Chemo Decision: Treatment causing debilitating mouth sores

Well... this all sucks no doubt. But... to do nothing simply means his EC will take his life... There is no doubt about that. So... I suppose it is the lesser of two evils... to give him a chance. Any immunotherapy being used... or discussed? Is he getting Folfox? Capox? FLOT?

He is getting Keytruda and Cisplatin...then it's the Adrucil that is the 5 day trouble maker

@scared2017, what a difficult choice. You may find the tips from other members helpful in this related discussion:

- Mouth Sores from chemo: When do they go away?
https://connect.mayoclinic.org/discussion/mouth-sores/
@lori57216 may have additional tips.

@scared2017, it sounds like treatment is particularly hard on your husband's heart, which tipped me off to let you know about cardio-oncology.

Mayo Clinic offers expertise in addressing heart problems (called cardio-oncology), potential or current issues. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

Might they have a cardio-oncology specialist where you receive care?

My husband also stage 4 developed mouth and throat sores after his first round of chemo, a 96 hour infusion with the pump (this was in 2018 and I think the drugs were cisplatin and 5-FU). Even with the feeding tube in place, he could not keep up with the nutrition. He couldn't even lay still, just couldn't get a handle on it. He ended up in the hospital for a week for hydration and pain control. Those first few weeks were rough. Magic Mouthwash definitely helped but it took awhile to resolve. He didn't want to try any chemo again. He agreed to a reduced dose of 60% with a different regimen of drugs and did better with that. After 2.5 years he went into remission which lasted almost 4 years before his current recurrence.

How old is your husband and how is his status overall? How are you doing trying to manage everything? I felt so much fear each time we switched regimens - 3 different combos- each time he got the mouth sores, but as he got stronger physically he was better able to tolerate them. Hang in there. All the best to both of you ❤️

Thank you for your message. I totally understand what you went through. Yes 5 fu is the one that caused all the issues. It is hard for me...the medical system is so hard to navigate....it's not what the patient needs it availability.
We have another appointment with the oncologist Monday, tomorrow. I know he wants to add 5fu back in. It scares us. He doesn't want to go to the next regime because there's only so many and he has just started.
My husband is 73 with 24 years of heart disease....

It's a very discouraging position to be in. Do you have a nurse navigator available to you? Invaluable in terms of managing the medical side, and more.

I know this may seem odd...but we have all these groups, palliative care, etc...
wanting to know our psychological status, but no one seems to want to be the medical advocate.
We get sent to ER or Urgent Care a lot!

I had the same problem and lost nearly 30 pounds from not being able to eat. I ordered this powder on Amazon called healios and it seemed to help along with salt water.

@jdavis983, welcome. Have you completed treatment now?