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QUALITY OF LIFE

I am male, 74, have ET & jak 2+ and been taking 17 Hu for 5 years now. I do like a good rant and I guess this is the place. The blasted Hu has made my skin hypo-sensitive to sunlight with regular carcinogenic moles erupting yearly, followed by infirmary trips for removal. Tried moonlight gardening and kept falling over the cat. Tried employing a gardener; you either get whizzy Fred who wants to fit as many gardens per day as is humanly possible or an 'on parole recently released' gent busy casing the joint! The old family retainer type are now extinct. In short my quality of life is down the plug hole! Anyone come up with a alternative therapy for ET to give me back my 'get up and go'?

and as for gardening; don't get me started! And as for factor 50, how are you supposed to operate covered in axle grease?

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Good morning Ashby6708,

I’m sorry to hear of your diminished quality of life. If hu is responsible for your skin cancers I would ask what are the possibilities for a change in treatment. It’s alright hu treating one thing, but causing something equally serious is questionable.

There are people your age on Peg interferon, it’s worth enquiring about. There is also anagrylide as another option.

You did make me laugh with your description of moonlight gardening, and the employment of potential gardening characters.

Mary x

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Thanks Mary for your great comments. Maybe my Hu side effects are getting out of hand. Mmmmm Michael x

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Hi ashby6798,

I have just had a SCC removed from the back of my hand and am constantly on the lookout for any others!

I use factor 50 usually, but must admit I go out sometimes without it. My Dr said it years of sun damage not nesseccarily what’s happening now. (I know the HU doesn’t help) it sort of makes sense to me as I was a great sun worshiper in my younger years. In my teens we knew nothing of sun protection, I mixed up oil and vinegar in a bottle and fried! I think Ambre Solaire was available in factor 2!

It’s good to hear you still have a sense of humour. Love the gardening story 😍

Judy x

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Thanks Judy, wise words. Our life situation makes one super sensitive to these silly young people cavorting around in next to nothing like what we used to, (and can't do now!). O to be young again, but would we do things differently...me thinks not! Now with the overcooked Mother Earth 'white' is the new tan to be admired, (new Victorians!). Michael x

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Know how you feel, but good to have a rant. I love gardening so now what I do is wait until late afternoon when sun is not so hot to work in it, making sure that dinner is already prepared, and that I have already slapped on my Solar D factor 50 sunscreen (from Australia) so it has time to sink into my skin still need the protection, amazing stuff really works, but hey the Auzzies know a thing or two about skin cancer so know their stuff when it comes to sun protection, have friends send it to me, then off I go into my garden, it’s not that big but I love to achieve stripes on my lawn, hubby does the edges for me, but do find this is the best time of day, then sprinkler goes on while we have dinner, nice end to the day been on Hydroxy for over five years now and so far all good skin wise only had one removed on my head, they told me it was sun damage from when I was a young girl where I was always outside and had nothing to do with the Hydroxy the problem was that I never wore sunscreen, well you didn’t in those days ☀️🤪

Still enjoy gardening and getting out an about in this lovely weather but just take the precautions these days. Make sure you drink plenty of water through the day as well this is a must, and try and enjoy your garden.

Jean

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Hi ashby6708,cud not stop laughing at ur post! I'm hoping it was all tongue in cheek! Lovely 2 see such humour off a gent 74yrs young.hope both u & the cat ave recovered. Atb.tico.

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Hey Tico, you're in danger of being ageist...judging by ur text, you don't remember B Bumble and the Stingers.. oh dear , what you missed!

Michael x

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Your post has bought me tears, many. I can relate to the question of the quality of life. I collapsed again the other night at home. I usually wake up and recall the fall but on this occasion I have no memory of anything not even when I woke up the following day at 12 noon or so. I accept my condition, always have. I am intrigued by the process and progression of the condition.

The Doctor whom I saw at the hospital on the weekend told me my incident was caused due to chemical misuse. I guess he may have been a tad shocked when the bloods showed nil alcohol in blood. I don't drink but I do take pain meds. I tried to explain the I had ET and that I had on a few accessions hit the wall and kindly had grocery staff help with my groceries to the car or on other occasions collapsed at home. But he was not hearing me. During a recent incident at home my husband said I was talking but I was incoherent. Has anyone one else had experiences like these? I am in bed again with whole body pain, droopy eyelids and no energy. Is this likely to be ET? Any help appreciated.

ashby6708 you are in my thoughts and for what it is worth I hear you and feel your pain at the situation you find yourself in, your wife's condition and the loss of the person you were who had so many plans and dreams for this stage of his life and who is now confronted to his own condition to deal with. I am 57 and I get it. I really do.

