hello Rapido trial

Hi juls. I’m hoping Thorners won’t mind being tagged and can hopefully chip in? The picc line was the best thing ever for me - my arm got so sore after the IV but the picc line was so much easier. It was a totally painless experience having it fitted - dont forget to get a prescription for a limbo arm cover to keep it dry in the shower.

Hope it all goes ok 

Take care

Karen x

Hello . Thank you for that. All this is so scary . I am very positive about everything. I do like to look into thing before they happen so I can be prepared. Hope all is ok with yourself. I will definitely ask for the limbo arm.

Take care

Juls x

Jules,

I was diagnosed with rectal cancer in October last year too (T3 N0 M0) so pretty similar to you. Not sure what the rapido trail is but for me the decision was between surgery first or chemo first. Doctors offered me the choice but advised chemo first as it maximised then chances of no long term side effects. 

im 1/3 of the way through 6 2-week cycles of FOLFOXIRI. You’ll see in my other posts, it’s nothing to be scared of. It’s not easy but the staff are great and you can ask them for help with anything and normally there’s something they can do to help. Plus you’ve got everyone here who can offer help and support too. 

Thank you Martin,

My treatment is 1 week intensive radiotherapy( have already had) followed by 18 weeks (9 cycles) of chemotherapy. 

Oxaliplatin and 5 fu . Then surgery hopefully it will have shrunk to make surgery easier. This way chemotherapy is first so any stray cells should be blasted. I will follow your posts.

Take care

Juls

Hi Juls, and thanks for the tag Karen,

I was also diagnosed in October, T3c with at least 1 node affected - age 40. I was initially booked in for surgery (8th Nov) with chemo after but the week before my surgery date doctors decided it would be more beneficial to treat it first (due to size: over 5cm, and age of tumor: poss 10 yrs) and so I was offered the Rapido trial: 1 week intensive radiotherapy, which I received mid November followed by 3 months (4 cycles) Capox chemotherapy (Day 1 Oxaliplatin infusion followed by 2 weeks of capecitabine tablets (3600mg daily) with one week break.

As the plan was changed pretty much last minute no one had mentioned having a picc line put in and so I assumed I would be able to manage having the 4 infusions in the back of my hand, there was never an issue finding a good vein. After my first infusion I lost all the feeling in my left arm for well over a week, there was no way in this world I would have been able to drive back from that session. I then arranged to have the picc put in for the future sessions and its been a lot better - definitely get a Limbo!

My first 2 cycles weren't that bad luckily, it was mainly the cold causing an issue - tap water was like ice and I really struggled with drinking even room temp drinks within the first week of each cycle. I'm now on my 3rd cycle where I've felt a lot more nauseous but that has eased off by the 2nd week of tablets and drinking soft drinks/water doesn't make me feel sick any more.

I'm due to finish chemo mid Feb and will be having a scan beginning of March to find out the outcome of the treatment with surgery planned for the end of April.

I wish you all the best with your treatment, let's hope this Rapido does the job! Whilst I know we will all take to treatments differently, if there's anything else you want to ask just let me know.

Take care and stay strong, Charlie x

How interesting that we all have a similar diagnosis and will all have different pre-op treatments.

My treatment has both your drugs in plus as third (the -iri) bit. The Oxi seems to be the drugs that has the most tangible side effects due to the cold sensitivity. I’ve found that hard for the first day or so (instant vomiting if I g et cold) but then it goes. And I’ve learnt how to manage it (don’t go anywhere cold - doh!) Other people experience it very differently. 

I love my PICC line. I never thought I’d type that but it makes infusions and bloods much easier and I barely notice it now. There’s loads of advice on other message boards and the nurses are super helpful. Limbo arm cover is a must. 

I got a couple of cheap everyday covers for it off of Amazon. But you can just as easily make your own from some old tights or a sleeve cut off an old top.

Hello Charlie,

Thank you so much for getting in touch. Had my picc line fitted yesterday. Not bad at all and I am sure it will be so much better. Finished my radiotherapy last Friday. Still waiting for side effects to kick in so far so good. Keep thinking every good day is a bonus. Please let me know how you get on, sounds like you are doing really well.The Rapido seems the best way to go. Get the chemo out the way first make sure any stray cancer cells get blasted. 

Take care. Juls x

Hello Martin,

Thank you for the advice about the cold, had my picc line fitted yesterday, not bad at all. 

Will go on Amazon today to get a couple of covers.

Take care  Juls x

Wish I’d ordered some covers off Amazon. My mum made me a black one (as my work uniform was black) but when I went to a wedding it looked like I was in mourning so I had to use a stretchy piece of tubular bandage instead! x

Yeah I think it’s easier in winter when you can keep your arm hidden - didn’t think about that! 

Juls - I forgot to mention I have a blog where I write longer stuff about my experience. There’s loads do similar ones out there and mine is nothing special but if you’re interested it’s at www.ohwellhereweare.com