Bowel cancer treatment and side effects

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Frankie

Delayed start to chemo

Had high anterior resection 3 weeks ago and appointment with oncologist on 22 July. I will be having 3 months( 4 cycles) of treatment with Oxlaliplatin and Capecitabine289 and 324.
Appointment was very helpful and everything was explained clearly. I am, however, very concerned that because of a huge backlog , my chemo might not start for 12 weeks. I have read that anything after 8 weeks post surgery is likely to have little effect, in which case I’m wondering why it was advised. The oncologist did say that if I hadn’t hadn’t heard from them in 4 weeks I was to ring them and they might just start me on the tablets. Does anyone else have any experience of delays to chemo or have any further information about this. Thank you.

Lizsa

Hi Frankie. I'm not sure but I had my anterior resection 5 weeks ago and have only just been referred to oncology because the histology results took 4 weeks to come back. They said oncology appointment should be in 2 weeks time, but I was also worried about the delay as I had also heard it should be within 8 weeks. There seems to be such a delay with everything at the moment.

Jane39

Hi @Frankie
I’m pleased that your appointment went well although I am sorry to hear of the potential 12 week delay to start.
There unfortunately seems to be huge backlogs with all aspects of care.
I guess you will keep in contact with your nurse specialist who may hopefully be able to keep you up to date.
Best wishes
Jane :x::x:

hev

From reading so many comments on this forum
It has amazed me that the time difference in getting histology results differs so much.
I can see I was so fortunate/ lucky - I had my operation may 3rd and ended up staying in hospital for 11 days due to few issues but I had my results during this time which was fantastic and I was very fortunate not having to wait
Also while I was in hospital MDT took place and I had results to that too
Hope everyone out there gets results soon :x:

Liz Blakelands

@Frankie
Really glad that the meeting with the oncologist went well but so sorry that you now find yourself caught up in NHS backlogs. Frustrating and worrying.

In my opinion oncologist don't waste words so if the oncologist said to call after 4 weeks and they might start you on just the tablets I would do everything I could to make that happen. I know when I had chemo they wanted it to start within 60 days (over 4 years ago).

If you haven't heard anything within 2 weeks, start calling your colorectal nursing team or oncologist secretary, polite and persistent.

Hope you get a date for starting soon
Liz :x::x:

jodiejo

Hi, sorry to hear you’re going through this.
I had adenocarcinoma with mucinous T3 N1 (1/38) M0 . My chemo started on time but I was so sick they had to stop the capecitabine tabs - so I’d only had the Ox & half the Cape for first cycle! Ended up in hospital for 3 days. Then they gave me extra anti-sickness meds & I was fine- managed full dose for the rest of the treatment!
I was reassured everyone has a ‘hiccup’ … but it feels like the journey is constantly ‘1 step forward, 2 steps back’ …
I’m 43 with a nine year old son. I just want to have my scan now (due Sept) as I’m finding it hard to relax & get on with my life.
Love Jo

Frankie

Thank you all for your replies. I agree that being persistent pays off as my operation was arranged earlier than I expected because I rang the consultant’s secretary and got a cancellation so it is worth keeping at it. People have to cancel chemo appointments quite frequently from what I gather. Another quick query(sorry) but I think the Clexane injections which I’ve been doing for almost a month are making me feel weak and tired and my eyes are stuck together when I wake up in the morning. Is it that or post op fatigue as I was feeling a lot better a couple of weeks ago.

Liz Blakelands

@Frankie
Hi have you still got the leaflet that comes with the injections? The leafet will have an up to date list of side effects and how common and how serious they are.

Or a chemist (if you are getting out and about) will be able to help.
Hope that helps :x::x:

Frankie

I have looked and yes, tiredness and muscle aches are a symptom though it says nothing about eyes. Only have 2 more to go so have decided to stop now. I’m perfectly active so not worried about dvt.

clarebear

Hi I just wanted to say I didn't start my chemo until literally the 12th week lost surgery due to my surgery wound not healing and being infected. I was so worried about the delay but 4 years later all is still OK.

Yorky77

I started my chemo 10 weeks after my operation. They did want me to start at 8 weeks, but I had my daughters heart check ups. They had been cancelled once and it was urgent. They said I could have waited up to 12 weeks if necessary.

Frankie

Thank you all for your replies. I rang the oncologist’s secretary today and she gave me a date16 August which is 7 weeks post op, far better than I’d anticipated. I was told a letter would be sent, but I am so glad I rang as although the date would be the same, I’m now spared at least a week of not knowing, so I would strongly advise being politely pro- active.
Any comments from people who’ve had combined Oxaliplatin and Capecitabine would be very welcome as although I have the dystopian list of side effects I’d like to hear some personal experiences.

Lizsa

Hi that's great news Frankie. I am still waiting for an appointment with the oncologist
I'm 6 weeks post op now and haven't even had an appointment letter so I can't see I'll be starting before 8 weeks. Hopefully looking at others comments on here it doesn't matter too much :x:

Liz Blakelands

@Frankie So pleased that you have a start date :x::x: