Adjuvant Carbo vs Surveillance

Thanks G

Yeah, hoping the lung thing is nothing and will just go away. A brief Google suggests that almost half of people who have ct scans get lung nodules showing up (not sure how accurate this is (an American site) but I’m clinging onto it.

I’ve read a thousand diaries and posts from people on here that have gone through the chemo process so I feel pretty prepared. This forum has been such a fantastic help. Obviously I realise my treatment is the light version too - I’m lucky, although I’d still rather be in the Maldives.

Having read other guys experiences of one shot carbo I was expecting a morning at the centre having a kidney test. I knew I wouldn’t need a lung or hearing test but did expect this. Anyway, it’s not required so either I misread or the rules / process has changed. 

M

Yes I had the full kidney function test in advance. It's so they can get the dosage correct. As soon as they put the chemo into you your kidneys start filtering it out. They need to dose it so enough of it stays in your system for long enough, but not too long. I saw that others have not had the full function test though, so there must be alternative methods.

G

Had my cycle of Carbo today (exactly 4 weeks after my nut job). Wouldn’t say I enjoyed it but it was fine and the nurses were very kind. Whole process took 2 hours, had 3 cups of tea, pack of biscuit's, tuna sarnie and watched a film. No pain aside a scratch from the 3 attempts to get the cannula in. I’m 5 hours in and feel normal. Preparing for a rough night and the stomach jab tomorrow. 

Have to book a follow up  3 month bloods and ct tomorrow. Is it normal for a ct scan to be done after 3 months (and not 6)? I’m using my work private health care btw.

You'll feel a bit groggy tomorrow, but not too I'll.  I had private health but opted to stay NHS. My local NHS oncology service had requisitioned the local private hospital as it was in lockdown 1 and they wanted to keep cancer patients separate.

I didn't have any stomach jab.  I think my first CT scan was around 3 months after, then longer to the next one.

Remember to take your anti nausea meds to schedule.

Best wishes

G

Day one update: Taken all meds and the stomach jab and to be honest still feeling normal. Hope this continues! 

Also managed a 2 mile walk with no issues. 

Day 2 update

Slept from 2100 to 0600 and woke on day 2 feeling ok. Been taking sickness and steroid tabs on time.

Managed to watch the kids play football all morning in the cold with no issues. On return home though realised I may have over done it. Felt woozy and sort of sea sick all day. Only really felt better laying down. Restless too, quite annoying. Fell asleep around 2100 again…..

Glad you're doing well. Be careful not to overdo it though. I think the nadir is around day 11 for Carbo, but I seem to remember days 5 to 10 being the worst for me. It hits you in waves. You really don't want to be picking up any viral infections so take care when you're out and about. I got outdoors every day, but away from other people and I mostly sat, didn't do much walking.

Best wishes

G

Day 3 update

Felt a little better today although I woke at 1am this morning and couldn't get back to sleep. No side effects just couldn't sleep. Finally did a poo this morning (took some Senna's yesterday)..expecting more of a clear out as the day continues....!

Steroids have finished now so i'm hoping my sleeping may improve (i think they put me on edge slightly).

Am continuing with anti-sickness meds but not sure I need to. G - how long did you take them for??

I don't remember to be honest.  I had the 3-day course of steroidal ones, and another load that I took for a bit longer as prescribed, and a third lot that I could take if I felt the need - which I never did.  If you have some that you are still supposed to be taking to a schedule you should probably keep taking them.  If you don't feel like you need them then they are working.

Day 4 update

Continued to feel groggy all day, managed to doze for an hour at lunch time. Went to watch the kids play football for an hour early evening which was nice to get some air but made feel a little nauseous on return home. First day with no steroids….

Went to bed at 10 and woke at 1050 this morning (thanks wife). Great sleep!