Sophie's Cancer Battle
Donation protected
Hi everyone
I apologise for being so quiet on here and an update is long overdue.
I took over managing this page as I realised Mike hadn't updated everyone on my progress, so here goes....
My chemo started to fail at the beginning of January 2019, my scan from the Christmas Eve showed progression and after my cycle on New Years eve, I ended up in hospital from the side effects of the chemo leaving me unable to eat or drink. So with the combination of those two factors, my doctor decided to end the chemo treatment.
The good news was though, that he could now request me having immunotherapy through compassionate use. Little did I know, but he had been working behind the scenes to get this set up for me when the chemo failed (as it always eventually does with us BRAFer's apparently) It meant me moving to the Birmingham QE and being under a new oncologist, so all of this process took a couple of months. In that time my cancer grew rapidly and my CEA rose from 675 to 2700. But, it got approved and I was able to start my first cycle at the very end of February.
I was started on a dual immunotherapy drug called Nivolumab and Ipilimumab. That was to be for four cycles, every 3 weeks. Then moved to the single dose of Nivolumab every 2 weeks. After the first four cycles, in May 2019, I ended up in hospital again with what is called an adrenal crisis. I had no clue what this meant at the time, but evidently I had my first auto immune disease; Adrenal Insufficiency, or Addisons Disease. My risk of getting one or more auto immune diseases was 40%, so it was likely that it would happen, however this one came on more rapidly than anyone imagined.
However, since then, I have been very healthy and my life has been amazingly almost normal since being on immunotherapy. I have moved back to my local hospital with my original, wonderful, oncologist, so getting to hospital now is a dream compared to travelling to Birmingham! I am now also on a monthly double dose, instead of fortnightly.
Due to the Addisons, I now have to take daily steroids to stay alive, which has actually helped combat the immunotherapy side effects of nausea and fatigue, but it has been a struggle to adapt. But I can quite honestly say that it has saved, and changed, my life. My scans so far have been stable with some gradual shrinkage of my tumours. The drug company wish me to continue on the treatment indefinitely, instead of the usual 2 years. My liver tumours are now at a size and amount, where I could actually be operable and have a liver resection. My oncologist is currently looking into this more, if it is possible and when we could do it. But for now I will remain on the immunotherapy for the time being, unless something drastic starts to happen with my scans or blood tests.
I cannot thank you all enough for donating and supporting us through this all. Its been an absolute whirlwind and your donations have helped incredibly through some tough times. As we didn't have to fund the immunotherapy due to the compassionate use, any money left will be saved for the kids future, or for hopefully, an amazing family holiday I'm dreaming of if we ever get over this coronavirus situation!
I have an instagram account if you want to keep up to date with my story, as I frequently post on there. I am @unbowelievable
Much love
Sophie
https://spark.adobe.com/page/0VGOzRJ72pVxv/
I apologise for being so quiet on here and an update is long overdue.
I took over managing this page as I realised Mike hadn't updated everyone on my progress, so here goes....
My chemo started to fail at the beginning of January 2019, my scan from the Christmas Eve showed progression and after my cycle on New Years eve, I ended up in hospital from the side effects of the chemo leaving me unable to eat or drink. So with the combination of those two factors, my doctor decided to end the chemo treatment.
The good news was though, that he could now request me having immunotherapy through compassionate use. Little did I know, but he had been working behind the scenes to get this set up for me when the chemo failed (as it always eventually does with us BRAFer's apparently) It meant me moving to the Birmingham QE and being under a new oncologist, so all of this process took a couple of months. In that time my cancer grew rapidly and my CEA rose from 675 to 2700. But, it got approved and I was able to start my first cycle at the very end of February.
I was started on a dual immunotherapy drug called Nivolumab and Ipilimumab. That was to be for four cycles, every 3 weeks. Then moved to the single dose of Nivolumab every 2 weeks. After the first four cycles, in May 2019, I ended up in hospital again with what is called an adrenal crisis. I had no clue what this meant at the time, but evidently I had my first auto immune disease; Adrenal Insufficiency, or Addisons Disease. My risk of getting one or more auto immune diseases was 40%, so it was likely that it would happen, however this one came on more rapidly than anyone imagined.
However, since then, I have been very healthy and my life has been amazingly almost normal since being on immunotherapy. I have moved back to my local hospital with my original, wonderful, oncologist, so getting to hospital now is a dream compared to travelling to Birmingham! I am now also on a monthly double dose, instead of fortnightly.
Due to the Addisons, I now have to take daily steroids to stay alive, which has actually helped combat the immunotherapy side effects of nausea and fatigue, but it has been a struggle to adapt. But I can quite honestly say that it has saved, and changed, my life. My scans so far have been stable with some gradual shrinkage of my tumours. The drug company wish me to continue on the treatment indefinitely, instead of the usual 2 years. My liver tumours are now at a size and amount, where I could actually be operable and have a liver resection. My oncologist is currently looking into this more, if it is possible and when we could do it. But for now I will remain on the immunotherapy for the time being, unless something drastic starts to happen with my scans or blood tests.
I cannot thank you all enough for donating and supporting us through this all. Its been an absolute whirlwind and your donations have helped incredibly through some tough times. As we didn't have to fund the immunotherapy due to the compassionate use, any money left will be saved for the kids future, or for hopefully, an amazing family holiday I'm dreaming of if we ever get over this coronavirus situation!
I have an instagram account if you want to keep up to date with my story, as I frequently post on there. I am @unbowelievable
Much love
Sophie
https://spark.adobe.com/page/0VGOzRJ72pVxv/
Organizer
Sophie Umhofer
Organizer
