Confused???! I am.
Just been to see Prof – some of which was useful, i.e. straight answers to my questions (a rarity) and some of it a bit of a mind fuck. So here goes.
The good bits:
- He agreed that I should contact the heart/lungs chap who is dealing with the pulmonary hypertension and ask if I go increase the dose as – just for a change – absolutely no change discernible as yet
- He thought my huge wall chart was one of the funniest things he'd ever seen in all his years, but did at least have the grace to understand why we need to know dates so we can plan round H's knee op and so I can have some sense that it's not 100% of 2016 that is down the shitter, but maybe only 80% – oh yes, every bit counts
- He listened to how I feel physically and my disappointment that Cycle 2 has only dropped me from 3.18 to 3.1 – and suggested that I move onto a different chemo drug. Just like when I had this in 2008, I was moved from one to another as the PP level hit a plateau and I struggled with the side effects, so here we go again, a good thing I think. I was kind of hoping for this, as Velcade makes me feel like shit and is not reducing any of my pain issues, plus has swollen my feet to monster hoof size, such that I can't even do up my trainers now, let alone wear all those delicate girly kitten heels that I so like to go out in..
So – I went down to the chemo lounge, got stabbed in the gut with today's Velcade injection and was then told that as of now, I am being moved off Velcade and onto Cafrfilzomib. Ah, these drugs have such catchy, memorable names, hey? It's also known as Kyprolis, which, quite frankly, isn't much better unless you remember it as 'kippery bits' = and that doesn't exactly conjure up the sweetest of images.
This one runs on a 4 week cycle, where you get it (by sub cut injection – my tummy is going to continue to look like a bloody war zone) for 2 days in a row. And as the first day is going to be Friday, I have to go into the main hospital this Saturday to get the second jab, deep joy.
Then next week and from then on it will probably be a Wed & Thurs combo – with the 4th week being the 'recovery week'.
But – not quite sure how on earth they will merge the 3 week cycle of Revlimid with the 4 weeks cycle of Kyprolis…… that's the first question on the list for this Friday. Someone not too far from here can see she won't be getting any full recovery weeks as she will either be on one or the other of the buggers! Either way, there's a hatful of drugs that still in meeting – will call soon as can x have to be taken even in the 'recovery' weeks, so it probably won't make any difference, apart from us having to work out which bloody week we are in and what goes into the magic pill dispenser..
It's also making one hell of a challenge for my diaries which are not synching properly and I am now in a total conundrum as to what day I need to be where, with which pills scoffed at what time of day… Bloody Apple Toys – time for a call to the IT chappy methinks x