Stage IV UTUC / EV-Pembro / Nephroureterectomy: Advice For Caregivers?

Posted by jsbsmith @jsbsmith, Feb 10 7:06pm

Hi everyone,

My otherwise vibrant and independent 80 year old mother was recently diagnosed with Stage IV (cTX, cN2, cM0) urothelial carcinoma of the left renal pelvis and ureter.

Her treatment plan is four cycles of EV - pembro, followed by a nephroureterectomy. We are approaching the end of her first EV - pembro cycle. Side effects so far have been manageable: fatigue, taste changes, sore mouth, some itching in the upper back but I know this can change day-to-day, and cycle-to-cycle.

Although my mother was living in the rural US northeast (where I grew up) when we initially received the diagnosis, I quickly sorted out an oncologist who specializes in UTUC at a leading academic institution / NCI-Designated Comprehensive Cancer Center that happens to be 10 minutes from my house (on the west coast). So my mother has temporarily moved in with us while being treated there. We are very fortunate to have both the space (spare bedroom) and time (coincidentally, I semi-retired a year ago) to properly support her.

For those who've been on this kind of journey, what do you wish your caregivers knew in terms of how best to support you? What specifically did your caregivers do that you found particularly helpful? What was NOT helpful, even if it was well-meaning? If being an effective advocate was part of how they supported you, what made them effective?

Thank you, in advance!

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 21 1:42pm

Hi @jsbsmith, I added your question to the caregivers group as well as the bladder cancer group. I'm also tagging a few caregivers who can offer tips that have helped them. Additionally, here are a few related discussions that might interest you.

- Anyone dealing with UTUC (Upper Tract Urothelial Carcinoma)? https://connect.mayoclinic.org/discussion/anyone-dealing-with-utuc/

- Positive For High-Grade Urothelial Carcinoma on Urine Test https://connect.mayoclinic.org/discussion/positive-for-high-grade-urotheliel-carcinoma-on-husbands-urine-test/

- Any EV-Pembro (enfortumab vedotin and pembrolizumab) experiences? https://connect.mayoclinic.org/discussion/ev-pembro-combined-treatment-experiences/

This discussion is in a different cancer group, but has some useful caregiver tips.
- How can I be a supportive caregiver? HPV Squamous Cell Carcinoma https://connect.mayoclinic.org/discussion/diagnosis-and-discussions/

Your mother must be so grateful that you were able to move her out to you and have access to a top cancer center. How is she doing on treatment? How are you doing?

Sue, Volunteer Mentor | @sepdvm | Feb 23 10:14am

Hello @jsbsmith. You certainly have started this battle well for your mom with specialists and great home care with you. I was primary caregiver for my husband's multiple surgeries starting with partial cystectomy, then radical cystectomy with neobladder, ureteral repairs, nephrostomy tubes, incisional hernia repairs.......it has been a journey. All surgeries at Mayo MN and Pembro and chemo infusions at home in Ohio. He is not on Connect, but I have tried to share our experiences and helpful suggestions along the way since we have been going to Mayo for 13 years for my cancer.
The best thing we did, but did not prepare in advance, was purchase a lift chair recliner. He lived in it and continues to use it daily. Not all surgeries were minimally invasive and getting up from low furniture is tough. A firm side rail on the bed is also very helpful for turning over at night and getting up. He also lost food tastes so every day it was a discussion about what sounds good to fix or pick up. This was all during Covid so lots of takeout available. Fixing the same old foods that still tasted good kept him eating. Roasted stuffed chicken with gravy and mashed potatoes was a regular! I had to do a lot of bandage changes and taking care of skin health is very important. Be slow and patient as old skin is so fragile. Adhesive removers are so helpful. I tend to take charge too much, but for some decisions you just have to. Try for more suggestions and hints, rather than telling her what to do. Reminders of what the doctor's instructions say because they don't remember much about discharge if on pain medication. And maybe most important for us was to not hover constantly. Some alone time is healthy for both of you. You must make time for the caregiver's health mentally and physically to do your best job.

jsbsmith | @jsbsmith | Feb 28 5:05pm

In reply to @sepdvm "Hello @jsbsmith. You certainly have started this battle well for your mom with specialists and great..." + (show)

@sepdvm thanks so much for your reply. What a journey you've been on, supporting your husband! It is super helpful to hear about your experience, and I greatly appreciate your advice.

jsbsmith | @jsbsmith | Feb 28 5:11pm

In reply to @colleenyoung "Hi @jsbsmith, I added your question to the caregivers group as well as the bladder cancer..." + (show)

Hello @colleenyoung, thank you for cross-posting to the Caregivers group. I wasn't aware of it, and just took some time to get familiar with it.

Thanks for asking how my mother and I are doing. My mother just completed the second / Day 8 infusion of her second EV-pembro cycle. Starting to really shed hair, some skin rash and itching ... but labs continue to look good and all of the side effects remain manageable. I am OK too.

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