MPN Voice
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MF , ET JAK2

Hi All

What a Glorious Day for Prince Harry and his bride. I personally wish Harry and Meghan Much Happiness so richly deserved.

My day is not so happy sadly I got my BMB results yesterday and I have MF along with ET JAK2. Given Hydroxycarbamide 1000mg daily and Allopurinol for 14 days.

My fear is I have just read on McMillon site that the life expectancy of 55yrs plus is approximately 3 years

I have been reading on here many of you have MF but not seen anything about life expectancy.

I can only say I'm shocked beyond belief, ET JAK2 diagnosed 2 months ago, now this. Still terrified of Hydroxycarbamide but I guess I have no choice. But if life expectancy is 3 years? I'm now questioning taking it.

I will appreciate any information on MF ???

I will be going back to my Haematologist ASAP I need more answers and to ask the right questions this time. I was just too shocked yesterday.

Happy Weekend To All

Mary

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Oh Mary, I’m sure that was a shock to hear! I’m very sorry to hear that you are experiencing this. But remember, each and everyone of us are individuals and you should not be frightened by numbers on the internet. Keep your thoughts defiant and surround yourself with positive energy and positive people and give yourself every reason to get up every day and get on with your life. Take all the advice you can and make the decisions that are right for you. My very best wishes to you.xx

Kerry

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Hi Kerry

Thank you for the kind message, you are correct one should stay positive and I'm trying.

I now have questions I need answers to from my Haematologist. Yesterday I just accepted what was said and didn't ask enough questions.

Now I can correct that asap and be difiant, shouldn't have a problem with that, as apparently I was defiant as a child. And my husband definitely thinks I do my own thing and defiant into the bargain.

Thanks for the kind thoughts much appreciated I assure you.

Enjoy the sunshine if you are in UK, it's a rare thing for us.

Take Care

Mary

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Kerry

I didn't thank you for reminding me that we are indeed all individuals, that is good to remember thank you for that.

I was truly panicked by the statistics this morning but you and others have helped in many ways. Are you in Scotland, I just thought the Dee part made me think of Scotland.

Best Wishes to You

Mary xx

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From Northern Ireland Mary!

It’s so easy to get bamboozled with these diagnoses. I remember reading that it takes about a year for a patient to get involved and start asking the right questions. First few months are disbelief and ignorance (especially when the symptoms are slight) the next few months are spent searching for the information you were given at diagnosis time and have forgotten or misunderstood and the last few months are spent gathering information to form your own opinion and then getting brave enough to voice your own opinion and get involved in your care plan with your Dr.

But yes, remembering that you are a person and your own person who you know better than anyone and not just a diagnosis/statistic is very important!

A positive mind can accomplish much more than a negative one. When your mind is positive the body can get back to doing what it is supposed to (with the help of meds and support)

Plus being positive and being informed/part of the decision making process can help us stay in control of the disease.

That’s how I look at it anyway!

Kerry :-)

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Mary

So sorry to hear about your progression. Life expectancy for MF varies from circa three years to over 20 years depending on how advanced it is and especially on your mutations. Have you discussed this with your Hem?

Do you remember your blood counts? I assume your Platelets are still high, hence ET diagnosis pre BMB? This might be a good sign, implying MF still early stage.

You need to determine your DIPPS score. Would you consider a Stem Cell Transplant?

Do you have any symptoms such as enlarged spleen or bone pain? Ruxo is often prescribed for MF and it might be worth asking your Hem whether this is an option for you.

Very best wishes Paul

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Hi Paul

Thank you for reply, my Platelets are 1000.. I'm very new to this diagnosed with ET 2 months ago. Now MF diagnosis, I didn't realise what the impact of MF could have.

I didn't ask for blood count, I need to see my Haematologist ASAP. You have given me some questions to ask. I don't have enlarged spleen or bone pain.

Lots of questions rather shocked to read statistics earlier. Put whole new prospective on it all.

Kindest Regards

Mary.

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Mary

Please, please don’t worry yourself unduly with internet searches. MF normally starts with rising blood counts and then in the later stages, counts fall as your marrow becomes too fibrous to work properly. Before that, the spleen enlarges to compensate (ie increase blood count) for the failing marrow.

