Good evening @Chrispy, (and everyone else, of course!) I hope you are well and had a successful “pick-up” at your hospital today. I was wondering if the medical staff gave any further indication on the supply levels/shortages of the Pegasys at the moment, either in your area or nationally?
Meantime, and as always, take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
Hi @Jimbo165 I got the impression that they were working one month at a time and they didn’t know what would be available next month. They didn’t want to have change patients medication so were doing what they could.
Hi jimbo and @Erica
I’ve been meaning to write to tell you both about the Myeloproliferative neoplasms (MPN) voice conference I went to a couple of weeks ago. It was an early start and quite a long day but really well run and very informative. The speakers were all top haematologists from London, Oxford and around the world and it was interesting to hear of trials and advancements as well as talk from individuals with a Myeloproliferative neoplasms (MPN).
There doesn’t seem to be an answer as to how much Pegasys is left, it sounds like the dwindling stock gets moved to various centres around the UK to meet demand ( or not!) they also couldn’t say when Besremi would be freely available. One lady from Norfolk had been told she couldn’t get any more Pegasys and she had been changed to hydroxycarbimide.
I did ask why we can’t keep what’s left in our vials for another dose and use a new sterile needle- the answer was that they didn’t know the half life of it as it hadn’t been tested. I’m still thinking of doing it as I don’t want to be moved to an alternative.
In the afternoon we were divided up into groups according to our type of Myeloproliferative neoplasms (MPN) with a group of doctors and we were able to ask questions.
I would definitely go again.
How are you both doing? How’s the energy levels?
I seem to be doing ok atm, I’ve got into daytime tv in the afternoon as a way of recharging my batteries- I’m loving Escape to the Country, a property in the sun , Masterchef Australia ( who knew that each series has 50 odd episodes one can watch on catch up!!! 
)
Take care
Gillyj
Good morning @Gillyj, and everyone else, I hope you are keeping as well, and as warm!, as possible.
Thank you for your “Post Conference Report” and I’m glad that you were able to attend and had a good day there.
The consultant I see at LRI seems keen to move me on to Hydroxycarbimide, but I am, shall we say, less keen on this idea!
The issue, or lack thereof, of Pegasys, coupled with the lack of up to date information about the supply is a cause of additional stress for those of us who are on this treatment, but the “dangling carrot” of Besremi offers a glimmer of hope, providing that your Trust is prepared to cover the cost and agree to offer it as an alternative.
I guess that time will tell.
I was at my GP yesterday, at the behest of my consultant, for a check up about my continuing headaches. He could find nothing sinister going on and said to tell the consultant to arrange for a CT scan.
I am back at LRI on the 6th of December, with blood tests and my next B12 injection (20 minutes apart!) two days before that.
My energy levels are abysmal these days, but I shall carry on plodding on for a while yet.
Meanwhile, and as always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
Hi @Gillyj and @Jimbo165 yes, @Gillyj I have heard that the Myeloproliferative neoplasms (MPN) voice conferences are good and informative.
I bet it was a very long and tiring day though for you though.
As for the supply of Pegasys supplies well at least the day confirmed that nobody knows what is going on.
As for energy levels, the answer is not a lot, I have overdone it emotionally, psychologically, physically and practically, but I have nobody to blame but myself and a set of colliding circumstances which especially happen at this time of year.
However I do have my decorations up as a friend is visiting from Australia, at very short notice, at the weekend.
@Gillyj the wonders of catch up TV.
But @Jimbo165 I am still smiling !!!
Take self care of yourselves
Good evening @Erica, @Gillyj and everyone else, I hope you are as well as can be.
@Erica, I’m glasd to learn that you are still smiling (Cheshire cat like, I imagine!) but sorry to hear that you have been overdoing things, and to such an extent too.
Sadly I too know that feeling and it is probably 99% my fault on each occasion as well; maybe this is also a “side effect” of our various cancers or, more likely, a side effect of the kind of people that we are. You know the sort I mean, the helpful types and those that find it difficult to say no when asked for assistance.
I am wondering if anyone else is feeling particularly cold just now? I am really struggling to feel warm, despite being well dressed and having the heating on, and wonder if it is a sign of “thickening” blood moving more slowly around my network of blood vessels? Something to ask the consultant about in 10 days time.
As always, stay safe, take care, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
Yes, @Jimbo165 I get colder and colder as the years gallop by.
My husband has heart problems, rheumatoid arthritis etc. and he is still going around in shorts, as is our son.
Neither seem to feel the cold and I look like the Michelin Man huddling under the winter.
duvet.
Please do let us know what your consultant says.
Thank goodness for bed socks I say.
Hi @Erica @Jimbo165 and anyone else following these threads!
@Erica does your husband tell you off when you overdo things? Mine does! I wonder if blood cancer only affects busy people- people who like to be busy and who don’t know when to stop??? It seems we all do too much at times and then exhaust ourselves. I do hope you anre able to enjoy your visitor from Australia.
@Jimbo165 living with constant headaches is no joke- keep us posted on your scan.
Take care everyone and rest up when you can!
Gillyj
Hi @Gillyj no, my husband has never told me off for overdoing it.
