chemo tablets capox

[telford-hiker]

hi I’m have treatment for reacurring cancer ..with infusion every 21 days of xelox..then capecitabine tablets..180 mg In the morning and same again at night ..I started treatment Monday and felt ill most of the time ..dexmethasone stopped yesterday and slept quite well but after tablets this morning feel quite ill again and dizzy ,has anyone else had this treatment 🙏🏻

[wendyh]

my husband had 4 cycles of this treatment and although it initially shrunk the tumour he was not well on it and had to stop as it caused him to get heart failure. He had high blood pressure and was very breathless while doing any kind of physical movements. Also got neuropathy in feet and hands and struggled to eat as his stomach constantly ached. He stopped for 6 months and tumour is stable. Has now had 4 cycles of Folfox chemo and hadn’t been too bad until last week when he got an infection and is currently in hospital. However, I have heard some success stories so I will say just make sure you let the team know about the symptoms, they may be able to give you something for it.

[telford-hiker in reply to wendyh]

thank you this all sounds very similar..with symptoms..I had felt well before all this ..I’ll phone on Monday,..I really hope your husband gets things sorted..🙏🏻

[telford-hiker in reply to wendyh]

had he lost his voice too

[wendyh]

I think it was the second cycle that his voice changed for a while but he didn’t loose it. He would also get sharp pains in his jaw when first eating or drinking on the first day after the infusion

[telford-hiker in reply to wendyh]

thanks …pretty same too ..my voice is nearly gone anyway..but at times have to wind up for a sentence as it makes me breathless..think I’ve gone through everything this week..worse than original FLOT..

[wendyh]

might be worth asking for a referral to cardiology or at least and echo or ecg

[telford-hiker in reply to wendyh]

thanks for advice ..I’ll get on it

[Deeedals]

hi, it’s Dee here. I don’t have an answer for you but just wishing you all the best and a swift good outcome after this brutal treatment regime ❤️PS IM still in hospital. 2 weeks and a day today ! 😱

[telford-hiker in reply to Deeedals]

hi..oh my..you seem to be suffering too..have they no answer for you yet…must be a worry too ..sending my thoughts..❤️

[Deeedals in reply to telford-hiker]

yes it’s a bit of a worry. One of the surgeons did say I’d had a great 16 months and unfortunately now my wings have been clipped( nice way to put it ) they’re scratching their heads a bit as to what to do next but they’re going to try one more stretch before a possible surgical intervention.

Hoping this finds you feeling ok . ❤️

[telford-hiker in reply to Deeedals]

mine said if I wouldn’t have had as much chemo first time I probably wouldn’t of got this far …not what you want to hear ..but the last 2 years have been good ..still,I remain positive..you can get thro this I’m sure ..I’ve got your back ❤️

[Deeedals in reply to telford-hiker]

and I’ve got yours❤️

[Notknowmuch]

Hi

I’m so sorry to read this update. Hope you stay close to the med team and report any discomforts, etc. so asap changes can be made.

Not sure to what extent is the cancer recurrence but do enquire about chemoimmunotherapy. This therapy is meant to do great on recurrent and/or advanced cancers.

My late husband was privileged to obtain this therapy as it hasn’t been available yet in Australia then. Although he didn’t have a positive outcome from the therapy, he was happy to be given that opportunity.

Supporting you in prayers for God’s healing. Take care.

[telford-hiker in reply to Notknowmuch]

thank you ,I will enquire about that,as I have heard positive things ..so sorry for your loss ..thoughts are with you 🙏🏻

[Da1sychain]

Hi, so sorry to hear of your recurrence. Mine came back in my lymph nodes in April 21 following my surgery in June 20. I went for a trial at the Marsden and they gave me Nivolumab immunotherapy and regnorafenib tablets. Worked for 6 months then got more lymph nodes up and eventually learned in September that it spread to my bones. Now back on chemotherapy- paclitaxel. Had 9 out of 28 sessions and apart from nosebleeds and neuropathy I am doing ok. They offered me my original chemo of capecitabine and cisplatin but I was very poorly on it after the surgery - constant vomiting ( varied antisickness tried and failed) and then got pneumonia followed by blood clots. I finished the treatment but it nearly killed me. The point of my text is really to say be careful on that regime as it’s similar to what I had. I’m not saying stop it (as your team know best) just check yourself out thoroughly and give your team a yell if you feel poorly in any way. The other point of my text is to say that there are still options out there - Nivolumab is the immunotherapy option on NHS - I found this pretty tolerable for the year I was on it and it did shrink the original two lymph nodes but sadly more came up 6 months later. At the Marsden there was a man who had same recurrence as me and was given a different immunotherapy Atezolimab and he had had a complete response for 2 years and still going strong so there is hope but not sure that is available on NHS yet. I was also given the option of irinotecan chemo but plumped for the paclitaxel. Just had a CT scan and get the results just before Christmas - hoping for some magic! If this chemo fails I still have the option of irinotecan or going back on cisplatin/ capecitabine if I am still well enough to take it on that is. Wishing you the best of luck for your treatment. Nicola

