Fluorouracil mitomycin and radiotherapy all together?

Hi there GreenNanny,

There are generally 2 treatment regimes for anal cancer, there’s the one that you describe where the combined chemo drugs are delivered via a pump/port on weeks one & five of treatment with radiotherapy each day throughout the 5.5 weeks, this regime is used by some oncologists in the UK but is much more commonplace in the US. The second is the treatment regime that I had, a mitomycin infusion on day one of radiotherapy & capecitabine oral chemo twice per day every day of treatment thereafter, usually 5.5 weeks also. Whichever regime is prescribed facing treatment is & was really daunting for us all, so you’re not alone in the way you’re feeling, my feelings were a mixture of wanting to begin treatment asap to get rid of my cancer but I was also really fearful of what was to come! In my case the image I had in my head of treatment was way worse than the reality. 

Hopefully someone that has had the same treatment regime as you’re facing will see your post & reply. 

Nicola 

Hi thank you for your response. Fingers crossed as you say it won’t be as bad and yes I just want to get on with it. Hope you are ok now. Take care x 

Hello GreenNanny,

Are you in the States?  There seems to be slightly different ways of delivering drugs at this point, as with Nikki65 I had a bolus (IV push) of mytomycin on day one and then huge tablets - capecitabine which I took twice every day for the five and a half weeks.  I was so overwhelmed by the tablets that they gave me a protective kit to either crush them or cut them in half.  In the event, I think it must have been mind over matter, I was able to swallow them whole but I did suffer diarrhoea  But at all times the staff were so helpful they allayed all my fears and I had read enough on here to be well prepared for the after-effects of the radiotherapy.  It is so easy (and daft!) for me to say don't worry but you WILL get through this and we are all here rooting for you.

Irene xxx

Hi Irene thanks for the reply. I’m in England. Sounds hard work with the tablets bless you! Don’t think I’m having tablets I’m having a pump and intravenous and radiotherapy. I’ll be ordering a sitz bath for sure! Some have had horrendous side effects right from day one so really trying to block it out which isn’t easy. Hope you keep well, take care xxx

Sounds like the Brit version of the treatment I had in the US, 4 days of chemo concurrent with radiation, 5 1/2 weeks of radiation, and another 4 days of chemo at the end. 

I know you're dreading it, and it's for sure not fun, but if you keep in mind that all those various drugs and chemicals and poisons are busily eradicating all that cancer from your tissue, you can talk yourself into rooting for them instead of just suffering through them.

It's hard not to anticipate the side effects, but it's such a squandering of the energy you need to surf past this. It's non-stop horrendous for some, and a total wak in the park for others. Most of us are somewhere inbetween and you won't know how it'll be for you until you get there. Try not to make it worse by anticipating horror. 

Spend the time you've got to prepare getting your supplies together. A good water bottle (you must drink lots and lots of water during treatment!), wet wipes, aromatherapy, hard candies, books you've been dying to get to, soft pillows and blankies, an assortment of soothing ointments for your bum (the ones there seem to be differnt from the ones here but there are lots of threads recommending various types). I had a bell called the Summoner to bring my devoted swain to my side when I needed something. Set up a comfy recovery area to sink into every day when you get home from treatment. Buy yourself an inspiring piece of art that lifts your spirits every time you look at it. Plan a mini break or dinner party or picnic or spa day as a reward for when you're really feeling better (but don't make any solid dates yet, you don't know what your individual timeline wil be.)

I found journaling, which I've been doing for a few years anyway, to be super, super helpful. 

Keep coming back here! We all know JUST how you feel!

Suz

Hi again GreenNanny,

I’m now almost 4.5 years post treatment & doing well thank you… The best advice I could give is take it a day at a time, everyone is different & therefore reacts a little differently to the various treatments, someone told me while waiting to start my treatment to keep my eye on the prize & as difficult as that was in the beginning I soon got into the swing of it. You’ll find that once you get into the routine of your daily hospital appointments that the time will pass pretty quickly & looking forward to the weekend with no treatment was always a plus. I would carry my radiotherapy schedule with me to appointments along with a bright pink highlighter pen & got great pleasure in checking off each appointment as soon as I got out, something simple I know but it’s amazing how quickly the pink overtook the page! 

Nicola 

Hi GreenNanny

I was treated at Bristol last year with all the drugs you mention. On Day 1 you have your pump attached,(a small plastic bottle) to your previously fitted Picc Line. This is filled with the Fluorouracil and it slowly drips into you over the week. It works with the heat of your body. At the end of the week or when it’s empty, it will be removed and re-attached again on week 5. The Mitomycin was just a one off quick shot with a syringe. Over in seconds.  I was given anti sickness tablets but I only ever used one.  I started the Radiotherapy on Day 1 for 5.5 weeks too. 

I personally found Weeks 1 to 4 fairly easy. It was only at week 5 that I did start to get tired (partly the travelling) and the chemo hit a bit harder, but a nanna nap every afternoon did the trick. I did however start to feel the effects of the radiotherapy badly at this point and, like most, for a few weeks after it had all finished, as it’s still working. Everyone is different, but just be kind to yourself and rest. 

My Radio Team were amazing and the nurses give you every lotion and potion you need to get through it. Be careful buying items yourself as it’s not all suitable. I bought some Sudocream for example and it contains iron so you can’t use it when having the radio. 

I know it all seems very daunting now but I promise you will get in the flow of it. Comfy soft baggy clothes, a good book, staying hydrated, and having some pre prepared meals, helped me immensely. The days off at weekends are a welcome break too.

Anyway, I have just been confirmed All Clear with no sign of residual or recurrent cancer at my yearly check up. You’ve got this. Stay strong. Nikki65 helped me through my wobbly points during and after treatment. This forum will see you through it. 

kind regards and good luck 

katie 

Hi Nicola thanks for the reply. So pleased you’re ok and 4.5 years is fantastic! I love this idea I’ll definitely get a pink highlighter! Take care xx 

Hi Katie thanks for the reply. I feel a bit better now reading some of other peoples experiences. Definitely will take on board all of the kind advice! Thank you so much. I’m so pleased for you with your good news! 

GreenNanny

You will have lots of highs and lows along the way and will return here many times but you’ll deal with it.  I just saw a previous post of yours - I led on my back for radiotherapy with a gown on and was suitably covered over for treatment. After day One you won’t worry, I’m sure of it. ️