Chemo advice-capecitabine without oxaliplatin

Hi Hex 

It's a difficult question to answer but I try and share from my perspective in case it helps in any way.

When I was deciding about chemo I was swayed by the prognosis % change it could bring to my 5 year survival chances. I appreciate this may not be suitable to many as not everyone wants to know survival prognosis.

If I had my time again, I would also spend more time exploring the likely quality of life impacts to my own life priorities. We are all different, but you may want to consider impact of your different options on holistic things such as work, family responsibilities, hobbies, independence, travel, beliefs, etc.

Hello ,

I can only speak on my experience . I am a fit 42 male and I am currently towards the end of my treatment for stage 4 bowel cancer that had spread to the liver . My oncologist was very optimistic and told me my treatment  plan was for curative. I had 5 sessions of radiotherapy followed by 4 cycles of chemotherapy ( Oxaliplatin through the canella ) followed by 2 weeks of the Capecitabine tablets . Then week off and start cycle again . Then had bowel resection in December followed by liver section 3 weeks ago to remove all remaining tumours . For me the side affects consisted of nerve damage to fingers and toes ( still there but not as bad as it was at the start of each cycle ) nausea wasn’t too bad , it didn’t affect my appitite - if anything I was more hungry ! I did suffer from brain fog especially at the start of each cycle and then towards the end of the last cycle was pretty tired. On the whole though I was able to go about my day to day business ok and even worked through the majority fk the chemo - the only substantial time off has been for the surgeries 

for me at least , anything that increased my chances of shrinking the tumours (which it did ) I was willing to give it a go

it is a personal choice though and I understand your opinions on your treatment . 

Hi Hex,

 I’m not sure what type of cancer you have but CAPOX gives me an extra 8% chance of the cancer not reoccurring. I’m  43 years old and I decided to go ahead with CAPOX based on the fact that it could give me extra time with my children and I have to know that I’ve done everything possible to prevent reoccurrence. Oxaliplatin takes 2 1/2 hours to infuse at the hospital so not too long. I’m currently 9 days into my 3rd round and other than a possible reaction this time during the infusion (the nurse reacted quickly) and tiredness, I’ve not been too bad. 

Thank you for taking the time to reply and so glad youre doing well on the chemo.Good luck 

Thank you and keeping everything crossed for you it will be successful.

Hi Hex, I don’t recall being told what the ‘standard’ four rounds of Capox would do for survivability but distinctly remember being told that I could have up to eight rounds but the extra four rounds only increased survivability by 2.5%. Even at that level of benefit and before starting chemo I was determined to have all eight rounds. But chemo wasn’t easy, turns out I’m allergic to Capcetibine for starters! (More on my Profile page.) However, your care team will do all they can to minimise the side-effects, including changing dosages and chemo-drugs, although the side-effects cannot be mitigated in their entirity.

Best of luck.

Maninbath

Thank you 

Hi Hex

I wonder if you have reached a decision yet?

Following my left Hemicolectomy in May '19, I had no cancerous Lymph nodes; however, I did have EMVI - Extra mural Veinous invasion - near the site of my tumour.However, when I saw my Oncologist, she also mentioned the very low percentage rates for follow up chemo. (I think that she cited 12%.) She also went on to explain all the possible risks of undergoing chemo - which somewhat alarmed me.In conclusion, she was adamant that the surgeon's report & biopsy of my tumour removal, did not warrant chemo. of any kind. Obviously, I was very pleased about hearing that; & of course, I believed in her expertise in the field.

However, my daughter was somewhat concerned - & whilst at her GP appointment, raised the issue with her doctor, who said 'If that was me, I would definitely ask to have chemo.' It made me think for a while, but I felt fortunate in not having to undergo chemo, & just carried on with my life; continuing to have my six monthly checks & CT Scans. Unfortunately, during one of these (a year later,) It was discovered that I had two very small Lung Nodules in one Lobe.

I was then referred back to the same Oncologist, who this time recommed Capox for six months (to hopefully shrink the tumours,) to be followed by a lung ablation.

However, like yourself, I was terrified of the infusion side - particularly with the high possibility of developing Peripheral Neuropathy in hands & feet - particularly so, as I am a professional artist. On the day of my first hospital visit (for the infusion,) I literally broke down, telling the staff that I couldn't go through with it. Fortunately, the Oncologist agreed to see me, during her coffee break - where I explained to her my passion for painting, & that I felt that quality of life was more important than quantity of years. I also said to her that I was willing to just take the Capecitabine Tabs. which she somewhat reluctantly agreed to.

& so, it was determined that I would have six cycles of these. In my own experience, I had no side effects whatsoever, & so, the Oncologist kept upping the dosage, as my tolerance was so good. In the fifth cycle, I developed quite bad Palmar Plantar in my hands & feet, to the point where I could barely close my hands. It was then that she stopped the Tabs. & my CT scan showed that sufficient shrinkage had occured - which allowed me to have the lung ablation (in Oct. 2020.)

I am still being monitored wih follow up blood tests & CT scans, but these are now yearly checks.Obviously for everyone, these are very difficult times. However, my last scan was in Dec. 2023, & was clear.

I wish you all the best in making your decision.

Marianne x

Thank you so much for the response -I also had a left hemi and have EMVI.I haven't fully decided-Wed is D Day but I think I will go tablets only.My instincts are not to have the oxy like your experience I fear I will get in the chair and break down. I'm so glad you are doing well and you have really helped me x 

I know it sounds like you have already made your decision, and I just wanted to say well done. I was supposed to have 4 rounds of capox last year. After the second one my side effects were so bad that my oncologist withdrew the oxi completely. I then had two rounds of just capecitabine tablets. I had a partial response which enabled me to have surgery. Wishing you good luck.