Hello @Marilyn. I have just found this topic as I too have myelofibrosis. I was diagnosed thirty years ago and many years ago I did connect with someone called Marilyn who set up a group called MAYA - myelofibrosis at a young age. We lost touch and I am just wondering if you are the same person? Also, just wondering how you are doing now? My user name on this forum is different to the name I used years ago when we were in contact. Feel free to message me if you would like to but there is no obligation. Warm wishes, Willow x
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Oh my goodness yes that was me! I set up that group because myelofibrosis was just not mentioned all those years ago and I asked a friend Iād made who then worked for The Anthony Nolan Trust to put me in touch with anyone else who was diagnosed young, like I was, as it was so unusual. I kept contact going for a few years but in the end I just wanted to get on with my life and not stay steeped in my disease. Also, one person in the group died and that upset me of course.
I come on this forum very occasionally because, to be honest, Iām still much of the same mind. Now that I am no longer young (!) I am affected more than I was then and try to keep myself as stress-free as possible. I was absolutely fine on hydrea for 20+ years but then started getting leg ulcers. The consultants who took such good care of me retired and I was batted from here to there for a few years with different drugs and assorted side effects.
For the last few Iāve been in excellent hands once more and am fairly stable on Ruxolitinib. I get increasingly tired and weary and have various skin problemsā¦ also had lots of investigations on my heart although the tests have found nothing wrong. I get out of breath quickly and sometimes feel faint and dizzy. But all this is bearable and I feel incredibly lucky to still be here and fairly well.
So how are you? I see on your page you say you are in āend stageā. What does that mean? Are the meds keeping you stable?
Best wishes, Marilyn x
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Hello @Marilyn. How amazing to reconnect with you! I quite understand about the stress of this disease and just wanting to live your life so if at any stage you donāt want to reply I shanāt be offended. You actually came to my flat once when your daughter was looking at a college nearby. By end stage myelofibrosis I mean that the last bone marrow biopsy I had in 2018 showed that the fibrosis in my bone marrow and the scarring had increased greatly. In fact my consultant said he was shocked at how āemptyā my bone marrow was in terms of the blood cell making cells that it contained. I was surprised in a way but I knew things had changed as my platelet count had gone from being high to being low and also my red blood cell count had dropped along with my Hb. Also my bone pain has worsened and my spleen enlarged. My low Hb is an ongoing problem and I require regular transfusions of red blood cells. I have had so many transfusions now that I have extremely high iron. I am also on Ruxolitinib which is helping with the enlarged spleen and makes the bone pain more manageable but I still need painkillers everyday. I also take Danazol capsules to try and boost my red blood cell count. I have had repeated stress fractures in my feet due to the scarring of my bone marrow plus osteoporosis and cerebral palsy causing me to walk in an uneven way. In fact I have fractures in my feet at the moment. They are beginning to heal but it is almost a year since they happened. Sorry about this lengthy reply. I wish you well. Thanks so much for replying. Warm wishes, Willow x
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No need to apologise for the lengthy reply!
I do remember a visit with my older daughter who is now 43! She has had major surgery for ovarian cancer and is coming to the end of her chemo. Another reason why I try not to spend too much time focusing on illness! I did want to tell you how sorry I am for the advancing fibrosis. My spleen is actually normal size for the first time since I was diagnosed which is weird. My platelets still lean towards high but the Ruxolitinib is keeping them at a good level.
Willow, I am so very sorry to hear of your pain and other issues. I wish your feet better and really hope the Rux does the best that it can for you.
Take care.
Marilyn
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Thank you @Marilyn. I am so sorry to hear about your daughter. You have more than enough to cope with. Where have all those years gone but take heart, we are still here! Warmest wishes, Willow xx
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Oh @Willow and @Marilyn I do not wish to intrude into your reunion, but it has really given me a really warm feeling, it has made my day as you are both such very special people on our forum. xxxxx
That is really sweet of you Erica. Thank you. Itās been fantastic to know (and to let others know) how long we can hang on for with MF! 
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I am aged 70 and was diagnosed with MF in 2019. I have been on Rux for a couple of years but HG was really suffering and was getting regular transfusions around every 3 weeks. At some stages HG was going down into the 60s. and usual problem of build up of iron. On compassionate grounds I have been on Momelotinib since April this year. Initial response looks good and I have not needed a transfusion for 2 months +. HG is currently in 90s.
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Hello @davidmynors. Thank you so much for sharing this. I hadnāt heard of momelotinib before and I shall certainly ask my haematologist about it. I am having a miserable time with side effects of the Danazol and my iron overload is getting serious. I am very grateful to you for taking the time and interest to make contact. I wish you well. Willow x
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Oh @Willow I am so, so sorry that you are having such a miserable time with side effects.
Please do let us know what your haematologist says.
We are always here for you and with your forum family around you are never alone.
Please do keep posting and sending you loads of virtual hugs xxxxxxxx