[telford-hiker in reply to Da1sychain]

hi ..thanks for taking time to reply ..I’ve just had cycle 2 last Wednesday..the infusion is horrible ,left my hand and arm feeling like they have injected an electric bolt thro my hand and arm ,and feel sick the whole time ..although I haven’t been physically sick.,yet anyway 🤞🏻 one of the worst parts is not sleeping due to the dexmethasone I think ..which makes it all worse,by far ..along with dizziness..On first one I was ok after 5 days and felt quite normal and back to even climbing our local hill..so I think the 180mil of cape will be copeable.. I have a meeting after every cycle to check progress and have informed them of how I feel ..but they just say ‘ yes’ it must be awful..so it’s good to pass on your input too ..without mentioning any names of course…Have you lost your voice too..mine demised at start of August,which was the early warning sign..and seems worse now thro the tiredness and just a low gaspy murmur,which is one of the worst part .. people butt in before I’m finished then have to start again which makes me dizzy ..and frustrated..I’m told this may never return..I haven’t lost my hair ( beard) as yet ..but fingers crossed there too ..I have read about immunotherapy,but wasn’t sue this is available yet but I will certainly enquire this time ..lastly my third cycle was booked for 23rd December which would have been disastrous for Christmas ..so I’ve put off till 3 January..so extra respite ..🤞🏻 ..I sincerely hope your doin ok and have a half descent Christmas..would be interested in how your voice and throat are taking this ..and be nice to swap stories..kind regards Marc

[telford-hiker in reply to telford-hiker]

180ml twice a day sorry

[Da1sychain in reply to telford-hiker]

Hi Marc, sorry it’s taken me a long time to reply. I have two children and Christmas is always a busy time without all the extra stuff we are going through. I hope you had a good Christmas as I know you had put off your 3rd cycle until the new year. How are you doing? I notice from your reply that you were struggling with sleep deprivation due to dexamethasone. I had that and put up with it with my pre-op and post-op chemo as nobody told me they could help with it. However, when I went a whole night with no sleep at the start of the current chemo I mentioned it to my consultant and she prescribed sleeping tablets - I think they are called Zoplicone. They have made a huge difference as I get about 6 hours sleep on them. I only take them on the 3 days I am on the dexamethazone but as my treatment is weekly that is 3 days per week. I was worried they would make me groggy during the day but they don’t seem to.

I haven’t got voice issues. That sounds horrible for you. Is it any better now or has your team been able to help you? Are you getting reflux? I’ve just started to get a sore neck/throat on one side but I have quite a few lymph nodes swollen in that area so guess it’s down to them. I have a CT scan at the end of Jan and see consultant on 20 Feb so if it doesn’t get worse I will wait for then.

I think you are on oxaliplatin for your infusion? How long is the infusion and how often do you have to have it? I was on cisplatin for my first chemo and I was in the unit all day every 3 weeks. I am on paclitaxel now and that is 3 hours in the unit every week. I have to give myself a stern talking to every week as I really don’t want to go in - it’s almost a phobia now. I have had nearly 3 years of almost constant treatment of some sort. It doesn’t help that I am unsure whether it’s actually working as the lymph nodes are still coming up in my neck and my bone pain is a bit worse, but with all the side effects of the drugs it’s hard to know what’s causing what. I may have to go back to a platinum based chemo as my next treatment option, hence me asking about oxiplatin.

Well, I hope your treatment is going better for you on this cycle. Keep your chin up.

Nicola

[telford-hiker in reply to Da1sychain]

hi ..I’m just getting over my 3rd cycle of oxalapatin..and it’s not nice tbh ..feel quite I’ll for first 7 days ..dizzy nausea and general tiredness..I’m now on day 10 ,and woke feeling normal again,and managed a 4 mile walk…the infusion is only about 2 and half hours,,but hits as hard as my original FLOT that lasted over 2 days..I had a CT scan on monnday which was not very nice as I felt quite ill,and to top it they couldn’t find a vein for ages..I have a meeting this coming Monday so the oncologist can take a look to see if he thinks it is working..🤞🏻my voice is pretty non existent..and been same since August..Which is hard work,but I also have a second meeting Monday to discuss with a different doctor at hospital to see if I can get an injection into voice box which may help 🤞🏻once again ..Thanks for the tip on the sleeping tablets as I only get 1 to 2 hrs per nite..while on dexmethasone.. which doesn’t help…how are you now..it must be so difficult.

