Capox - 4 Cycles starting soon.

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Hi Everyone,

I hope everyone is as well as can be. I’m now six weeks post surgery and the last two weeks I have gradually started to feel a bit better. I’ve felt a bit stronger each day and had a little more energy. My bowels have generally started to behave a bit kinder to me and whilst still unpredictable they are certainly more settled. It’s just over two weeks since my catheter came out after a UTi……think I let out an ultrasonic yelp that could only be heard by dogs when it was removed but I was so glad to leave it behind. I’ve managed to visit friends and even made it back to watch my beloved Mansfield Town FC on Tuesday night so I’ve enjoyed a slice of normality.

I met with the oncologist for the first time on Thursday and he was great. Out of the 29 lymph nodes taken during the surgery the cancer was present in 2 of them, which I had already been told but he also said it was present in something else that was lymph related…..but I can’t remember for the life of me what? He said the important part was the 2 nodes though.

The plan is for me to have 4 cycles of Capox, which thanks to the information on here and stories that people have shared I had already read plenty about and again I had been told on here that 4 cycles would be the most likely. The calculation they gave me I respect of the benefit of having the treatment was without the chemo I have an 80% chance of reaching the magic 5 years and with the chemo that figure leaps to a 94% chance. It’s a pretty remarkable increase and as they are aiming for a total cure and it’s only 4 cycles it should be a case of let’s crack on and get it done.

The truth is I am absolutely terrified, I processed the idea of surgery far easier, it was a case of either I have it or the cancer will at some point kill me. With the chemo I am finding it much harder to commit to it. The surgery was successful, the margins were all clear and they are happy they got all the cancer but obviously they can’t guarantee it. As my recovery from surgery has been somewhat eventful I can’t get my head around being poorly again for the next three months after I’m only just feeling a bit better. The thought of severe diarrhoea after my bowels have only just decided to cooperate with me and still getting used to the sensation of different muscles being used when going to the toilet is enough make me panic. What if I am struggling with that on the day of the IV and can’t make it to the toilet in time….I know that might sound daft but it’s going around in my head. The thought of being physically sick snd having diarrhoea at the same time, risk of infection, I’ve read one of the side effects can be uncomfortable and burning sensation when peeing. I don’t want another UTI, the one I had was enough to last a lifetime and made some of the other stuff seem a doddle.

Part of me knows I need to put my big boy pants on and face this, the benefits are clear, I am incredibly fortunate that I have such a positive potential outcome and I owe it to my wife and daughter but inside I’m scared and can’t stop thinking ‘nope, no more for me’.

Thank you as always for the space to offload, it does feel better to get it out and written down.

Kareno62 over 1 year ago

Hi Craig123 I can totally appreciate where you’re coming from - I had a few set backs after surgery and the thought of then starting to feel rubbish all over again was a bit daunting. At the end of the day it is your decision - both my lymph nodes were close to the tumour and, as they travel in chains and the ones further away were clear, then my oncologist said she wouldn’t be overly concerned if I didn’t manage any chemo. Perhaps you could ask where the affected lymph nodes were in relation to the tumour?
So here’s a few things to consider - just my opinion of course

If the cancer was to return would you kick yourself for not having chemo or could you live with that thought?

Sometimes the reputation of chemo is worse than the actual experience - I continued to work part-time at my office job throughout mine

You could give it a try and, if you really can’t tolerate it, then stop - it is your decision.

Although there are a lot of side effects you’d be very unlucky to suffer all of them but they have to be advised

There are various pills and potions to combat any side effects and a dosage reduction is also an option. The nurses keep a close eye on you and you’ll be given a 24 hour help number to use if you’ve any worries

If you need the toilet during chemo then you unplug the drip stand,take it with you, then come back and carry on

Realky glad to hear that you’re starting to get on top of things and the UTI has finally cleared up. You know we’re always here if you want to offload and the support desk is there too if you want to chat to someone in person

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

DlFarmgirl over 1 year ago

Hi Craig

My husband is just about to start cycle 4 of the same chemo. He hasn't had much problems with stoma output its a bit more watery the day of the IV infusion but the chemo tablets do seem to bung him up a bit so we try and hold of the emodium because we know the constipation is coming He takes a couple of days of dulcoease to help with that.

