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What a year - and some good news to end it

Hi all,

Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it.

Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no leukaemia cells but, again, when the doctor tells you something you tend to take their word for it). Back in February I was preparing for a stem cell transplant.

Luckily I transferred to another hospital and thank god I did. After a long year of tests - spleen scans, repeat BMBs etc - they’re now confident I have a slightly progressed form of ET that is remaining nice and stable. I’ve been downgraded to a low risk patient - appointments every three months, half of them on the telephone. Can’t begin to explain the relief! Sometimes have to read my first diagnosis letter to check I haven’t been making it all up!

In a strange way I feel happier now than I did before any of this happened, despite having a blood cancer that I know can progress in future. Getting this second chance has changed my entire outlook for the better.

I’ve had great support from friends and family but sometimes you really need to talk to people who are going through similar things and this forum has been a wonderful source of support to me. Thank you all and I wish you all the best with your MPN journeys.

Tim x

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Tim

Was your original MF diagnosis from an MPN expert?

And do you remember on what evidence you were dx AML?

Just intrigued how they could make such a mistake? I assume it was all based on shape of blood cells but AML, I thought, required high blast cells?

Anyway, great news that you swerved the SCT, albeit now with a few grey hairs!

Best Paul

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No it was from a general haematologist but it did go to an MDT at a large NHS hospital so wasn’t one voice. The clinicians view didn’t really represent the pathologist reading (which said it “could be” cellular MF - but I never saw this until much later) so it’s hard to say what happened. Never had blasts, new docs are very confused where the AML talk ever came from. I should be a bit angry but I’m just relieved tbh

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Hi Tim, so pleased to hear your year is ending on a positive note that’s great news! As you say, what a relief after the shocking news you initially received.. I remember reading your first post & thinking my goodness you have a lot on your plate right now so it’s great to hear things are now not as bad as we thought. Thank goodness you got a second opinion! Have a wonderful Christmas celebrating with your family xx

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Hi Tim,

I am so pleased for you that you have got good news! You really have had a most difficult time of things, but what a relief to find things are not so grim after all! Wonderful.

All the very best,

Peter :-)

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Hi Tim what good news it’s strange how theses things happen but has you say thank goodness you found a good doctor you can now start to enjoy Christmas and a new year best wishes Poppy

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Hi Tim, yes,it must be such a relief not just for you but for your family. It is always nice to hear good news. I hope you & your family can now enjoy christmas without a black cloud hanging over you.Atb,tina🤗

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Hey Tim, , I'm truly blown away by your downs and ups this year. I can relate as I know what mental anguish I went through in the lead up to my SCT. And of course al the deliberation that preceded it. Like many my MPN MF diagnosis was like a bad dream and I did wonder if there was some mistake and it would go away, but alas no.

I do know somebody at my local clinic who had his case packed and was all set for SCT for CML and a final BMB came back showing he had somehow gone into remission. He still is 4 years on.

Tim I'm made up that your MPN diagnosis is down graded and you can sleep easier especially as i see you have at least one young family member to be there for.

Thanks for sharing your great news - Chris

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Thanks Chris! Yes certainly was mental anguish for a while (felt a lot longer than it actually was!) but I do feel a bit sheepish talking to people who actually went through a SCT - i can’t imagine what that must have been like. That story about your local clinic certainly beats mine! Wow talk about back from the brink. It’s pretty crazy this life. Thanks so much for your message Chris it’s made me a bit emotional - and yes it means the world to know I should be there for my little girl for a good while yet! X

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The guy I know felt the same guilt having dodged a bullet, I must say I didn't quite get why . He just said he felt a fraud when others had or were about to chance their luck. Obviously we told him we didn't see it that way and were happy for him. It was better than a lottery win. I guess you must go through a raft of emotions when you find out things aren't as bad as you were lead to believe.

Enjoy your Festive celebrations with your family mate. . Cheers

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Hi Chris, did you have that SCT? and how are things with you now?