Fingers crossed but it sounds like you are early stage. Let’s hope very early stage. High platelets, normal spleen and no bone pain are all good signs.

I would definitely ask your Hem about being genetically tested, especially if you will consider a Stem Cell Transplant. This will help determine timing. And you might want to ask about Pegasys since some Hems believe can be beneficial for early stage MF. Ruxo is great for alleviating MF symptoms but I’m hoping you are too early for it.

Sorry you are having such a traumatic time. There are some MF patients on various forums who are 20 years post dx so there is hope.

Best wishes Paul

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Sorry, should have made clear that an enlarged spleen can also be a result of processing excess Platelets and RBCs. Hence not a result of MF and failing marrow.

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Hello again Paul

You are extremely knowledgeable about this subject and I am very grateful to you for all the knowledge you have passed on to me today.

As said I just accepted that I have MF yesterday and didn't question the implications. The topic was mainly concerned with getting me started on Hydroxycarbamide and it's side effects.

I only questioned the MF on McMillon site today and was shocked. However Paul you have given me many things to ask and it is all good solid information from you.

I'm a retired nurse just turned 66 I should have asked more questions yesterday.

I suspect my Haematologist who is excellent, may have concentrated on getting me started on Hydroxycarbamide and realised from past experience with me, that I would go away and digest the MF and start researching.

Exactly what I did with my ET

diagnosis.

I'm thinking she is probably expecting me back asap next week with??????

I admire your knowledge on this subject, is it from personal experience?

However I truly am grateful for the information, and you have brought a sense of comfort/ reality on a day when I cannot access my Haematologist or CNS. My head and heart is calmer and the nurse side of me is there somewhere, we just don't make good patients neither do Doctors!

I wish you a good weekend in whatever you do and Thank You most sincerely.

Kindest Regards

Mary

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HI Pontygirl,

I'm sorry to hear of your diagnosis, it certainly would be a shock for anyone. I am returning on Monday for my results of BMB to find out exactly what I have and what stage it is at. I'm afraid I'm rather new to all this so I can't really give any medical advice from experience but I do know the internet and how misleading it can be due to the vast array of out of date information out there. Your best place for up to date information I have found it the mpnvoice.org.uk website which does a great job of explaining things, it's a well-developed website which is easy to navigate which helps a lot!

mpnvoice.org.uk

I wish you all the best in researching your diagnoses. and finding a suitable way forward with your MPN diagnosis.

Regards Barry

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Hi Barry

How nice of you to contact me much appreciated I assure you.

I'm sorry I put this out there today, prior to you having your BMB results. I wish you well with yours I was just unlucky.

Yes I'm quite new too I first posted 2 months ago when I had my ET JAK2 diagnosis and the wealth of knowledge on here is incredible with kind people such as you taking time to help in whatever way possible.

Today I was in a nightmare where I couldn't work out how to post my questions. And panicking after reading prognosis on McMillon about MF and ET JAK2.

But kind people have helped just like you and I will wait until I get the answers from my Haematologist next week.

Sadly as said on this site before in many ways we are all in the same boat, even though we don't want to be. And we don't truly know panic until we are faced with fear for ourselves. That I have found to be true and I have also found wonderful, kind, inspirational people we don't even know, come to our aid when needed.

Enjoy the weekend and sunshine

Good Luck Monday.

Kindest Regards

Mary

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Hi Barry

How did today go, I hope it went well for you. Just to let you know you are in my thoughts for Good Results. Let me know how you are, I am truly sorry I put my problems out there, not thinking about anyone awaiting BMB Results.

Regards Mary

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Hi Mary,

Please don't stress yourself, You did what you needed to and I'm sure it helped with so many helpful and understanding people replying. Thank you for your good wishes. My appointment went well thank you, I had done lots of research so I had a good idea of what was going to happen. It was bad news but also good at the same time if that's even possible. to save repeating myself I'll create a new post with info in case it's helpful to anyone else new like us that come along. Not today though! maybe tomorrow.

Regards

Barry

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Hello Mary

I replied to your earlier post before I read this one.. Sorry if my previous reply appears flippant..😢

There are a lot of very knowledge and experienced MF folk on here who will advise and guide you well in sure.

