Hello,
I have just been diagnosed with Intermediate Myelofibrosis, feeling very anxious and scared about my outlook, on day 3 of Ruxolitinib so far I seem to be tolerating it ok, getting my head around this diagnosis and trying to navigate everything I should be doing is quite overwhelming, hoping to connect with members with shared experience who can support 
😃
Welcome to the club nobody wants to join. I am also in the UK, Yorkshire. I was diagnosed with ET in 2011, and it transformed to MF last year. It’s a lot to take in. Firstly don’t believe Dr Google! A lot of info on the internet is out of date and wrong!
You’ll get some good info and advice from this forum. I’ve found it invaluable, especially from Hunter.
I’m also on Rux, started in November (was on other drugs previously) so far the only side effect is weight gain 😱 Blood counts fairly stable (crossing fingers/touching wood!)
With encouragement from people on here I plucked up courage to ask to be referred to Guys in London to Professor Harrisons team, I wasn’t particularly happy with my local haematologist, I may be going on a trial drug with them, speaking to them again next month.
If you’re not being treated by an MPN specialist you need to see one so you get all the options available to you. There may be one at your local hospital depending where you are. It is worrying being diagnosed but there are lots of treatments out there, including stem cell transplant. I’m too old for that.
I’m sure others on here will offer advice to you. We are lucky in this country that we have the NHS, despite the state of it at the moment, various drugs are available to us including the new one Momelitinib (not sure that’s spelt correctly)
Hope all goes well for you.
(By the way I love teddy’s as well 😁)
lol Teddy is my little dog 🐶 Hope you continue to be stable, I’m not sure if my Haematologist is an MPN specialist I haven’t got round to checking that yet, at my last visit he did talk to me about being eligible for a transplant but not at this stage he said they want to see how I respond to Ruxolitinib first, I’m awaiting an ultrasound to further investigate my spleen at last CT scan it was now 20cm vs 12.5cm being normal range, just can’t believe after never being treated for EV or PV that I have progressed this far into MF! I was diagnosed with Lupus 10 years ago or so they thought they are now reviewing to see if that was Mis diagnosed 🙈 Looking forward to hearing how all of you get on and I’ll keep you posted on my progress x
I love my dogs too! (as well as teddy's)
Yes it is difficult to come to terms with especially at a young age. As lizziep says it is important you have an mpn specialist overseeing your care. There are a succession of drugs available and I hope you find them beneficial. Depending on the path of the MF for you, you may be offered a stem cell transplant so remember there are things out there that can help YOU.
Hi Teddylover
I know exactly how you feel diagnosed 4years ago I to am on Rux with hydroxycarbamide you will if you are like me feel very tired at times but I can do everything I have always done it just takes longer so all the best to you
For info I am 75 and live in the highlands of Scotland
Teddylover1, so glad you found this group, I have learned a tremendous amount about Myeloproliferative Neoplasm (MPN) here. I am unfamiliar with the term intermediate Myelofibrosis, I am thinking it may be PreFibrotic Myelofibrosis, I will try to find more information. Please find an MPN specialist. My Oncologist did not recognize exactly where I was, telling me ET, Essential Thrombocythemia, but Specialist explained more thoroughly I probably have early or PreFibrotic MF and started me on Besremi. The good news is there are choices for treatment in different drugs being available.
The beginning can be scary, know you have people who care about you here in this group. There are articles and videos that are posted here from leading Specialists.
I found my Specialist through my insurance advocate.
Please keep us updated, as your journey can help someone else. Take care my new friend.
Christy
thank you for taking the time to reply, my MF is at risk stage intermediate so the level before high risk, my prognosis is 72 months survival, my little boy is only 12 and that prognosis certainly sharpened my mind that I need to take accountability and be proactive about doing everything I can, I’m so glad I found you all it’s been a lonely and worrying few days 😔
Gosh Teddylover1 I cannot imagine! Your response is superb. I love your “sharpened your mind” and “doing everything I can”. That’s the attitude I would love to adopt if I find myself in your position. Reaching out to the amazing and caring people here. I’d like to think I would fix on quality not quantity. It’s not how long I live but how well. Your boy could know love and appreciation on levels few get to experience. I turn my mind to you and him and pray for you to manifest a high, diamond like, blue sky lifestate. 🙏🙏🙏
Hi,I also have just been diagnosed, 56 years old, enlarged spleen, liver and kidneys with multiple emergency admissions to hospital last year with kidney stones, after kicking up a stink as to why this was happening they sent me for ultrasound, result of that sent me to Heamotologist who reported JAK2 positive, had a Bone Marrow Biopsy which showed Polycythaemia Vera and stage 1 Myelofibrosis.
As only stage 1 the NHS would not fund the Jakavi, but i have Bupa care with work, so i am starting the drug this Thursday.
Its a lot to take in to start with and i cant get my head round it all but this forum is really good. Ask any questions and im sure someone will help, we are all on a similar journey, take care
Oh sounds like you’ve had an awful time 😔 Thanks so much for replying great to know there are people here going through similar journeys x I’m going to do as much research as I can and plan to see a private MPN specialist in Edinburgh next month and I’ll share anything I learn on here x
Teddylover1,
Thank you for response and explaining. I am hoping treatments get you far beyond immediate estimates. There is so much inspiration from the people in this forum and their endurance. Best of Luck! Try and keep that positive attitude it will help you go far!
Hi, there. It’s definitely overwhelming at first. I was diagnosed at age 52 in 2008 and then , when I changed doctors in 2019, she said I had transitioned to MF. I was on an emotional rollercoaster for months but then you have no choice but to accept it. I am now intermediate/high risk and am being considered for transplant. I was taking hydroxyurea for a while but there were a lot of side effects. They switched me to Ruxo last summer and I’m doing much better although I think that too is starting the fail.
You got some great advice on here and it’s a great resource for information and support.
Good luck to you on your new mpn journey.
Thanks so much for replying I wish you all the luck in the world and hope a transplant is an option and a success for you 🙏 Great to hear that Ruxo has been working well I’m only on day 5 and only symptoms so far is tighteness of chest but that could also be my anxiety and I feel a bit dizzy sometimes and a bit itchy too 😂 Nothing in comparison to how I’ve been feeling without it x
sorry to hear about your diagnosis. It is certainly a shock when one receives that news. As someone mentioned, this a rare blood cancer so ensure you are seeing an MPN specialist. In addition to existing treatments, there are alot of next generation treatments being studied. Try to stay positive
Hello and welcome. Glad you found your way here.
It is quite disconcerting to find out that you have MF. A lot of what you will read sounds quite daunting, including general prognostic statements. It is important to read this information with a lot of nuance. The general prognostic statements are historical statistical projections that may have little to do with your individual situation. There are significant individual factors that affect your prognosis.
There are many factors that will affect your outcome in managing the MF. Significant progress has been made in managing MF. There is more promising MPN research underway that involve expanding options into other ways to treat MF. We now have four different JAK inhibitors, each with a different indication for the different ways MF can present. These options will improve the outcome for people with MF.
As others have stated, it is very important that you consult with a MPN Specialist. Assessing and treating MF or any MPN requires very specific expertise in these rare disorders. The best way to have a clear picture of your prognosis is through an individual assessment by a MPN Specialist that looks at all of the relevant factors (e.g., genetic factors, rate of progression, symptoms/complications, age, overall health, co-occurring conditions, and more). Based on your individual profile, an MPN Specialist can provide an individualized treatment plan that offers the optimal outcome for your case of MF. Here is a list of MPN Specialists. mpnforum.com/list-hem./
Many of us set up shared care arrangements when we live too far away from a MPN Specialist. I do this. I have a MPN Specialist with whom I consult periodically to guide my care plan. I have a wonderful local hematologist who delivers the care. I always get a second opinion this way from doctors who I trust with my care.
Wishing you all the best as you move forward,
that’s super helpful thank you 🙏
Hi, I was diagnosed in 2022 with MF too. I do understand how you feel. The range of emotions is vast. I am a worrier , ask my wife….( not a warrior yet!)
Take your time in understanding your diagnosis and ask questions. Check the stories and journals on here too and as others have said, be very careful of web browsing….
I too am on Ruxo since Oct. last year and tolerate it well. Have seen vast improvements to my symptoms, spleen size has decreased, Pruritus has all but gone and no more night sweats.
Hoping for a stem cell transplant soon.
Talk with friends or family of your concerns if you feel able to or try a buddy system if that’s right for you.
Remember, you are not alone and just a keystroke or phone call away.
All the best
🥰
Thank you so much for sharing your advice I’m already starting to panic a little less, I’m going to use everyone’s advice and start getting organised with understanding the diagnosis everything they have said to this point just feels like a blur! I’m going to start a journal myself and start to capture all the advice for treatments, foods, supplements etc and try and navigate to a place where I at least feel a bit more in control which is how I operate normally, I’m a very growth mindset type of person but this has knocked me for six and the sheer panic that I might not be here long enough for my child to be an adult has certainly exacerbated my anxiety, I wish I had a mentor for this illness I’m terrified I don’t do the right things or miss opportunities but I know like you all I will get there 🙏 Thanks so much for your advice I appreciate it x
Glad to hear that the panic is subsiding. There is a lot to learn about managing a MPN. We can best learn and succeed when we are able to be calm and focussed. There are excellent source of information, starting with MPN Voice. Your notion of wanting some kind of mentor is a very good ide. MPN Voice has an MPN Buddy program that you may want to consider. mpnvoice.org.uk/get-involve...
All the best.
I don't have much to add over what others on this lovely forum have already noted.
One comment: above you noted that you "just can’t believe after never being treated for EV or PV that I have progressed this far into MF". Keep in mind that there is primary MF (no prior MPN) and secondary MF (the condition started with ET or PV). So you may not have progressed from ET or PV at all.
Certainly MF is a scary diagnosis, but as others have noted, there are treatments that can help manage it. Keep learning about your condition - this and other forums have been a godsend to me and many others. And as just about everyone has stated, ensure you are with the right doctor. MPNs are rare and so many hematologists (as well intentioned as they may be) just don't have the expertise and experience with MPNs.
Best of luck to you - your MPN family is always here.
Thank you so much, I’ve never had EV or PV just an out of the blue straight to medium risk MF, I had Lupus already just thought MF was something that you progressed to from the other MPNs, I have a question if you don’t mind answering? I am not under the care of an MPN specialist at the moment I’m under the care of my local hospital haematology, none of them specialise in my particular cancer, I have seen that there is one doctor from the Beatson centre in a Glasgow, how do I go about getting to be under the care of someone like him who specialises in this? I do also have private healthcare but up until this point I’ve been on the NHS pathway and they have been great ❤️
So glad you are starting to panic less . It does take time to adjust to the new'normal' Concentrate on what you can do to keep as well as possible. Sounds like you have some excellent ideas.
Have you had blood tests to see if your vitamin , mineral levels are optimal?
Your GP should refer you to
MPN specialist. I also asked for appointment at
Royal London hospital for integrated medicine as well
It's so nice to see a whole pharmacy filled with natural remedies.
No question is to small or 'silly ' and sometimes a good moan to let off steam is therapeutic!!!
We are all here to help and support each other
Sending you my very warmest wishes
Xxx
oh I didn’t know I could ask my GP! I’ve most only been with haematologists at the clinic in my local hospital I’ll certainly as for a GP appointment as see how I get on thanks for that advice x
Some on the forum have selected the MPN Specialist they wish to see and contacted them in advance. Others in the NHS can give the best advice on how to get the referral.
Would I just organise and pay for a consultation not sure if my healthcare will now cover my condition?
I believe that depends on where you go - who you see. If you get a referral internally to the NHS, I believe it is covered. If you go privately, then your private insurance would cover the consultation or you would pay out-of-pocket. Others in the UK can provide better guidance.
