Hi @Gillyj that is definitely not a basic question and I am surprised it has not been asked before.
I would have hoped that would have been part of the instructions when you were given the needles.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses
Let us know the answer as you might well help others.
Thanks so much for raising this vital safety issue and look after yourself
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Hi @Erica
I have been amazed by the lack of basic information like this that Iâve been given. When I picked up the injections I was asked if it was my first time and when I said yes I assumed that someone would talk me through injecting them but no one did. The leaflet that comes with it is quite good but if I didnât have some medical knowledge I think I would have been even more worried!
My medical centre is not very helpful at fitting me in for my blood tests- Iâm wondering whether I can go to my local hospital for this instead? I have the blood request form
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Hi @Gillyj I Perhaps ask the question if you have you have a blood request form.
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Hello Gillyj - itâs your local council you need to contact once your bin starts to fill up (I am also on Peg interferon for Essential thrombocythemia (ET)) - different councils will have different procedures of course 
- I got my first sharps bin from the hospital when I started Peg some years ago then after that the local council pick up the full bin and leave a replacement - you definitely mustnât dispose of sharps in normal weekly rubbish - most Councils have a form online to fill in for sharps collection and have some sort of procedure for it to be okâd by GP or hospital just that first time and then you can arrange collection whenever you need it - which isnât often as it takes a long time for the bin to be full. The sharps collection is separate to usual bin collections. Probably best to look at your local councils website and they should have a section for this type of specialised collection 
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Oh and yes your hospital dept should have arranged for you to be shown you how to inject the first time - if you are unsure check with the haem oncology you are under. I know when I started I went to the blood cancer ward and was shown how to inject by me of the ward nurses
Depending how near your hospital is, it is usually easier to get blood tests done with them - I book a blood test appointment at my hospital for a week before my consultant appointment each time - and the results are all tied in nicely with your records for your appointment - my hospital has an App too that I can see my results online any time so I have them well ahead of my appointment which can handy for questions etc
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Thank you! Iâve done my first injection now so all is well!
Iâve now booked a blood test at my local
Hospital, although itâs not the one I am seen at by my consultant so I hope it will be ok! 
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Sounds like i have the same experience as you. No instructions on how to do it but there is a video on cancer research UK showing how to do it. I have had to inject in the past but i still thought i would be shown it.
I picked up mine this morning and asked if there was a sharps bin. she said it hadnât been mentioned but she found one for me. as far as i am aware this needs to be taken back to the pharmacy and replaced with a new one.
Planning to do my first one tonight. I have read the instructions and after third reading i realised that i need to discard half the contents of the 90 syringe to take it down to 45. I was muddled as i was thinking it was 2 doses in a syringe which didnât seem hygienic to reinsert needle. I now realise it is discard half and then inject the other half. Why did no one tell me?
Hope you are feeling ok
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@Chrispy - at least you had the sense to request a sharps box! I did my 1st injection on Tuesday early evening as I thought then that would allow more time to get any side effects out of the way- although I nursed I still looked it up on you tube just to be sure- was amazed how painless it was and as I mentioned only a couple of hot sweats that evening nothing else. Hope youâre the same. Yes- discard down so you just have 45 in the syringe.
On another random note- does anyone else with Essential thrombocythemia (ET) suffer from serious bouts of diarrhoea? Not connected to interferon as itâs being going on for a few months. Sorry to ask a personal question but I forgot to ask my consultant!
Good luck with your injection- itâs great to get the first one over and done with!
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Wow well done @Gillyj, youâre a braver person than me, injecting yourself. I still look away when having blood work done. Have to say, your fresh experience of just how pain-free it was for you gives me hope that Iâll be fine should I ever need toâinterferon is a potential treatment for my Polycythaemia vera (PV) if the hydroxyurea stops working.
Glad to hear that the flu-like symptoms on the day of administering it werenât a bother for you. Thank you for all this detail, itâs really helpful to know from your experience. Bet the tennis was especially fun today, knowing a little more of how life can continue to be for you despite those diagnoses! Long may that last.
Sorry that I couldnât answer your queries about disposing of needles, but look at how lovely the folks are here on the forum to have already figured it out! Thanks for asking about it, I imagine others using the forum will be interested to know too. Thatâs a great tip about getting blood tested at hospital @Jilly20. One less journey for test results to make, and thus faster, so less time nail-biting awaiting them perhaps?
Hope your first injection has gone well @Chrispy, do let us know. Funny that half of it gets wasted though, youâd think half-doses would be available.
Oh and @Gillyj if youâve had diarrhoea for a while itâs probably time for it to be checked out, you donât want that to affect your strength as you adjust to new medicine, Iâd say. I believe cytoreductive medicines like interferon can affect how dehydrated we get, or at least my hydroxyurea does (please correct me if Iâm wrong @Heidi_BloodCancerUK!). Just a thought, hope it passes soon!
Thank you @Duncan - Iâm actually blown away by how lovely, supportive and helpful people are on this forum. I shall mention my diarrhoea to my consultant on my next visit- I thought I read somewhere that diarrhoea was a symptom of Essential thrombocythemia (ET) but could be wrong.
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@Gillyj . you may be right about the diarrhoea. I have always been on medication that gave me constipation but i havenât needed to use any laxative in the last 6 months which may be the Essential thrombocythemia (ET).
Didnât have a problem injecting myself last night and so far i have been feeling ok. i do feel slightly lethargic this morning but that is it. I have a personal training session booked for tomorrow so hope to be able to do that if i still feel ok.
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Hi @Chrispy - itâs good to get that first one over and done with isnât it! A hurdle conquered! Interesting re the diarrhoea 
. I have been feeling lethargic as well but didnât know if it was the interferon or my bout of gastric upset as felt wobbly legged before I injected. Will know more next week after the 2nd one.
I asked my pharmacist if they supply sharps boxes and said I would have to buy it and that they don t dispose of needles it has to be the council- nothings easy is it!! 
Take it easy
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Good evening @Gillyj, @Chrispy, @Duncan, dear @Erica and everyone else reading this and/or enjoying todayâs glorious (now Iâve finished work!!) sunshine. It was a bit warm in my truck today but better than being rained upon.
Reference sharp bins: I was âissuedâ my first bin by my hospital upon starting my Pegasys injections just over 6 years ago now. When it became full I wasnât sure what to do with it so I took it with me on my next appointment at Leicester Royal Infirmary (LRI) and, after a bit of prodding and looking âlost and patheticâ on my part, they exchanged it for me.
I too suffer with outbreaks of diarrhoea, usually at the most inconvenient times and locations, but such is life, and it gives your abdominal muscles a good workout too!
I still feel lethargic and have the flu like symptoms after injecting, but have trained myself to work through them and to try to carry on as close to normal that I can achieve.
The night sweats can be a pain and donât contribute to a good nightâs sleep, but I truly feel that I havenât enjoyed a good nightâs sleep since my heart attack back in September 2017. I have noticed that if I âforgetâ my evening tablets, a statin and a heart muscle relaxant, I sleep better! The consultants seem to do a lot of head scratching, theirâs, not mine, about that and even the consultant pharmacist haematolgy doesnât understand how that works/doesnât work. I think Iâm just wired differently. Not wrong, just differently!
As always everyone, stay safe, take care, carry on smiling and be good to yourselves.
Jimbo165
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Hi @Jimbo165 - glad to hear of another diarrhoea sufferer ( although Iâm sorry for you!!) just nice to know itâs fairly common.
As youâve been on interferon for 6years do the side effects stay the same or change over time? Also how long after each injection do the effects last or is it all the time? Can I ask what dose youâre on and what level your platelets have come down to. ( you donât have to answer that if you donât want to) I know everyone is different but good as a guide.
Letâs hope the weekend stays sunny! 
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Hi @Gillyj, to be honest, and thereâs little point not being honest on this forum, the side effects feel to have stayed the same from the beginning of this dance (Copyright @clickinhistory), and I usually feel myself âgoing downhillâ within an hour or two of the injection, and that feeling last anything from 1 to 4 days, lessening over the same time frame. Iâm currently on 90mcg every two weeks, and have been for a couple of years or so now, but the dosage has varied from 45mcg every three weeks at the start, up to 60mcg every two weeks, then up to 90mcg fortnightly. There was a, thankfully, brief period of 90mcg every week for 6 weeks, which really knocked me for six, especially with me still going to work but, once my work colleagues were aware of the situation, they just kept their distance and tried to avoid âpoking the bearâ so to speak.
At the start of this business my platelet count was the wrong side of 1200, but is generally down around the 450-550 mark, depending upon how my comorbidities are behaving, or not. I have heart disease, liver disease and poor kidney function to add to my Essential thrombocythemia (ET) issue. And im really miffed about all of those as I have mostly been a good boy, I donât drink a lot, used to exercise a lot, eat fairly plain food and have only ever smoked the once but, as that was when my arm was briefly on fire, I donât think that really counts!
The forecast for the weekend is probable rain on Saturday and dry on Sunday, but that will almost certainly change between now and then.
Take care.
Jimbo165
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Hi @Chrispy just a thought perhaps it is worth informing your personal trainer about your whole medical history and medications.
Please do let us know how you get on and really look after yourself.
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Hi @Jimbo165 , thanks for being honest- good to know and to be prepared- Iâm on 45mcg weekly for 6 weeks , my platelet count was 750, I do hope I donât have to be on 90 for any length of time!
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Hi @Jimbo165 I was also instructed to take my statin in the evening and it has not affected my sleep, I think I was a smiling door mouse in another life.
I am trying to stay safe, taking care, carrying on smiling and being good to myself, I hope you are too,
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hi @Erica . Yes my personal trainer has been with me for years and knows my medical history and that i was due to start something new this week. He is not the sort that shouts and knows i do what i can and tell him if i canât. If i need to stop i know we can just grab a coffee instead. I am feeling a bit queasy this evening so we will see how it goes.
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Hi @Erica, I hope that your own âmedical maladiesâ are settling down, and that you are feeling better now.
I truly havenât had what you would call a good nightâs sleep in almost 7 years now, but it is amazing what the human body, even one as dilapidated as mine is these days, can adjust to. I know that my energy levels are low these days, and that my stamina âshuts downâ very quickly, but I keep plodding along.
I generally keep a happy smile on my face and it works as a âbarometerâ for how Iâm feeling, but one that other people can use to see how I am doing.
Life is what happens when we are being busy living it!
Take care.
Jimbo165
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