My husband finished his 6th and hopefully last cycle of this same regiment. 5th and 6th were really tough. He was fine before. He has similar symptoms as yours and if you read up on possible side effects it is all very much "normal". My husband has a lot of neuropathy, nausea with vomiting sensation and dizziness. He struggled coming home he kept asking me to drive slow cos he felt like throwing up.

He is on 3 + 3 capcitabine but I think this goes as per body weight. He is 85 kgs. 

He can't eat any solid food for few days as his yaw hurts ‍♀️ so it's mashed potatoes with various sauces and soft food only. Last time he struggled taking tablets and gagged every time he saw tablet. 

We hope he never have to have another chemo. He is scheduled for APR surgery after 3 weeks. 

Hi Lucullan!

Yes what your husband was going through is very similar to mine. He has been feeling dizzy and his vision is slightly blurred so he needs to wear glasses permanently for now. His body weight is 134kd so this is maybe why they thought he could tolerate the 5 and 5 capecitabine and upped the Oxaliplatin infusion so it may be a case they may need to reduce it again to 4 and 4. I wouldn't want to see him go without any treatment as he has done so well with the first 3 it was just No4 that knocked him for six and they upped the dosage at cycle 3 and he went through that with no problems. The only problems he did have were the neuropathy in his fingers and toes but his mobility has taken a back step just when he was starting to gain confidence in his walking again after his operation. I don't know how many cycles of chemo he is down for but as I said they were slightly unsure last time if No4 was his last. We'll find out on Thursday this week. 

Ok, yes they usually prescribe it in 4 - 6 cycles. When we had a bad 5th one we also thought to just say we have enough but he recovered well in week 3 and though we dreaded the 6th cycle, he went ahead and did it. 

After initial surgery your husband had no chemo?

No he didn't have any chemo after his surgery. I asked about this at his follow up appointment after surgery and the oncologist said it wasn't necessary at the time because they had apparently got it all and margins round about it were clear. But 5/6 months down the line it was back and I just wonder at the time if they had given him a course of chemotherapy after surgery would he be where we are now and I am a bit angry about that.  They did it for my sister 3 years ago when she got breast cancer they found hers very early so she was able to go in for surgery and then had a course of radiotherapy more or less directly after it. She has been taking Tamoxifen the last 4 years and having regular mamograms and has since been clear so I assumed they would do something simiar for my husband. 

It's actually standard of care to remove it and clear margins give them confidence - it's easy to judge once the deed is done but the fact is that they simply don't know and have no way of knowing. That is what is hardest to accept about cancer. We hardly made any progress. 

It's unfortunate that it came back but surely it was caught early and they will use all their guns. He will surely need another surgery too as they have no way of killing all the cells hence resection. 

I really don't know if he would be up for more surgery. He has a hernia on the site of his stoma and the stoma nurse suggested that he go and get the operation to push it back in but he doesn't want it. He usually leaves decisions to me and won't do anything until I have the last `say so` but this time it seems he's deciding for himself. In the end up though it's his decision and his body. He says he is going here for his appointment with an `open mind` to see what they say. I don't know what he means about that well I sort of do but after 36 years of marriage sometimes I still don't know what is going on in his head:shocked: I was at the GP this morning with him as he gets bloods taken pre-chemo I think this is just to find out how he is and if its possible for him to have chemo this time this has been the routine right through and so now my mind is going into overdrive again that they will find something in his blood tests. His blood tests have been good right through his chemo treatment but because he has felt really ill since this last cycle, I'm worried they will find something else now. His appetite has picked up slightly and he actually had a bowl of cereal for breakfast this morning got up and said he felt like having a bowl of cereal which is something he hasn't done for the past 2 weeks. He also had sausage and black pudding for lunch and said he really enjoyed it so hopefully he is beginning to rally round again. Just hope and pray that we get good feedback tomorrow at our appointment.

Good to hear his appetite is back. My husband also bounced back amazingly overnight! I can no longer claim the 6th cycle was tough. Yay!