It’s only natural that you’re shocked.. news like that takes some time and a lot of emotions to process. But once the shock has lessened I’m sure you will regain your lovely positivity and meet this challenge head on!

Keep talking to us Mary.

Sending you a BIG virtual hug

Jaynie xx

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Hi Mary, just wanted to say my heart goes out to you. So sorry to read your news. Another bombshell you definitely didn’t need to hear since you had barely had any time to come to terms with your ET diagnosis. As previous posts have said am sure some friendly MFers will be in touch to help reassure you. From all accounts on this forum that 3 year prognosis is certainly not correct. The more information you find out from reliable sources will am sure help to make you feel more positive. Do keep us all updated with your situation. Take care xx

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Hi Betsywest

Firstly thank you for writing, yes you are correct it truly was a diagnosis I truly didn't need. Just about got my head around ET and accepted it along with knowing I owe it to my family to give Hydroxycarbamide a go. At first I refused it, put on back burner until BMB done and lots of Blood Screening just like everyone on here. Crunch time Friday Platelets are 1000 and MF is confirmed. So I have the Hydroxycarbamide here ready to commence. Just need to see my Haematologist again asap and ask the questions I didn't ask Friday. I was somewhat shocked that I also have MF, mind went blank amongst other things.

Since my panic yesterday morning after I read the 3 year prognosis, I now realise that yes this is Secondary MF because of ET. I'm grateful it's not Primary as prognosis for that is different. I don't have any symptoms at all my Spleen and Liver are good.

Thus I believe the 3 year is not up to date and as said my MF is secondary. The kind members of this forum have been fantastic. Yesterday was the end of it all, today I feel hopeful. My Haemotologist is fantastic with a real human touch, not all Consultants are. She is extremely knowledgeable and I appreciate her care. However I will be seeing a MPN specialist in Bath ASAP. I have told my Haematologist prefer to be up front.

I hope you are well and enjoying the good weather, makes such a difference blue sky and warmth.

Take Care

Mary xx

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Hi Mary, sorry you’ve had this scary news - the double whammy is very hard to process. Can I ask if your haemotologist is an MPN specialist? If not then it might be worth asking for a second opinion from one that is. These things are sometimes difficult to interpret and you ideally want someone with specific knowledge to advise you on your treatment plan. I really hope that whatever it is moves slowly - as people have said on here, numbers on the internet are just numbers and won’t make any difference to what happens to you (although I’m sure we are all guilty of reading them from time to time). All the best with everything x

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Hi Timjonze

Thank you for the kind message much appreciated. Yes I'm sure myself that we all study the statistics, sometimes not a wise decision.

My Haematologist is excellent however Maz gave me the name of an MPN Specalist in Bath. I will see my Haematologist this week asap more questions need answering. I will also make appointment in Bath.

I hope you are well and enjoying the good weather.

Very Best Wishes

Mary x

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Hello Mary

I was diagnosed with MF early 2018, after having ET for around 8 years.

It truly is a shock, isn’t it? You don’t really take everything in when you are told, and I have to admit that I’d never heard of MF! But I suppose I am surprised your haematologist didn’t give you a little more information. I was told I am low risk - my symptoms were an enlarged spleen and elevated WBC. I otherwise felt fine. I am now on Ruxolitinib which has shrunk my spleen so much I cannot feel it, and my WBC has come down a bit , but not back to ‘normal’.

I agree with everything Paul says - you will soon learn he is our MPN guru! I am sure you will be able to speak tomorrow to either your haematologist or nurse and get some clarification.

Have you had a BMB - bone marrow biopsy?

Wishing you well and hoping you are feeling less anxious. Do let us know how you get on this coming week in your search for more information.

