Chemo Choices

Hi Treatment Experiewnce Can you tell us a bit more about which chemo so we can help? I presume the tablets are capecitabine? Is she having those alone or along with an iv infusion of oxaliplatin (Capox/xelox)? Is the iv for 6 months folfox?

Sorry for the lack of information Karen. Your guesses are good! The 3 month tablet option is capecitabine which is taken twice a day for 2 weeks, then a free week before the next round of treatment. There is also oxaliplatin given on Day 1.

The six month IV option is Folfox.

Hi Treatment Experiewnce It’s very hard to predict how your wife will react to the chemo as everyone reacts differently. You could try typing some of the keywords like folfox in the search box at the top of the screen and have a look at some of the previous posts? A lot of people have Capox/xelox and Ive attached a link to a post that we did with some top tips on

 CHEMO TOP TIPS UPDATED 

I had Capox back in 2016/17 but has a rather active stoma at the time so it was difficult to tell if the chemo was having a diarrhoea effect. 
Hopefully sone of the people who’ve had folfox will be along shortly with their experience. RNE and Spider56 can you help please? x

This is great. Many thanks. I will work on your tips with my wife.

Such a quick response too!

Treatment Experiewnce 

Hi my husband is due to have his 8th cycle of FOLFOX tomorrow, he's not had too many side effects, the main one is the neuropathy which the oncology team have been monitoring weekly,  and have reduce the dosage of Oxaliplatin to reduce this and it seems to have helped, he also has acupuncture every 2 weeks which was recommended to him.

I can recommend Udderly Smooth (from Amazon) to help with dry skin, he has used it everyday from the start, I also recommended it to someone who was really struggling with dry cracked skin and it's had amazing results.

He suffers with tiredness especially from the day he has his pump removed (on Sunday) for a few days.

He's not had any issues with his stoma output but he didn't have any problems prior to the cancer.

I know everyone's reaction to chemo is different but from my husband experience it has been minimal and well monitored by the oncology team.

I've kept a diary on my profile, if you want to have a look.

I wish you and your wife all the best, if you want to message me please do, happy to help in any way I can.

Nancy x

That's great to know. Thanks Nancy. I can't wait until my wife is at the back end of her treatment! I wish you both lots of luck in the future.

I will look to try the Amazon product and look into acupuncture. I had not heard of that link before.

Many thanks for sharing you experience with me/us.

Hi

I had 12 cycles of IV FOLFOX from Jan-Jul 2022 via a PICC line. I had no problems with the PICC line and the local IV team looked after me really well.

Cold sensitivity lasted for about four days per cycle and was manageable. I do still suffer slughtly with periperal neuropathy to hands and feet, this is despite having a dose reduction to Oxaliplatin after cycle 5 and stopping it after cycle 9. The last 3 cycles were 5fu only. Do tell your chemo team as soon as neuropathy symptoms start so they can adjust doses. They always start on the maximum dose possible.

I did not lose my appetite or feel unduly nauseus. My main side-effect was a cummulative increase in fatigue. Towards the end it took me an hour to recover from a ten minute shower. After cycle 12 the fatigue reduced daily, and after six weeks my energy levels were back to normal.

As others have said folfox chemo affects people differently. In my case it was a challenge, but doable.

That's really useful. I am starting to build up a good picture now of the type of symptoms people are having. Thank you for taking the time to give me your experiences. Hope you are feeling great now!

Hi, Treatment Experiewnce I had 30 weeks of IV 5FU/LA as my treatment, so happy to say how I got on if this becomes your wife's option. All the best

Many thanks. We need to make our (her!) mind up over the next couple of weeks. We are seeing her consultant on the 13th.