Bowel cancer treatment and side effects

Ddd

Hubby struggling today

Hi all, hubby (48) had his 3rd round of xelox on Thursday and has been suffering since.. Bad indigestion, nausea, fatigue.. It was kind of like this last time, ie the first weekend feels like double dose, with the iv plus the tablets! But this time feels worse, its really knocked him flat. I've tried phoning triage for advice, but gave up after 20 mins on hold...don't get sick on a bank holiday weekend! lol
Anyway, just checking does anyone have any tips for us? He was feeling pretty positive before, but now feels only being halfway through 6 rounds is an uphill battle!!
Thanks :x::x:

Bear G

Hi @Ddd
Sorry your hubby isn’t feeling well this round, it’s not unusual for us to have a bad cycle or to find partway through that a dose reduction is needed or the infusions need to be slowed down or different support meds need to be tried.

None of this is anything to worry about but you’re quite right to want to speak to his team about it.

When you say you couldn’t get through to ‘triage’, is that a special number for our of hours oncology/chemotherapy or a general number? You should have a specific number to call so you don’t end up having to wait.

You're both halfway through this and you can do it, it’s just that you need his medical team to be there to help.

We’re here for you!

Big hugs
Bear
:x::x:

strongsami

Hi @Ddd
So sorry to hear your hubby is struggling. As I’m sure you know, chemo side effects are cumulative so the more you do the more you feel (yay - not)
I did 4 cycles of xelox at the beginning of the year and the last one was definitely the toughest - I had quite a bit of nausea that time around...

So first things first - does he have any meds for indigestion and nausea? I managed nausea initially with gin gins ginger sweets and regular chewing gum but by cycle 4 it was pretty strong so I got the proper stuff from the chemist (my chemo team gave me a list of tablets I could take)

So my advice would be make sure you are equipped with any meds to ease side effects - first and foremost.

Secondly... for me, the worse days were the first few days after infusion and then things started to get a little better. Is he a sporty man? When I felt up to it, I tried to go for a run - nothing crazy - even just around the block - this really helped me mentally and studies say it could potentially enhance the power of chemo and improve side effects.

Third tip - when those side effects are getting him down remember - that’s just proof of how strong and mighty chemo is and it will be mashing up and exterminating the tumor - side effects are there to remind us the chemo is doing its job.

Massive hugs and rocky Balboa strength :x::x::x:

Ddd

Thanks @bear and @strongsami...the triage number is the one they gave us to ring with fevers, before going hospital (although I think I've posted before, he has seemed to go the other way... Cold body core!) I think it's Clatterbridge? I don't know how to get ahold of his crc nurse at the weekend..
I did make him take a domperidone today (makes me think of an Italian gangster that one) but it didn't really touch the nausea. He's not actually been sick, just suffering. Said its like a terrible hangover.. Chemo hangover!
I will try and encourage him it's a sign that it's working.. We're keeping a diary as well, so maybe if he sees (like last time) that it lessens over the next few days that'll help... Sure is a regime! I call it the bull in the china shop... Trampling the cancer, and a lot of other stuff along the way! Hats off to everyone going through this.... Every single chair was full at chemo on Thursday xxx
Ps I bought him some of the gin gin candies while we were at clatterbridge to meet the oncologist... I'll dig them out thanks
Pps he's scared to reduce the amount of oxy, but yes we Deffo need different side effect meds I think! Thanks again everyone.

Polly 1

Has he got any Gaviscon for the indigestion? That usually helps my husband. Also get up and walk about to get things moving.

Fatigue is normal I think but anti sickness should work. Has he taken all his Dexamethasone? When you stop taking them each cycle you can get very very tired

Gingernut biscuits may help

Next time ask about Emend anti sickness which worked extremely well for C when he was on Folfox.

I don't know how many Domperidone you can take but could he try another?

