I've been wanting to post here for some time, but it's taken me a couple of months to get a diagnosis and it's been a bit of a rollercoaster!
Back in September 2017 I went to the doctor with weight loss and fatigue. Blood tests came back "normal" but a scan revealed I had a very enlarged spleen. After repeat GP visits it was revealed that these "normal" tests actually showed slightly elevated platelets (550) after all (thanks for telling me guys!). Eventually I was referred to a haematologist who sent me for a bone marrow biopsy. The week before Christmas I went for the follow-up and, although the BMB results weren't back, the haematologist told me that the worst thing it could be was ET and that I would have a completely normal life. After working myself up into a right state this actually felt like such a relief. We had a celebratory Christmas and I entered 2018 feeling weirdly more positive than before any of this had even happened.
First week of January I went back for the BMB results and the haematologist told me that actually I seemed to be developing MF and needed to start treatment immediately. This was hard to hear as it significantly impacted our life plans (especially hopes of a second child). A week later and everything changed again – I was told that the blood oncology team believed I was now at high risk of developing acute myeloid leukaemia and that I would need a stem cell transplant in the next few months! Obviously this was devastating. I was hit by quite a hard depression and found it hard to eat, sleep or function at all. And yet I had a beautiful 18 month old girl who needed looking after so I had to force myself to keep going (while my wife took on all the heavy lifting, like a superhero).
I asked for a referral to UCLH because I'd read somewhere that they had good success rates with stem cell transplants. This is where things get a little bizarre. They studied the same BMB and bloods and came back with a different diagnosis of "classic ET, Jak2+, low risk" that only required aspirin. So one set of doctors are saying stem cell transplant and the other are saying aspirin! I went back to my initial hospital and they said they could only stick with their original interpretation. So what on earth was I supposed to do now?!
Anyway, I had to badger UCLH for another appointment and yesterday was the first time I got a long and thorough explanation about it all. An MPN specialist explained that I had ET but with some signs that it might progress in the future - most concerning was my 21cm spleen but other signs were good (age, stable bloods over five months, symptoms very mild, weight put back on). So I will need close monitoring for the next year or so, with more tests for genetic mutations and a follow-up BMB later in the year to check the changes. Obviously this is a better situation to be in than requiring an urgent STC, but it's also not the 100% celebratory news I was led to believe last week. I feel like I've been through a very intense emotional experience without anything changing in my actual physical health!
It's going to be a challenge adjusting to life with a bit of uncertainty hanging over it. If anyone else is in the same boat caught between ET and MF then I'd love to hear about how you deal with it psychologically. I also wondered if anyone out there with ET has a spleen as big as mine and how worried I should be? Other than that, any positive stories or reassurance then please do send my way – I'm all for positivity these days!
Finally, I've been reading this board a lot over the last few months and it's a truly wonderful place. So warm and supportive and informed. Obviously nobody wants to have an MPN but it's still a pleasure to meet you all. I feel like, between the doctors and the people here, I'll be in safe hands!
Tim x
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Timjonze
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hello Tim, welcome to our forum, well you have certainly been through a very stressful time recently, but glad to hear that this forum has been helping you. I am sure you will get lots of support and advice from the lovely people on this forum. Keep us updated and keep being positive, it does help. Best wishes, Maz
I must say my jaw dropped when reading your post and I dont really know what to say but you have really had a terrible time! You must be really strong that have been able to go thru all this!
My spleen is enlarged to 17 cm and I dont know the result of my BMB yet....
So, keep up the good mood, if you can and stay with us here!
Hi Tim, wow what a crazy rollercoaster indeed!! My heart goes out to you & your family with what you have had to go through these past few months.. I struggled last year with my PV diagnosis being younger too like yourself with a very young family but it is obviously nothing to what you were told! I do hope the future news remains positive, you have been amazing by the sounds coping so far. It’s amazing where we find the strength sometimes! This forum is so supportive & helpful, so we will all be there for you when you need us. Stay positive the future is most definitely bright & I find my little ones help carry me through the hard times! Take care x
Yes it’s a shock to be diagnosed with an MPN when you feel fit and healthy but a real education to learn how so many of these disorders can be managed for a long time. If I’m being honest I’ve found looking after my girl the hardest bit as it’s made me so emotional but I think that will settle down as life gets back to relative normality. X
Time is a great healer & yes I can totally understand the increased emotion with looking after your little girl it is very tough.. one positive I took was to make the most of every day now & with my girls probably more than I would have done before my diagnosis x
I’m sorry to hear of what you accurately describe as a ‘drama’ in regards to your diagnosis. Poor you, no wonder you felt depressed!
You say that you have been to UCLH - but do you actually live in or close to London? If so, I would recommend that you see Professor Claire Harrison at Guys and St Thomas for a third opinion. She is an expert in MPNs, and many on this forum have consulted with her and given outstanding reviews.
Like you say, what are you the patient expected to do with such conflicting medical reports?
