@Jimbo165 I took an injection yesterday and took out the leaflet and It does open up with many pages, don’t think I’ve ever read the leaflet In full. Has anyone on this forum ever had a tattoo with essential thrombocythemia I’ve never had a tattoo done before but I want a tattoo of my son’s front print on my arm with his name and date of birth, just thinking with me being on low does aspirin will their be to much bleeding getting the tattoo done, I have an appointment with my consultant next month so It’s something I will ask him but just wondering If anyone else has had a tattoo done and was everything ok. I hope everyone’s keeping as well as can be and enjoys the sunshine which Is a surprise since It’s a Bank holiday
Hi @RA2000 - bit slow in replying- I also have had a problem getting pegasys over the last few months- I was supposed to be given 6 and they only gave me 2 and said come back in a few weeks for another 2 etc. I did get them on the next visit but I’m 45 mins from Worthing hospital so it’s a bit of a nuisance. Will see what happens this time! I always ring first and get them to check if it’s there or not and take the name of the person I spoke to. Last time having done that my husband went to get them only to be told they didn’t have them, eventually when he told them I was right out they miraculously found them! As if we don’t have enough to contend with!!
@Jimbo165 hows your energy doing? I’m finding this heat- lovely as it is- totally wipes me out!
Gillyj
Good evening @Gillyj @RA2000 and everyone else gently simmering in the record breaking heat of today. My apologies for the delayed reply; I’m currently down in Essex stopping with my cousins and being pampered and spoilt, and rightly so! I am, however, allowed to drive when we go places as I am an awful passenger!
I’ve not had any tatoo’s either before this “journey” began, or subsequently. To be fair, if I was to have a tatoo it would probably be something along the lines of “In case of emergency, cut here” on my neck! 
I have seen a few people with tatoos whilst I have been at LRI though.
The heat is not helping with sleep, something fairly vital to all of us, but especially to us Myeloproliferative neoplasms ('MPN') people, and my fatigue levels are below even my normal level.
I was at LRI on Friday for my usual appointment where my platelet count has further reduced, which is good news. Of course, and as usual, there was a sting in the tail as my liver function, always the most uncooperative of my organs, has deteriorated some more. So for now, I am to continue on with 1 x 90mg Pegasys injection every two weeks, however I can now reduce my Hydroxycarbamide intake to only 1 per week and to see how that works out over the next 3 months. All in all, I’ll take that for now.
I am awaiting “calling letters” about my heart scan and my liver scan and hope to have one or both before my next hospital appointment in early August.
Meanwhile, and as always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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Oh @Jimbo165 and all I reckon a bit of pampering is just what you needed and deserve.
In this heat the mosquitos have returned with a vengeance and have been very well fed here on my face and my husbands arthritic hand,.
I have waited in all day for an electrician who did not turn up, but I have made good use of my time here though cracking the edging sky on my jigsaw, updating some medical records and doing some overdue housework etc. etc.
After Arsenal’s premiership win I also went up to the Emirates stadium, something else off my ever increasing bucket list.
Make the most of your pampering @Jimbo165 and everyone keep as cool as you can, take care, stay safe, be kind to yourselves and keep on smiling.
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Hello
In answer to the tattoo question, I have had 2 since I was diagnosed. I spoke to the consultant first who said it was ok but to stop taking my aspirin for 3 days prior. didn’t have any issues at all.
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That’s really reassuring that you have had 2 tattoos since being diagnosed albeit you had to stay off aspirin for 3 days prior, I best speak to my consultant before I do anything but thank u for the reassurance.
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Good evening dear @Erica @Chrispy @Gillyj @Ceri_BloodCancerUK @Duncan @DuncanB and everyone else still following this thread, I hope you are all well and have made the most of the recent (and soon to end) good and dry weather.
I have a question for those of you who, like myself, indulge in self stabby things filled with Pegasys.
During my previous time on Pegasys, it was manufactured by Roche and used to make me feel rubbish for a while after injecting. I am back on Pegasys, this time manufactured by Pharma&, and the side effects are similar but feel more pronounced now, especially the fatigue. I feel so totally drained at the moment, and this after a weeks annual leave too. I am back to work in the morning.
Has anyone else on Pegasys noticed a worsening of their fatigue with the change of manufacture? Or, for that matter, any other changes?
As always, my Forum Friends, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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Good evening @Jimbo165 and everyone else- where would we be without you @Jimbo165 for picking up on different manufacturers! I hadn’t realised, I must admit, but my fatigue is definitely far worse than it used to be. I’ve been putting it down to playing an exhausting tennis match in the heat and the prolonged hot weather but you could well be right. Do you think it’s stronger?
Perhaps this is something @Ceri_BloodCancerUK might be able to ask?
Gillyj
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Hi @Gillyj, and everyone else, from memory, and perhaps @Ceri_BloodCancerUK may be able to confirm this, when “original” Pegasys was first in short supply it was because the manufacturer (Roche) were stopping production of Pegasys as other, newer, drugs were now available for the conditions that Pegasys was originally intended for. I wonder if some of the “non-active” ingredients have been changed by the new manufacturer? I’m assuming that they can’t change the “active” ingredient without then having to change the name, but I am a lorry driver and not a medical copyright expert.
Sadly you are not alone in putting more debilitating fatigue down to “overdoing things” or the sudden heat, and there may be an element of both of those in the additional fatigue too.
TTFN
Jimbo165
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I’m on pegasys and It’s only ever been through one supplier so can’t really help with your question, since I started taking pegasys my energy levels have improved I feel far less fatigued before I started taking them. I am only 37 though so I am expecting as I get older that my fatigue will gradually get worse with having this condition especially when I reach my 50s (fingers crossed I make that age) the 5 percent chance they say this could turn Into acute myeloid leukemia always has me worried. @Gillyj I hope your fatigue gets better maybe playing tennis In the heatwave didn’t help though ha. @Jimbo165 I can imagine with being a lorry driver It can be a very tiring job try and take It easy I know it’s easier said than done. Take care everyone
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I was diagnosed with Essential Thrombocythaemia at 39, along with pre-myelofibrosis, splenomegaly and a few other bits and pieces.
The hardest part for me has been exactly what you described — trying to carry on as normal because the illness is mostly invisible, while still processing that this is now part of life long-term.
I’m with you on the fatigue too. It’s tough, and it can be really hard to explain to people who can’t see it.
One thing I’ve learned is that the invisible parts still need to be treated as real - the fatigue, anxiety, mental load, forgotten questions, and trying to keep everything organised.
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Hi @Jon-butler @RA2000 @Jimbo165 that must be hard being diagnosed so young but what I would say is that when I attended a Myeloproliferative neoplasms ('MPN') conference 2 years ago there were a couple of people who spoke about their experiences who had been diagnosed in early 20’s/30’s and who were then in their 50’s/60’s and still looking brilliant, so take heart!
I think it would be really interesting to hear more about your Path programme @Jon-butler if you were happy to share it with us?
Gillyj
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@Jon-butler Jon, I am quite a bit older (71), and I too have Essential thrombocythemia ('ET'), got the diagnosis last Fall. I don’t try to explain too much to people, largely to maintain my privacy. My wife knows everything. But in general, I tell people who I know well that I have a blood condition that makes my body produce too many platelets, and that this plus the medications I take make me get tired and fatigued more quickly. For people at work who I do not feel as close to, I tell them that I have several chronic conditions (the Essential thrombocythemia ('ET') is not the only one) that make me tire out earlier in the day. I have always been a hard worker who takes on lots of extra assignments (as a college professor, that means serving on committees, writing policy documents, mentoring students) and so nobody thinks I am slacking off. I am working at home more and leaving earlier in the day when I do go in. Having been in this department for 30 years, and being older, probably gives me an advantage in people understanding that I don’t have the endurance I used to. I have not filed any formal disability documents but my department chair and others have been very helpful–allowing me to drop off of several committees that take lots of time, and adjusting my teaching schedule so that I can avoid rush hour traffic.