Big hug Anna X

Anna

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Hi Anna,yes I have had a few collapses,usually when I know I am tired ,but try to keep going,supermarche always stressful is a prime example,the heat also,I cannot do much in the heat without exhaustion .I pace myself better now. P V,Hydroxy and other Meds .Take Care,Sally

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Thank you Inca, it's all so confusing. I never know if a symptom is related to my ET or the other way around. Take care and God Bless

Anna

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O Anna, you sound in a sorry state. No, can't say I have had falls, but my balance isn't what it was which I put down to age. Wise word in you last paragraph, we also had lovely plans for this state of life but all to nought; wife now in nursing home leaving me rattling around with rudder shot away! Funerals help to bolster the spirits though!! Michael x

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Michael

You crack me up. Thank you. I hope your wife is being cared for and that you too are well.

If I tell you having re-read this post of yours has made me laugh again you might think 'Great I have brightened someone's day.' Regrettably while your post has in fact been the sunshine in my day, I don't want you to think that I sound like I am in a sorry state. I have just had a real shitty day. That's all. Do you sail?

Anna

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You could also add the supplement astaxanthin (asta-Zan-thin) to your daily regime, plus wear the usual dense long sleeved shirts etc.

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Thank you I will buy the asta-Zan-thin tonight. I was thinking of adding some form of magnesium and b12 too.

Regards

Anna

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What does the Antaxanthin do? M x

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It is one of the most powerful antioxidants sourced from an algae. It minimises sunburn and sun damage.

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Hello my HU Horticultural Friend. How I empathise!

Finally made it down to our little seaside house and am contemplating having to deal with The Garden. The lovely sunny garden I use to think was such a wonderful idea with all the beds I dug from the rubble. Those were the days before HU. I completely agree about Factor 50 axel grease. So my suggestions are ... A Hat (something dignified I feel), some Factor 50 clothing, gardening gloves and a bit of axel grease on the extremities - Boots Soltan Sun Sensitive isn’t too bad. Whether any of us actually has the energy to put hand to spade to soil is anyone’s guess!

(Having been dumped a few weeks back by my long term gardener back at home - just as everything was running rampant - I found a really good bunch of gardeners who are delightful and seem to know their stuff, so don’t despair!).

Here’s to Factor 50 smothered green fingers!

P.S. As it’s summer holidays do you have a family / neighbour teen who might be up for some labouring under your direction? You might acquire a parasol - and a long, stiff drink - while you issue instructions!

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Will definitely take your advice and scour the small ads for gardeners. I can see me now; big hat, (maybe a pithe helmet), white linen suit, G and T in hand doing the Noel Coward impression directing operations! Not, but you can dream. Michael x

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Ha! I was thinking more of a natty little straw number but other than that ..... I think you’ve got it! (BTW ask around at local garden centres - particularly any small independent ones, mine turned out to run a garden maintenance company as well. Also local park rangers / gardeners. ) Chin, Chin!

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BTW ??

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Sorry, ‘By the way’. No doubt Noel Coward would have come up with something more biting.

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Hi Ashby,I am 78 yrs female...given up all brands of axle grease,just makes skin worse!!Had the carcinomas,a life time mostly outside (horses),but not a sun worshipper.Live in France now,heat here impossible to go outside at all at the moment......well run dry so garden must hope for rain.We wait until dark,not cooler but no sun!!!then into the pool for some relief,yes there is the itch,but actually the salt water of the pool is actually soothing for that....must be something in that fact. Hubby and I still 'do'horses and dogs,bit of help with garden...our Dr here thinks we are crazy,keep going ,it's the best way to keep going,Best wishes Sally

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Hi Sally, lovely to hear from you. There must be so may compensation living in France though? We have a garden pool also, which I slide into most evenings but ours is chlorinated, how is yours salt water, I'm intrigued? I agree the only option is to keep going and meet head on the advancing years challenges. Reading is the best option when keeping out of the sun. Michael x

