For the second round of 6, the side effects have been getting progressively worse, so much so that for the final 2 rounds I was given 50% of the panitumumab antibody drug to try and reduce the side effects (which unfortunately it didn’t do). The side effects I started noticing was on round 2 that I was getting very dry skin on my face including around my eyes which lead to dry eyes, they are only now almost 3 weeks since my last treatment getting back to almost normal. My face has also been bleeding when touched, it has made shaving very difficult trying to be careful, as I need to shave due to the rash at points my skin has been going yellow and crusty around my mouth.
With my rash, it has taken over my chest, back and arms, but we began to notice from the 3rd round of these 6 that my skin was bleeding on its own, marking bedding and clothes. To help the bedding I have now started sleeping on blankets, which is a practical solution to protect bedding, but is annoying to have to do, as it’s a constant reminder that I am struggling with side effects. My scalp has also started getting very sore and developed sort of spots and lumpy bits that have a bit of puss come out, trying to massage cream into my head to calm it down and ease it. Because of this I sleep with old jumpers on my pillow to protect them from blood splatters. Added onto this all my skin is getting very dry, so I have a lot of skin everywhere, which isn’t very nice. All of this combined just makes me feel like a monster at times.
Another side effect that kicked in was getting nail infections in my fingers, they have been pretty sore, in particular the ones that still exist in my thumbs, I never realised how much I use my thumbs until I kept knocking them and wincing in pain and discomfort. I have also noticed that I have been more gassy this time round, which hasn’t been pleasant for my wife during the night, I’m asleep I don’t really notice.
During treatment in an appointment with the oncologist, we were told that after these 6 treatments, I would be on a treatment plan that would allow me to live as close to normal as possible, this really gave me hope of something to aim for and get through the side effects so I could live as close to normal as possible.
After my last treatment I had a scan on June 20th and then saw the oncologist for the results of the scan which showed only a very slight (talking millimetres) reduction in the areas of concern. However there is one node that has enlarged around my liver which is a slight concern. I will likely have another scan in around two months.
The oncologist thinks the effects of the antibody drug has been achieved & doesn’t see much further benefit can be done as it’s done what was wanted in shrinking things, but also as my skin side effects are quite severe they are not sure it’s best to keep me going on that. So I’m having a break from treatment, I’ll have another appointment with the oncologist in 3/4 weeks to decide what happens next, possible options are:
All will be decided when I next see the oncologist in around 4 weeks time, for now I can enjoy my break, the antibody drug could still be continued with if my skin suddenly recovers. This has left me feeling frustrated and gutted as I was so focused on living as normally as possible again, but that seems to have been snatched away from me now. It now feels like I am weighing up the pros and cons to quality over quantity of life, which is a surreal mindset to be in, but I fear with some treatment I’ll have to be back to hiding away, what with covid I’ve isolated as has my wife for over 2 years, that is a long long time and a lot of effort. Even having had my spring booster for covid (that’s 5 in total) I still won’t feel confident going out back on treatment.