C usually has quite low body temperature as well

It is always worse at Bank Holiday time isn't it @Ddd sending hugs :x::x:

Ddd

Thanks @Polly 1, I think we have some gaviscon, and I'll try and get him out for a little walk tomorrow. He's not been out all weekend, and it's been beautiful weather.. If a bit warm! He took all his steroids, they didn't seem to work much this round? I'll make a note of Emend. Thanks for the cyber hugs everyone :x::x::x:

Polly 1

@Ddd if you can get him out for a little walk early morning that would be good - or if not in the evening. ..but just eg walking up and down the hall or round the lounge will help - anything to get any trapped wind moving
C is on Cetuximab and also takes daily Doxycycline both of which cause skin reactions in sunshine so on these hot days we only appear outside early morning or dusk!
:x::x:

Ddd

Yes that's just what I was thinking @Polly 1... Today he's been downstairs a few times so that'll have helped.. He knows he needs to keep moving, even just mini goals as you say, on the bad days! We are still waiting to hear his kras status. Its been a month now but still no report.. I keep trying to chase it. @Bear G, am I right in thinking, if he's mutant he won't be offered cetuximab? But that, we should check his private insurance for avastin? I'm kind of scared to hear if it's mutant, as that generally means more aggressive /poorer prognosis?? Also... I should prob just start a new thread sorry... What's the difference between kras status and Braf status?? Thanks again, all

Bear G

Hi @Ddd
Yes, KRAS mutant means Cetuximab is unlikely to work so for a biological agent it’s avastin which isn’t available on the nhs.

Please try not to worry about what these results like KRAS and BRAF status, they are mainly to help to inform treatment options and they’re great for that. The whole prognosis thing is something I’d encourage you not to get too hung up about, they show overall survival rates but aren’t useful in terms of predicting individual survival. For example, I was diagnosed as stage 4 and am KRAS mutant, so the odds were seemingly against me, my oncologist’s estimate was 12-18 months. Yet here I am, 6 years later and still going strong.

I found it helpful to see the prognosis figures as targets to beat!

Hope this helps.

Big hugs
Bear
:x::x:

lisa7

Hello @Ddd hope that your hubby feels better soon. My dad got new tablets.for his acid reflux called gertac. He got it when his steroids were reduced. I was talking to an oncologist the other day. She said everyone on chemo should be on gut protection tablets. For nausea, your hubby might need stronger anti sickness. Anti sickness tablets is all about trails and errors untill you get the most suitable one. Sending you both hugs from lisa :x::x:

Polly 1

My husband is on daily Ranitidine (Zantac). He was on it before he was even diagnosed with BC. Just looked up Gertac and see it contains Ranitidine. It definately helps.

Ddd

Thanks @Polly 1, @lisa7 I really appreciate your help. We've got ranitidine in the cupboard so will try that.. He's gone back to bed as it's the day 4 Slump! But I'll get him outside soon. Wise words @Bear G about seeing prognosis as dates to beat! One day at a time....

greyhound gal

Good morning @Ddd , I hope your hubby is better today ?
I say “hats off” to him because I only managed one cycle of Xelox and then continued to Cycle 7 just on Capecitabine.
He mustn’t worry about any possible dose reductions; if he has to have one it could make all the difference in making it to the end of the treatment? I think very few people don’t have them and there are studies that reductions by up to 30% (to 70%) are still effective.
Many best wishes, Wendy :x::x:

Ddd

Thank you @greyhound gal (I'm a dog walker, I love greys!) We spent 6 hours at a & e today after hubby woke up cold and dizzy which progressed to confused... Bloods and head CT came back clear, so we are back home, but he still feels rotten. If no improvement by morning, I'm going to call the crs nurse attached to his oncologist for advice :x::x:

Lirio345

Good morning @Ddd, so sorry to hear about the horrible time your husband is having. I think that you are absolutely right to contact the CRS nurse this morning.
Please stay in touch and let us know how you get on, Kim :x::x:

Polly 1

Hi @Ddd sorry to hear of the A&E visit - how is he today?

Ddd

Hi @Polly 1, quite a lot better thank u xx he went to bed sitting up which seemed to help with the vertigo, and he was able to get some sleep. He's taken the chemo tablets again this morning with no problems, so it doesn't seem directly related to them, which is good. Carry on with the "capybara" lol! And just get it over with..... Thanks for checking on us ❤️

justhope

good morning @Ddd so good to hear your hubby had a better night and better morning, it makes the same for you doesn't it? And an altogether better start to your day and his.
I hope the trend now is continuing upwards :x::x::x:

Polly 1

We are currently sitting in the chemo unit - today C is having his 72nd treatment cycle (since 2013).
He hasnt done it as much recently but C used to sleep sitting propped up by his V pillow a lot. It helped him as well.
We havnt had any experience of cap tablets as C has always had the 2 day 5FU pump. Glad to hear your husband has managed to take them OK this morning
Hope you both have a better day today :x::x: