Hi everyone,
I haven’t been around for a while so wanted to check in with an update on my brother who has stage 4 bowel cancer.
He was doing reasonably well on oral capecetabine, irinotecan and panitumubab. He went for his treatment last Thursday and had some sort of episode where he felt awful, was very light headed and he almost collapsed. He recovered and came home and told me about it. He hasn’t had panitumubab for a month due to his skin being in a state with an extensive rash which is a known side effect. He is awaiting an appointment with his oncologist which is a telephone appointment next week.
At the weekend he has had a stroke which has made his cancer treatment more complicated. Thankfully he got to hospital in time to have thrombolysis which has limited the damage, his only deficit at the moment is his speech is quite slow and he has to think about what he’s saying. The stroke team have stopped the capecetabine tablets, so the oncologist will need to decide the next steps. He had a ct scan of his abdomen when he went in for his chemo last week, and so naturally he is very anxious to know the results of that but whilst I support him in any way I can, I don’t think he could take bad news about his cancer at the minute. He said that if he hasn’t had a good response to the chemo so far, he’s not going to have any more. It may all be irrelevant anyway if the doctors think the stroke has been caused by the chemo drugs. He’s having an absolute nightmare at the moment.
Update 31/1/2022
Hi everyone,
I just wanted to stop by to let you all know the outcome of brothers appt with oncologist today. He says that the scan showed that he has had a very good response to the chemo, and he does not think that the chemo has caused the stroke. He says he is happy to continue when he feels up to it. He is due to have treatment next week and he is keen to get it. I feel very relieved that there has been a bit of positive news for once. My brothers mood has lifted noticeably today, he is hopeful about the future for the first time since his diagnosis in September. I can finally sleep tonight I hope.
The panitumubab dose is going to be reduced again to see if he can tolerate it, if not then it will stop. I did politely point out to the oncologist that he hasn’t actually had any treatment for his skin according to the pathway that is in place so I think personally that should be done before they stop it. This is important as once it has been stopped, he can’t have it again. The oncologist was a bit wishy washy about it and said he would leave it up to my brother to decide. I said no we’re not doing that we want to be guided by you and the evidence. He said okay he will reduce the dose and see what happens. I asked him if he would like us to take photos of his skin to help with decision making, he said oh yes that might be good, but he was happy to be guided by the nurses who told him his skin was too bad to have it. I really don’t know how something this important can be decided without the prescriber of the drug seeing the problem. I think I might have made myself very unpopular with him, but I couldn’t care less. So we carry on, have another scan in 6-8 weeks and take it from there.
