CAPOX TREATMENT

Hi Angie

I didn't have CAPOX (capecitabine and oxaliplatin) I had capecitabine and cisplatin so the side effects will be different. I felt awful for the first week, it really was a matter of getting through one day at a time,  gradually started to feel better then had another cycle and felt rubbish again. Exhausted, nauseous but wasn't actually sick. Generally felt rubbish. But as I said, I didn't have oxaliplatin so can't comment on that as they're all different. 

Best thing Tony can do is rest. He can get through this. 

Big hugs to you all.

Amanda x 

Hi Angie, 

I was wondering how he is coping, everyone seems different. I’ve read some replies where some people still manage to work, where my husband has struggled for at least two weeks plus and as the chemo has gone on it seems to last the whole time even going into the next round. He had his 4th round on Monday, it’s initially the pins and needles in the hands, then dizzy, constant stomach ache, feeling sick, struggling to go toilet, swollen ankles, rashes, lethargic, sleeping for twelve hours and then up to three in the day.
It’s awful you feel useless/helpless but all you can do is be there. I’m sure you’re doing an amazing job being there and being supportive. 
I would love to say it gets easier but so far it hasn’t but everyone is different 

Sending love xx

Hi Blossom01

He has really suffered the last few days, last night he felt so dreadful he wanted to give up, he also has been sleeping a lot, had pins and needles in the hands, stomach ache, feeling sick and diarrhoea.

I do feel helpless and I get so upset to see him in so much pain but like you say all we can do is support them.

I just hope he picks up in the next few days.

How are you coping?

Love and hugs

Angie xx

I think the diarrhoea is the only thing he hasn’t had, we are going to the doctors tomorrow to see if we can get some slow release pain killer for his constant stomach ache, he has oramorth but that’s a quick hit and don’t help.

i think the one thing that is keeping me going is seeing the blood results at every chemo session and the difference. Maybe once Tony sees that it is helping him it may lift his spirits. 
I cannot imagine what they are going through. 
I am still working full time, I go to the gym which I class as my time, I talk about it all the time, it’s my life a rollercoaster of emotions, but I try to stay strong and positive even when it hurts. 

xx

Tony takes oramorth for the pain in his back but it doesn't always help him either, they did talk to us about slow release morphine but it never happened.

I can't imagine what they are going through either its a cruel disease

I work full time too, I go to work and have a good cry its good to let it out sometimes.

I have great family support which really helps and I try to stay positive.

We just have to take each day as it comes.

Take care

Angie xx

Hi A1972

i had 6 cycles of CAPOX treatment this time last year and had all the symptoms you describe except maybe the diarrhoea. All I can tell your husband is to keep going it will get better but it takes time. I was stage 4 with metastasis into a lymph node and my spine. After 3 cycles I had a CT scan and was told that the tumour had shrunk and there was now no evidence of cancer in my lymph node or spine, which was great news. At this time I was also told I had a high PDL-1 reading which made me eligible for immunotherapy as well as chemo. So, I am now on Pembrolizumab alone for 2 years and the tumour continues to shrink. 

The chemo has left me with neuropathy (pins and needles and numbness in hands and feet) but this is a small price to pay and I have recently noticed a reduction in the level of numbness so I am hoping that as the warmer weather comes things will improve and I can get back to doing some DIY and gardening.

During the chemo I was well aware that I was very tired (exhausted) and this made me frustrated and angry, off my food etc. etc.  consequently my wife had to put up with my ever changing moods and this all added to the problems. However we have both come through that awful time and things are looking up now. I may never be cured but I am more confident that I still have a life to live even it is with cancer.

Good luck and best wishes to both your husband and yourself. X

Hi old grey whistler,

Thank you for sharing what you went through whilst having treatment, it is a tough journey, so pleased to hear chemo worked really well for you, fingers crossed my husband has the same effect.

Was you not told about immunotherapy at the start of the treatment, my husband was told he was not suitable tested negative for it, I just wondered if things could change during treatment?

My husband has picked up a bit today but still has diarrhoea and stomach pain.

We know my husband can't be cured but we so hope that with treatment he can live with it too.

Take care 

Angie x 

Hi Angie

I was only eligible for immunotherapy because I had a high level (70%) of a protein called PDL-1 which was protecting the cancer cells from being destroyed. Pembrolizumab breaks down this protein and allows my own bodies T-cells to attack the cancer cells. There are risks though, in that, your normal cells also become vulnerable to attack. Fortunately, so far, I have had almost no side effects and (touch wood) I won’t have going forward.

Please keep in touch if you want to ask any further questions.

Colin

Hi Angie 

How is Tony getting on, is he still suffering badly. 
My husband is still suffering seems even worse if that’s even possible after the fourth round, he has been in bed the last couple of days. He has been dizzy, feels sick and stomach pains.
I often think of you knowing your going through this awful time as if everyone else. It’s the not being able to do anything that’s the worst 

xxx

Hi,

My dad is doing much better than he was. The first week was the worst and he started turning the corner on Friday which was day 9. He went out Saturday for some fresh air which was good. 

He been craving food bless him so been cooking him my omelettes with bacon and mushrooms and cheese in which he has loved, the taste of bacon he said was just lovely! 

He had a rough day again yesterday and the foods he ate for breakfast (which was the same as Sunday) for some reason didn't agree with him so set him back abit but today he been better and even made a trip to his work to just say hi! 

It's been a tough couple of weeks watching him suffer as we both have felt so helpless when he has felt so poorly! 

Luckily mom has been on holiday from work this week so been able to look after him and feed him up! We have another week to feed him up and hopefully get some strength back for his second treatment session next Thursday! 3 weeks as seemed to have flown by!

I'm so sorry to hear about your husband, it's just so awful to watch  loved ones feel so helpless. I hope your coping as best as you can. 

Thank you for asking about tony, I'm sure my mom will also reply back too.

Take care, Kayleigh x