New to group - lymph node too close to artery to operate, any CAPOX & immunotherapy guidance?

My dad had 6 cycles of capox. My biggest thing to warn you about was the cold, especially this weather. Please make sure you wrap a scarf around your face and have a hot drink at the ready. The oxaliplatin can cause chest tightness. My dad described it like a panic attack. It was very scary to watch, I'm unsure if everyone has this side effects but my dad definitely did. It can cause also severe diarrhoea and nausea, fatigue and aches and pains. 

I'm sorry if this makes you even more scared but on this forum we try to be honest with what to expect. I'm sure I've read others having capox on here and not reacting as bad. I think my dad had the raw end of the deal! 

Please think though what it can do and that will get you through. If it works and it shrinks that is the aim. 

If possible, have someone take you and pick you up.

If you want to ask me anymore questions please don't hesitate. 

I wish you the best of luck.

Kayleigh. 

I'm so sorry you are on this horrendous journey. Try to keep strong and have hope. 

Kayleigh x

• Many thanks Kayleigh. I was told about the cold thing not the diarrhoea something else to look forward to. I'm taking probiotic tablets vit d turmeric and soursop graviola along with general vitamin tablets and cbd oil to try and stay as healthy as i can. Going to be a tough few months ahead. 
• If there is any other supplements that your dad had to help reduce the side affects please feel free to share.

May thanks and best wishes T

Hiya 
My husband is on Capox and Pembro (immunotherapy)

He had his 2nd round today 

His side effects have been Temp blindness (after rubbing eyes ) 

First bite (pain on first bite of food ) 

sensitive to cold ( easily managed)

First round wasn't so bad (even had an infection and was hospitalised for 4 days ) 

He's back to doing anything he was before just about . Looks amazing too . Different story in December 

Tiff x

Soursop fruit and cbd oil for my husband 

Just got back after first session cold hands pins and needles type and the first bite thing aswell. Just got the shits to go and I think I've ticked all the boxes. 

Many thanks for the heads up and hope all is going well with your husband.

T

Hello T. Have you asked about clinical trials? There's one for people on CAPOX and Nivolumab called Fortitude. Excuse my ignorance but are the probiotics 'live'? My husband was advised to steer clear of anything with live cultures like probiotic yogurt and stuff like cheese with unpasteurised milk, pâté, etc.

Will look into the trials thanks. The pro biotics are live tablets just to help with healthy digestion. Have been prescribed the fortisip drinks as a backup but mainly eating soups, protein shakes lky not loosing much weight at the moment. Hope all is OK with your husband.

If there’s any chance of a trial then take it. In my case possibly a life saver. On my 10th cycle of Folfox now - minus the oxaliplatin. Still have minor neuropathy in fingertips and appetite loss but otherwise fine. Best of luck! 

Thank you, my husband is doing well. He is on FOLFOX and Nivolumab, which is shrinking the tumours. He's on the Fortitide trial too so being very closely monitored. Tumours have all shrunk so far. He had a bit of constipation with the first couple of rounds but nothing major. His main side effects are mucositis, neuropathy for about 3 days each cycle and fatigue. His hair growth has slowed but he hasn't lost it. Another forum user, Lowedal, wrote about her husband using turkey tail mushrooms as an alternative remedy. He's over 4 years since initial diagnosis.

I hope your treatment is as effective as Rod's has been so far.