Bowel cancer treatment and side effects

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Josianna

Horrible experience of chemo

Hello everyone. I hope you are all doing well. I wonder if I could pick a few brains please.
I had my first chemo session 3 weeks ago and for me it was pretty horrific. I just couldn't cope with the severe side effects and I stopped taking the tablets. The nausea was terrible and the anti sickness pills I was given didn't help at all.
Today I went back to the hospital and saw a nurse who understood that I'd struggled and was very sympathetic... So.....she has suggested that I don't continue because I struggled so much with it. She said regular surveillance scans should be enough.
Has anyone else had a similar experience with chemo and been given the same/similar option?
I've asked for an appointment with the consultant asap to get his opinion and was also wondering if anyone had any suggestions of what questions I can ask him.
Once again I'm consumed with worry that this is only happening to me and why couldn't I tolerate the chemo as plenty of others seem to? And if I don't have it am I now doomed!!!

Ps. I would've liked to tag members into this post who have been kind enough to follow my journey and have offered me support and advice but I don't know how to do it. 🤦‍♀️

Jo :x::x::x::x:

bettebette

Hello @Josianna sorry to hear about the detrimental effects the chemo had on you. My situation is different to yours but
5 years ago I was advised to have chemo following a resection, but because of a pre-existing illness I was very wary about risks/benefit and I asked for a second opinion. The result was hugely beneficial, not least of all because the risk/benefit was examined by a second team but also explained to me *very clearly* (the advantage of private medicine for the second opinion- perhaps - more time?) The final decision was down to me but in light of both opinions and with a bit of 'calm space' I felt able to say no to the chemo, a decision which paid off for me (read my profile if you are interested, I won't bore you with all the detail here)
Your appointment with the oncologist should enable you to ask for figures, ie % of perceived improvement with chemo, and of course they might suggest a different treatment, so go armed with questions (and with someone to take notes for you?)
In the coldlight of day the benefit of chemo for me turned out to be "about 4 - 6%" with the risk to my lungs much higher.
I am very grateful to my local team but in my experience a second opinion was invaluable.
Best wishes for Weds. :x::x:

Josianna

Hi bettebette, thanks so much for getting in touch. Your profile is a very interesting read and so inspiring. I shall definitely click on the links you have given. Knowledge is power as they say. Thanks for those.
You certainly made the best decision for you and I'm thrilled that it turned out to be the right one. I know all the tests/scans etc can be terribly nerve wracking but they are so important and vital to nipping any issues in the bud. You're right about needing some calm space to be able to think things through and process the information given. This is something I've really needed and also to talk to others like yourself on this forum who've actually been through all of this.
I asked the nurse about figures and she said that Capox which I had struggled with gives about 15 - 20% protection. I think I was a bit surprised to hear that as I thought it would've been more. I would've liked it to have been more especially after the hell it can put people through.
At an earlier appointment the oncologist said that if I couldn't handle the Capox then I could try the tablets (Capecitabine) on their own which have less severe side effects. The nurse told me that they offer about 6 - 8% protection.
I'm going to ask the oncologist if he still thinks I should give the tablets a try. I am just so very worried that if there are any 'seedlings' that were missed when they operated and they are still floating around in my body nothing is being done to deal with them. As I've said before , I find the worry from all of this is sapping the life out of me!
Hopefully I will be able to report some better news after Wednesday but thanks again for getting in touch and sharing your experience and info. It sounds like you are doing really well and long may you continue to do so.

Love Jo :x::x::x:

Bumblebeebum

@Josianna so sorry to hear about how rubbish it made you feel. I had 4 cycles of the infusion on day one followed by 3 lots of tablet form daily for 21 days. It was rough to say the least.
During infusion 2 I had a nasty reaction that they classed as severe. So, I had an extra week off to recover from that cycle then carried on at a reduced 80% over a longer time.
My side effects again we're rough. Terrible spasms over my body, throat spasms, neuropathy....loads more - so I can empathise with you. I'm glad to say though that my symptoms were rare.

