Hi, my name is Vicki. I’m 39 and my husband was diagnosed in 2017 with advanced prostate cancer. Gleason 9. Spread to hip bones and shoulder at that time. He started the hormone therapy every 6 months for life, also had 6 sessions of docataxel (chemo) his psa went from 37 down to 0.5 in no time. Over the next few years he remained stable. Suffering the side affects from hormone therapy - hot flushes, fatigue, putting on weight etc. he managed these ok, it’s been tough but we’ve really made the most of him not working (he took early retirement) we have three boys who currently are 17,15,12 and we have tried to make lots of memories. Going on some lovely holidays watching his beloved Liverpool at Anfield a couple of times etc.
In sept 2020 my uncle was diagnosed with exactly the same, due to covid he had no chemo but they put him straight onto enzalutamide. They found having each other really helpful to talk to and joke to about their hot flushes and lack of sex drive etc!
In Feb last year they told my husband, Alan that he had been stable for a while and the psa was so low they would start doing his check ups 6 monthly (think this was also covid!) so in august he had his psa checked and it had started to rise, he also started getting some pain in his lower back and into his coccyx area. They scanned him and saw the cancer was now in his sacrum. So he started some radio therapy and also enzalutamide. He had to stay on these for 3 months each month his psa was rising and it rose by the end to 204. He was scanned again and there was a lot more bone mets. I also forgot to mention that in the summer when he was scanned they also found a second primary cancer not a secondary cancer, in his lungs. So he started a very intensive 3 week course of radio on that as well as the radio in his back. The radio made him feel so I’ll and sick. This was December 2021 when he finished this. We were called in on the 2nd and they said as the enzalutamide hadn’t worked they would start a new chemo. We had a 4 week wait though. On the same day my uncle was told he had 6 months to live and he died Xmas day, 3 weeks later, his prostate cancer as it had spread to liver and lungs, this has hit us all very hard especially my husband.
On Jan 4th he started chemo his psa in those 4 weeks of waiting had risen to 800! And it had spread to every vertebrae in his spine he’s now having real trouble walking and they’ve just given some more radio. They checked that it wasn’t presssing on the spinal cord it was close but it hadn’t. We are extremely worried he’s going to lose his ability to walk. He had his second chemo last week and the psa is now 2202! We are beyond worried sick, they have said the first chemo can make this happen but they said if it doesn’t come down on the next chemo( ;15th feb) then it may mean it’s not working and they will stop. Radium has been mentioned. I feel we are nearing the end of options and it’s been such a rapid decline. My husband is a bit older than me,55, and it never showed until now, he looks so frail and it’s heartbreaking seeing him in so much pain.He was always so fit and active. The palliative nurses from macmillan are working with us on his pain relief and he’s on a lot of meds, this makes him constipated so that’s been a trial and error working out his laxatives correctly!!.
We have a counsellor working with us from macmillan, the boys have declined at the moment but she will be with us As long as we need.
I’m a positive hopeful person usually but it’s starting to fade, I’m trying to be strong for everyone and do all I can at home, working eyc but I feel so stressed and worried. my boys are doing GCSEs and alevels in the summer if that wasn’t stressful enough.
looking for anyone in Similar situations. Xx
