Diagnosed with Essential Thrombocythemia (ET)

@Jimbo165 wimps -7 yesterday in Newcastle at 5am and friends house in the moors was -9 with wind chill down to minus 16.
-7 again at 4am outside Norwich, nose went back into the sleeping bag lol
Now I turn away for a couple of days and you have self organised a sponsorship deal with an oats milk drink company, how do I explain that to Colgate.
Shiver every time I go past Leicester RI after my mum turned into the crem instead of the hospital for my appointment once lol.
Take it easy on those roads and don’t forget the sympathy limp when the daughters are around :wink:

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Good evening @clickinhistory, hope you are keeping well despite the cold. Pardon me for asking, but are you old enough to remember the the Great Chill of 1982 where the temperature overnight was -26C in England and -27C in Scotland? We still have some way to go to reach those lows. However, since my heart attack and my Essential thrombocythemia (ET) diagnosis I really do “feel the cold” like never before! I was the “bratty kid” who was always playing out in all weathers, and usually the colder the better, but absolutely not anymore.

On a different note, my CPC day on Monday was one of the more interesting ones I’ve endured, on the subject of "Driver Mental Health and Well Being, until I discovered that I was the oldest one on the course! That hurt my mental health!! :rofl:

If you are ever down Hinckley way one weekend then let me know and I shall attempt to buy you a drink somewhere.

Take it easy, keep warm and look after yourself.

Jimbo165

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Ha ha ha “like some sort of garden fence treatment…” I often think Scrabble would be funnier (and have higher scores) if we could use medicine brand names.

Anyway, funny you should mention that assistant pharmacist’s alarm @Jimbo165, but the one time it happened to me was at a pharmacy I’d never been to before and the assistant tried getting me to chat with the pharmacist about the medicine they’d just sold me. Even though they could see I’d had it before, plus I wasn’t in my usual city and so was obviously not a regular patient. Very annoying, although maybe they thought they were being careful.

In my situation I got a sense that it happened due to their inexperience and/or the scary warnings on the medicine’s box, rather than their advanced knowledge. Maybe check with your haematologist to confirm there aren’t any contraindications between the new medicine and others you take, or if you feel confident reading medical jargon have a look yourself online?

As for your urea levels/pain in hands, I believe we Myeloproliferative neoplasms (MPN) survivors are prone to gouty arthritis due to increased uric acid deposits in toe/finger joints as a side effect of our delightful blood disorders and treatments. I’ve had bouts of it too, in my finger, which passed. Hopefully yours will too :crossed_fingers:t3:

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Hi @Duncan, thank you for your kind reply. This occurred at my usual pharmacy, where they are aware of my blood cancer although I collect my Pegasys from the hospital pharmacy. It seemed so “out of the ordinary” to me as I’ve never been asked this before.

I’d be happier to deal with the gout like discomfort if I was a big cheese eater or port drinker but, sadly, neither of these delicious items appear with any regularity in my diet, especially the cheese since my heart attack.

At the risk of sounding like a whining whinge bag, I’d quite like to spend a day or so without any discomfort and to enjoy a good nights sleep but, again sadly, I don’t think these apply too readily or easily to us Myeloproliferative neoplasms (MPN) survivors/endurers.

Such is life.

Take care and stay safe.

Jimbo165

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Hey there @Emsy, I’m really sorry to read about your diagnosis with Essential thrombocythemia (ET). I’ve got a similar Myeloproliferative neoplasms (MPN) to you, Polycythaemia vera (PV), and recognise many of your concerns and queries at this early stage after diagnosis. It can be a bit much, can’t it?! Sounds like you have a great prognosis if you may not even need aspirin. I’ve taken aspirin daily for over a decade and not noticed any side effects, so don’t let that worry you, should you need to take it too.

There’s nothing I can add to the great advice others have offered regarding the bone marrow biopsy, but I would second @Jimbo165 and @MaggieLT’s suggestions of having someone trusted there in the operating room with you (to also help afterwards), plus wearing comfy clothes, as well as trying to stay as relaxed as you can during the procedure. Thankfully I didn’t read much about BMBs before mine, and oh my some folks have really difficult times. My surgeon said he’s often called “the mosquito” as his patients typically only feel the prick of the anaesthetic needle.

I would say go into it expecting it to feel a bit like having a tooth pulled under anaesthetic, if you know that sensation, but not to expect pain. Mine just felt very strange. If I may be slightly graphic for a moment, the worst part was sensing that my pelvis was being scraped from the inside, but without there being any pain. The area of my back felt a bit bruised internally afterwards for a week, but that was it. Now there’s just a tiny scar left.

Keeping my fingers crossed that yours passes uneventfully!

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Aw @Jimbo165, whine away! A problem shared is a problem halved, and all that…

Discomfort at times does seem to be a given for us, but actually it’s our doctor’s job to tend to that too. Imagine living with these disorders but not having to feel uncomfortable?! I get a sense, using myself as a case study, that as our blood cell numbers decrease and reach more normal levels many of our most annoying symptoms reduce too, so I hope as your treatment progresses you experience less discomfort.