Paula

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Hi Paula

Thank you for the kind message, yes I had BMB and Friday was Results day. My Haematologist is excellent and yes a bit more information would have been good. In her defence so to say, she was very taken up with getting me signed up with Hydroxycarbamide. Plus my husband sat in on this consultation and unfortunately he and the CNS struck up conversation about Harry's wedding the following day. My doctor and I had a job to hear each other speak. You know when there is a 4 way conversation going on in a small room!. Regards hubby I believe he didn't want to hear it. He is struggling with all of it. ET diagnosis 2 months ago, BMB first attempt didn't go well sample wasn't good enough. Second attempt at BMB went well until later that evening at home I felt very unwell. On investigation in my bedroom mirror I could see a massive Haematoma happening, my back and hip was over 8 inches bigger over an area covering lower back, left side of my BTM and down my Rt Leg to my knee! It was a massive bleed I ended up in BRI BRISTOL that night. During my whole career nursing I had never seen a bigger bleed. That has taken 3 weeks to recover and it's still not clear. So my husband has seen a lot and it makes him upset/ angry that this is happening to me. Thus I believe the long chat about Harry was a distraction.

But I too was distracted and didn't ask important questions. I'm guessing my Haematologist knew I would go away and research the MF. I truly believe she will anticipate my return to her asap. Alone!!!

I have gained knowledge on ET JAK2 but I had not researched MF. I truly didn't think the Biopsy would be Positive. I have zero symptoms Spleen and Liver are in good order. Nurses and Doctors make bad patients sadly.

It's not being in control and the thought that I'm the patient, total reversal.

Yes Paul is very knowledgeable if I had to guess I feel he is a Physician. If not then he has studied MF and is really up on it.

Happy for you in the Spleen having shrunk back which is excellent.

Like you I knew very little of ET OR MF I have spent the last 16 years on a Surgical Ward and MPN's are medical non surgical. I have never nursed a patient with it. So back to the books and internet. To have both feels rather unfair but why not we have very young children with all sorts of dreadful illnesses. I have had a life I have 4 children and been married 43 years. It's somewhat selfish to feel hard done by, there are many on this earth that suffer in many ways.

On that note I will stop winging on my lot and get on with it. I will keep Paul in mind, he has been fantastic today and has eased my mind and given me solid information and questions to ask.

I'm most grateful to all of you for taking the time to contact me, it has helped hugely.

I wish you all a lovely day in the sunshine, remember to keep hydrated.

Best Wishes

Mary

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Just to wish you well tomorrow. I myself have an appointment tomorrow at which I'll get the result of another BMB. It's been decided I should have one annually to better monitor the disease progress.

Do let us all know how you get on.

Paula

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How kind Paula really thoughtful of you, much appreciated by me. Before I go along to Haematology Day Unit to arrange a Consultation with my Haematologist, I will be having an Endoscopy. Camera down the throat job just to ensure I'm not having a small bleed as I'm very short on Iron, can't wait ☹️

Paula I'm sorry I told you about my BMB fiasco. You have one yearly, I feel for you. I prefer to have a baby but I'm guessing you have become accustomed to it?

I wish you well tomorrow you will be in my thoughts.

Sleep Well tonight I will catch-up with you tomorrow evening.. Our day will be behind us then and I will know when I can see my Haematologist.

Mary

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Hi Paula

Apologies somewhat late , how did your appointment go Monday.

Mine was a disaster Consultant refused to carry out Endoscopy too invasive.

Haematologist said he needs to have BMB 😬

I posted how the consultation went with Haematologist earlier.

Hope all went well for you, have a nice day tomorrow.

Mary

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Hi Mary

I'm sorry my reply is so tardy! Thank you for asking about my appointment. My BMB showed that the fibrosis had increased slightly from last time (Feb 2017) but that I'm still in the low risk zone. I was unhappy about that increase; it gives you an uncomfortable feeling that the disease is progressing. That said, I have to say I feel absolutely fine. Being on Rux has made the headaches I used to get with ET completely disappear.

I'm hoping that everyone's comments have made you - and your husband - feel a little less alarmed. It takes some time to stop thinking about it first thing in the morning and last thing at night, but I have to say it does occupy my thoughts a great deal of the time.

Hoping you are well, Mary. When is your next consultation? And is the endoscopy happening?

Best wishes

Paula

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hi, i also have MF, mine post PV. The first thing to say is that I am pretty sure the 3 yrs from MacMillan is well out of date and/or based on Primary MF not MF post ET.