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Hi Kelly , , yes back in Sept 15 , and we'll documented in some of my previous posts. To recap the procedure itself went well but after 6 weeks the Graft wasn't responding so Doc stopped my immuno-suppressant to force it to work which did the trick. It worked a bit too well and I had a severe reaction known as Graft Versus Host Disease which I was lucky to survive if honest.

But I'm still here to the tale and my quality of life is ok, , I'm not the person I was but considering I had Intermediate Stage 2 Myelofibrosis , an SCT and Stage 4 GVHD requiring intensive treatments I'm a happy bunny because I have my life.

Regards - Chris

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Chris do you take immunosuppressants now? And if so don't you get ill? It is good to educate ourselves about the different stages of progression. Thank you.

Kelly

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Ive just weaned off Ruxolitinib and am I'm on a small dose of Ciclosporin, the main immuno-suppressant. Doc intends to get me off that next. Most Transplantees are off them within 3-6 months but as my GVHD is still active but largely spent I need to come off them slowly by dose reduction over time.

I am susceptible to infection but that will be the case for the rest of my life. I do need be careful with Chickenpox , measles as my childhood immunity was wiped clean by the SCT. I will have my MMR jabs when off Ciclosporin. 😀.

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Great news Tim, I’m really delighted for you. It’s going to be a great xmas for you and your family.

Best Wishes

Mary x

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That is so sad that you were misdiagnosed, but what a relief that you found out in time! Enjoy your holiday, and no guilt!!

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Hi Tim

What a nightmare you’ve been through but so very pleased for you that you at last have a proper diagnosis - the relief must be enormous. So happy for you.

Anna x

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Good morning,Tim.

I wish you well on your journey.

I have a saying in our house, which may help you.

If you don't feel wood in the Morning when you first wake up you know you are alive.

This forum saved me too.

Keeping positive does help.

At least the team is keeping you in check.

I am now on telephone consults every three months.

My clinical nurse specialist is very thorough and listens to my concerns which fills me with confidence as is the consultant.

If in two years everything remains the same we may reduce the medication??????

So looking forward to.our cruise at Christmas and my big 65th birthday.

Always am a fighter as I was born premature at 24 weeks.

Can't keep me down for long.

To each and everyone on this forum keep well, stay safe and stay calm.

Happy holidays.

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So pleased for you Tim. What a relief! It’s great when fellow mpn’rs get good news.

Karen x

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Bit of a rollercoaster year! This stuff can seriously mess with your head. But it can also offer some unexpected insights. Always worth looking for the silver lining! Enjoy the festivities. And here’s to an uneventful 2019 - ho, ho!

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Fantastic news Tim! What a huge relief this was. It is so important to get a second opinion as your story so starkly shows. Have your new haemo put you on any medication? Meds like Pegasys interferon can revert fibrosis and even lead to remission in some patients. Anyway, really happy for you! Susana x

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Hi Susana, I’m just on aspirin for now. Happy to stay off meds if the docs are happy but I’ve been interested in Peg so will definitely ask if I feel I need anything. Bit worried about side effects but most people on here seem to do fine with it. X

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Hi Tim, so pleased that you're doing well after all the ups and downs you have been through.

All the best, Cecilie

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Hello Tim How lovely for you and your family to have such good news.Take care Bye Gill

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Glad to hear your news. I know for me also it was in Jan this year received the news of PV. It does change your life and your thinking about life. I go on the 10th for my 3mth check up. Glad you are doing well. I also am so thankful for this site.

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Thumbs up!

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Great news for you Tim, live long and prosper. Science does sometimes make mistakes.

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What great news!

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So very happy for you. Wishing for continued good news as you navigate the health care system. So important that we are determined in our search for a proper diagnosis. My best!

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So glad you’ve had a positive outcome. It’s a difficult decision changing hospitals or doctors

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Good news, so pleased for you. Have a lovely Christmas and I hope 2019 is a good and healthy year for you.

Best wishes

Lizzie

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marvellous news Tim. Maz x

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