Good evening Erica and thank you. Yep, it was a bit of an unwelcome development, but I’m hoping that it was a one off this time.
take care and stay safe.
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Hi @Jimbo165. That’s sounds rubbish. I’m surprised you managed to stay at work! Hopefully just a bug. Both my daughters have had it. I’m glad you are feeling better now and fingers crossed for Friday. Keep us updated 
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Ive been on Pegasys for over a year now weekly/fortnightly and have to say Ive not felt much in terms of side effects.
I think with masks being less worn people are spreading and catching all sorts… I can’t shake constantly having to clear my throat… It’s proper annoying . But hoping time passes and it gets better.
Hang in there… 
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Very sorry to hear about the bad time you’ve had. One of the problems about taking these drugs is trying to work out what is a possible side effect and what is an illness you would have had anyway. It makes things doubly difficult and uncertain and I very much hope its over and done with now.
Very best wishes to everyone
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Good afternoon all, hope everyone is keeping well and safe.
Following on from my previous message from a fortnight ago, here is my latest review.
I think my previous episode, with much sickness, was just a coincidence as I’ve not had those same effects, to anything like the same degree of intensity since then, and have had two further injections since.
I still suffer huge amounts of fatigue, but how much of that is down to the ET, or the Pegasys treatment, or the previous heart attack (or simply my age!), I don’t know, but I was never this tired before all of “this” began a little over 4 years ago.
I’m generally well, and don’t suffer with colds and illnesses very often, thankfully, as I have enough “other” health issues that keep me busy.
I’m awaiting an appointment for a scan of my liver and spleen to see how they are both doing with regard to continuing enlargement, and I’ll report on that once I’ve had my picture taken".
Stay safe all and keep on smiling.
Regards and Good Luck to you all.
Jimbo165
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Thanks for the update @Jimbo165 and fingers crossed after small time you start feeling better and levels start to be at the level the meds are intended it to be at…
In light of my heart attack my haemotologist is the process of moving me away from pegsys to a more aggressive form of treatment which I really don’t want to happen as I’m really coping with pegsys and don’t think my attack was blood cancer related. Finding it a tad scary moving to something that has more warnings when I feel it’s not necessary
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Hi @Jimbo165. It’s great to get an update and good news that it was hopefully a one off! Fatigue can Bec really debilitating can’t it! Please let us know how you get on with your scan
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O Jimbo, you are having a bad time - bombarded by problems from all sides. The fatigue makes everything much worse because its hard to fight or keep cheerful when you can hardly move for weariness. I’m sure we’re all willing you on! I was interested to hear that Ramie’s doctor wanted to start a more aggressive form of treatment. Its a dilemma, do you embark on something scary with no idea of the outcome, or go against advice and stick with what you’re used to? I have a bit of this problem myself and again am full of sympathy.
Best wishes to everyone,
JennyMary
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Hi @Jimbo165 @Rammie18 @Nichola75 and @JennyMary fatigue is so debilitating isn’t it.
For me everything suddenly gets all too much sometimes
As for dilemmas I just tie myself up in circles.
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Sounds like you have some tricky things going on to. Hope all is ok?
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Just been told that although my platelets are being controlled, it means that my white blood cell count is so low that I must come off the medication for a week to let them recover. I feel fine but I know that this will increase pressure on me to try anagrelide when I go for my appointment next week. I’m determined not to do this as I know the side effects are awful. No easy choices!
Best wishes to all
Jenny
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I hate it when no choice feels as though it is the right choice. That makes it a very difficult decision. Please let us know how you get on next week X
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Hi Erica,
I’m sorry to hear that things are getting all too much at times and wish that your dilemmas can unravel themselves soon.
I know that this forum is a great way to “unload” things but you should know that you can always talk to other members. Either publicly, like this, or direct message if that doesn’t contravene the rules (too much!).
Take care, stay safe and remember that you aren’t alone.
Jimbo 165
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Hi JennyMary
Hope things settle down quickly for you.
I spent a fair bit of time comparing the side effects of Pegasys, Anagrelide and Hydroxycarbamide and came to the conclusion that I’d do my best to avoid the latter two because of the various side effects commonly reported.
Good Luck for next week.
And keep smiling.
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Hi @JennyMary I wish you good luck with your dilemma.
All I can say is perhaps write all your questions down before you appointment and your reason for your decisions.
Don’t feel pressurised into making a decision there and then, give yourself time to consider what you really want to do.
Even perhaps make a pros and cons list, no choices are ever straight forward.
Good luck and we are here to support you and if you would like to talk to someone the Blood Cancer UK support line is there for you.
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Evening all, hope everyone is keeping well and staying safe. Apologies for the long delay but here is my update. I’m still on fortnightly Pegasys injections, and my platelet count is now at 392, the lowest figure for many years now, but the letter from the consultant, following last Friday’s telephone appointment, mentions slight Leucopenia. I’d not come across that term before. Also my ALT and LFT scores are now being described as “deranged”. This probably explains a lot about me!! I did look up the definition for deranged in a medical sense and it just means that the figures are a long way outside of the “normal” range, so maybe I’m not as mad as i thought.
My fatigue seems to be getting worse/increasing, and life seems to be more of a struggle these days though, which is a bit annoying but such is life.
Take care all, stay safe and keep on smiling.
Regards to you all,
Jimbo165
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Oh, @Jimbo165 I love these medical terms, I have a ‘sluffy’ hole in my head, so we make a right pair.
I hope ‘sluffy’ does not say a lot about me, it doesn’t sound complimentary to me.
Anyway that is good news about your platelets.
Have you told your medical team that your fatigue is getting wore, because it is altering your quality of life.
Yes, keep smiling and keep posting
Hello @Erica and thank you for your response.
I think we should “gloss over” your ‘sluffyness’ and not think too hard about what it means in case we don’t like where we end up!!!
I wonder if there are any other members who have been told they have Leukopenia and what their consultant/doctor is doing about it.
Throughout my 4 years of treatment I’ve not really been “worried” about anything that I’ve been told, but seeing the a word with Leuk in it feels as though my issues have been raised up another notch, if that makes sense.
I just wish i didn’t feel so flipping tired all of the time, but I guess that having just worked 6 days straight through wont be helping much.
Stay safe everyone.
Regards,
Jimbo165
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Hi @Jimbo165 your ‘flipping tired’ is probably what I call ‘fatigue’ and a lot of us have to manage it, however just working 6 days straight through will probably not help.
I am lucky enough not to be working now but I remember just working, sleeping and attempting to run a home for 5 yrs.
Do your employers know your diagnosis?
i hope someone with Leukopenia will be able to help you more.
Take it steady and look after yourself.
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Evening @Erica, yes, my employers are fully aware of my condition but unfortunately there are only 3 HGV drivers at work; one has been on holiday for the last week, and one is currently enduring the medical license renewal process with DVLA, so that only leaves me at the moment. Such is life. My medical driving license renewal took 8 months last year!
Yes, life does seem to revolve around Working, Sleeping and trying to “keep house” but, fortunately, there is only me here so I can leave the dust for another few days.
Take care and keep smiling.
Regards,
Jimbo165
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