Happy to report that the jolly Hydroxyurea ordnance that I bravely swallow after lunch every day is doing the trick. I am now 4 weeks into the battle and the platelets have gone from 1255 to 939 over that period. The good thing is that the reduction is happening on just one 500mg tablet per day, I consider myself very lucky as I know some of you have to take a lot more than that to get the pesky platelets numbers to reduce.
Regarding side effects, I am actually feeling a bit more energetic now than I did before taking the stuff, and the weird problems that I had with painful toes, numbness and so on that I had when my platelets got really high, has mostly cleared up apart from one big toe that still grumbles a bit (silly old thing it is!).
I encountered a little "turbulence" in life's blissful millpond a week or so ago when I went to see a new GP that is at our practice. He was excellent and very thorough....very..., and I was able to talk about my "plumbing" and other mysteries that lurk somewhere in the region below my manly tummy button... Sadly there may be a problem going on and urine samples were dispatched poste haste to the lab and I'll be having a scan that the Dr hoped would be in 2 weeks, but (our health system being what it is down here in NZ) it will be on 1 May, which I am told is quite good compared to what it might have been!
I was a bit sad for a few hours after the GP appointment as the ET has been quite enough to get the balding ageing head around, without there being intimations of other threats to the person, but I have bucked up again and am enjoying playing with the cat, playing Bach on the ukulele, and am delighted to have had a really successful firing of my wood fired kiln (I'm a potter).
Often pots can be disappointing, frustrating, or a bit blah, but sometimes the potter can give thanks for something truly lovely, magical and mysterious that has been a gift from the kiln! The photo is a detail of a copper red glaze that is on a fairly large shallow bowl that I made. I had put a splash of a copper blue glaze over the red, and this has combined with the copper red in a wonderful way. Close up it looks a bit like a slide of one of our blood disorders, but in a rather lovely way! I am now looking forward to making some large, shallow bowls that I can try this glaze combination on ... I can't wait to get started!
Anyway, Kind Thoughts to you all.
Peter
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Good news on the platelet front and hopefully the scan in a month will be normal, it can be so frustrating having to sometimes wait so long here. I'm still waiting for them to tell me my next appointment date which should be in May. Yes I really thought the picture was of blood or human tissue until I read the post 😂 a really nice glaze!
Hopefully coming over for a day trip with my husband and son over Queens Birthday weekend just not sure which day yet. I'll private message you to see which day you'll be around 😁
Lovely to hear from you at this strangely altered hour of the day! I have been busy winding clocks back to adjust to daylight saving, and it is a bit disorientating seeing an hour vanish so rapidly! It is marvelous that Hydroxy is doing so well at the moment, I was most reluctant to start the stuff, but it is a load off the mind to see platelets sliding downward without too much collateral damage! Early days I know, but it is relief all the same.
Waiting seems to be something we have to do with health related things here. I feel sad when I remember the health service we used to enjoy back in the 1970s, and can't help but feel that the economic reforms this country went through did more harm than good, but... unlike the time pieces that I have been adjusting this morning, we can't wind the clock back!
I'm trying not to worry about things I can't change, but am doing my best to focus on more enjoyable things, of which there are many. I must say that it is good to have the potting to do and the glazes to ponder about.
I do hope you are able to see us over Queen's Birthday, it will be good to catch up with you. You will be the first member of the MPN family that I have knowingly met in person, so it will be a historic event!
Sorry I've just realised you answered me 6 days ago, I've been busy with work and really tired this week, more than usual, just did my monthly blood test today so we'll see what it is early next week
The UK was also pretty slow to get things cuecked when I left back in '98 to go to the Netherlands, however the Netherlands were always pretty quick to sort things out.
I don't know about your cats but my dogs seemed to think it was dinner time at 5.30pm today even though the usual time is 8pm, they obviously think the clock went back 2 1/2 hours Yes it would be good to meet someone else with an MPN I've just found and joined a Facebook page for the MPN Australia & NZ Myeloproliferative Neoplasm Support Community thanks to Marion earlier this evening, that seems to have a few other NZ people but I think I'd have to post to find them, maybe there are enough to have a meet up or maybe they are having them already, do you know of it?
Good to hear from you, hope you have a restful weekend and can "recharge the battery" after a tiring week.
Regards Facebook, I haven't joined up with it, I have only just managed to keep up with having a blog and could never get the enthusiasm together to do the Facebook thing as well... in consequence I was unaware of the Aus-NZ MPN Facebook community. It is interesting that there are a few other MPN people from NZ posting on a Facebook page for this part of the world, and that perhaps we might be able to be of help to one another. Our medical system here is certainly "unique" and not very even in what it does across the country, so I imagine that there will be other MPN people who could appreciate help to navigate it! There might also be enough numbers to assist with putting a request to the minister of health to consider funding other treatment options such as peg interferon and newer drugs as they are developed. Whilst I am thankful for HU lowering my platelet levels, I wish that peg interferon had been an option to try first.
