Bowel cancer treatment and side effects

Stella 2020

Help, need some encouragement!

Hi everyone, I have started 2nd round of Xelox 4 days ago. Because my first round went really wonky after 5 days, I have to stop the chemo completely. Now I am really worried this same is going o happen again. The oncologist has reduced the dose by 20% so hopefully it is better tolerated.
I am just really anxious about the horrible side effects happens again, but more on have to stop the chemo half way. Because this is going to effects my prognosis and future treatment. I feel every day is like a week long. I know need to find courage and carry on, but just don’t know how. Any encouragements will be gratefully received. :x::x:

Dan-888
Quote from @kawa909:
Hi @Stella 2020 ... What anti nausea drugs do they offer you if you don’t mind me asking? I found the one I had immediately post op didn’t work for me so I switched to Ondansetron which I found much better so hoping this might be on the list of suitable ones for when I start chemo shortly.

Not sure if it was luck or because I revert to stem ginger, a traditional Chinese anti nausea and trauma ingredient, right from the start of my Radio-chemo therapy, that I never had any nausea. The steroids I was given for my chemo therapy made me aggressive and hyper and as I had no nausea, they withheld that after my very first cycle of a total of 12.
No idea why stem ginger works but it did for me.

Lucie

Interesting about the stem ginger @Dan-888 What form did you take it in? Are there stem ginger pills, or did you eat the raw product?

Dan-888

Hi @Lucie . I'm no chef, so it's just raw stem ginger, scrapped and finely sliced into a mug, add a couple of slices of lemon and perhaps a teaspoon of honey if I'm feeling flush. Add just boiled water to make a sort of tea.
Sliced stem ginger will also go into typically clear Chinese soups and rice gruel / congee. The later is a classic, post-op/birth/general recuperation dish to which you can add all sorts of ingredients for taste, colour and aroma.
It provided me with an excellent stepping-stone base for my post-reversal recovery.
Hmmm. Also a great comfort food for colder weather!!!
Better stop there!!!

Lucie

Thanks @Dan-888 That sounds much better - putting it into a soup or tea. I wasn’t fancying just munching away on some. 😆

kawa909

Thanks @Stella 2020 think Ondansetron is going to be part of my ‘package’ but waiting for confirmation now that I know I’m doing 3m CAPOX.

@Dan-888 @Lucie interesting re the ginger as have seen a few bits of research supporting this. I have a stash of crystallised stem ginger cubes in the cupboard so thinking a few of those each day might be a good idea.

Dan-888
Quote from @kawa909: @Lucie
interesting re the ginger as have seen a few bits of research supporting this. I have a stash of crystallised stem ginger cubes in the cupboard so thinking a few of those each day might be a good idea.

I don't know much except the Chinese equivalent of chicken soup is rice gruel - cures anything according to grandma! :D :D :D
Not sure but aren't those ginger cubes soaked and coated in crystallised sugar? More like sweets?
I've never tried chewing on stem ginger! :) It does make a great tea, if you're used to green teas rather than just Indian tea with milk and sugar. (lots of sugar ... )
I only know from past experience, when feeling nauseous but not during cancer treatments stem ginger really works for me, either as a tea or in food.

kawa909

@Dan-888 Yep they are kind of like ginger sweets, I use them in baking sometimes but also like eating them as they are. Stem ginger in syrup is something else I really like so might be another option plus ginger tea.

Dan-888

I've stopped having any sugar, more to try and lose weight (big fail) than from any belief that it feeds an cancerous growth. What has kept me away from sugar is its direct connection to slavery; must stop there!

Stella 2020

I bought some pickled ginger that normally accompany sushi. They are quite nice too. I prefer salted plums ( Chinese food hubby think it is a dog treat 🤬). I think generally anything quite sharp works well.

kawa909

@Stella 2020 how long after the end of the oxaliplatin infusion did it take for you to start feeling any side effects? Did they start whilst you were actually having the infusion or a bit later in the day?

Stella 2020
Quote from @kawa909:
@Stella 2020 how long after the end of the oxaliplatin infusion did it take for you to start feeling any side effects? Did they start whilst you were actually having the infusion or a bit later in the day?

Hi my arm started to tingle half way through the infusion. I also developed heart palpitations towards the end too(very uncommon side effects). So by the end of the infusion, you will have the full effect, the steroids tablets they give you will keep it at bay 🤞

kawa909

Thanks @Stella 2020 lucky I’m not driving home then!

Stella 2020
Quote from @kawa909:
Thanks @Stella 2020 lucky I’m not driving home then!

I would get someone to pick you up after the first round and see how you feel. I know people who actually run back home(2 miles). Not me!

kawa909

@Stella 2020 yep that’s what I’ve got organised for cycle one though the run there and /or home sounds tempting as only a few miles away I think (it’s not my usual hospital because of Covid). Maybe cycle two then! Though also depends I guess on any requirements pre infusion - do you have to fast and / or not drink anything for a particular time period beforehand?

Stella 2020
Quote from @kawa909:
@Stella 2020 yep that’s what I’ve got organised for cycle one though the run there and /or home sounds tempting as only a few miles away I think (it’s not my usual hospital because of Covid). Maybe cycle two then! Though also depends I guess on any requirements pre infusion - do you have to fast and / or not drink anything for a particular time period beforehand?

Hi I don’t do anything special. But my infusion is over the lunch time so I make myself some lunch and a flask with warm drink. The clinic provides sandwich etc but I prefer my own.

acrorat

Even if I didn't live 18 miles from the hospital there is no way I could have run home lol... mind you, I am not a runner, I am built more for walking or rolling lol.

I took a cold drink with me although now knowing how that affects me I think I will take a hot flask of ribena next time.

I didn't take food but then again we all wear masks and i felt a bit of a revel just removing mine to drink my coffee they made me lol.

Lucie

@kawa909 @Dan-888 @Stella 2020 @acrorat. I also have some crystallised stem ginger in the cupboard that I’ve used for baking. Quite yummy, so I think I might tuck into these when my chemo starts. I will definitely not be running to the hospital (about 20 miles!). I finally have a date for my oncology appointment. This coming Thursday!

acrorat

Great news @Lucie for your appointment, that is not too long to wait :x::x:

Lucie

Thanks @acrorat Yes, I’m actually looking forward to the appointment. I’ve got lots of questions.

different

@Fiji this is a very late reply but I didn't have any mutations show up in DPD testing. Of course, they can't/don't test for all possibilities and there are no guarantees, but the most common deficiencies were ruled out.