I’ve been getting asked again lately how Karne’s getting on and I’ve asked him if I can share an update everyone since he’s gone a little quiet on the ol’ social media. He was supposed to make a video to upload but he’s a lazy ass and hasn’t gotten around to it. Sorry in advance if this is an essay!
So basically after waiting 2+ months since he’s last scan, Karne finally had the consultation in Leicester on Wednesday with the specialists. It wasn’t bad news, but it also wasn’t good news either. He’s been given a choice as to which route he now takes for treatment and once he has made one, it’s very hard/impossible to then have the other.
The decision has been left entirely to him as the consultants cannot tell him which is best. It’s new territory and he’s 1 of just 8 people in the UK in this position and is basically a bit of a guinea pig. They have no idea which is best and can’t really help make the decision because they can’t even agree amongst themselves.
Option 1 is another Allograft Stem Cell Transplant from a donor (his sister) and would mean he loses a year of his life. He will be hospitalised for several months and literally cannot leave the house for a full year or be around groups of people, as he will essentially be growing an entirely new immune system and a simple cold could be fatal. So that for him means no working, no college, no wedding.
What they did say is that it is more likely to cure him, however it still isn’t guaranteed and is less likely that the original one which failed miserably. But this also means the fatality rate is increased to 20% if something goes wrong. The super sucky part is that if he has the stem cell transplant and he relapses again he cannot go back to Nivolumab and there is nothing else they can do for him except MAYBE a trial.
Karne has nothing but bad memories from the original stem cell transplant as he relapsed before he was even told he was in remission, ended up with engraftment syndrome and was an hour away from death had they not caught it. So he’s very hesitant and you can appreciate why. Especially since he has just got his like back to a steady sort of normal by going to college and working part time.
Option 2 is to stay on Nivolumab, which is the drug they’ve brought in from Norway and that he has been doing really well on (it shrunk his tumours by 70-80%). BUT depending on how his body reacts over time, he could end up with horrendous side affects similar to the engraftment syndrome (they estimate around the 14 month mark which is December, or maybe not at all, they just don’t know). If that happens then continuing with that treatment would be unbearable for him and his cancer is likely to come back if it has disappeared, or spread with a vengeance if still hanging around. He would also never be able to use it again in the future.
The glimmer of hope to this shit sandwich is that there MAY be a possibility of a stem cell transplant at that stage depending on circumstances/spread/etc; and they might also be able to give him another drug to help take the cancer down again if this does happen which should aid in a stem cell transplant. However it’s unlicensed in this country and therefore illegal and hard to get hold of. They’ve only ever done it once before and got hold of this drug for another patient that was in similar position.
But the risk with this is that in order to have a transplant he would need to be drug free for 8 weeks which poses the risk of his cancer spreading too far in that time and making it impossible to do. Leaving him without any options again.
They did mention that there is a man in his 70’s who has been on Nivolumab for over 5yrs without side affects or spread of cancer.. but he’s one of a few ever treated with it in the UK, so there’s no saying if Karne would be the same. If he is, he would need to have the chemo/treatment every 2 weeks for the rest of his life (which is a small price to pay). But again, they stressed Nivolumab is unlikely to cure and will only work as a preventative until something new becomes available (again, if).
We’re trying to weigh up the pro’s and cons but there’s so many if’s, but’s and maybe’s that we wanted to get any many peoples advice/opinions as possible. We figured people may have different perspectives to our own and can help with unclouded judgement.
He’s going to speak to the pro-nivolumab team, because he only heard from the stem cell specialists on Wednesday and so only heard from their perspective. So of course they were pushing a transplant. But we want to hear it from both sides before making a decision so we have as much information we can get. He’s also waiting for the results of a scan he had on Monday before thinking to hard on this.
But other than that, he’s fine. 😝
I’d also like to take the time to ask if everyone could consider signing up for the Anthony Nolan register. It’s a very simple procedure and you could literally save someones life. Finding matches for stem cells is just as, if not more difficult than finding an organ donor and it’s not something many are aware of. The more sign up, the better chance someone has of finding a match.
Their website explains what they do, why it’s important and how you can help someone with immuno/blood cancer. So click [ here ] – spit in the tube and save a life!