I've fed our cat twice already and it is not quite 6.20am! Really our 4 legged friends need to learn to tell the time. I've tried pointing to the clock and going through the routine of "This is the big hand, and it is pointing to....", just like we did at primary school, but no luck so far!
Best Wishes,
Peter (and Nigella Stopit now snoring contentedly by the electric heater!)
Dear Biggles. Love it! The glaze that is. Maybe you can make our very own MPN souvenir pots! Delighted platelets in free fall. Sorry about the plumbing issues. Am sure you will keep us posted.
What-ho! Ebot, I confess to having slipped slightly out of character in this post, but Biggles will return soon, with white scarf blowing in the slip stream and a thin film of castor oil on his goggles! It is annoying about the plumbing, dash it, but this heroic aviator refuses to get in a flap!
The glaze is fascinating, I had a red only version of the glaze in an earlier firing that was lovely (and looked even more convincingly like a blood slide), but the blue in this one really sets it off. Not sure how repeatable it will be, but I'll certainly be trying. MPN souvenir pots... you never know!!
I too thought the picture was of a blood sample! I think MPN pots could be the way to go - you've got a good marketing tool by using this forum - although the postage prices could be a problem. Or maybe we could all come over and collect one in person!
Also I misread the post as the cat playing Bach on the ukulele! You could try and train it to do so, but cats often don't want to do what you want them too!! Sorry about the plumbing - hopefully it's something and nothing as we say here.
Thank you so much for giving me a laugh last night when I read your reply. I loved the mental image of our cat playing Bach on the ukulele, and when I re-read my post, I could see why there was confusion! Our cat would be more adept at playing the piano than the ukulele, indeed there have been many occasions when I have watched her solemnly kneading a cast off pullover with her front paws when she has reminded me of a concert pianist pounding out something slow, dark and moody! It has to be said that, from some angles, our Nigella Stopit (for that is her name!!) resembles a well rounded bear more than a cat, so a grand piano would suit her best!
MPN pots... do come and collect them in person! We should organize a grand Southern Hemisphere MPN jamboree and serve a BBQ on pottery platelets!!
Always get a kick out of reading your posts... Loving the glaze! Put my name down for an MPN pot! I'm into my ninth month of 500mg Hydrea per day without too many side effects that I can pin on it and a good reduction in platelet numbers. Keep up the potting, its something that I've always had a hankering to do but have yet to get round to .... Merry xx
Good to hear from you. Glad that the Hydrea is helping you too. Do get round to the potting if you can, I'm so happy to have taken the plunge with it a dozen or so years ago. It was like being given a new set of eyes and hands. When I started potting even a cup of coffee at a cafe was transformed, as I would become far more interested in the weight, balance, and proportions of the cup and saucer more than the contents. My wife still tells the story of how I absentmindedly upended a bowl of freshly made jelly, because I got so interested in the glaze that I forgot about what was inside the bowl!
Still going in the right direction regards the platelet count. Long may it continue! Also great that you feel it is helping with your symptom burden.
Sorry to hear about your other medical problem though. I presume a bit of mixed feelings for you. Anyway, hope it’s dealt with quickly and nothing too disconcerting.
The copper red glaze is really amazing and like others, I thought it resembled a blood slide too.
I am interested at the reduction of symptoms after starting Hydroxy, it was not something I really expected, especially whilst the platelet numbers were still above 900 or so. I'm delighted that this has happened though. When browsing through various HU related posts on the forum, I notice one or two others mentioning feeling an improvement and more energy after starting the stuff too. Of course I also note with sadness that others have a really rough time with the medication, it really is a very individual thing.
The other medical stuff has slightly reduced the merriment here, and the waiting times in this part of NZ are rather appalling/scandalous for prostate or related problems, so this will probably be a very long process.
Good to have the pottery to do and discoveries waiting to be made in the studio every day.
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I am now looking forward to making some large, shallow bowls that I can try this glaze combination on ... I can't wait to get started!
I've just found and joined a Facebook page for the MPN Australia & NZ Myeloproliferative Neoplasm Support Community thanks to Marion earlier this evening, that seems to have a few other NZ people but I think I'd have to post to find them, maybe there are enough to have a meet up or maybe they are having them already, do you know of it?
What are your current counts ?
MF transplant update - days +21 to +40
Enlarged red blood cells 
platelets increasing ?
