Hallo. I am newly diagnosed with myelofibrosis. I was called to be told a week ago. I’ve been in and out of shock since and now so frightened I can’t sleep. I have no information, and have been googling prognoses and crying constantly. I don’t know what I’m dealing with at all. Will I be around to see my children grow up? Is there any hope? I would be so grateful for any encouraging words. Thank you so much x
Newly diagnosed with myelofibrosis: Hallo. I am... - MPN Voice
Newly diagnosed with myelofibrosis
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LuluCosson
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Dear Lulu, I can't help with your question, but as someone who was informed of being JAK2+ today and who is just shell shocked, I just wanted to let you know that I'm thinking of you.
You will find very encouraging people here and I'm sure they can help you with all of your questions. All the best.
Good morning Jayne Wayne,Hope you feel better now that you know what is what.Keep strong now, we are all here having been thru similar. My op is this afternoon,I am prowling about like a caged lion to stop worrying!!!Hubby will take me & bring me back,I am told the op is very quick,my heart is pounding tho ....glad you are thru your panic.Best to you ,keep safe & well.Sally
I am glad you found your way here to this forum. You will find a lot of support and good information here. One good place to start getting information is the Voices of MPN Website. voicesofmpn.com/ .
Please know that you will have time to sort all of this out. Many people with MF can manage it for quite some time. There are treatment options that are improving all the time. It is important to give yourself time to absorb this and start to learn what you need to know to manage it.
One of the most important things to do is to consult with a MPN Specialist. Most hematologists do not have the KSAs to provide optimal care for MPNs due to their rarity. Here is a list. mpnforum.com/list-hem./
Do please be careful about random Googling as it can do more harm than good. There are very good resources available. Please take this one step at a time and equip yourself to manage this effectively.
Here are a few resources that can help get you started.
Article on MPNs MPNslegeforeningen.no/contentas...
MPN Education Foundation Webinars
mpninfo.org/conferences/201...
mpninfo.org/category/video-...
Upcoming Webinar on MF
register.gotowebinar.com/re...
I have had quite the journey myself lately. ET progressed to PV, heart surgery, brain surgery and more. All in two years time. I did not have to manage it alone. I had a lot of support from family, friends, my faith community, and this forum. Know that you are not alone. Help and support are available to you.
It is important to manage your fear. Fear is normal in this situation, but can immobilize you. I will leave you with a quote that helps me. I sometimes use it like a mantra.
"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain." Frank Herbert, Dune
Please stay in touch on the forum as you come to grips with this. Plenty of people will be here for you
All good points again hunter5582
Can you tell us a little bit more about yourself? What stage of MF. Mutations etc.
All I can say is that there is amazing progress being made on new therapeutics. Our boffins are prioritising MF and there is lots in the pipeline. When I was dx with PV in 2016 there had been relatively little progress - JAK2 inhibitors were the big hope/breakthrough. Roll forward to today and MPN understanding has gone off the charts. In 2016 the Hems were targeting Delay rather than Cure. Today Cure looks much more attainable.
So you can be optimistic. Stay fit, eat well and as Hunter says, try to not worry/stress.
You will be here...treatment is so good now, Hate to admit that I am now 80 yrs young....still going strong,in the beginning prognosis was not good ,but now we live a normal life span,yes there are blips ,but manageable.Cry no more it just makes things worse,believe me I know ,I have been there,& so have others who will get in touch.Very Best wishes,we are all with you here.
Above is for you LuluCosson,having cataracts removed today so funny drops in eyes,hence not seeing properly .
I hope your cataract surgery goes well. Had both eyes done in my 40’s, one at a time. It took 6 months to diagnose after many visits to optometrists, ophthalmologists, and finally, to a hospital that specializes in eye problems. I was raising 2 kids at the time and teaching and I couldn’t even make out the faces of my students. Everything was a blur. But once I had the first surgery, it was an amazing feeling to able to see again. So, good luck today. All will be well.
Thank you Cja,Yes ,done now ,amazing to see properly,& the brightness of things!!!
Right eye will be done in two weeks. I had been seeing an optician in U K each year for many years each time I was back to visit .our daughter. Just kept prescribing new lenses at huge cost.Came back to France where we live
knowing my vision was wrong.Went to a very good Opthalmologiste Clinique here.......so many things had been missed....anyway ,sorted now,although Covid delayed op a bit.I am proff sculptor so like you I needed my eye sight to be good.Best to you & keep safe..
Thank you for replying everyone. I’m JAK2+ and they say low risk. My bloods are normal. I don’t have any symptoms except for I think a sore toe. I’m 48 with 2 kids and a lovely husband.
I’m under the care of Guy’s and I have an appointment on 15 April.
When I look at Google and see an average of 5 years or whatever it’s just terrifying. There is nothing to say that people with myelofibrosis can live a normal life; it’s all vague or game over.
Can you live a normal lifespan with MF? And what is PV?
PV = Polycythemia Vera. it is the most common of the MPNs. 95% of people with PV are positive for the JAK2 mutation. PV is marked by erythrocytosis, but can also be accompanied by thrombocytosis and/or leukocytosis.
Be VERY careful looking at those statistics regarding MF (or any other MPN). You can NOT apply them like an individual prognosis. That is not what the data means. The data compiles people with MF from a range of risk strata and ages. There are a large number of factors that will affect your individual prognosis with any MPN. Age, type of driver mutation, mutant allele burden, presence of non-driver mutations, co-occurring medical conditions, exposure to toxins, life-style choices, treatments received - and more. Focus on the factors that affect your individual prognosis. Many of them are under your control and you can improve your own outcome by focusing on them.
Plan to live with and manage the MF. Treatment options really are improving. Yes - MF is a serious condition to treat. Plan to manage it successfully for quite some time to come.
Side note: to those interested in looking at research. A basic understanding of statistics is essential. Be sure to understand the definition of mean, median, mode, standard deviation, p-value, and the difference between correlation and causation. The numbers will not make sense unless you understand them.
All the best.
Thank you very much. That's really good advice - I am not looking at anything apart from here any more!
I am P V ,now bordering M F ,so Jakavi is my med ,was Hydrea before.All info of each M P N is there on site to read,don't Google ,not always correct & scary.!!!'AsI said to you ,I am ancient now,still work as sculptor ,have horses & dogs,do more than most folks less than my age,& no one guesses I am 80,When I have to give my age anywhere ,there is shock !!!So worry not,you will survive. Sally
I understand what you are going through. I was diagnosed with Myelofibrosis last August. In my case it was a progression from Essential Thrombocytosis, another MPN, so I always knew MF was a possibility at some point. Even so, like you, I was in complete shock and it felt like the end of the world. Members of this forum were SO supportive and made me realise that we can live well with this disease. I was diagnosed while in hospital and, when I told one of the consultants that I didn't want to know how long I might live and his reply was "Well I couldn't tell you anyway, but people live for a long with this."My treatment is a drug called Ruxolitinib and blood transfusions and I feel pretty good generally apart from fatigue, which I have had to learn to manage. We MF patients have the possibility of a stem cell transplant, which is an actual cure, even though it comes with the issues any transplant would. I get days when I feel upset and scared but they pass and I get on with life optimistically.
The only other thing I would say is try to avoid Google, it just leads to panic.
Best wishes to you, Jennie
Thank you so much Jennie. That’s really kind of you. I do feel like my world has ended. The nurse said that I won’t always feel like this, but I’m finding it hard to believe.
I'm sure you will come to feel more settled about it. Your world is not ending, it's just changing a bit. I note that you say you are low risk and have no symptoms; I believe I am considered relatively high risk as my fibrosis is at stage 3, yet even I am doing fine. In fact, I saw my consultant today and she said things were going really well. Like me, you will probably have sad and scared days, but mainly you can live your life well and enjoy your children and husband. Keep posting here, we are all here to support one another.
Thank you so much for taking the time to reply, and for your encouragement.
Hi, Lulu, I was diagnosed with ET Jak 2 at age 52 in 2008, which progressed to MF in 2019. I am Intermediate 1. The thing is with this disease, everyone is different. My hematologist told me I’d probably need a bone marrow transplant in 2-5 years, but the transplant specialist said I might not progress and maybe I’ll never need one. I take life day by day and try not to focus on it. Some days I feel great and others, all I want to do is sleep. There is much more research being done and new treatments, and there are people on this site who have lived many years with MF. I wish you the very best. You will find much support on here. Keep us posted.
Thank you so much. That’s so kind of you
Hi Lulu I was really moved by your post my heart goes out to you. I don't have MF and I don't know much about it so I can't help there but there's been lots of responses from people who do have MF and I hope the positive feedback has helped you.I do however understand how you're feeling I went through the same feelings of shock and being scared as I recently found out my ET had changed to PV and I had another totally different blood cancer. After the initial shock and then a lot of crying I decided to focus on the fact both my condition s can be managed and I can help by looking after myself to my best ability. In addition I take comfort from the fact that new treatments are being discovered all the time. I do still get days when negative thoughts come and I'm not going to lie sometimes they grab me but more often than not now I can put them out my mind or stop them in there tracks by reminding myself of all the things I'm grateful for and by the time I get to the end of my long list I'm thinking completely different and I always finish my list with I'm grateful I have HOPE
Take care of yourself Lulu and take the advice given from others about not googling I only ever look on mpnvoice for info if required.
Sending you lots of positive energy.
Thank you so much. I'm looking forward to when I can pick myself up off the floor. The sleepless nights don't help.
Hi Lulu, keep in mind that a cure is theorically possible in the next few years for your condition:
« « Myeloproliferative neoplasms (MPNs) are a group of blood cancers that are maintained by stem cell populations. In this issue of JEM, Dagher et al. combine arsenic and interferon α to deliver a knockout punch to MPN stem cells and provide new hope to cure patients with MPNs. »
« Additionally, after IFNα+ATO treatment was withdrawn, primary mice were monitored for the reemergence of disease. In >50% of the IFNα+ATO combination–treated mice, the MPN did not recur after treatment was stopped, demonstrating long-term treatment-free remission and potentially a cure of the MPN. »
rupress.org/jem/article/218...
