Chemotherapy

Hi ekimjo 

Welcome to the forum.

It’s one of the pretty standard cocktail used by the oncologist for bowel cancer . 
This thread has useful tips for handling chemo . Obviously not everyone gets side effects but for those who do this thread can help .

Keep talking to your team as there are things they can do to assist during the process .

 CHEMO TOP TIPS UPDATED

All the very best with your treatment .

Court 

Thanks Court. Your contact and advice is invaluable to me. Stay safe.

Hi ekimjo

And welcome to the forum. It sounds like you are recovering well from your initial operation.

I had 12 cycles of Folfox chemo between January and July 2022, following a low anterior resection to remove a tumour and 23 lymph nodes, 11 of which showed signs of cancer.

I also had an ileostomy, which was successfully reversed in May 2023.

I’ll not sugarcoat it, folfox is not a walk in the park by any means, but everyone is different and is affected in different ways. It is important to let your chemo team know of any side-effects as soon as they happen. Chemo doses can be adjusted accordingly and there are a lot of meds to help with side effects. They usually start off on the highest dose for your height and weight and see how you react.

My dose of oxaliplatin, one of the drugs in the folfox cocktail, was reduced after cycle five and stopped after cycle nine due to peripheral neuropathy in my hands and feet. Something that still affects me now. More of an inconvenience than a burden.

The main side-effect I found was fatigue which got progressively worse each cycle, so much so that it was taking me half an hour to shower of a morning, and another half hour to get dressed.

However once cycle 12 was over my energy levels quickly returned and I was back in the gym after four weeks (taking it easy of course).

I found taking it one cycle at a time and keeping to a routine helpped.

Chemo is doable. I wish you well on your journey.

ps My three year CT scan last November was clear!

Thank you for your contact, and very informative it is. You really did go through the mill and I’m so pleased your 3year CT scan was clear.

I will bear in mind all you have said and be guided by your experiences.

Kind regards,

Folfox is very standard treatment. I can't add much to the info already shared. But do be very honest about side-effects with your treatment team'. We are cultured to say everything is fine and to be a bit stoic about our symptoms. No one wants to be the complainer. But things like the peripheral neuropathy can become permanent and there's no shame in having the dose reduced or the Oxaliplatin stopped early. 

Im interested in these posts (& wish everyone well) as I saw my surgeon last week. She said that there is a new study where the folfox chemo is basically 'staggered' with half given before surgery and the rest afterwards. Told that delaying surgery shouldnot make a difference? Im seeing the oncologist next week but apparently it will be my choice. This seems daunting. Has anyone else had this experience please? 

I had radiation followed by 8 rounds of chemo prior to surgery.  It was originally supposed to be 12 rounds but my oncologist wanted to hild 4 rounds for after surgery if needed. I had clean margins so we didn't do the additional chemo. 

I don't know if this is similar to your situation. In my case, the tumor was too large for surgery so it needed t9 be shrunk first. And the radiation and chemo were successful at doing that. 

If your tumor is operable now, I'd think shrinking it with chemo first would make the surgery easier but that's just my thinking, I don't know. It might be a question to ask though. 

Hi ekimjo,

I have held back a bit in replying to you because I didn’t have a very positive experience with fluororocil, but I thought that it would be fair to explain my situation as it’s all part of the joys of chemotherapy! 
I also had a right hemicolectomy, in September last year. Because I had 2/44 infected lymph nodes, I was also offered chemo. My chemo was called CAPOX. It’s very similar chemically to yours, but a slightly different format. Instead of having fluororocil as an in infusion, you have a tablet called capecitabine. Your own body breaks the capecitabine down into fluororocil so you can take it daily at home. You will also be tested for something called a DPD gene. This is the gene that tells your body how to deal with the fluororocil. 
My problem came when, like around 2% of the population, it turned out I didn’t have the gene. They still give you the drug in these circumstances, but only half a dose and they do warn you that you have a higher risk of side effects. 
Everything with the oxalaplatin went to plan. 2 hours in hospital having the infusion, then back home to start taking the tablets. 
About 3 hours after taking them, the problem started. I was lying in bed and I felt a funny pain and I was uncomfortable. I sat up and then had the most vicious pain in my chest I could imagine. My husband and son came running in and found me crawling around on the floor making the most unholy noise they’d ever heard. Whole event lasted under 10 minutes, but I thought I was going to die!

Long story short, it took quite a while to work out what it was ( I was told to stop the tablets immediately), had another crack at taking them 3 weeks later but it happened again. It’s called aortic vasospasm. The blood vessels in my heart were in spasm, caused by the drug, and it mimics a heart attack. It’s extremely, extremely rare. My oncologist decided to stop all chemo (which I have mixed feelings about), but it seems that things are ok. 

I just wanted you to be aware that it doesn’t always go to plan, but my hospital chemo helpline, the cancer nurses , the oncology specialists and the ambulance staff and A and E staff were all phenomenal! You will be watched over very carefully and they will make sure it works out in the end. 

Take Care,

Nic

Thanks for this. I just find it helpful to hear of others experiences. Hope things keep going well for you. x

Sorry to hear of your awful experiences. I suppose we just have to take the professonal advice, weigh up the odds and hòpe for the best.  Wishing you well going forward x