He's hasn't been sick but has felt sick and very exhausted by the smallest of tasks, showers etc. His one piece of advice was if they offer you a PIC line or port go for it because he went for the cannula and he has had quite a bit of pain and pins and needles which the nurses have said is less with a port or PIC line. They also take your bloods through it so no stabbing, they have struggled to get any blood from his veins. So that was his advice. Hope you make a decision and that all goes well for you.

Rac over 1 year ago

Hi Craig123,

Im pleased the UTI has finally gone and you have a chemotherapy plan. I’m on day 15 of my first round of CAPOX and I’ve not really had many symptoms. I did feel sick one day and then had diarrhoea the next but that’s it. After the infusion I was sent home with 3 lots of anti-sickness to take for the first 3 days.

Before I started treatment, like you I spent a lot of time debating if it was the right decision. I was told I have a 70% chance the cancer will not return and a 78% chance after chemotherapy. After many days of debating, I decided that I would always regret not having the chemotherapy if the cancer returned!

Hope your first session of chemotherapy goes smoothly.

Rachael x

NickyP over 1 year ago

Hi Craig123

i had the 4 treatments of capox, and yes I was terrified of having chemo.

my last bout was October 28th last year, and it seems a lifetime ago.

i did have side effects but got through it, the helpline staff were amazing ! There’s lots they will do to help.

I decided to have the treatment to make sure I gave myself the best chance of the cancer not returning.

its not good but it ant that bad either. You can do this.

best wishes

Nicky

Craig123 over 1 year ago in reply to Kareno62

Hi Karen,

Thanks very much for the reply and the reassurance. I had a 6 week post op appointment with my surgeon today, I asked how much of my bowel had been taken away and it was a sizeable chunk. I also asked about the proximity of the cancerous lymph nodes to the tumour and was told that the location of them was actually irrelevant, so contradicting the information you were given.

You are of course absolutely right with regards not going through with the treatment and the cancer then returning. I don’t think I would forgive myself, I owe it to my wife and daughter.

I also appreciate that the reputation of chemo might be worse than the actual experience. I think because of the ropey time post op I’ve already managed to convince myself that chemo won’t be without its drama too.

I know it’s something I’ve got to go through to hold up my end of the bargain and say Ove done everything in my power. I’ve actually received a call today to tell me based on the staging of my cancer I qualify to take part in the TRACC part C test, which I will post separately about.

Craig123 over 1 year ago in reply to DlFarmgirl

Hi DIFarmgirl,

Thank you so much for the reply and I hope you’re husband’s treatment is going well.

You’ve actually highlighted a few of my main worries there so thank you for the advice. My veins had already given up being jabbed in the days after surgery and Karen and others re A PIC Line. Luckily my veins have recovered now and the oncologist took a look at them and said they’d be fine.

Craig123 over 1 year ago in reply to Rac

Hi Rachael,

Thank you for the reply and I’m really pleased that after 15 days you are managing well with the side effects. It’s always reassuring to read other people’s stories and the fact that I’m not alone in my doubts and concerns.

I’ve today been invited to take part in the TRACC part c trial which may change my treatment plan, depending on which category I am placed in and what my blood results indicate regarding microscopic cancer cells in my bloodstream.

Craig123 over 1 year ago in reply to NickyP

Hi Nicky,

Thank you for the reply and positive message. It’s defo helpful and reassuring to know other people feel the same but show it can be done.

Thank you.

DlFarmgirl over 1 year ago in reply to Craig123

Hi Craig is this the trial where you don't have the IV drug but longer time on the oral chemo? If it is my husband was offered this trial but it meant more regular visits to hospital for blood tests and he wanted his treatment over with in the shortest time.

We have both been releaved that he chose to say no to the trial as he has really struggled more with the oral chemo side effects than the IV infusion so if you do go for the trial make sure you have robust antisickness and if the first type they give you doesn't work ask for them to be changed and don't suffer in silence. Don't want to put you off the trial but knowledge is power so good to share out experience. Good luck

Rac over 1 year ago in reply to Craig123

Hi Craig, it’s fantastic news that you have been invited to take part in the trial. I hope all goes well for you.

I was offered a blood test to look for cells in my blood stream privately at the cost of £5000. I decided that I would take the chemotherapy instead as I had signet ring cell adenocarcinoma and would always regret not taking it if the cancer came back.