Hi,
I'm new to a forum of any kind! So please bare with me.
My husband had 50% of his liver removed in mid September (left hemi hepatectomy) and has made a good recovery. He is a very young & active 76 year old. We felt we were very fortunate it was operable. Despite the surgeon feeling confident the tumour had been fully removed the biopsy showed signs of perineural & lymphovascular invasion so he has just started Chemo, Capecitabine tablets. I was wondering how other's have tolerated this drug and how soon he might start to feel any side effects? And the outcome of anyone else who has had the same operation?
He is also taking part in a trial called ARTEMIDE for a new immunotherapy drug called Rilvegostomig. It is blind so he has a 50% chance he could be given a placebo. Perhaps someone else in this forum is also taking part? (I hope I am allowed to ask this)
I know I should be patient and just see what/when he has side effects he has on the Capecitabine (and obviously everyone is different), I would just appreciate some forewarning as I have been told it's one of the better tolerated chemotherapy treatments. I feel guilty it's a trivial question, my heart goes out to some of the people who have far worse situations.
Hi CillaJane,
I'm taking the same chemo tabs. 4 tablets twice a day, 2 weeks on, 1 week off. I'm on my 5th course.
My side effects have been minimal, the worst being loss of appetite. But I have a lot of small side effects, including fatigue, acid reflux, stomach pain, lack of energy. Sometimes I only suffer from a couple, sometimes all. The cumulative effect is very wearing, just taking the tablets twice a day becomes a chore, but I focus on a hopefully successful outcome. My side effects started after about a week.
My cancer nurse has prescribed medication for the pain and acid reflux, which helps a lot. But also means more tables to take on a daily basis. I've written down a timetable and put an alarm on my phone when they're due!
Lack of appetite is the worst, but the dietician is helping with that, suggesting eating little and often.
My life is being dictated by when to take tablets and when to eat. I spend a lot of time daily planning my chemo tab/ eating routine.
It's tough, but I focus on where I hope to get to.
I long for the chemo to end and have been told I will have 8 courses, but obviously that depends on how things develop.
I hope this info helps and I hope your husband's side effects are minimal.
All the best
Wayzgoose
PS. I had bile duct cancer. 40% of my liver was removed and my bile duct and my gall bladder. That was in May this year. Progress hasn't been a straight line but it has happened albeit slowly. I've never regretted having surgery and enjoy everyday as best I can. It's tough, but I feel it's tougher for my wife.
Hi Wayzgoose,
Thank you so much for all that info, it's very useful. My husband is on exactly the regime, he started this morning. I don't think we realised how disciplined and organised we'd have to be. (They also removed his gall bladder and I believe he only has one bile duct left).
You do sound as if you have been brilliant at managing your routine, we will adopt your method if things get a bit complicated. I had to use a chart for meds when my husband came home after the op. You think you'll remember but it isn't that easy as the days roll on.
He had his first infusion of the trial drug yesterday (he had a slight reaction which makes us think it is likely he wasn't given the placebo) and started the chemo tablets this morning.
I do hope your side effects remain at a manageable level & you can now begin to see the light at the end of the tunnel.
Do you mind if I ask if you've had any scans to check your progress or if any are planned in the future?
Once again, thank you so much.
Hello CillaJane,
Today I've just had an oncology meeting, to discuss the results of my 2nd scan since the start of my treatment, which as with the 1st it's clear without any sign of reoccurrence. This is the best news i could of had.The only downside is the oncologist wants me to complete my 8 courses of chemo, which will take me through to February next year. As I have done up until now, I will follow his advice. I know Im not out of the woods yet, but its all positive.
That's brilliant news, if your husband is receiving the immunotherapy drug and hopefully it will have a positive effect.
Everyone's journey is different and I hope yours is as good as possible. But whatever your faced with I sure you'll cope. You don't realise how strong you are until you have no choice but to battle through.
Wishing you all the best,
Wayzgoose
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