Your welcome. I'm still with my local hematologist at hospital. But they arnt very knowledgeable. So I have phone appointment every few months there
It was thanks to folk on here I found out about Guys and the wonderful team.
X
.
I have MF. Have been diagnosed in 1990, and am still here (now aged 71). I believe I have been very lucky in that it has progressed slowly. I am also just outside Edinburgh and I see Dr Ioannis Koutsavlis who is an MPN specialist at the Western General Hospital. I was referred originally by Prof Harrison at Guy's to Dr Mark Drummond in Glasgow and he passed my referral to Dr Koutsavlis. I find him very good. I feel I can talk to him about any concerns and I also feel he does his absolute best. I was on rux which failed after 10 years! I am now on Fedratinib and Danazol plus transfusions every 6 weeks and I am able to live a good quality of life. Transplant unfortunately was not available to me for various reasons including age.
I do wish you all the very best in your MF journey. All good wishes Hilary
oh wow that gives me so much hope that you continue to manage this horrible illness since 1990 I hope your good health continues 🙏 I must admit the fear really set in when my haematologist gave me the timeline of 72 months it was very scary 😟 I’m going for my first blood test since starting Ruxolitinib on 2/4 so I hope it helps me suppress this for as long as possible, do you have any good tips on what you do from a lifestyle perspective that you think has aided you significantly ? TIA Kind regards x
Guys st thomas in London os one of the best in world for MPN s Professor Claire Harrison renowned for her compassion wisdom . Ask for referral . I had no trouble getting one but maybe depends on your GP?
Good luck . Let us know how you get on x
Ps . It's free on NHS
thanks so much for your advice I really appreciate it x
I was diagnosed almost seven years ago with MF. I was given three years to live. I have no answers to why I am still here and neither does my Haematologist. I have all the usual weaknesses going on in the back ground, spleen, liver, kidney, low platelets, low hemaglobin. I was injecting myself every other week to help red blood cells and then was asked to stop as the injections weren’t helping. That was January 2023. In February that same year, only a month after stopping the injections, my platelets and my red blood cells increased. With out taking any medication still my bloods are stable. The only change is prayer. I have many praying for me and I live in hope everyday. I don’t think I am the only one who is going through a quiet time. I am thankful for everyday. I am no longer living each day in fear. I know I won’t always be in a stable state but living in hope does make a huge difference to me. Anything can happen, even good reports when one thinks there is no hope. Hold onto Hope! XXX
Aw I’m so glad you continue to beat all the odds 💪 Lovely hear that you are still so positive, day by day all of the reviews are really helping me with keeping a positive mindset, forward I go on my journey and I am so appreciative for everyone who has replied to my message they have honestly made such a difference for me xx
Hi Teddylover
Sorry to hear you've joined the MF club but just wanted to say hello as I'm just a couple of years younger than you, have a 13 year old daughter and a Springer spaniel called Ted too! Looks like you've had lots of great responses already and I hope you manage to find an MPN specialist near you.
I was diagnosed with PV and large spleen in 2017 but likely had few years before. I progressed to Post PV MF 2 years ago so increased my Ruxolitinib dosing then, which has helped to stop my spleen grow much bigger. I'm on darbopoeitin injections to keep my Hb up and preventative aciclovir in view higher risk from shingles infection. The Rux has been well tolerated and definitely helped me to feel a bit better. Only thing now is weight gain due to slower metabolism with it( my appetite hasn't increased with it despite its impact on leptin) and the likely combo of the old hormones starting to fade away.
I really hope the Rux helps you to feel a bit better and gives you energy to enjoy time with your 12 year old. I'm not sure if you are working but I'd definitely review your options if fatigue is a major issue. I've had to ill health retire from being an NHS GP due to the symptoms of the MF and my osteoarthritis as it was such a full on stressful job but I'm hoping to do some volunteer stuff at my daughter's old primary school and at the hospice I used to work at too. It also means I actually can try and save my energy for my daughter especially if time is short with her.
Anyway just wanted to get in touch and say hello.
Good luck with it all.
Heidi
A bit gloomy
A bit confused
Scared