I would get myself risk stratified: are u low, intermediate 1,2 or high risk? There is a recognised system for this. If low then your life expectancy is much better and I you may well be lower risk if the NHS are offering you Hydroxy and you haven't reported any recent additional symptoms?? If assessed as high or intermediate2 risk often best treatment is Ruxolutinib - u can lookup life expectancies on the drug website ( 5yrs median as I read it) but note again these are based on Primary MF not secondary, which is what we have. I am in the higher risk category, healthy, 60 and was told 5-10 years life expectancy on Ruxo, and things seem to be improving all the time.

The other option, as Steve says, is stem cell transplant.

I am sure that u r doing the right thing going back to your haem asap, and I would check that they r an MPN specialist - if not get a second opinion I would.

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Hello Jane

Thank you for your very informative reply to my panic post!

You have an excellent understanding of MF and thank you for detailing it for me. Yes we are Secondary MF because of PV and ET. I have written down the advice on knowing where I am on the scale of this illness. There is just so much to take on board. Friday I just accepted the diagnosis I didn't give any implications a second thought. Until the early hours of Saturday I was going through it all in my head and suddenly realised that there has to be implications. Then reading that on McMillon site absolutely panicked me. Then all you good people started to respond and I now feel much calmer. I have a list of questions to ask.

I'm sorry to read you are high risk, I admire how you have dealt with this. You are 6 years my junior, when I was young I never thought about my senior years at all. Maybe it's natures way! Always worked nursing, raised 4 children and so on.

If I have learnt anything from this is to not take anything for granted and enjoy what we have got. Material things are meaningless when faced with MPN's. Just enjoy life and make the best of it with or without MPN's. I will be seeing an MPN Specialist in Bath.

Very Best Wishes to you, I will update once I have seen my Haemotologist. I will also follow how you are doing with interest.

Take Care

Mary

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Mary

Thank you for your kind words but I am not remotely qualified to give any medical advice! I’ve tried to understand the progression process but as a total amateur so please only rely on your Hem.

I’d suggest you think about

Best drug - sounds like your Hem wants to reduce your thrombosis risk. This is a more significant risk than HU side effects so please don’t worry about starting treatment. HU is probably the overall front line treatment and has been used for decades. Interferon is the principle alternative. I’ve just started Pegasys, which is most easily tolerated form of Interferon. Many people struggle with Interferon side effects but I’ve had no problems at all (at 60mcg per weekly injection). There is one camp of respected Hems who believe (are convinced) that Interferon can slow progression incl early stage MF but other Hems not convinced. My best guess is that maybe say 25% of Interferon users do get a better molecular response than HU patients but maybe say 30% of Interferon users discontinue treatment because of side effects such as depression. Hence a real dilemma, especially as Interferon generally takes a bit longer to work on reducing blood counts than HU.

There is a new Interferon, Ropeginterferon, in year 3 trials at the moment. After 2 years, it appears more effective than HU and better tolerated than Pegasys. I think everyone eagerly awaiting year 3 results. I’m hoping this might be available next year. One option might be to start HU and ask your Hem if any chance of early access to Ropeg.

I suggested discussing genetic testing with your Hem. There is a very significant difference in prognosis between say CALR+ (which increases life expectancy) and say ASXL1, which we don’t want. If you are ET, now early stage MF, then you would be unlucky to have any of the bad prognosis mutations.

And re prognosis, remember that all figures you get off the internet are historic. Treatment options are improving at a good pace and imo are at an exciting stage. There is a major difference in understanding between now and say 5 years ago and I’m hopeful that the landscape in five years time will look much better.

Please keep us updated

Best Paul

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Paul

You are truly inspirational and I believe you missed your vocation, you should be a doctor. You have such a wealth of excellent knowledge. You clearly keep up to date with research.

You are so right about the out of date aspect on prognosis. Yes my Haematologist wants to get my Platelets down, I am at risk undoubtedly. I intend to ask lots of questions and now that I'm more informed 95% down to you. I will be asking about Ropeg and I will be able to ask far more questions, that is down to you and a tiny bit my effort.

I will keep you posted after I see Haematologist. Would you mind if I follow you. You take me back to student nurse days, such a wealth of knowledge. I'm aware I definitely need to get with the program now I know I have MF. I usually irritate my family as I need to understand things, especially when I received ET JAK2 Diagnosis, I needed to understand the illness. I should have paid more attention to MF, I truly didn't think I had it.