[Da1sychain in reply to telford-hiker]

Hi, glad to hear you got some positive news on your CT scan and glad you are sleeping a bit better, but it sounds like you are having a tough time from your last post. Hang on in as long as you can as it appears to be shrinking the tumour. How many cycles do you have left? Have you managed to get the throat/voice box sorted yet?

I’m doing ok, apart from the neuropathy and some pain from the bones and some anxiety. I’m not sure the chemo has done much as I don’t feel any better, but then I am not massively worse either, so we shall see. I have one more session of chemotherapy next week then a scan on 11th ( bit annoyed as it was supposed to be end January but oncologist forgot to put the referral through). I see oncologist on 20th but not sure the full CT report will be through by then as it usually takes a minimum of 2 weeks. Best of luck with the rest of your treatment. Nicola

[telford-hiker in reply to Da1sychain]

hi ..2 more cycles to make 6..they did say 8 if possible,but I don’t think I’ll manage that ..this one has hit hard mentally as well …still no voice,in fact worse if anything..first time I’ve been down a bit ..but just seems no end to it all..we have booked a cottage in wales end of March ..so hopefully do me good..I hope everything is ok ..has yours returned too ..they are getting scan results back a lot quicker now,so hopefully should hear soon ..is your anxiety a result of the chemo

[Da1sychain in reply to telford-hiker]

Hi, not surprisingly you are a bit down. This is really rubbish. Weather at this time of year doesn’t help. Looking forward to some Spring sunshine. Mine is in lymph nodes and bones. The anxiety is over every little new symptom and worrying it’s spread further. Had a sore throat for a while (doesn’t affect my voice) and it is listed as a side effect of the chemo I am on, but it still worries me. That, and the scan results coming up - always a hard time. I think the steroids can make me feel anxious as well - seem to make me a bit panicky. I hope you manage to dig deep and get through your cycles. I remember the Cape tablets being particularly difficult for me. Every time I went to take them I would gag - my body was just saying No, but I did get through it. All you can do is do your best. Take care and keep in touch. Nicola

[telford-hiker in reply to Da1sychain]

thank you..it’s nice to chat to someone that knows ..everything is a worry 🙄😊 I wish you all the luck in the world too

[FKM100]

Hi - I also support the suggestion of a sleeping tablet. I was prescribed Ivedal when I was first diagnosed at the beginning of 2020 and couldn't get to sleep, and they have made all the difference.

During chemo there were a couple of nights when the dexamethasone won, but otherwise they pretty much guarantee six to seven hours of solid sleep. I wake up feeling relaxed and refreshed, with no lingering grogginess during the day. I am personally convinced that just being able to sleep really well has played a huge role in getting me this far and in keeping me sane.

I know we are often taught to think that sleeping tablets are 'bad' and should be avoided at all costs, but my feeling is that, after all we have been through, we should accept whatever help we can get.

Wishing you all the best - Shell.

[telford-hiker in reply to FKM100]

I’m will to try anything,so I’ll mention it thank you.🙏🏻I have another appointment Monday to discuss an injection into my voice box as I’ve hardly any voice since August..

[FKM100 in reply to telford-hiker]

Good luck - I'll be thinking of you.

[telford-hiker]

so ..had a meeting today with oncology..the CT scan revealed that the chemo had shrunk my tumour from 1.4cm to 1.1cm ..and not spread so good news,and a bit more incentive to carry on chemo..at least I’ve got a goal now ..so feeling pretty happy

[Deeedals in reply to telford-hiker]

hi mate, happy new year and great news for you . Keep going you’re doing great xx

[telford-hiker in reply to Deeedals]

thank you 🙏🏻 and hope your doin well

[telford-hiker]

thanks to everyone..on my first nite of chemo..and usually the worst ..due to insomnia..I was given zoplicone 7.5 mg and got 10.5 hrs good sleep..awoke feeling refreshed..I really can’t believe you are offered these before ..this was my total round of 12 so far ..and Dexmethasone have ruined me before ..so if anybody is suffering the same ..I say highly recommend