He is a head in the sand type of guy about anything medical and I have realised that life and events just happen around him and he just turns up when it is all done!!!
Hi @Jimbo165 . I too have been feeling unusually cold. I don’t usually feel this way so was assuming it was the increased dose of interferon. Since the first injection of 90 i have felt cold, tired and aches. I hope this will improve over time.
Had to laugh at @Erica comment about her husband as my husband is the same. Head in the sand but if i get stressed he will sympathise but that’s as far as it goes.
Good evening @Chrispy, and everyone else, I hope that you are all as well as can be and are now counting down the hours until the Christmas mayhem properly begins, Bah humbug!
I find that the more tired I am (an ever increasing burden) the more I feel, and notice, the cold, something as a youngster, and right up until my 1st (to date!) heart attack, I never, ever felt. I have a sneaky and suspicious feeling that the two might be connected! 
I have the excitement of blood tests this coming Wednesday, at 3pm, followed by my next B12 jab at 3:20pm. Then I’m at LRI on Friday to see the consultant for (hopefully!) the last time in 2025.
With regard to “significant others” and their responses; I live alone so there is only me to tell me to not overdo things, and I have proved time and again that I am not very good at listening to my own warnings!
Take care all, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
Good afternoon @Gillyj, and everyone else, I hope you are all well.
Just an update following today’s visit to Leicester Royal Infirmary. My handler (Daughter No4!) and I saw the same doctor (by my choice), the Consultant Pharmacist Haematology, who seems happy to see me as I think she enjoys the banter and interplay between my handler, the doctor and myself.
Sadly the results were more negative than positive today, with my platelet count having risen from 362 up to 676, which is quite a jump, and indicates that the Pegasys is no longer working for me. The flip side to this is that my liver is doing a little better and my ALT score is down to in the normal range, so I’ll take that as a positive.
The way ahead for me at the moment is to have my final (for now) Pegasys 90mcg injection this evening and then to begin taking Hydroxycarbamide from tomorrow, initially at 1 per day. Then I am back at LRI in two weeks time for an update on my bloods and, I suspect, a change in dosage.
Whilst this is not an entirely unexpected development, it is, with my luck, an unwelcome one. Time will tell how this works out, but I am confident with this particular consultant and I will have the option to try Besrami if this has “unintended consequences” or go back on to Pegasys after this break from it.
One hope from this change is that my headaches will ease off as it is suspected that they may be being caused by the Pegasys itself.
As always, stay safe, take care, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
@Jimbo165 I sincerely hope all goes well for you. I’m so glad you were able to see your trusted consultant
It really helps, especially the banter.
Keep us posted please.
Merry Christmas 
Lynd xx
Thank you so much @Lynd for your kind words.
I hope that everything is good for you on your own journey.
And as you’ve now “broken the seal”, so to speak, I too will launch in to the festive greetings and salutations. Bah Humbug!!
Take care, stay safe, Merry Christmas, and other festive wishes. 
Sorry to hear that your results were more negative than positive today @Jimbo165
Oh, your handler sounds good at the banter,m like you, and I think if you can develop that rapport with our clinicians it really helps.
Yep, keep smiling
Good evening @Jimbo165 and everyone else. I’ve been wondering about how you were getting on, and what was going to happen at your next appointment.
Sorry to hear you’re coming off pegasys, I think you once told me that you’ve been on hydroxycarbimide in the past- is that right? How did you get on with it ? The good thing as you say is that your headaches should go which has got to be a real plus! It’s no joke living with headaches.
I love the sound of your handlers 
you’re lucky to have 4 daughters to keep you on track so to speak!
Interesting that they said you might go on besremi- I’ve not heard of it being actually prescribed yet so that’s great if it’s reached the pharmacy’s now.
I’m still on 60 pegasys every 2 weeks- see what happens in the new year at my next blood test!
Take care and best wishes
Gillyj
Hi @Gillyj yep, thanks, survived.
Good evening @Erica, thank you for your kind words. Yes Daughter No4 and I share a warped sense of humour, often quite dark too, but it keeps both of us reasonably grounded (I hope!). I have to say that banter seems to be phased out in th ework place and, I kid you not, my company have sent Managers and Supervisors on “Better Banter” courses, which to my un-coursed ears seems mostly aimed at stopping the banter that we have pretty much all undertaken for the last many decades. I’m sure that i shall have to endure the course at some point.
Tomorrow the new regime begins and I’ll keep the Forum updated with my progress.
TTFN and nighty night.
Jimbo165
Good evening (just!) @Gillyj, thank you for your kind words. No, this will be my first foray into the realms of Hydroxycarbamide as I have been doing my best to “side-step” it due to my generally poor luck, medically speaking, and the side-effects associated with it.
I very much hope that the headaches will at least ease if not fully go, and my “handler” ended up asking the consultant if I could have some paracetamol whilst there today as I had failed to restock my car yesterday and had a headache arrive on the drive to LRI this morning. It was such a rigmarole to supply them though, that involved the CNS having to check my identity, complete some forms, get them countersigned by the consultant before I could take “ownership” of the two caplets!
All sorted now though and I’m in bed and, with luck, off to sleep soon.
Take care, stay safe and nighty night.
Jimbo165