Have a blether with your consultant for sure, and best of luck

bettebette

Hi Jo @Josianna thanks for your reply; to answer your other question, to message or tag anyone just put the @ symbol in front of their profile name ie @bettebette :x::x:

Josianna

Thanks bettebette 👍 :x::x::x:

Josianna
Quote from @Bumblebeebum:
@Josianna so sorry to hear about how rubbish it made you feel. I had 4 cycles of the infusion on day one followed by 3 lots of tablet form daily for 21 days. It was rough to say the least.
During infusion 2 I had a nasty reaction that they classed as severe. So, I had an extra week off to recover from that cycle then carried on at a reduced 80% over a longer time.
My side effects again we're rough. Terrible spasms over my body, throat spasms, neuropathy....loads more - so I can empathise with you. I'm glad to say though that my symptoms were rare.

Have a blether with your consultant for sure, and best of luck

@Bumblebeebum Hi, thanks so much for getting in touch. I just can't imagine how you got through 4 cycles of the infusion on one day!!! I'm sure that would've killed me!!! I did have the throat spasms and I couldn't speak properly. It felt very strange.
I'm pleased to hear that they reduced the dose and made changes to help you cope better with it. That's what I'm hoping for and will be asking the oncologist about.
Will post on the forum with Wednesday's result.
I hope you're doing really well now and thanks again.

Jo :x::x::x:

Bumblebeebum

@Josianna apologies... It was a fusion on day one and 21 days of Cape tablets. Oh I think I would have probably would have died if it was that many daily. Apologies for the confusion :x::x:

Josianna

Ah @Bumblebeebum no worries. I just thought wow that's the most I've ever heard of. Pleased to hear you weren't given as much as that.
Hope you are doing well now.
Love Jo :x::x::x:

Josianna

@Mrs W @hev @Bumblebeebum @JillyD @bettebette @Yorky77 @Richard Staff (Support and Information)
Hi everyone, Hope you are all doing well. Donna, I hope Alan is feeling stronger and coping ok with the treatment. Hev, hope you are managing to get out for a walk. Jen I hope the chemo is going ok for you and is manageable.
Just wanted to let you all know that I saw my consultant again today to discuss my horrendous reaction to Capox and what I do now?
He said that it was reasonable to say that I was cured after surgery and when I asked about my future he said that it looked positive.
He said that if I wanted to be further reassured then I can try the Capecitabine tablets on their own without the infusion. I can take them for 3 months and if I can take them for any time over the 3 months then that would be a bonus. So I'm going to give them a try starting from next week and hoping that I find them manageable.
Hope you don't mind me tagging you all in to the one post instead of replying to you all individually.
Lets please keep in touch.

Love Jo :x::x::x:

hev

@Josianna
Pleased to see your message about meeting and you have plan of action.
Like we have said before we cannot predict how we will all react to treatment as we all differ so much but wish you best - def keep me updated
I was so very very lucky and grateful that although having chemo before my op which as said before hit me like I could never have imagined- after op I was told no further treatment necessary- blood test in 6 months and yearly colonoscopy!! I still cannot believe this as my mind went all over place during last 7months
When I was told although I knew best news ever-my mum had passed week before my operation and I think I was just totally overwhelmed by everything- intact if I am being honest I’ve still not processed it all even after 6 weeks recovery
I wish everyone in this forum all best whatever stage of journey we are all at :x::x:

Bumblebeebum

@Josianna thank you for your update...it sounds so positive. As for the choice to have the tablets, I'd say that's a great choice. I read up about them when I was on them last Autumn - and I used to call them my 'magic beans' I read that it's actually those little tablets that are zapping the cancer. You take them in that form, and further down the colon, they change into something else... 😂 Wishing you all the very best, and keep us updated :x::x:

bettebette

Good news Jo @Josianna 🌝 Really very pleased for you :x::x:

Liz Blakelands

@Josianna The Capox tablets sound like a good option, keeping fingers crossed that you find them more manageable. :x::x:

Josianna
Quote from @hev:
@Josianna
Pleased to see your message about meeting and you have plan of action.
Like we have said before we cannot predict how we will all react to treatment as we all differ so much but wish you best - def keep me updated
I was so very very lucky and grateful that although having chemo before my op which as said before hit me like I could never have imagined- after op I was told no further treatment necessary- blood test in 6 months and yearly colonoscopy!! I still cannot believe this as my mind went all over place during last 7months
When I was told although I knew best news ever-my mum had passed week before my operation and I think I was just totally overwhelmed by everything- intact if I am being honest I’ve still not processed it all even after 6 weeks recovery
I wish everyone in this forum all best whatever stage of journey we are all at

