Hi all,
After nearly 5 years in remission, it was confirmed last week after bone marrow biopsy, that I’m in relapse with Hairy Cell Leukaemia.
I’m having my treatment transferred to a more local hospital (I’ve moved since first episode) so I don’t know my treatment plan yet (fingers crossed the referral letters didn’t get lost in the post!).
Pentostatin was mentioned as possible treatment as I was previously treated with Cladribine. Does anyone have experience of being treated with this drug?
Had Flu & COVID jabs on Friday, so was a bit poorly over weekend. Other than that, I have no symptoms and don’t feel ill. The annual check-up did it’s job!
Oh David I’m sorry to hear this. Do you mind me asking how you’re coping at the moment?
There may be someone on here who has been treated with Pentostatin who you can chat to, so we await their responses, but I just wanted you to know that we’re here on the support line (including the @BloodCancerUK_Nurses , if you want to talk things through with us at any point.
Dear David @dmquinlan
Thank you for posting and I am really sorry to hear about your relapse. It must be a stressful time waiting for your referral and treatment plan. I hope you hear from them soon.
I have some information from our colleagues as Cancer Research UK Pentostatin (Nipent) | Cancer information | Cancer Research UK regarding Pentostatin, this does relay the side effects, frequency and how it is given.
Hopefully you hear from others on the Forum who have experienced this drug before which will be really useful.
Sorry to hear that you felt poorly after your vaccines and hoping that you are on the mend now. It is really good that you are up to date before any treatment starts.
Please do get in touch if you would like to talk things through: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Hi @Alice_BloodCancerUK
Coping fine, I knew as soon as the low platelets showed in annual test that something was happening. Bizarrely, thankful that it is “only” what I had before, and nothing more acute. That may come across as being a bit strange to some, but honestly that’s how I felt. First time around I was blissfully unaware of anything but exposure to this illness and all of the more acute illnesses did cause some anxiety until I had face to face with consultant who put my mind at rest. It’s been tough for my family having to go through all of this again too.
It’s been annoying not to be able to do all my usual activities (being a musician, running, cycling etc) as I started social distancing / working from home as soon as the blood results came in in July. Maybe I was over cautious but people in my circle were still getting diagnosed with COVID which was the biggest concern really.
I know a “first world” problem, but we had to rearrange our holiday plans too as I couldn’t get travel insurance. Did have a great week in Wiltshire & New Forest though… so can’t complain.
Hoping that my transfer of treatment won’t be delayed and I can get on with it before the winter kicks in! So grateful to be in the system and have this caught at annual check up - with no symptoms to show, I’d still be unaware - maybe my running/cycling fitness stats might show a slower pace, but getting appointments for test now? geez… I feel for those trying to get appointments and convince GP’s to move things forward for them.
Hi @dmquinlan good luck with the transfer of treatment. I know from personal experience that things can sometimes be a postcode lottery when it comes to quality of care.
Oh @dmquinlan, sorry to hear about the relapse and your reaction to the Flu/Covid jabs.
Glad to hear that you are coping fine, yes, aren’t our thoughts and feelings bizarre and strange sometimes.
Yes, it must be annoying not being able to run and cycle etc. but I hope that you never stop being a musician, so talented and therapeutic.
So glad you had a great week in Wiltshire and the New Forest, just what you needed.
Yes, being in the system really does help doesn’t it.
Well, we are here for you and so is the Blood Cancer UK support line if you need to talk to someone.
Look after yourself and please keep posting
Hi all,
I had appointment with consultant on Wednesday to discuss treatment. I’m looking at a 6 month period of pentostatin - not sure if it’s weekly or fortnightly yet - awaiting schedule from team.
Expect to start treatment either next week or week after.
It sounds bizarre @dmquinlan but being given a treatment plan is often motivating because you know what you’re dealing with and roughly how long it’s supposed to take so it’s easier to fight if you feel you might get to the end. Hope it goes well for you.
Thanks for sharing your recent diagnosis with us. How are you feeling now that you have more information on the proposed treatment plan? I hope that has provided you with some certainty and ease like @Franko has alluded to.
I too suffer from Hairy Cell Leukaemia and was diagnosed and treated in 2016 using Cladribine.
I hope you’re still able to continue with your music and that the Pentostatin treatment works well for you. Please let us know how you are doing and how you are finding the treatment.
I’m sending you positive thoughts and my best for your upcoming treatment.
Hi,
Doing fine, still waiting for contact from the chemo team, but it’s not been a week yet so hoping for something in by end of this week.
I did pop along and play with Hitchin Band last Saturday - they had a big community event where youth band, community band and the senior band played an informal concert. I thought it would be last opportunity before treatment - was worth it to catch up with chums there and give them update too.
I might be able to join them again for something outdoors before Christmas - depending on where I am with treatment etc. I’ve had to pull out of other gigs with groups I play with and turn some gigs down. It will all still be there when I’m finished treatment - I can get back to moaning about having to play repertoire I don’t like
Hi @dmquinlan it must have been great for you to catch up with chums and also to give them an update.
Yes, it will all be there when you finish treatment.
I had to laugh at your last sentence, yes, I bet it always feels great to have a good old moan about having to play a repertoire you don’t like!!!
Please let us know how your treatment goes and really look after yourself
Yay! I have a treatment start date - Nov 17th - not for the first time in my life, I find myself celebrating starting chemo - isn’t life weird at times…
2 week cycles for 6 months.
That’s positive news @dmquinlan. I can totally relate to finding comfort in knowing when your treatment starts and having a plan in place moving forward.
Please try and enjoy the next couple of weeks before you start. I wish you all the best with the treatment and am sending you positive thoughts.
Quick update - my treatment start yesterday was postponed due to issue with supply of drugs to the pharmacy. Waiting for new appointment. I’m being treated at a Macmillan Cancer Centre at the hospital, rather than like before, where the hospital had a haematology dept.
Hopefully, I’ll get a call today for an appointment next week to get things going.
Fingers and toes crossed for you @dmquinlan, there is nothing worse than getting all keyed up and then anything not going to plan.
Please do let us know how you get on.
Hi @Erica
I started treatment yesterday - had first dose of Pentostatin by IV. Other than feeling a bit weird when I went to bed last night, all OK so far. Slightly disconcerting to be informed that I am first patient to receive that drug at that clinic… I guess, someone has to be first.
I’m pleased to hear you’ve started your treatment. How are you feeling now you are a few days post Pentostatin? Hopefully you’re coping well with it. I’m thinking about you and wishing you well.
