Primary rectal cancer with secondary in inner pelic wall and in the groin

Hi TJFloyd

Welcome to the forum . 
Do you know the individual components of the chemo combination? It sounds very similar to Flofirinox which is used a lot around here and will be able to connect you to people who have used it .

The main difference is some people start with an agent called Oxaliplatin and the side effects are quite different .

I will link in Wellspring as they may have heard of it but also has lots of experience too .

Take care ,

Court 

Sorry, yes it is Flofirinox

That’s good news . I will link in Star74 and Mizzle88 who have experience they could share with you .

Possibly need to start an advise thread for individual components as that might help . I will also link in the bowel cancer U.K. information leaflet as it is good read .

Just to encourage you though my mum had chemo to reduce her primary plus a spread to the liver and it worked a treat ! 

Take care ,

Court 

https://bowelcancerorguk.s3.amazonaws.com/Publications/TreatingAdvancedBowelCancer_BowelCancerUK.pdf
We also have a helpline 0808 808 0000 with nurses who can answer any chemo questions or Bowelcancer U.K. has a nurse you can email . Your treatment centre will have a specialist nurse for back up too .

You will be well supported going through this . There is always someone around the forum with experience.

Take care ,

Court 

Hi TJFloyd

I’m so very sorry that you’ve needed to join our journey, although you’re most welcome. 

I’ve had two cycles of FOLFOX, both before and after surgery. And am now on FOLFIRI following a recurrence of the cancer in my liver. Object being to shrink the tumour to see whether there are then some treatment options. 

Over the four years since my diagnosis of stage 4 bowel cancer, I’ve tried to focus on the here and now. And trust that with the help of family, a support group, brilliant medical team, and prayer & mediation, I will find the strength to cope with what comes my way. 

We are all so different in how we react to chemo. You will have easy access to the more common side effects, and the others are available if you really feel you need to see them. But I’d encourage you to listen to the nurses’ advice and ring the chemo hotline if you experience anything you have a concern about. They will usually be able to offer a way to mitigate the issue. 

Once you’re through the chemo and radio, please share the surgery options. Surgery is the one sure way to remove a tumour. Now is probably the time to focus on the neoadjuvant treatment, and let tomorrow’s questions be addressed tomorrow. 

Thank you so much.. I love your advise of taking each step as it comes so a very big thank you for that xx

Hi TJFloyd, 

Wow, that is a lot of info to process, as Wellspring said, one step at a time.  It can feel overwhelming, however, it is def positive that there is talk of an op in the future.

I was on folforinox last year, everyone is different when it comes to side effects but the common ones are nausea, fatigue, mouth sores and a tingling feeling in hands and feet when they are cold.  Make sure you are wrapped up, thick socks, gloves, etc.  I also kept a pair of gloves next to the fridge as touching something cold would give a pins and needle type feeling, and I usually had a hot water bottle on the go as the feeling goes as soon as they warm up, running them under a warm tap helps too.

You will soon get used to the pump you come home with, I was given a small bum bag to put it in.  I did feel any side effects from this bit, in fact I kept checking it to make sure it was working.  It's like a small balloon in a plastic container that very gradually deflates over 48 hours.

I had the chemo/radio, 5 weeks of radio and the chemo was in tablet form, it's a lower dose so it was easier, it's just used alongside as it can make the radio more effective.  The main side effect from this was tiredness, I could fall asleep standing up!

I won't even mention the ops as don't want to overload you but please feel free to ask me anything, an op was always my end goal but it's one day at a time as its still very early days.

The nurses in the chemo suite are lovely, I actually enjoyed being in there!  Take books, kindle, headphones and they bring you tea/coffee and lunch.  You will soon get into the swing of things.  You will be given a 24 hour tel number,  don't be afraid to use it, there's always some remedy they have for each side effect. 

Make sure you stay hydrated and keep an eye on your temperature.

All the very best, 

Michelle x

Michelle

Thank you so much for sharing your experience and tips, I gratefully receive it all. 

I hear what you say get through Chemo and radiation and then tackle the op.

Thank you again for your invaluable sharing of info

May angels surround you and keep you free of pain

xx

Dear TJF

That is a long rocky road that you outline.I am surprised it has been prescribed for you and rather think that it is simply the ideall type of path that your presenting symptoms would follow.if you were to successfully respond to each stage.

The road will not reach the sunny uplands following those three stages. Add in more chemo, another op then more chemo....freedom.

The most important thing is to reguard each therapy component as your friend. Chemo will stop you dying and get you to stage 2. Embrace it, a few Pity Parties are guaranteed but anything beats dying as long as scans show progress.

I look forward to hearing that you are doing well via posts to this Forum. 

Hi Anthony thank you very much for your advise. 

I think the reason for this treatment is that the nodes are really misbehaving and they cannot get to both areas as they have wrapped around in both lymph areas where main arteries are so they are going to shrink and then OPERATE, well that is my layman's understanding.

Mmm one long road to freedom which, I will embrace at each stage. 

Thank you again xx