Nivolumab for Charley Desson
Donation protected
As many of my friends and family know, I have been fighting cancer for almost 2 years now. Now on 6th line treatment, I have run out of options that are free on the NHS.
So, a little bit about my fight:
Diagnosed in august 2016 after being misdiagnosed by my GP with fibromyalgia for 8 months, a ct scan showed a swelling in my chest. A month later I underwent a biopsy, having my lung deflated to get to the swelling (that wasn't too fun). A week later I was diagnosed with stage 4 Hodgkin's lymphoma. The scans they use to show where the cancer is (a PET scan) work by the cancer 'lighting up' on the scan. Lets just say, on my scan I lit up like a Christmas tree. If the Hodgkins could get there, it could.
So a week later I started ABVD chemotherapy for 6 months. I lost my hair, gained a blood clot in each lung and nerve damage in my legs. Amazingly, 2 months in my scan came back clear, no cancer! So I carried on and finished the course.
Then 3 months later, as I was getting back to my new normal, I got the news. The Hodgkins was back.
After a month of IVF to store embryos (which came with its own week long hospital stay and complications) I started ICE chemotherapy. 4 cycles of this was brutal. Again, losing what little hair I had, being forced to use a wheelchair, horrific sickness and having a very low immune system I carried on, hoping to get to remission. No such luck. It cleared most of the cancer up apart from a patch in my hip and in my collar bone.
So I started Brentuximab. A new immunotherapy from the nhs. After 3 cycles of this my scan showed my hip patch had gone, but another had grown in its place on the other side. As well as slight growth in the patch in my collar bone.
Then onto brentuximab/bendamustine combination. The sickness from this was unbelievable. I had a 48 drip each time of anti-sickness and that only stopped me actually being sick, not the actual feeling sick! 4 cycles of this and the scan showed my hip patch grown slightly and the collar patch remained.
Then came radiotherapy. 2 blasts of radiotherapy, everyday (including my birthday) for 3 weeks. I ended up in hospital with this as well as it burnt the inside of my throat and damaged the surrounding soft tissue. BUT the physical lump I had sticking out my shoulder has gone down and i have more movement in my hip.
The next scan showed that while on radiotherapy new patches have developed in my neck. So, onto gemcitabine/vinorelbine chemotherapy to get rid of these. Ive just had dose 2 of this treatment and have 2 more to go before my scan to see whats happening. Which brings us to now...
Having seen my consultant, if the current drug I'm on doesn't work then my next option is a immunotherapy called nivolumab which is not funded by the NHS. Costing around £3000 a dose and being told to prepare for 8 doses, a total of around £25k (plus payment fee for this site), this is a bit beyond my reach! The aim of all of this is to get me to remission to have a stem cell transplant to essentially replace my faulty immune system with that of someone else.
I need to get these funds in place before the treatment starts so that, if I need it I can start immediately. Considering my track record with chemotherapy, we are leaning towards that I will be needing the drug. As it isn't a chemotherapy, but an immunotherapy, hopefully it has a chance of working. Should, by some miracle, I don't need the drug I will return all funds where possible (gofundme can electronically refund card donations) and where not possible, I will donate to various charities.
So please, please donate. I've lost so many things to this disease and the treatment of it in the past 2 years. Friends, holidays, family members, fertility, my health, most of my immune system, my independence, the list goes on and on. Please donate and help where you can, I don't want to lose anymore to it.
Thank you so much to everyone who donates, you have no idea how much it is appreciated.
So, a little bit about my fight:
Diagnosed in august 2016 after being misdiagnosed by my GP with fibromyalgia for 8 months, a ct scan showed a swelling in my chest. A month later I underwent a biopsy, having my lung deflated to get to the swelling (that wasn't too fun). A week later I was diagnosed with stage 4 Hodgkin's lymphoma. The scans they use to show where the cancer is (a PET scan) work by the cancer 'lighting up' on the scan. Lets just say, on my scan I lit up like a Christmas tree. If the Hodgkins could get there, it could.
So a week later I started ABVD chemotherapy for 6 months. I lost my hair, gained a blood clot in each lung and nerve damage in my legs. Amazingly, 2 months in my scan came back clear, no cancer! So I carried on and finished the course.
Then 3 months later, as I was getting back to my new normal, I got the news. The Hodgkins was back.
After a month of IVF to store embryos (which came with its own week long hospital stay and complications) I started ICE chemotherapy. 4 cycles of this was brutal. Again, losing what little hair I had, being forced to use a wheelchair, horrific sickness and having a very low immune system I carried on, hoping to get to remission. No such luck. It cleared most of the cancer up apart from a patch in my hip and in my collar bone.
So I started Brentuximab. A new immunotherapy from the nhs. After 3 cycles of this my scan showed my hip patch had gone, but another had grown in its place on the other side. As well as slight growth in the patch in my collar bone.
Then onto brentuximab/bendamustine combination. The sickness from this was unbelievable. I had a 48 drip each time of anti-sickness and that only stopped me actually being sick, not the actual feeling sick! 4 cycles of this and the scan showed my hip patch grown slightly and the collar patch remained.
Then came radiotherapy. 2 blasts of radiotherapy, everyday (including my birthday) for 3 weeks. I ended up in hospital with this as well as it burnt the inside of my throat and damaged the surrounding soft tissue. BUT the physical lump I had sticking out my shoulder has gone down and i have more movement in my hip.
The next scan showed that while on radiotherapy new patches have developed in my neck. So, onto gemcitabine/vinorelbine chemotherapy to get rid of these. Ive just had dose 2 of this treatment and have 2 more to go before my scan to see whats happening. Which brings us to now...
Having seen my consultant, if the current drug I'm on doesn't work then my next option is a immunotherapy called nivolumab which is not funded by the NHS. Costing around £3000 a dose and being told to prepare for 8 doses, a total of around £25k (plus payment fee for this site), this is a bit beyond my reach! The aim of all of this is to get me to remission to have a stem cell transplant to essentially replace my faulty immune system with that of someone else.
I need to get these funds in place before the treatment starts so that, if I need it I can start immediately. Considering my track record with chemotherapy, we are leaning towards that I will be needing the drug. As it isn't a chemotherapy, but an immunotherapy, hopefully it has a chance of working. Should, by some miracle, I don't need the drug I will return all funds where possible (gofundme can electronically refund card donations) and where not possible, I will donate to various charities.
So please, please donate. I've lost so many things to this disease and the treatment of it in the past 2 years. Friends, holidays, family members, fertility, my health, most of my immune system, my independence, the list goes on and on. Please donate and help where you can, I don't want to lose anymore to it.
Thank you so much to everyone who donates, you have no idea how much it is appreciated.
Organizer
Charley Desson
Organizer