@hev Hi Hev, thanks for you reply, much appreciated.
I can imagine your relief when you were told after surgery that no more treatment was needed, especially as you had been through hell with the chemo.
What a terrible time for you losing your mum as well. I really wonder at times how we humans cope with some of the dreadful things that can happen to us during our lives. Understandably you wont have been able to go through the grieving process because you had to deal with your health at the time. You've probably hidden a lot of your emotions and that can't have been easy. You'll still need plenty of time to process what has happened and I hope you can get the support you need to help you work through it.
You're probably doing a lot better than you think Hev, but you'll get plenty of support from everyone, including myself on this forum.

Bye for now,

Jo :x::x::x:

Josianna
Quote from @Bumblebeebum:
@Josianna thank you for your update...it sounds so positive. As for the choice to have the tablets, I'd say that's a great choice. I read up about them when I was on them last Autumn - and I used to call them my 'magic beans' I read that it's actually those little tablets that are zapping the cancer. You take them in that form, and further down the colon, they change into something else... 😂 Wishing you all the very best, and keep us updated

@Bumblebeebum Thanks, much appreciated. I think I'll call them my 'magic beans' too, that should help get them down me!!
Wishing you all the best too and will let you know how I get on.

Jo :x::x::x:

Josianna
Quote from @bettebette:
Good news Jo @Josianna 🌝 Really very pleased for you

@bettebette Thanks so much. Wishing you all the best too.

Jo :x::x::x:

Josianna
Quote from @Liz Blakelands:
@Josianna The Capox tablets sound like a good option, keeping fingers crossed that you find them more manageable.

@Liz Blakelands Thanks Liz, me too!! Wishing you all the best .

Jo :x::x::x:

hev

@Bumblebeebum what a great name “magic beans “
@Josianna thanks for your support- yes I agree I need time to process everything!!! My mum was end of life and I was feeling so unwell and Just couldn’t leave house but knew probably only had couple days but some how found strength to visit her which so glad able to do- very special times! I’ve said before from having my diagnosis I put all treatments and appointments in boxes which in my head I ticked off as each one complete- being told In hospital that my histology results were great and then news that no further chemo was two of the best results I could have wished for but unfortunately my mental state was not good- I’d ended up being in hospital a lot longer after my operation and had quite few problems with postasium levels/high temperature and had tube up nose leading down to stomach due to sickness- I’ve heard many stories on here about the “green stuff” which I was shocked at how much - it just kept on coming!
My bile bag would fill up/ I’d throw up stuff and they used to syringe out bowls full of the STUFF.
I think I just got so down I just didn’t react how I had thought if given good news but I refer to day told as my worst and best day- I just couldn’t react to the results and in with that news My mind kept going to my mum. So much to absorb at that time and still trying to slowly plough through it all but getting there :x::x:

Josianna

@hev I lost my mum when I was in my teens but I still think of her most days, 40+ years later. It took me years to come to terms with losing her but I truly believe I'll see her again one day when it's my time. I agree that memories are so precious and nothing can take those away from you, they'll be with you forever. I have some lovely ones of my mum as I'm sure you do.
You've been to hell and back Hev, To lose a parent is a traumatic experience but you had a cancer diagnosis to deal with at the same time. I really don't know how you've got through it all. I just hope that now you've been given the 'all clear' perhaps it will give you the strength to grieve for your mum which is a natural and healing thing to do.
Take care,

Jo :x::x::x:

hev

@Josianna
Thanks for lovely reply
My mum was 93 and last few years had dementia which during covid she deteriorated as didn’t see us - it had massive affect on her and us as a family. Even though im 60 and mum didn’t have clue what I was going through
I still told her and i almost longed for my mum how she used to be - like many mums she was the best when we were poorly and I know she couldn’t have made the C go away- I so-wanted my mum to say “ it’ll be ok”
I don’t feel I’m a religious person but there is something I believe in and I know my dad was with me when I first walked into have my first chemo ( mum was still with us then )
I know 100% mum was with me during time in hospital-whether that’s what I want to believe or not I don’t care to me both were with me during last 6/ 7 months at various times
I know still raw for me but you’re so spot on losing parent never leaves you however long ago
Hope you are doing ok? Happy weekend :x: