line. But as I stated the other day, don't necessarily believe everything you read on the net--according to some studies abt my disease, i should have been an elderly, Italian male and deceased a long time ago! There are a lot of stats that are flat out incorrect or not brought up to date. Incidentally, I presently take Hydrea, 1500 mg's (miligrams) daily--that's 3 capsules daily and i respond very well to the HU (Hydrea) treatment protocol.

          Anyway, Linda, I wish you well and many blessings with your condition. I am a bit tired today--that's part of the fatigue that goes with my MF, so I am going to close out now. But i saw that you had made it to the site and i just wanted to welcome you with open arms and hope you find much help here. .....Now, I'm not sure, but I think that most of us post on a different site called Living With MPD's, PV, ET, MF...So you should take a look over there and peruse the site.

          I hope your weather has warmed a bit and i look forward to chatting again soon.....best wishes, Fondly, MIMI

        • Re: If you have myelofibrosis
          kathydeang Registered Users
          Currently Being Moderated

          I had my spleen out years ago and it doesn't seem to effect me at all not having one.

          • Re: If you have myelofibrosis
            memy Registered Users
            Currently Being Moderated

            Hello Everyone on this posting site:

             

            I am Mimi and I have posted here a while ago. I have post PV MF now for 2.5 yrs and am faring well on 1500 mg's Hydrea daily. But I want to tell you of another posting site for ONLY MF patients----It's called QT (Quick Topic). I actual don't know how to cut and paste the address, but it's open to all MF patients. I get to it via Robert Tollen's MPD Digest which is mailed out every night. I can give you his email address and he can direct you to that web site.

             

               Robert Tollen is very approachable and is happy to offer help wherever he can. His nightly digest has been of tremendous help to me, though it did take me a while to learn how to navigate it--I am not computer savvy! Like, every now and then, he will write down all the CBC lab counts and what they stand for. I printed it out and now have it handy for me to refer to on my real and physical bulletin board!


            It is a great site for MF patients and I know many of the posters there. I just thought I'd mention it to y'all as it's the only site I have found that caters only to MF patients.

            Hope this may help you. It is full of info, support and lots of help abt the disease itself........A great bunch of guys and gals.

             

            Best wishes and many blessings, mimi

             

            Message was edited by: Marie The link is:  http://www.quicktopic.com/42/H/ZHyNwK4j3NB          QT Quick topic Myelofibrosis

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