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Hi Michael,most of the modern swimming pools here are salt water,and it is sooo different,our previous pools were chlorine and in U K ,hard work and expensive to heat etc.Here ,the sun heats the water,amazing....I worried about using this one we have now,re my skin,itching,whatever,but all is fine,,,,also looks to be helping my scarred places from carcinoma two yrs ago. So important to keep going with the pre M P N life.....not always possible,to be honest the heat we have at the moment is making me feel as if I am about to leave this world......but healthy and much younger friends are also suffering. Shutters closed,fans in every room ,ice packs for me ,water sprays for hubby and dogs,big problem for my aging horses,stay in barn continually,so much work ,feeding mucking out!!!!!!!so do moonlight gardening,a miners helmet with light...don't t hint you will need the canary!!!!Keep Going!!Best to you Sally

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You cheeky bugger I was feeling sorry for you more for myself as I read was had happened to me over the weekend with Doctors and hospital. Little humour but much frustration. I felt empowered when I discharged myself the following day.

Under your humour lies the truth but a smile is greater that a frown.

Bless you Anna ET Jak2 + BMB 2012. High platelet counts since 2006/7.

Cheers

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Bless you too Anna. Laughter is the best medicine. have your tried radio 4 Xtra? Michael x

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Hi Michael

Sunday night in Oz at present. No radio 4 extra here in Ox. When I first read your post I thought it was a form of nutrient. I hope your wife is being cared for well. I moved my 87 year old mum in with us and dad is in a home 3 klms away. We visit him daily and it is so tiring. Still they are my parents and I love them. Both dementia but I have learned from visiting the dementia patients in dads ward that most still have degrees of recognition. I have only me one who was fine until the morning he refused to take his meds, then he was scary. I keep them on there toes but all I ask is that they treat dad with dignity and respect and that they care for his health needs.

Anna X

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O, the wonder of the Internet! Oz, too far for a coffee chat, (I'm in the motherland). We cased about 12 nursing homes before settling. It's so hard to let go. The more you do the more they will want you to do. Finding a balance isn't easy. Good luck with that. Remember, their time is your time. Michael x

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Hi Michael

I love you country. Spend 3 months there in late 2016, I have also visited on a couple of other times too. Oh Lord, how right you are. I could write a book on what I have seen in the two odd years I have visited dad. Dreadful, deceitful and lying seems to be a condition of employment. It is not the staff's fault, they need work, the are Cert 3 and yet do the job as if they were qualified nurses. Be a firm Advocate for your wife and if you feel something is not right then it probably isn't. When you speak to her hold her hand firmly and look into her eyes. She is listening.

Anna X

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Hi Anna, Wifey Maureen has spent the day with me from late morning till 6pm. She eats quite well but is very thin and gets by on one meal a day. She is psychotic and lost her short term memory, but when the good bits show it's like the sun coming out. Others see a spent old lady, I see a once bustling district nurse with a smile for everyone. She has been in the home nearly four months and I can't speak to highly of them. It's a not for profit charity home. So sorry for your bad experiences. Michael x

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Michael

It's 7.20 am and woke to read about your lovely visit to see Maureen. So pleased you looked around before placing her into any home. It is really difficult to get beds in Australia. We tend to settle for want ever becomes available. She seems content. Can you feed her ice-cream or Vallia yogurt to put some reserves into her body. Have a lovely day. I have just let the dogs out and my bones are still sleep. So is mum which is rare. Lovely day her on the glorious sunshine coast

Love from your friend Anna

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Anna, assuming the link appears, you should be able to get Radio 4X here via the i/net: bbcradio4extra.radio.net/ They have some excellent old shows ;-)

Kevin

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Kevin

You are a sweetie. I hope you are well. Not many people offer random acts of kindness. I appreciate it. Will get hubby to set it up for me.

Kind regards

Anna X

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Yes. Pegylated Interferon (Pegasys). I swear that hydroxy nearly finished me off in just 4 weeks, with no change at all in my platelets. I am 66 and ET, JAK2+ and was having TIAs for fun, beside many other symptoms. After 3 weeks of Pegasys my platelets had dropped to 380 and now, after about 8 weeks, my body is coming to terms with the side effects, which are bearable.

Please ask for a change. I a on just 45 mcg a week. Giving up all the pleasures of life as wel as having to put up with the disease and major disabilities caused by the drug, which does not actually cure the disease is just too much to expect of an individual.