Bless you for your very hopeful post. God wouldn’t it be wonderful?? Keep them coming everyone! X
Dear Lulu. So sorry to hear of your diagnosis. I don't have MF (I have PV) but there are many positive stories on here, and new drugs and trials coming up all the time. 'Patient Power' is an American site that also has very positive and hopeful MF stories, and the founder Andrew Schorr is an MF patient himself dx 2011. He is inspirational. patientpower.info/about-us/... Some of the podcasts on that site might help you develop your understanding of the condition and help you to consider your future more positively. Their mantra is 'knowledge is power'. Thinking of you. All the best.
Thank you so much. I’ll check it out x
Hello Lulu. Going to guys? Could not be better as they have one of the worlds leading specialists in this disease. From my perspective it’s where the positive part of my journey began. You can get support, clarification, ideas and suggestions here, where there are lovely people who are knowledgeable and experienced, but take your medical advice from the experts.
Take someone with you to appointments as four ears are better than two and you can compare notes afterwards. Write down any questions you have before your appointment, and tick them off as you ask them, so you don’t miss them.
Consider using MPNVoice’s buddy system (see website) where you can be assigned someone in a similar position to you, but a few years in, to chat with one to one by email, phone etc. They can often help clarify things/words that arise at appointments as things can fly by.
Me? I was diagnosed with MF 11 years ago (age 57) and had the fast moving version for which I had the only current cure, a stem cell transplant (aka. SCT), one year later. It will be something for you to find out more about in future in case it becomes an option but there will be other things to consider before this.
Best wishes.
Chris H
Thank you so much. Are you all better now then? X
MazcdPartnerMPNVoice
hello Lulu, welcome to our forum, I can see that the lovely people on this forum have been helping you with their advice and words of wisdom. It is a shock when you are diagnosed, trying to understand what it is all about, take your time to read about MF, the links you have been given to different websites do have good information on them, and also look at our website mpnvoice.org.uk.
It might help you to have a buddy to talk to, a buddy, or peer supporter, is a MPN patient, someone you can talk to, one-to-one, for help, support and advice about your MF, getting advice and support from someone who really understands what you are going through can be very beneficial and comforting. Our buddies are not trained counsellors or therapists, they are MPN patients so have a real understanding of the challenges faced on a daily basis. Contact is by email, phone or a combination of both. If you feel that you would like to have a buddy to talk to then please email me at buddies@mpnvoice.org.uk.
We are all here for you. Best wishes, Maz
Thank you very much Maz x
Yes. I am fine. I do everything normally and have done so for years. I was restricted (just being careful) a little bit for 18 months until I had my childhood innoculations again (SCT wipes them out) but that's all. I am a skier and kayaker but currently only run because of lockdown; I do three 10Ks a week. I have shielded on advice of my GP as my immune system is ‘unusual’. I love travel and the only restriction is that I can’t have a yellow fever jab as it’s a live virus and my age couple with SCT make it risky, so no jungles for me. Otherwise I can do what I like. SCT is a tough process and has its risks. It can affect people differently and can have longer lasting impact but I have been quite lucky.
I will be here to help should it be in your future. 😀
Chris
That’s great to hear. And no doubt you appreciate every moment all the more because of what was nearly taken away from you. That’s a real gift. But it must have been a huge and daunting decision to take at the time?
It is a tough decision that several here have taken. It was easier for me as there was far less information available to complicate the decision (others see this as a disadvantage 😀) and the best current available drug, Jakafi/Rux’ was still in trials. Being a lot older than you (getting close to what was considered being too old) with boys who were established in life and knowing my wife was covered financially, it was full speed ahead and never mind the icebergs, once I knew that I could. In my opinion, for the time being it is important for you to focus on where you are currently and once you have your head around that and your initial treatment you can find out more about SCT in case it becomes part of your future.
I wrote my story from diagnosis up to thee months post SCT and this can be found, with others, in the MPNVoice, MPNForum or googling Chris Harper stem cell transplant. Might be useful when you start investigating further down the line.
Best wishes
Chris
Thank you so much Chris.
Hello Lulu.I still remember almost 14 years ago now our son who was then 37 ringing us up from Australia to say he had been diagnosed with PMF . We all were distraught at the time as his haematologist was talking about a possible Stem cell Transplant possibly within a year and a half. On March 30th this year it will be 14 years since his diagnosis.He is very luckily fit and well works full time and at the moment no real problems. Soon after his diagnosis he was referred to an MPN specialist in Melbourne a DR Ritchie who is amazing as are the team at GUYs hospital in London. At the moment he only on Asprin and 6 month check ups with Dr Ritchie. Just wanted to tell you this. take care Gill
Thank you so much! So he's never needed a transplant?
No. Haematologists often dont understand these conditions. Thats why it is so important to see and MPN specialist who understand s these problems. I have been to quite a few forums and listened to Professor Claire Harrison talking .Guys hospital are one of the. best and medicines and research are improving all the time. Bye Gill
That's great news Gill, I'm so pleased your son is doing so well. This has made me feel like there's hope. Thank you. And I'm so lucky to be at Guy's.
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