Hi Mary. Thanks for the message. I was going to ask to see Prof Harrison but when SCTs were mentioned I went for UCLH instead. My story sounds really confusing and it was - but actually my last appointment cleared a lot of it up and I do understand the reasons for the different readings of the BMB now (they’re actually quite similar and partly caught up in the whole cellular phase MF debate). I don’t think a third opinion would add much at this stage as I’m being monitored closely for changes in my bloods etc but will certainly keep in mind for future if no clarity emerges x
Blimey!!! - many on this forum have had ‘issues’ awaiting diagnosis, but you have certainly been through the wringer.
I do think that our blood tests are ‘open to interpretation’ and that GPs/ haems who are not MPN specialists use a tickybox check list which unfortunately our MPNs don’t always fit neatly into.
Thank goodness you have been able to ‘beat’ your way to the door of a specialist (I am stable ish ET JAK2+ but should things change I will certainly be looking for a referral) - half the battle is having a team you can trust. It sounds like you now have that and can hopefully be more confident with your treatment.
This forum + MPN voice has been a huge help to me and a great source of information.
Welcome to this forum, it has certainly helped me a lot since my diagnosis last year. Wow, what an awful time you must have had with all this conflicting information, going from one extreme to the other.
My situation is a little bit similar (although not quite as dramatic!) because it was first assumed that I had ET, but after a BMB showed stage one fibrosis I am now "unclassified". I think it means that I am somewhere between ET and MF and I have found this uncertainty quite difficult to deal with at times. It's like none of the information fits properly, or I don't fit into any of the boxes available. I think that the distinction between the different MPNs can be quite fluid, and as far as I understand the BMB result is an interpretation only. I try not to focus too much on what might happen in the future and feel that I am in very good hands at the hospital, which helps a lot.
Stay positive! Nobody can predict what might happen in the future, not even the doctors. Find a team of doctors that you can trust. The MPN team at Guy's hospital is great, in case you want another opinion. Good luck.
Thanks Cecilie. I relate to all of that - I want concrete answers and actually concrete answers don’t always exist. The docs have a complex series of clues and suggestions and try to paint a picture from it. Focusing on the here and now is definitely the right approach and I’m hoping to do just that.
Hi Tim what a terrible time you have been through! I hope everything settles down for you now and you have the correct diagnosis. Good luck to you. You will always find help and support here on this forum. Karen
What a rollercoaster! Emotional turmoil or what?! Others have given all kinds of useful advice. I just wanted to say, if you are already in London at UCHL I would seriously consider going to Guys for the long term. You are within a stones throw of a world renown MPN centre. I was first diagnosed by a very well respected Professor of haematology at another major London hospital - and even he said, if I was you, I’d go and see Prof Harrison. Wishing you all the very best.
It’s a very good suggestion. They were my chosen hospital until stem cell transplants were mentioned. However I feel the doctors at UCLH have been making all the right noises and both people I’ve seen are specialists in MPNs so I’m going to save the added energy of transferring and stay here for now.
The key thing is you trust and have confidence in your heam team. You can always seek a referral to Prof Harrison along the road (I'm afraid it's a long and winding one). All the best.
2005 I had 2 hours to live as I had a blood clot in my brain, I suffered for 6 months before the doctors found it. It took 6 month to get better. 2007 I was told I had E.T, I didn’t understand it then, over the years the information was much clearer. I take Hydroxy and aspirin. A few weeks ago I didn’t feel well. I’ve had to have a bone marrow test. Still waiting for the result to see if it is MF or something else. My spleen is up and down, I’m waiting for a scan to see what size it is and do they have to do anything.
I do have bad days but I like to think I have more good day. I look at life day by day. I’m a positive person most of the time. Truthfully I am a little worried about the results to come. But I will face whatever the out come and fight it. The doctors told me “ you will lead a normal life.” And I have.
Thanks Wendy and sorry to hear you’ve been through so much. Well done for staying positive. I’m feeling mainly fine at the moment so hopefully I can remain like this for some time. Good luck with the BMB - waiting for results when you’re worried is just horrible. Fingers crossed x
Been diagnosed with ET jak+ 3 months ago. Been on hydro 1 tablet a day for two months and my platelets dropped from 1200 to 600.two days ago I had my app and been told that I have pre Myelofibrosis.
Which more likely develop in the future to Myelofibrosis.
My chemo has stopped now and been told to wait for another appointment and blood test in 4 weeks.
The doc wanted to check how quick my platelets will go up again and then he suggested interferon.
I have been seen loads of positive views from people here regarding low dose of interferon as it could possible slow progression of Myelofibrosis
Yes it’s hard atm but hoply we can cope better with time
Hi Ela. I’m 38 so similar age. Platelets around the 520 mark and HCT 0.46 at last appointment. Have been stable like that for six months now. Not on any treatment myself but am also interested in peg interferon after reading around the subject. My doc not convinced it slows progression but then others are so it’s hard to know what to do. Please give yourself some time to process the diagnosis - nobody is expected to deal with it in a few days or even weeks.
My appointments are always really short and although me and my husband are asking lots of questions we are still confused.
I will speak with my hemo nurse on Monday and ask her if I can have a copy of my blood tests etc. My doc just said that my blood shapes indicates pre Myelofibrosis and it more likely develop in time. Didn’t mention the level of HTC or other indicators.
Glad u doing ok and you stable without any medications for 6 months now.
I also have two kids.Two girls aged 4 and 8 so it’s eassier that having 18 months old 😜in your case.
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