Following on from the results in May 2025, I had my next treatment the week after the results and it was interesting to get the nurses opinion on the Nivolumab jab as her understanding of it was that it might speed up the process slightly but that a nurse would have to be sat with the patient administering the jab rather than as they do now where they set the patient up and can then go to another patient, so I guess we shall all see what happens when the jab is rolled out and what it does time wise for the nurses.
The day after my treatment I then had a phone call from the nurses to say they forgot to tell me that my phosphate reading was slightly low again (0.78 when should be 0.8) they advised ways to get this back up is by having full fat milk, potatoes, salmon & chicken. The one thing that seemed odd to me is the difference in reactions, when I got the scan results the oncologist had my most recent blood results in front of her and said all looked fine, I’d much rather know these things so I can change my diet accordingly, again I feel sorry for the nurses that this side of things is all left down to them and they have to call me when they are busy but yet when myself and my wife were sat face to face with the oncologist nothing was mentioned when it could’ve been.
Nothing of note was worth putting on here for a while to be honest until we got to August, around my treatment in August it was stupidly hot again (I’m not a fan of hot weather and never will be) but the day after treatment I just felt very thirsty and found myself drinking a lot. In the evening, I looked inside my mouth and noticed it was red raw and didn’t look right so I took my temperature to make sure it wasn’t high and then called the 24hour nurses helpline, they advised me to try taking mouthwash 4 times a day so I ordered some Corsodyl as was recommended and that massively helped. Only issue I had with the mouthwash is when I ordered some more it didn’t agree with me and made my mouth worse again, even though it was the same brand I think the issue was it had “added fresh breath protection” as that’s the only difference I could see from what I’d used previously.
In August I did have another oncology appointment where the oncologist advised she’d book my next scan for some time in October (I later got that through for October 29th). She also advised that the hospital was still looking into the injection version of Nivolumab so there was no development there. In regards to the dry mouth I was advised to stick with the mouthwash and to investigate the ideas the dentist had given me earlier in the week when I had been to the dentist (handy timing right). From the dentist’s idea’s I am currently trailing a brand called “Oralieve”, I have tried their mouthwash and gel, and both seem to be good and help. I would say the mouthwash is gentler than the Corsodyl, so I am now sticking to this. Obviously, I must stress this is my own opinion on Oralieve and if you are reading this undergoing cancer treatment and have a dry mouth definitely speak to your cancer care team and dentist before trying any products to find the right thing for you.
Now we skip ahead to November 13th (I know this entry likes to jump a few months here and there), we got my scan results from the scan I had at the end of October. The results showed that there was no change from May and everything was still stable, so treatment will continue as is with another Oncology appointment in 3 months and another scan in 6 months. The oncologist also advised that the hospital is slowly rolling out the injection version of Nivolumab and at the moment the pharmacists are deciding who gets it and when so I shall see what happens there as I go in for treatments.
The only other thing of note from the appointment is that we noticed from notes we have made on previous oncology visits that in the last 6 months or so my weight has dropped by 3kg, my wife seemed to be more worried about this than me. The oncologist wasn’t worried about my weight either, thinking about it on the drive home I did begin to wonder if the weight loss is because as the year has gone on, I have started having meals with salad/vegetables more frequently than I was due to bowel habits. For example I was having a lot of meals with either chips or microwave rice, but now I am having vegetables and mixing up the carbs by doing myself meals with pasta or potatoes. I will keep an eye on my weight just in case it is something to worry about as my weight dropping at the end of 2020 was a sign of the cancer arriving and growing nicely when it was discovered at the start of 2021. I am weighed before each treatment so that is another good way to monitor things.
