Thanks for dropping me a line! Pentostatin “hangover” lasted from Thurs Avo - Sun Morning I’d say… since Sunday I’ve felt pretty normal. Next course on 15th so at least I know what to expect afterwards.
It was mainly achy / head ache / dizzyness & tired… tummy upset a bit … but other than that. I’m not sure as I have more doses will the effects get stronger (as my immunity weakens?) - remains to be seen.
Neutrophils still above 1.0 at 1.2 - so not too compromised yet - but masking up in shops etc when I occasionally visit.
Was due my 3rd cycle of treatment today, but it has been postponed as I have to take injections to build up neutrophil count.
5 days injections of Filgrastim, does anyone have any experience of this? Hopefully, side effects will be mild!
Great to get an update from you @dmquinlan.
Sorry I cannot help you but take care and be kind to yourself.
I hope you are able to start your 3rd cycle soon.
I hope that someone can share their experiences for you…
Weird side effects - you feel it in your bones… was a little painful for a short while after taking it but settled down. No other unpleasant side effects. Did feel about stone heavier trying to get out of bed this morning, and do feel a bit lethargic today. 4 more days of this to go, then I suspect blood test to see if it’s done the trick so I can proceed with next chemo.
At least I know what to expect if this happens in a few chemo cycles time too.
Administering the drug using hypodermic needle was weird but wasn’t painful.
To feedback, the 5 days of injections boosted neutrophils to 1.94 which is “on the cusp of lower end normal” range… which is good.
Am expecting a call from centre with confirmation that I can resume chemo this week.
Had 3rd cycle of chemo on Thursday - however, I forgot to take anti-sickness tablets before & on the day. I paid for it. Was quite ill most of yesterday - I’ll spare the details.
Feeling fine today.
I won’t forget to take them next time.
Thanks for the updates. It’s really positive that your neutrophils have improved and are almost ‘in range’.
I hope you’re starting to feel better after the most recent Pentostatin treatment. How far through the process are you now?
Remember to be kind to yourself and make time for you and your music (even if just listening and watching at home).
I posted update to my blog yesterday : HCL Treatment Update
I had call with consultant today who said my numbers (apart from white cells) approaching normal. I have cycle 5 on Thursday - and he has said that he would schedule in a biopsy after cycle 6 to see how many more, if any, cycles I need. I will be on boosting injections again as neutrophils low due to chemo toxicity.
He has said I should be good to travel to Ireland on March 1st for my brothers wedding (travelling by car/ferry) - which is great news.
Oh @dmquinlan thanks so much for the update and brilliant news that you should be good to travel to Ireland on March 1st for your brothers wedding.
Really something to aim for.
Please let us know what happens and really look after yourself
That’s really positive news. I’m very pleased for you.
I hope you’re feeling ok after your fifth cycle last week.
Great news you can travel to the wedding.
Please keep us posted about your biopsy.
Hi @NickB - hit hard again with post chemo sickness last Friday after chemo. I’ll have to be more tactical on the anti-sickness - and also remember to drink gallons of water on chemo day to see if that helps.
I guess the positive side is, I’ve had about 4 maybe 5 days ill since treatment started in early Dec - not saying I was 100% all the time, but could have been much worse.
I’m sorry to hear that the most recent was difficult. Yes, I’m sure hydration will play its part in the treatment and immediate effects.
How are you feeling now? Have you got any more treatment planned right now.
Next treatment on Thursday. Have been fine apart from the sickness after chemo. Had call from nurse today to check up - neutrophils at 4.19 (yay! I can go and get a haircut). I explained the sickness - they will look at prescribing a stronger med next time.
Great news about the neutrophils! That’s brilliant.
That sounds very sensible about the sickness medication. Hopefully that helps next week.
Hope you get a nice haircut
@dmquinlan I hope you get the stronger anti sickness medication soon and also a really snazzy haircut.
Be kind to yourself
Hi @dmquinlan I just wondered how you were feeling with the sickness you were experiencing.
Have you had that haircut yet?
Look after yourself
I did get haircut yes… should be nice and tidy for my Brother’s wedding in Ireland next Friday!
Didn’t have any sickness after last chemo - however the “hangover” lasted a few days longer - I was a bit up and down.
Had consultation today - next chemo tomorrow + more immunity injections.
Bloods are all good - approaching normal (if not already normal for many indicators) so in 2 weeks time, another consultation to determine if next move is biopsy.
I launched my fundraiser during the week too - riding in Ride London / Essex again raising funds for Blood Cancer UK.
Oh @dmquinlan have an absolutely wonderful time at your brothers wedding in Ireland
Look after yourself training for the Ride London/Essex
Please do let us know how you and your treatment is going too.
Hi @dmquinlan how did your brothers wedding go in Ireland?
Just in the door now after our long journey back today! What a weekend! Was worried a bit the side effects of filgastrim jab on Thursday night would wear me out on Friday - but I was all good.
Wedding was a blast! My brother Michael and Sandra (MrsQ) had a great day - they sure know how to party…
You might see this reel my wife made on Insta…
We had a great catch up with extended family too.
Back to “normal” tomorrow - in clinic early for bloods for consultant call on Wednesday - see if I can now have break from cycles of chemo to rest a bit before having biopsy (or continue with chemo on Thursday).