I wish you all the very best of luck. Penelope

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Thanks Penelope, I was thinking of giving up on all medication. Do you not think the stroke risk is minimal and the NHS are sticking us on this god-awful stuff just to save money at A&E. After all in the old days no-one was any the wiser and we lived to rip olds, (or perhaps not). Crystal ball out of batteries. Michael x

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Hi Ashby,

Thank you for raising this topic, it is something that I am really concerned about too. We have high UV here in New Zealand, and I had problems already with my fair skin prior to embarking on the Hydroxyurea. I hate being cooped up inside when the sun is out, but this is what I will have to do for much of the year, and I am not looking forward to our summer. I wonder if we should sleep all day and sport night vision goggles for gardening through the night? It could be entertaining sharing the garden with stray cats, hedgehogs, owls and maybe a bat or two for company!

Best Wishes,

Peter

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Hi Peter. NZ must have it's compensation, (not as hot as Oz). Best to take the best bits of life and discard the crap, grow old disgracefully! After all your wonderful blogs, gardener interview commence tomorrow, orderly queue forms on the right! Michael

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Loosing control of your garden -I understand how difficult that must be. I do all my own garden, and love it. This year I have been seen out there very early in the morning to grab a bit before the heat turns up. But I am beginning to realise this year, that I need to start taming a gardener to take over some jobs.I dont know what the alternative to gardening is. Do let me know if you find one!

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Ask for a change to Pegasys. I couldn't tolerate Hydroxy and because of my age (66) and my tendency to suffer TIAs and having had a stroke previously, I was allowed to swap to Pegasys. It has many side effects but not those you mention. My platelets reduced almost immediately to normal range. P

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TIA's ?

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Sorry, transcient ischaemic attacks. Mini strokes. P

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Thanks Penelope. Last time we discussed a possible change in medication, the answer was, well, it took you some time to adapt to the Hu, (skin rashes and fatigue), why go through all that again with a new drug? Nevertheless I shall ask the question. What are the side effects of the Pegasys and are they better than Hu?

Michael

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The list of side effects is huge. The facts are that we will not get them all if any. Mine are always different from everyone elses'. I have the aching muscles and joints, pins and needles, fatigue, night sweats but manageable and intermittent pruritis when I eat certain foods. However, I had these with hydroxy as well but about 100 times worse. Hydroxy made no difference to my platelets and I felt I was going to die if I kept poisoning myself each day.

Pegasys (45mcg) is self-injected weekly and after 3 weeks my platelets had dropped radically to within normal range at 380. Within 10 weeks they were 299.

When I asked to go on it my haeme said, 'well if you're bad on hydroxycarbamide, you'll be a whole lot worse on Pegasys'. NOT TRUE. I did my research and it was recommended and considered less debilitating than hydroxy and it does not carry the same danger of causing further blood cancers.

My view is that it is the cost which prevents doctors from prescribing it. ATB Penelope

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Wow, thank Penelope, not sure about the self injecting bit, mind you I had to do it with Heparin after knee replacement, so perhaps no bit deal. I am assuming you are younger than me (74), is that a factor? Thanks again. Michael

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Hi Michael. I am younger than you but 66 and that IS a factor, I believe. Over 60/65 seems to be a key. I really would say give it a try. It is weird injecting yourself but i just tell myself to breath in and go ahead....... quickly.

It has been great for me and if you read about it further, there are even some calling it a miracle drug. It takes some getting used to like any major drug but for me, nothing like as debilitating as hydroxy, which I saw as a slow and ageing death. I was old and decrepit within days and I admire anyone who can deal with those side effect. I was in agony everywhere and couldn't even stand up straight. My hands have still not recovered. Quality of life minus 100. After I kicked my backside yesterday, in order to combat the fatigue, I spent around 5 hours picking damsons and cutting branches from our damson trees. Up the step ladder and fighting branches, leaning across others etc. I ached like crazy when I stopped and thought today was going to be agony. Not so, I feel better than ever. I could never have done that on hydroxy. It killed my brain, my body and my nervous system. Good luck. Please let me know how you get on. Penelope

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What's it like being and inspiration? .... get used to it! M

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That's very kind. i hope it helps and you get the drug changes you need. I forgot to say (if you haven't checked it out) that Pegasys is pegylated interferon, which means it is modified release and that is why you only need to inject once a week. So don't look at the side effects of interferon because pegasys is far less severe. x

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Take a look at the feedback on here. You'll see what others feels. It's give me hope. Love and hugs. P

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