Enhertu treatment and quality of life

Thank you for sharing this …. The NP tried to downplay the bladder issues in my case; but they are rough … this info helps me see that I’m not alone. My urologist prescribed a stronger med - ferosterodine - that is more effective against the bladder overactivity caused by ENHERTU. I also have a urinary stent from my right kidney to bladder; this does not help matters! Take care!

@margitdill Hi I too am on Enhertu. I'm having my 11th treatment tomorrow...I've increased the time between treatments from every 3 weeks to 4 weeks because I don't like feeling poorly. I am fortuante to be tolerating it pretty well, no nausea though appetite is not great for about 10 days, bladder control is definitely not as good as it once was, bowels ok, fatigue only in the afternoon on day 4and 5..... I have a very active lifestyle and for the most part I have been able to keep up with my pilates and pickleball. After 14 days I feel 100% like myself...so I have 2 weeks of feeling great. I was losing a lot of hair, but that seems to have stopped, which I am happy about because I have short hair and can't afford to lose morewwithout looking like I need a wig! My nest scan is in February so hopefully it will be NED and increasing the treatments to 4 weeks will not have had a negative effect. If all is good in February, I may decrease the dose as well.....I'm told that treatment with Enhertu had no end date...so if I am going to be continuing, I'd like more time feeling good ! I'm also told that if Enhertu stops working there are other drugs ??? I remain optimistic and hope only good results for us all !!!!!!!

@alohman08 My oncologist suggested immunotherapy after ENHERTU. Didn't mention which kind, probably because it is too early to tell--I practically NED, save one lymph node that is now stable. It all depends on the final outcome of the treatment.
My hair feel out too, but has been growing back.. It's like baby's hair, very fine, but white and not full. Still wear caps and wigs, cause my head gets cold.
Appetite is ok but feel sick after eating. I feel it in my upper GI tract so I believe that is caused by slow stomach emptying--motility issues. I've been struggling with this for almost a year..

@cookercooker I understand..it certainly isn't fun not feeling well but if it's for a fairly short period of time and it keeps cancer at bay...I'll deal with it...What is your cancer diagnosis ? and when were you diagnosed?

@alohman08 I have serous cell endometrial cancer stage IIIC, diagnosed October 2023. Enhertu is the second chemo treatment, which started February 2025.

My diagnosis is uterine serous carcinoma which I believe is the same as yours.. aggressive and rare .. were your scans clean after your first round of chemo? How long after the first chemo did you start Enhertu ? I was good for about 18 months from the time of my last chemo round. I was diagnosed with stage 1A ... in 2021.

@alohman08 No, my scans weren't clear. However, CA 125 normalized, and 19-9 and 15-3 dropped a bit. Recurrence was four months after the end of the platinum-taxol regime. I started enhertu about 10 months after that.

@cookercooker it sounds like your cancer is responding well to Enhertu. Why is your doctor discussing what treatment will come after Enhertu ? My hope is that I will be cancer free for a very long time being treated with Enhertu...During my telemed conversation today, my doctor talked about decreasing the dose if I want to. She feels that I am responding so well to every 4 weeks decreasing the dose shouldn't change the efficacy of the drug. I'm going to wait until I get the results from my next PET Scan in February before making any changes. As far as what drug would come after Enhertu...who knows what will be the best available new therapy..there are new trials and research is ongoing, perhaps a drug that we know nothing about today ! Have to stay positive and grateful ...one day at a time !

@alohman08 I am responding well, better than they expected by the way they were soo delighted. They want to make me a "poster child". Hehe.
I had asked the doctor what comes next in case enhertu stops working.

@cookercooker Poster child ! very nice....glad it's working well and hopefully will continue working for a very long time !