Hi. I have just been diagnosed with Essential thrombocythemia (ET) and positive for JAK2. I am seeing the haematologist for the first time on Tuesday. Does anyone have any advice about what questions I should ask? What are the important bits of information to retain?
Are my symptoms (fatigue, shortness of breath and heart palpitations) likely to improve? I haven’t been able to work since September and am concerned about finances long term.
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Hi @Emsy a great big welcome to our forum, you are now part of our family
I would say to write all your fears, questions and practicalities down so you cover everything you need to know.
You have started your list already by the questions in your post.
I will send you a link to some information
I’ve just been told I have blood cancer | Blood Cancer UK
It also briefly mentions your work rights and where to go for financial support.
Under ‘Just diagnosed: what happens now’ there are thoughts for questions to ask
It does not seem to matter which blood cancer we have we often have similar fears, thoughts, questions and practicalities.
Thanks so much for having the courage to raise financial concerns as it is so often not talked about.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
I hope you get answers to your questions on Tuesday and please do let us know how you get on.
Many of us have learnt that we need to be pleasantly assertive.
Really look after and be kind to yourself
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Good evening @Emsy, @Erica and others reading in, I was diagnosed with Essential thrombocythemia (ET) a little over 5 & 1/2 years ago, following my first (to date) heart attack 6 months prior to that, although I have the CALR+ mutation. I have been on Pegasys injections since April 2018, with varying doses and frequencies, currently on 90 Mcg fortnightly, fortunately on the opposite Friday to when I go out to meet my friends for my social gathering. The hope is that, one day, I shall be sociable with them! 
Fatigue has been my biggest, and most debilitating, symptom and it is, sadly getting more of an issue. I also suffer from shortness of breath (I was diagnosed with asthma when I was 21, some 37 years ago now!) and also occasionally get some palpitations too. How much of these things are down to my Essential thrombocythemia (ET), or my heart condition, or simply my age I have no idea. I am, somehow, still managing to work full time but that is becoming more and more difficult now too.
As regards questions for your appointment with your Haematologist on Tuesday, I would be asking about your treatment options, frequency of appointments, the chances of your Essential thrombocythemia (ET) progressing (however this may be a bit early as you have only recently been diagnosed), name and contact number for your Clinical Nurse Specialist. If you can, try to take somebody with you as two sets of ears are better for remembering what is said, as well as making notes.
Good Luck with your appointment and let us know how you get on.
As always, take care, stay safe, be kind to yourself (the Essential thrombocythemia (ET) has happened through no fault of your own!) and remember to keep on smiling.
Jimbo165
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I can see you have been given great advice already. The first appontment can be really nerve wracking but take your time and ask those questions you have written down.
Please - when you feel ready - let us know how you get on tomorrow 
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Looks like you’ve received good advice here already. I remember my first appointment, my lovely consultant explained everything but it was a little overwhelming and I didn’t remember everything she said so in retrospect I’d have taken a pen and made notes alongside my questions. You’ll probably get a chance to ask any further questions, take your time on that, make sure you really do understand before getting up to go. Good luck!
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Thank you all for your lovely messages. What a fab bunch you are.
Today went well. The consultant was lovely. Unfortunately the clinical nurse specialist was busy with another patient but said she will contact me soon. So plan is aspirin, more bloods, bone marrow biopsy in the new year and regular check ups. I hadn’t appreciated that I was young for a diagnosis (42) and she said that I might be able to be managed just with aspirin for many years🤞
Thanks to this group I was made aware that Myeloproliferative neoplasms (MPN)’s can be covered by critical illness 
. For the past 16 years £74 has been coming out of the joint bank account. When we took out our first mortgage the financial advisor sorted it all for us and I never really questioned it, just popped the paperwork in the filing cabinet. It now transpires I might be able to make a claim!!! I am completely shocked and don’t understand why some people in much worse situations than me don’t have their illness covered but Essential thrombocythemia (ET) potentially is. I actually feel guilty. The difference this would make to my family is huge and the worry it would take off my shoulders to get back to work as soon as possible. It all feels like a whirlwind. I don’t want to jump the gun but the lady I spoke with at Scottish Provident has got the ball rolling. Paperwork, evidence, signatures etc needs to be filed, but there is a possibility that this might actually happen. This would just never in a million years have occurred to me if it wasn’t for this forum.
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Oh @Emsy I am so glad that today went well and your consultant was lovely, doesn’t it make a difference. I do like a plan
Please do keep posting as I look forward to hearing more from you.
Really look after yourself
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Good evening @Emsy, and everyone else, hope you are all okay and that the slightly “warmer” weather has been more to everyone’s liking, although it has been pretty wet the last few days with several roads around the areas I have been delivering through flooded, but I digress.
Emsy, I am glad you have had such a positive appointment. Fingers crossed for you that your treatment regime will only be Aspirin.
Hopefully your critical illness insurance will “cough up” for you, but you mustn’t feel any guilt whatsoever. Good Luck with getting all of your “ducks in a row” for signatures and evidence.
As always, stay safe, take care, be kind to yourself and keep on smiling.
Jimbo165
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Good evening @Matt_H, and everyone else, hope you are all well. I remember the start of my journey along this “long and winding road” with great clarity as it all seemed so very surreal and almost as though it was happening to someone else and I was merely an observer.
I was a few months into my life after my, so far, first heart attack and having very regular blood tests, sometimes as many as 3 a week. I had had some blood taken at my local hospital in Hinckley, at the request of my GP and had happily gone home for the rest of the day and evening and had in fact gone to bed when my phone rang at 10:20pm, displaying “number withheld”. I tentatively answered the call, to be questioned as to my identity, by someone claiming to be from Leicester Royal Infirmary. This confused me as I hadn’t been to LRI! after establishing that I was me and that the other person was from LRI, I was informed that an appointment had been made for me at 12:40. Naturally I answered that that time was no good for me as I would be at work, to be told “No, No, I mean tonight.”! You can imagine my shock and surprise at this. But like a good 'un, I went to this, to me, strange hospital, was seen by the doctor, thoroughly examined, poked, probed and prodded before being told that I could go home but to be mindful that I was at high risk of having a stroke or heart attack and that an appointment would be made for me to see a consultant the following week. At no point had I been told either what was wrong or what was suspected. By this stage it was 3:30am on the Friday morning and I was home and back in bed by 4, up at 6 and at work for 7:30 where I managed to last until 3pm before exhaustion got the better of me.
The following week I had my first clinical appointment where the doctor handed my a book and said “I’m sorry, but you have a blood cancer and we shall do some tests to confirm which one you have and then we can discuss your treatment options” and that was pretty much it! Another couple of weeks later, after my first BMB, I was diagnosed with Essential thrombocythemia (ET) with the CALR +ve mutation. And here I am, nearly six years on from that time, 2 BMB’s done, countless Pegasys injections taken, but still going.
Take care all, stay safe, be kind to yourselves and keep on smiling.
Jimbo165
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Gosh, what a shock.
If the phone went here at 10.20 pm I would be really anxious.
As for the 12.40 confusion and the 2 hrs sleep, what a night you had.
Yes, stay safe, be kind to yourself and keep on smiling.
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Good afternoon all, hope everyone is well and managing to keep warm!
Well I have had my first hospital appointment of 2024 and survived relatively unscathed.
At my previous appointment, in November, my consultant was questioning if my Essential thrombocythemia (ET) was progressing into secondary MF. Thankfully the results of December’s BMB show no signs of fibrosis and my Essential thrombocythemia (ET) CALR +ve has been reconfirmed. My apologies to any and all MF sufferers, but I felt a weight being lifted from my shoulders at this news today, even though there will be a number of further investigations to be endured, including an endoscopy for my liver. This has confused me somewhat as, even with my limited knowledge of human anatomy, I can’t see that the liver has easy access to either the entrance or the exit ports!
Again, the consultant would like me to be on a new medication but unfortunately it isn’t licensed for use for people with Essential thrombocythemia (ET) or for people of my young and tender (58!) years.
Such is life.
Take care all, stay safe, be kind to yourselves and keep on smiling.
Jimbo165
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Hi @Jimbo165 you can keep smiling into 2024, good news
Perhaps it is worth asking how can an endoscopy be done on your liver, I am visually considering your valid plumbing queries.
I noticed how you slid in the fact that you are too young for this new medication.
At least I have had my birthday for this year already and very nice it was too.
Yes, I am smiling here although poor Colin the Caterpillar cake isn’t as he made the ultimate sacrifice for me.
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Hi @Jimbo165
I have my first bone marrow biopsy in a couple of weeks. Do you have any tips?
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Hi @Erica, I have always been led to believe, mostly by my sister who was born a few years before me, that once a certain number of birthdays had been completed then the clock starts to go in the opposite direction, therefore your age must be reducing now!
My apologies for being such a sneaky youngster! Genuinely I forget how “old” I am on so many occasions, usually right up until I try to do something at which point my body (aged and decrepit!) rises up and bites firmly upon a soft and tender zone to remind me otherwise. Sadly, my fatigue levels are still on a downward trajectory, but life goes on.