Oh, so he has a stoma. This is the scenario that I fear most. That we get stoma and then cancer comes back and one would wonder why the heck stoma was needed if it came back anyway. My husband will get a permanent one. And he took soooo long to start accepting the fact that there is no other way. 

I think my husband is younger and maybe taking it better. He just turned 50. We are married for 22 years, so your 36 tells me you might be a bit older then us :) Pardon me, if I am wrong. 

No you're fine Lulcullan!  I'm 60 in a few weeks time and James is 68. He's looking all his 68 years just now and more just looking like a `typical pensioner should however a pensioner should look` some still think they're 21:laugh: 

He manages his stoma well he got that in July last year and it's like 2nd nature to him now changing it just like changing a dirty nappy:laugh: only its from his tummy. It's been a really *** 2 years for us (pardon my french and the pun!).

Since he retired 3 years ago he has just not had a break health wise. He was firstly diagnosed with Type 2 Diabetes then we started to work on that going to the gym exercising and adopting a healthy eating plan. Then at the end of 2020 the cancer symptoms began to surface he was going to the loo more than normal and after colonoscopies, biopsies and CT/MRI scans he was officially diagnosed in July 2021 with a tumour in his bowel that had been dormant for the previous 4 years and not showing any symptoms until they began to surface. Operation for bowel resection in mid July 2021 stoma in place. Chemoradiation to reduce tumour to prepare for surgery January 2022 operation done got all cancer- or so they thought.

Follow up appointment in May blood tests done. Lettered 4 weeks later CEA markers risen sent for CT scan met up with surgeon in June for her to tell us cancer had unfortunately returned in the bowel lining again and think it may have metastasised. Met with oncologist who informed us there were `a few cancer spots on the bowel` which we read as it's there but not as extensive as first thought but had slightly metastasised and we are where we are now with the chemotherapy treatment.

Thought he may have needed  to have a stent fitted for his kidneys incase of any blockage but this is now not necessary. He had a telephone consultation with a urologist and it was just like a Q & A the urologist asked him how his toilet habits were (peeing) and he said he was ok and that he was taking in a lot of fluids and the urologist was quite satisfied with that for the fact he was peeing and said if he was having problems there they may have needed to insert a stent. He has slight scarring on one of his kidneys but they think that is due to the operation. He is a big chunky bloke and the surgeon said he was `a challenge` for her and her team but they love a challange and they got there.

His weight has gone down a lot because his eating patterns have changed and he no longer eats a full curry, pizza, indian etc (think these were his dowfall) he was the takeaway's best customer I think at one time and the type of work he done he ate at all different times of the day and night with working practically 24/7. Everyone likes a takeaway now and again but with James it was sometimes a 5 or 7 day occurance. So when he does, he eats smaller portions now because I think this is all his stomach can take. Still gets his takeaways but its only now and then.

His blood sugars have stablised also. After he came out of hospital after the operation his blood sugar hadn't been checked for months and his surgeon went off her head and I think went on and read the riot act with our GP surgery (still using Covid as an excuse not to see patients) and this resulted in him getting an extra tablet to take along with his Metformin which has worked he was supposed to be on this only for a limited time but as its doing him good he's getting kept on in indefinitely for now. So hopefully good things will come out of tomorrow. I hope and pray. 

Good luck! Do keep me posted. It's a relief to read about anyone who manages their stoma well. 

Hello VickyM21,

                         oh yes, the ideal of Capox is to throw the Cancer off the cliff, and the patient halfway down it,dangling on a thread ensuring they were given a good seeing too before throwing them over.

Seven years on l still vividly remember every single treatment,and yes round 5 and 6 are the ones that ensure you remember where you have been.

  This said it worked for me,stoma reversed,and the parting gift of neuropathy in my feet seems like a fair priceto pay for a fullfiling second life.

Stoicism coupled to a large degree of belligerant stupidity helps, l found not much else did,

                    safe journey,

                                          David