All the Very Best

Mary

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Hi. I can only imagine your mind must be in complete turmoil. But please, restrict the urge to Google (too much!). Honestly, if we believed everything we read online about MPNs we’d all want to take to our beds to await the Grim Reaper 😂. The fact you have so few symptoms is positive.

And as far as Hydroxy is concerned it’s really not the ogre it’s sometimes made out to be. It’s very well tolerated and the vast majority of people have no negative side effects whatsoever. Certainly that is my experience. The only thing is that my numbers tumbled 👍🏻.

I hope that you too are enjoying this glorious Royal Wedding weather. They really pulled that off yesterday!

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Hi Ebot

Thank you for the really nice reply that is very encouraging to me. Yes you are right I don't have any symptoms apart from ET. And now I'm thinking more clearly and with the help of you kind considerate folk on here, I now realise that my MF is Secondary not Primary that makes a difference to life expectancy. I don't want to live forever but I'm not keen on having a date in mind! I just didn't think I had MF as well as ET.

I'm truly thankful to all of you as yesterday my Haematologist was not on duty or CNS. There just wasn't any way I could speak to anyone, apart from the Forum and you all helped in many ways. It proves we are not alone even in the darkest moments, I reached out and help came. I'm not alone in life , but you can say what you really feel on here. Which I would never worry my adult children with until I really have to.

My husband is worried enough without me putting my darkest thoughts in his head. Considering we are strangers in reality, I have quickly discovered how kind and gently reassuring us strangers are to each other.

Humanity at its very best how wonderful is that! We share a common bond, we are all in the proverbial boat together and we are stronger just by communication and the willingness to read others despair or simply answer a question. It speaks for itself, this is a lifeline. That was my second post since joining 2 months ago and yet again I have been lifted out of a very dark place yesterday.

The wedding was beautiful in so many ways and such a departure from the norm. The bride was stunning and how proud would Diana be to see her boys as they were yesterday. Harry deserves much happiness and I believe he has found it with Meghan. Being female and my husband former military, I noted immediately the page boys were wearing a mini Blues and Royals uniform. How nice to see and especially for George, his dad and uncle Harry. Service such a departure from the norm and all of the music was fabulous. I love "Stand by Me" anyway but that gospel choir did it beautifully. The Celloist I will be buying what a talented young man. And the Opera singer as Meghan walked alone again magnificent, I'm biased as I'm Welsh.

I have included all of my thoughts in this reply to you Ebot as folk seem to read the replies so this is for all concerned with my thanks to you personally.

Very Best Wishes To You and Thank You 😁

Mary

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Hello Mary - I only know about ET as my husband has ET Jak2 Neg and has been on Hydroxycarbamide + Aspirin for 9 years......... in all that time the ET has not shown any symptoms and apart from having his blood tested every 4 weeks - we would not know there is anything amiss. The internet is a great source of information but my advice to you (if I may offer it) is use it to be a 'good informed patient' rather than an 'amateur doctor'. Geta list of questions together for your haemotologist that are applicable to you and you alone. The best advice we have ver been given is that all this is about how you actually FEEL - not how high the numbers are. Very best wishes to you.

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A word of warning 'internet is useful for background information but is not the be all and end all'.

Even on this site, the section concerning SCT is extremely off putting.

You should note , if you do require a SCT - which may not be the case at all - it would have to be done relatively soon in view of your age.

Regards

Gary

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I have purely questions to ask of my Consultant. I would not consider SCT for the very reason my age. I appreciate what you are stating regards the Internet, however I feel "Warning " is a strong word. As a Nursing Professional I believe only what I know to be accurate. I really do not think that McMillon Cancer Research would publish rubbish. As for other sites I don't use them.

Mary

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Sorry Mary, I wasn't trying to imply that 'professional site's were printing rubbish, just that MPNs and other forms of blood cancer are very complicated issues which must be 'personalised' to each individual's situation along with the associated treatments.

I, myself when I learnt that something not quite right was going on, started looking up on Internet and scared myself without fully understanding what was going on and why.

Best of luck and 'courage' for the challenges ahead.

Gary

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Thank you Gary

Yes we all need courage to face the challenges that come our way. I appreciate your reply and I realise we have to filter through information that applies to us individually.

I wish you well on your journey.

Have a good weekend

Mary

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Hi Mary, lately have hesitated putting my good news on the forum site, as haven't wanted to confuse anyone, especially if they are following trusted medical advice.

However, reading the correspondence from you and kind 'supporters', should feel really mean, if I don't say something!

A friend with MF suggested I had 'Pom' pomegranate juice (100 ml per day), i.e. pure juice, no sugar...along with the Turmeric capsules I take each day. I am incredulous that after 6 weeks, my platelets (nearly 1000), have gone down considerably....the first time, ever, ever without chemo!(Have tried all the three usual drugs given for ET in the past, none of which I could get on with.)

Interestingly, my friend with MF seems to be doing well, and although given a low life expectancy a few years ago, this no longer seems relevant and she is really doing wonderfully, also keeping her platelets in the 300's. I owe a lot to her! She and I also believe stress plays a huge part, and as far as is possible, essential to keep stress levels down. Also very wise to keep up the water intake, maybe 2-3 litres a day....but, with your nursing knowledge, you will know far more about that than we do.

Really wish you well, and hope the above might really help you.

Tinkerbell

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Hi Tinkerbell

How nice to hear from you, what good news regards the Pomegranate Juice. I also have Pure Pomegranate Juice daily. I was taking Turmeric Capsules but stopped as I discovered it is a natural blood thinner and I take Clopidagrel for that. I was only taking it for a week.

Such good news about the Platelets I'm very happy for you both.

Obviously things are good with you, which is nice. Let us hope we have a nice summer this weekend has been beautiful.

Take Care chat again soon.

Mary

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Amazing news Tinkerbell. I’m thrilled for you.

I’ve got ET and I’m on 17 tablets a week. My platelets are still fluctuating. 2 and 1/2 yrs after diagnosis. I’m going to buy pomegranate juice tomorrow.

Thankyou

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So hope it works for you. My friend said to be patient, as can take 2-4 months to take effect, though think I only had had 5 weeks before mine started to work. Do let us know how you get on. She definitely recommended 'Pom' juice, which is £3.60 a bottle. Gather some others are from concentrate and also some have sugar, so need to be watchful! Best wishes, Tinkerbell

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I’ll keep

You posted although I might forget so message me. I’m just so forgetful.

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That makes two of us!! Not sure can blame my forgetfulness on the MPN, either!! xx

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Haha likewise, I googled pomegranate juice last night only Waitrose seem to sell unconcentrated so will have to settle for concentrated. When I remember to buy some. Yep I forgot x

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Yes, it is the Waitrose 'Pom' one we have been so strongly recommended, as fresh and no sugar....hope somehow you can get it, as not sure how effective other kinds would be. xx

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Have to admit have switched from Clopidogrel to Turmeric, as both seem to have same effect, but no side effects from the latter. As ever, though, best to go along with the medical people you trust.

You sound remarkably upbeat, despite having so much to cope with - a great credit to your brave and positive self.

Best of wishes, Tinkerbell

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Oh Mary,

All I can say is I’m so sorry you’ve received such news.

I’m sure many MF patients will give you support.

I have ET all I can give you is my sincere best wishes.

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Hi

Thanks for the message, I was quite happy just having ET, it didn't need any company in the form of MF.

On the bright side, I have a foot in both camps.

Sadly it is what it is, I need to adjust and adapt.

One way or another it will work out, I'm a passenger on this boat along with everyone else. I need to get my sea legs.

Hope you are well and thank you for the support.

Best Wishes to You

Mary x

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Wow one plucky lady 🤗

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Hello Mary , I am a Mum whose son was diagnosed with Primary MF just over eleven years ago now. All I can say that thankfully he is really well , works full time and is coming home in July to see us all from Melbourne . When he has his bloods checked I have the same answer, bloods are all good..and the conversation changes to Rugby etc typical Welsh man. I know there is another person on here, I think he is from New Zealand and I believe he has had PMF for twenty years but is having problems now. His consultant n Melbourne is very up on all MPD and is also head of the Bone Marrow transplant team at the Royal Melbourne Hospital. I do not look at any internet sites and never will the initial shock was horrendous for all of us, it does not go away but he is amazing and just gets on with his life .Take care Gill

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