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@Duncan ignore @Jimbo165 moaning, it is because Colgate haven’t come through with a sponsorship yet :smile:
That and he has not been picked for the darts team again, forgets to aim for the board and goes for someone’s vein in their arm :wink:
Arm and bone pain is fun with the joints, very interesting discussion on the radio this week on how cold affects us, including why we pee more in the cold. It is the contraction of the blood to the inner core. Our thick blood is like, “Hang on, just got up the stairs to get here!” so decides to fall down the stairs instead, so even more lack of the warming stuff in our extremities.
Hinkley, commuter over sized village these days thanks to no one wanting to live in Birmingham and everyone working in Magna Park :smile:
Yes, was in the East Midlands Wolds in a small village when that weather came down, even survived the ladybird mass assaults in the droughts of 77.
Godson has the Cottage inn at Fillongley, and family close by, Aunt and Uncle used to live in Atherstone. So be good to find a pub we can slowly walk to one day LOL

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Hi @Jimbo165 ,
While waiting in the queue at my pharmacy the other day two people were asked if the pharmacist could ring them to check in on their new meds,…is it possible this is a new thing to take pressure off the NHS maybe? I’m a fellow Leicestershire local, maybe it’s just a Leicestershire thing?
Take care Jimbo x

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Good morning @AllyBally, and everyone else, I hope you are all keeping well and looking forward to Storm Isha’s imminent arrival.

I spoke with my Essex based cousin last night, who is a Pharmacist’s Assistant and she has “put my mind at rest”, (what’s left of it!).She said that it is routine practice where she works whenever anyone is put on a new medication and that it is called a New medicines Review.

It still feels slightly ominous however, especially having read the leaflet that came with the Allopurinol. Anyway, the first of the new tablets has made it’s way in to my system, so time will tell now.

Take care all, stay safe, be kind to yourselves and carry on smiling.

Best wishes, Jimbo165

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Hi @Jimbo165.
I hate the early starts. I’m half an hour after you but it’s been so cold!
Have you had any side effects yet?

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Good evening @Nichola75, and others, I hope you are all well secured and not being blown away by Storm Isha’s non-benevolent breeze! Flip me, but it’s blowing a “hooley” out there just now! :cyclone: :cyclone: :cyclone:

Not so far, other than feeling even more tired than usual, so I may swap the time I take the new medication to the evening in the vain, and vague!, hope that it may help me to sleep better.

Reference start times, in a previous career, and what now feels like a previous life, I used to start at 6am several days per week, 5am once a week, 4am once a fortnight and 3am once a fortnight too. I didn’t finish any earlier, we simply travelled further to make the deliveries! I won’t even mention night’s!

Take care, stay safe, and don’t get blown away on an unkind wind.

Best wishes, Jimbo165

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I bet you don’t miss those early starts!!! Glad you haven’t experienced any side effects yet.
Take good care of yourself :blush:

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Afternoon all, hope that everyone is keeping well.

Just an update on my new (to me!) medication, as well as my new friend at the chemist!

I had the follow-up call from my pharmacist, on Thursday afternoon, and after going through the various “changes” that had occurred since starting the new tablets (Allopurinol) last Sunday, the pharmacist urged me to speak with my GP. I managed to get through to my GP practice on Friday lunchtime, during my work break, and arranged for a “call back” that afternoon. The call came mid afternoon at a, fortunately for me, convenient time and after repeating the changes to the Advanced Nurse Practitioner she advised me to stop taking the Allopurinol and she would prescribe some strong but non-drowsy antihistamines to try to calm down some of the skin issues and also to hope that by stopping taking the new medication will help assist with the other “new and unwelcome” sensations that began during Monday and Tuesday. The ANP will be writing to my consultant to advise her of my reaction to the tablets.

I won’t go in to detail beyond saying that, flip me, there were some very severe and sharp pains in my lower stomach and beyond!

As always, stay safe, take care, keep on smiling and remember to be kind to yourselves.

Jimbo165

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Thanks for the update @Jimbo165, luckily I have had my dinner.
Sorry to hear about your side effects from your medication and I hope that your medication gets sorted soon and you are back to smiling.
Be very kind to yourself…

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Hopefully they have it sorted now. Doesn’t sound very nice. Take good care of yourself :blush:

Good evening @Erica, and @Nichola75 hope you are keeping well. My humblest apologies for any upset or distress with my update: I was trying (without too much success!) to be delicate with the effects the medication had had upon, and within (also without!!) my poor, sickly and tortured frame. The majority of the discomfort occurred within a “male only” region, although I’m not sure if that clarification will help with your safe digestion. :innocent:

Oh, fear not, I’m still smiling! It’s my natural default setting, that and I am still waiting for @clickinhistory to make good with his promise of a contract from the toothpaste company!

Take care and stay safe please.

Jimbo165

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There is no need to humbly apologise, @Jimbo165 there was certainly no upset or distress caused!!

@Erica, I’m just a poor and 'umble servant Ma’am and get carried away occasionally with my humourous verbiage. :rofl:

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No distress here either! Just glad it’s all cleared up! Thanks for for the clarification :joy:

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It’s Ok @Erica , he drives lorries, nothing to do with the medication and more to do with Betty’s big buns butty wagon deep fried mars bar and black pudding breakfast special :wink:
Colgate are being slow, checking their records about a driver absconding with a trailer of Pearl white toothpaste from Magna Park. Driver was spotted stopping frequently on the A5 heading south and disappearing into the bushes :wink: