Chemo radiation regime

Hi  Ian L c2e27 

Not everyone has had the same routine / timescales or treatment protocols so you will probably get differing answers.

My personal experience of treatment at the Christie was the planning appointment was 1 week after the oncology appointment and my treatment started 3 weeks after planning, so 4 weeks after the oncology appointment.

The treatment consisted of Radiotherapy each weekday so only Monday to Friday (weekends off), for 28 days with Capecitabine tablets taken twice a day 12 hours apart, no tablets to be taken on days with no Radiotherapy. I did attend on a bank holiday Monday and as I finished my treatment the dept was going to update the software on the machines so the dept was being closed for the Friday and instead that treatment was being given on the Sunday, so in that instance the chemo tablets would be taken on treatment days only i.e. on the Sunday and not on the Friday.

The IV chemo Mitomycin C was given only on the 1^st day of treatment.

Hope all goes well with your upcoming treatment 

Monty

Hi Ian,

 I can only relate my own experience and as Monty says waiting times probably differ as do specific regimes.

For me I started treatment 4 weeks after the initial Oncology appointment. The IV Mitomycin was only on day one. The radiotherapy took place Monday to Friday as did the twice daily oral chemotherapy ( Capecitabine). 

I hope that helps. Best of luck for 20th and all upcoming appointments.

x

Thank you for your reply.

How was the treatment in terms of side effects?

Also this seems quite  wait for treatment and im worries it'll spread

I'm sure tgryd have me in if it was that concerning?

Than u for your response x

HiIan L c2e27  

I can't remember exact timescale but I first went to GP Feb 2024 was diagnosed 23 July 2024 from biopsy I then had MRI, CT and PET scans then mapping and picc line insertion which was 2 weeks prior to starting treatment end September 2024. With regards to your last question I had 28 (5.5 weeks) radiotherapy sessions. I had mitomycin day 1 and then a pump attached via a picc line 24/7 for the first 5 days pumping in chemo. The pump was removed day 5 and then reattached for another 5 days (days 21 to 25) then removed along with my picc line. From what I've seen on here quite a few seem to have oral chemo instead, I can't comment on that regime. Xx

Hi,

I am not medically qualified at all, but my understanding is that it is a fairly slow growing cancer, and the team who are treating you will know exactly what sort of tumour you have and where it is situated, so now that you are on their radar they will work out your plan in good time. If there was any urgency, they would have sent for you, as you say. It's a very effective treatment that many of us here have been through successfully.

I had 1 infusion of chemo (Mitomycin) at the start, then radiotherapy and chemo by tablets at home (Capecitabine). The Mitomycin made me feel a little sick, but they gave me anti-sickness meds. Once that had passed the tablets were absolutely fine, although I lost my appetite a bit.

In terms of radiotherapy side effects, they come on gradually so can be dealt with as they show up. We don't all get the same ones either, so try to take each day as it comes for you, without anticipating too much how you are going to react. The main thing you will probably encounter is a really badly sunburned undercarriage, but the radiotherapists will monitor you and give you cream and/or gel.

Don't suffer any side effects in silence - they have seen them all before, so any soreness, itching or pain can be dealt with quickly.

I wish you all the best. Once you get started you will feel things are much more under control and the weeks pass quickly and become routine. xxx

Hello Ian

A warm welcome to the forum although I am sorry you have to be here at all.  But if you need support and information you have come to the right place, all of us have been through or are going through treatment and you will probably get more information here than anywhere else.

It is a really worrying time, and there seems to be an extraordinary amount of waiting around whilst all the investigations are done and meetings held to determine the best course of treatment for you.  Normally, after you see the oncologist, you will have a mapping scan for the radiotherapy and treatment starts perhaps 2-3 weeks after that.  Although the treatment is tough towards the end, it is a relatively short course of treatment which has a high success rate.

And whatever you are going through at the moment, you really will start to feel more positive and in control when something is actually being done to rid you this cancer.

So best of luck on 20th, please let us know how you get on and when your treatment starts.  There is always someone around fairly soon after a post and we have a really helpful group of people on board should you need to chat or have any questions.

Big hug

Irene xx

Hello Ian,

I completely understand your feelings of wanting to get started as soon as possible . I remember feeling surprised that I had to wait 4 weeks and like you being worried that it would spread, but I think these are normal waiting times and the risk is low. 

In terms of side effects, these built slowly and other than the first week of nausea I was ok’ish until week 4. The soreness and burns are monitored by your team and they will give you creams. I had to have a rest every afternoon and felt tired. I also had very little appetite and had weight loss. I would say to take it a day at a time as we don’t all experience the same side effects. 

Waiting to start treatment is a difficult time as having had the diagnosis you sort of just want to get on with it. 
x

Thanks for the info Irene. Im now worried itll spread in thr meantime and I definitely thi k the lump os getting larger. Judt want to have tge treatment and get on with life x

Thanks for the info, let's hope I dont have too many side effects.

Have a good day x