Question for wise ones!!
Please note, I have copied this across from the private group as I only had one response so thought I'd post it here too! :smile:
Hi there everyone,
Merry Xmas, happy new year and all that jazz!
I've got a couple of questions and thought I'd head straight to the experts!
I was diagnosed with metastatic bc (bones only) in December 2018 and put on Kisqali & Letrozole/Anastrozole since then.
In December 2021, it was discovered I had a few more lesions in ribs so I did a clinical trial to "radiate the shit" out of the pesky ones to hopefully remain on Kisqali for longer. Unfortunately, when rescanned in May this year it was discovered that the radiation had worked on those spots but I still had pesky new tumours forming. So after 40 rounds of kisqali, I had to find a new option!
I was offered a few different treatment options but decided to throw my hat in the ring for the CAPTURE clinical trial - I figured with all the genetic testing that was required I probably wouldn't be eligible anyway, however, I jumped that hurdle but then scored the control arm of the trial. This is oral chemo, capecitabine, which I started in August. I started on 4 x 500mg tablets in the morning and 4 at night, a huge dose. Scans at the 8 week mark showed shrinking tumours but due to nasty side effects I had to drop down to 3 tablets morning and night, but still side effects so am now on 2 tablets twice a day with the last scan showing stable tumours and no new ones.
My questions are this - for those that have been on a clinical trial - how did you put up with the scan-xiety, I'm usually only scanned every 6 months via a PET scan (and don't tend to worry at all about it or focus on it at all) but this is every 8 weeks..........it's literally hard work trying not to think about it?
If you have participated in a clinical trial - how did you work out when enough was enough? For reference, I'm a single mum aged 44 with 2 teens, with no help from their father at all so am doing allllllll the work drop offs, the school runs etc and still managing to work 3 days a week. It has become much, much easier since my eldest got her licence etc and can help out but this shouldn't be up to her! I'm having to swap work days and swap everything else around to accomodate the clinical trial as I'm required at the hospital from around 9.30-3.30 every 3 weeks. If I come off the trial, my option is the fulvestrant injections monthly or I can just do oral chemo without the need for appts every 3 weeks and scans etc every 8 weeks. I like the fact that I'm helping the research but am so so so worn out by it all. Would love to hear others experiences with trials and fulvestrant injections too!
Many thanks for reading this novel!!!
Joinmelb xoxo
Hi there everyone,
Merry Xmas, happy new year and all that jazz!
I've got a couple of questions and thought I'd head straight to the experts!
I was diagnosed with metastatic bc (bones only) in December 2018 and put on Kisqali & Letrozole/Anastrozole since then.
In December 2021, it was discovered I had a few more lesions in ribs so I did a clinical trial to "radiate the shit" out of the pesky ones to hopefully remain on Kisqali for longer. Unfortunately, when rescanned in May this year it was discovered that the radiation had worked on those spots but I still had pesky new tumours forming. So after 40 rounds of kisqali, I had to find a new option!
I was offered a few different treatment options but decided to throw my hat in the ring for the CAPTURE clinical trial - I figured with all the genetic testing that was required I probably wouldn't be eligible anyway, however, I jumped that hurdle but then scored the control arm of the trial. This is oral chemo, capecitabine, which I started in August. I started on 4 x 500mg tablets in the morning and 4 at night, a huge dose. Scans at the 8 week mark showed shrinking tumours but due to nasty side effects I had to drop down to 3 tablets morning and night, but still side effects so am now on 2 tablets twice a day with the last scan showing stable tumours and no new ones.
My questions are this - for those that have been on a clinical trial - how did you put up with the scan-xiety, I'm usually only scanned every 6 months via a PET scan (and don't tend to worry at all about it or focus on it at all) but this is every 8 weeks..........it's literally hard work trying not to think about it?
If you have participated in a clinical trial - how did you work out when enough was enough? For reference, I'm a single mum aged 44 with 2 teens, with no help from their father at all so am doing allllllll the work drop offs, the school runs etc and still managing to work 3 days a week. It has become much, much easier since my eldest got her licence etc and can help out but this shouldn't be up to her! I'm having to swap work days and swap everything else around to accomodate the clinical trial as I'm required at the hospital from around 9.30-3.30 every 3 weeks. If I come off the trial, my option is the fulvestrant injections monthly or I can just do oral chemo without the need for appts every 3 weeks and scans etc every 8 weeks. I like the fact that I'm helping the research but am so so so worn out by it all. Would love to hear others experiences with trials and fulvestrant injections too!
Many thanks for reading this novel!!!
Joinmelb xoxo
