My husband was diagnosed with Stage IV bladder cancer just over 3 years ago. He made it through chemo (gem-cis) and radiotherapy to consolidate the good progress made - complete response. But 4 months later it was clear that the metastases were back (small but there and slowly growing) - the bladder remained clear. Immunotherapy didn't work but then he got onto a clinical trial - sacituzumab govitecan-hziy - which he managed to tolerate for over a year and it kept everything stable with 11% shrinkage. He was able to do so much while on the trial it was wonderful.
However since the beginning of the year, things have been really bad. He had to come off the trial in January 2023 because of the toxicity. Low red blood counts and more recently very low platelets (WBC and neutrophils all OK). He has been increasingly fatigued - I mean really fatigued. Then in March 2023 he had two emergency admissions to hospital - the second with sceptic shock. They think it was either a respiratory infection (he has lung metastases) or a urinary infection. Amazing hospital care in ICU saved him and he has been home now for 2 weeks. But he is SO exhausted (he says it now feels like exhaustion rather than fatigue) and is losing weight, although he is eating.
It's the worst he has been since diagnosis and I just don't know how to help him. This week he has so many tests coming up - bloods, an echocardiogram, and then a big PET scan. I just hope he has the strength to get to all the appointments. I suppose we'll know more after all that. But right now he is lying in bed and so weak. It's just not like him. I'm doing all I can to be positive and supportive but inside I am really scared.
If you have had similar experience - or just have time to reach out as a fellow patient or carer - it would mean a lot. I don't want to overload our family with my worries too often.
Many thanks