Hang in there… managing multiple chronic illnesses and their various symptoms, plus multiple medical appointments and prescriptions, really does make life complicated.
Bill
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Hello there @Jon-butler, welcome back to the forum and thanks so much for your insights about living with Essential thrombocythemia ('ET'). As someone living with closely related Polycythaemia vera ('PV') I’m sorry to read of the pre-myelofibrosis part of your Essential thrombocythemia ('ET') diagnosis. I hope that any bone marrow scarring is still minimal, and treatment has been keeping you well. Don’t know if you’ve read the Blood Cancer UK information about Myeloproliferative neoplasms ('MPN') so I’ll share it here for you: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Just wanted to second your great point about us still needing to treat all of our symptoms as real, even the invisible ones. I went through disabling fatigue after starting treatment for Polycythaemia vera ('PV') and most people could just not get that it wasn’t simply tiredness.
Mental load too can be such a burden, keeping all the appointments and results in mind, especially when living with multiple chronic conditions, like @ProfessorJAK says so well. It can be quite a juggle, being one’s own personal healthcare assistant and occupational therapist! If we can give ourselves a break then I reckon we should, considering how many roles we manage when living with chronic illnesses. Thank you for sharing that, Bill.
If you wanted to pass your Path9 tool by @Ceri_BloodCancerUK and others at Blood Cancer UK you could email them at support@bloodcancer.org.uk to discuss it, and you never know @Jon-butler they might like to share it too.
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Good evening @Gillyj @Duncan @DuncanB @RA2000 @Willow @Ceri_BloodCancerUK and of course dear @Erica along with anyone else following this thread, my apologies for (yet another!) “Comms Blackout” this week. As usual, things have been a bit rough at work and I’ve not felt my usual “chipper” self for much of the week, but enough of my self-pitying drivel! Pull yourself together Boy!
@RA2000, I was 52 when I was diagnosed with Essential thrombocythemia ('ET'), some 6 months after my first (to date!) heart attack, so I have that as my primary comorbidity, along with my “dodgy” kidneys and my recalcitrant, not to mention, uncooperative liver. One of my, less than diplomatic, daughters once asked the question of the Consultant, in a beautiful, polite, genteel and sympathetic manner “How long is he going to live?”. Then began a deep, and mildly sinister, silence that seemed to stretch on far longer than strictly necessary, before the Consultant regained his ability to speak, when he replied with “10 to 15 years”. Personally, I believe that one’s attitude can, and will, make a huge difference to that outcome. I have every intention of proving the Consultant wrong! Having said that, my fatigue levels are atrocious these days, but I fully intend “hanging around” for a good while yet.
Last night (Friday) was my “voodoo” night for sticking pins into my manly (okay, slightly portly!) torso, which led to the usual feelings of mild flu, and lots of aches, but I have countered that today by managing to do very little.
Any road up to Bedworth, I hope that everyone is as well as can be and are making better efforts at looking after themselves than I seem able to do!
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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Thanks for your update @Jimbo165 and sorry to hear it’s been a tough week.
I love the positivity in your post.
And I agree with you 100%.
Your attitude is a major factor in dealing with cancer.
I learned that from my Sister who was diagnosed with Cancer of An Unknown Primary (as the name suggests couldn’t locate the Primary source).
It’s so rare that many Consultants never see a case in their career.
Her Consultant told her the longest any of her patients with this condition had lived after diagnosis was 9 months.
My sister blew that out of the water with her mindset and lived for another 3.5 years.
Her attitude definitely influenced mine when I got diagnosed.
Take care of yourself and keep stepping forward
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Oh @Jimbo165 I always feel concerned when we get a ‘comms blackout’ from you, I reckon that a rough at work must have been rough.
Have you taken said daughter to any further appointments with you?
I am so glad that you have done very little today, I chose to overdo it and I am now paying the price.
Take care, stay safe, be kind to yourselves everyone and keep on smiling.
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