In answer to your question, the British Liver Trust has information that this a “doable” procedure, so I shall, quite literally, place myself in their hands.
Take care and belated birthday felicitations to you.
Jimbo165
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Hi @Emsy, I hope that you are keeping as well as you can and, difficult as this may be, not overthinking the process ahead of you.
Tips for a BMB: loose fitting clothing is a good idea and try to be as relaxed as possible. I realise that this last one is difficult as you are about to have something done that you wouldn’t volunteer for. I don’t know where you are or will be having this done, but I’ve had both of mine done at Leicester Royal Infirmary (LRI). The first one was unpleasant but the second one, in November, caused a lot less discomfort. Make sure that the local anaesthetic has “taken” before the team start working, and make use of the entonox on offer as it really does help.
Hopefully there will be someone around to help you after the procedure, and to get you safely back home too. Try to get plenty of rest once you are home and take painkillers as required.
Any other questions, just ask.
Take care, stay safe, be kind to yourself and keep on smiling.
Jimbo165
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Hello @Emsy, @Jimbo165 has already provided some great advice in terms of your first BMB. I really found it helpful to take a friend with me to hold my hand and distract me with conversation during the procedure and it really wasn’t too bad at all. For me the anticipation of it was greater than the procedure itself. Take care - you’ve got this
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Good evening all, hope everyone is managing to keep warm tonight. It’s already -5 c here in less than sunny Hinckley, and I am so looking forward to my 6am journey to work in the morning!
After my last hospital appointment, on the 5th of this month, my consultant wrote to my GP asking him to prescribe a new (for me) medication called Allopurinol. I have to say that it sounded to me like some sort of garden fence treatment, but I digress.
I have been to collect this new drug from my local chemist today and the Pharmacist’s Assistant said " Would it be okay if the Pharmacist calls you next week to see how you are coping with the side effects?". Now, I’ve been on a wide variety of medication over a large part of my life but I have never once been asked that question before and I was wondering if any of my fellow, and fellowette, blood cancer travellers have experienced this. To be honest, I was a little surprised but have said yes to the call next week.
As always, take care, stay safe and be kind to yourself.
And keep warm!
Best wishes, Jimbo165.
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@Jimbo165
Hi, it’s a barmy -4c here in Medbourne ('Harborough) and falling.
Your experience with the Alchemists is interesting and not one I’ve experienced or heard of but I would be happy to accept such an offer. I’m a self advocate!
I’m a 72 year old with comorbidities with one big cocktail of meds including Ibrutinib for Waldenstroms Macroglobulinemia (LGNHL).
As we all know they encourage us punters to read and understand the patient information sheets and when we do the number of listed contraindications is at a minimum confusing and easily worrying.
The LRI Haemotologist prescribes a life saving toxic drug that has the side effect of raising blood glucose and Hypotension yet it’s the GP who is expected to manage the diabetes and prescribe the ACE inhibitors etc. I’m not sure where your Uric Acid inhibitors would fit in my regimen?
As a relevant aside all my medications be that POM’s, OTC’s, herbals etc. have to be OK’d by Haemo/Oncology and made aware to my Clinical Specialist Nurses but I have a feeling from some of our fellow forum members that they are heavily reliant on their GP’s in their BC journey.
Highly trained GP’s may be in general medicine but other than their specialisms (mine’s a bone doctor) they may have never experienced some of the miriad Blood Cancers let alone the varied treatments. My condition is I’m told three in a million of population. The Pharmacist is essential in the treatment team and not just a ‘drug pedlar’.
Forgive my ramblings but the right competencies in a team is essential in my book.
Now look I’ve gone on so long it’s now -5c!
All the best and keep taking the tablets 
and remember to keep hydrated 
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Jimbo165 I was out on Allpurinol for the first month with hydrea. I was told it was to protect my kidneys as my body adjusted. That’s my experience. Good luck with the pharmacist next week. It’s good they are doing a follow up.
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Good evening @Liz59, and thank you for your kind response. I’m not entirely sure why my consultant has put me on this new medication, although I think I recall her saying it was something to do with my urea levels/pain in my fingers, hands and feet. Having also spoken with a good friend, who is a prescribing nurse practitioner she seems to think it is for my liver, which seems to be under almost constant attack these days!
Thank you, and I await the start of this new medication on Sunday, and the call from my pharmacist next week.
Take care, stay safe, keep warm and carry on smiling.
Best wishes, Jimbo165
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