The news we didn’t want

Hi there. Sorry to hear that your Dad's cancer has spread, when he had been doing so well to fight it off. Just to let you know that my husband is on Capox/Xelox for inoperable oesophageal cancer (which has spread). He was diagnosed in December and started treatment late Jan 2022. We are coming up to his 5th round of 6-8 cycles. His cancer is now described as 'stable' and we are pushing on with the 2nd half of his treatment. The side effects have been uncomfortable and unpleasant at times, especially sensitivity to the cold, but they are manageable. He has been able to eat normally again since Round 1 and has continued to work from home 3 days a week throughout the treatment. I don't think the statistics you were given are helpful. We continue to hope that we can beat this thing. We are not giving up and your Dad shouldn't either. I hope and pray it works for him. Happy to share with you our various strategies for dealing with the side effects and not allowing them to get the upper hand. Stay on top!

All the best.

M

Hi M, 

Thank you so much for your reply it really is the beacon of hope that I needed! I am so glad to hear that your husband is responding well to the treatment and glad to hear that you aren't giving up. We are also trying to remain positive and my dad is determined to fight this for as long as he can as well, so fingers crossed for the treatment! 

If you are able to share your strategies for coping with the side effects that would be brilliant thank you, as we really aren't sure what to expect but from the leaflets he was given it sounds like he is in for one hell of a time.

Thank you again for your reply and I hope your husband continues to respond well to his treatment! 

A x

Hi A

So glad to hear your Dad is going to give Xelox his best shot. Forewarned is forearmed so I hope he might be able to benefit from our steep learning curve, finding ways to beat the side effects. So here goes:-

i) Buy an all-singing, all-dancing digital thermometer which you only have to point to the forehead to get a reading. He will have to take his temperature at least two or three times a day, so make it handy and easy

ii) Side effects are different for everybody but it is well-known that Oxalyplatin causes sensitivity to the cold (peripheral neuropathy) and this has been by far the most challenging side effect for Mark. It has also got progressively worse from one cycle to the next, although it does wear off over time.

- Take a warm hat, scarf and gloves to the hospital and have warm slippers at home (I bought sheepskin moccasins). Put mats down on the bathroom floor and have the house warm when he gets home..

- If possible, buy deluxe silver-thread gloves from the Raynauds Disease website, together with the HotRox double-sided hand-warmer. These were a game-changer for Mark. Link is: https://www.raynaudsdisease.com/hotrox-double-sided-electronic-hand-warmer-and-raynauds-disease-deluxe-silver-gloves-bundle.html

Absolutely brilliant. Can use computer, mob phone and do all daily tasks with these on

- Get some motorcycle face-coverings which can be worn round the neck and pulled up over the nose and mouth (and ears) if outside in the cold or wind

- Warm all cold drinks up by adding hot water, standing in hot water or microwaving. Mark found drinking hot water soothing (a mix of 50% tap water + 50% water from the kettle) so we always take a small flask of it for the journey home from hospital and have it by the bed at night. At least for the first 5-7 days after treatment.

- Buy a wheat pack from eg. Superdrug. This can be warmed up in the microwave and laid on the arm after the IV treatment. It helps to relieve the arm soreness, especially on Day 1.

iii) Digestive issues are common because the treatment tends to affect the stomach lining. Mark takes kefir daily, probiotics and actimel (has to be at room temperature). Also plenty of super juices (Aldi do some great ones).

iv) Always take the Capeticebine pills after food. We found having some fruit beforehand (banana, stewed apple, apricots) worked well.

v) The most unexpected side-effect after Cycle 1 & 2 was hiccups. Sounds mild but it was very uncomfortable as they were quite constant even at night.The anti-nausea drug Domperidone really helped suppress them and Mark took these for the first 2 weeks in both Cycle 1&2 but after that, he was able to control them without drugs. 

We have been lucky that Mark has not suffered from severe fatigue, nausea, skin dryness or gum problems. He has also not lost his hair, which is a bonus. He has kept up with his work from home 3 days a week and walks the dog regularly (walks can't be too strenuous though). It's been a tough journey so far, but not impossible.

Please contact me if you want to ask me anything else as you go. If I can help, I will.

I wish you and your Dad all the very best.

M

This is very helpful my dad is about to start his treatment next week on Wednesday, and it's helpful to hear those tips, yes everyone is different but it does help to have light shared especially as all of this can be very overwhelming and unknown. Thank you