Immunotherapy side effects

Hi Cindy, I'm sure that's the last thing you wanted to hear.  Surely they just can't leave you like this!?  Could you not be given another type of steroid to try?

If you're anything like me then it's made a massive difference to the quality of my life and the thought of it not ever going away is devastating.  

I'm still waiting for appointment for GI but I have an appointment to see a dietician on the 15/08 as I'm still living on rice, chicken, banana, porridge and white bread 4 months on as I can't tolerate anything else without spending the night waking to use the loo!! 

I'll keep you updated and thanks for letting me know what you were told. 

Bella

Hi Bella, please report back after your dietitian appointment. I would love to know what is recommended. This is the first summer I’m not enjoying fresh produce because of the difficulty digesting it.

PS my doctor didn’t want to put me on steroids again. So today I started loperamide again and may just take one daily to get control. 
all the best to you!

I will do. Take care xx

Hey Cindy, how's things with you?

Just an update on the dietician appt: as I've had no diagnosis she recommended that I stuck with the chicken, rice and white bread diet but to incorporate more high calorie snacks such as cheese and crackers and a glass of milk as snacks. She recommended that I stay clear of fruit and vegetables as it seems to be a trigger to worsen symptoms. Seeing dietician again in November.

I had a colonoscopy last week which was normal and they have taken biopsies so will hopefully have results in the next couple of weeks. I'm also having a bile acid test and had bloods taken. 

Take care 

Bella x

Hi Bella, I'm glad the colonoscopy was normal and I hope the bx were too.  

In the last 4 weeks, I have not needed any Imodium, no severe diarrhea, had no more nausea, and have gained two pounds. I still limit fiber but would love to experiment and start including more if my gut cooperates. Still a delicate balance. This life! Well, we are alive and kicking anyway! As gut getting better, my joints have increased in acheyness. So, I feel there is still an inflammatory state going on inside this body. This medicine if powerful, and it had to be to get rid of the cancer. 

All the best to you!

Cindy