So, I had the first gammaglubulin infusion (IVIG) today, and apart from the fact that I had to get up at 5.15am to get to the hospital for 7am, it wasn't that bad really!
Of course I did have a few reactions which slowed things down. They up the flow-rate gradually and once they started doing this I started to have a bit of difficulty breathing. (Nothing dramatic - just couldn't breathe in as much as normal.) So, the dose went down again for a while. Then the nurse upped it again a couple of times, and I suddenly started shivering, and feeling really cold. So the nurse rang my doctor, and I got given an antihistamine and some cortizoid steroid or other. They had to wait for half an hour for them to kick in, and then my infusions were re-started, this time successfully! The flow rate get getting raised with no problems!
It was nice to see all the old familiar faces, and they were all pleased to see me too (even the cleaners and people who bring meals round remembered me!) And sitting in the day chemo room is a really interesting experience! People who haven't had cancer, or a close friend/relative with it would never imagine it like this. Everyone is really cheerful and happy, reading their books/newspapers/magazines, listening to their iPods, chatting with their friends who've come in with them. Not the sort of picture that would come to mind about having to have chemo! Because the type of chemo I had (HyperCVAD) was very intense, I actually had my treatment as an in-patient in the hospital - stayed in for around 14 days each time. So this is a new experience for me!
Anyway, I guess it won't be that bad, especially if I either don't have those reactions again, or else I'm given the drugs at the beginning. It took about 5 hours this time but without all the stops and starts it should get back down to no more than 4 hours I think. Apparently the effect is cumulative - it won't make that much difference after just one treatment, but will build up over the next few months. We shall see ... :)
Friday, December 19, 2008
It wasn't so bad!
Posted by susiegb at 7:45 PM 0 comments
Labels: immune system, NHL
Wednesday, December 17, 2008
Sigh! and a bit of a hissy fit!
Well, I saw my specialist today. And as suspected (see this post on my other blog!), because my immunoglobulin levels are so low I do have to have the monthly infusions ... in fact I'm having the first one on Friday!
I'm just going to have a bit of a hissy fit, OK, and then I'll calm down and it'll end up being a part of my 'normal' (!) life ... :)
But right now, this second - I so did not want this to be happening to me! I know it's not a huge thing in the whole scheme of things, specially after what's happened to me in the last year or so! But somehow it really got to me. Almost more than when I was first diagnosed, oddly enough!
Actually, just re-reading that makes me smile and feel somewhat better! I really do need to get a grip on reality!
The waiting room was heaving with people and Dr B was a little harassed! I think there had been some double-bookings or something. And there was me trying to weazel out of having to go through this whole regime (which I might add, is open-ended - ie. every month indefinitely!!). I kept bringing up this and that that I'd heard about on forums, or read on blogs, and he basically kept coming back to the fact that he was the lymphoma specialist and he sees/treats first-hand many many lymphoma patients. Really, (and this is me speaking now) - who is the lymphoma expert? Me because I've read a lot about other people's experiences with it, or him who is dealing with patients and treating their problems every day ... ?!
I think it's the bronchiectasis that I've developed that is the main culprit. If I hadn't come down with that, then even though my immunoglobulin levels are low, I might well have been able to avoid the infusions. But apparently once you have that, it's a prime source of infection in your lungs and because I have a damaged immune system I'd be likely to end up in hospital for a week each time!
So - there's no avoiding it! As I knew all the time. My feeble attempts at knowing what was the best treatment for me better than him were always bound to fail. And I really do know that in a month or two, this will turn into 'no big deal' - as my friend kept telling me at lunch! I was in such a state through the appointment that I never asked about my blood counts or asked a lot of the other questions I had ... I'll be seeing him again in a month and hopefully I'll do all that then!
I did go up and see the nurses after my appointment (Dr B's rooms are on the ground floor of the hospital I was in) and they were very pleased to see me (and the home-made fudge I'd brought them as a Christmas present!) Big hugs all round - and they said they'd make sure I got through the infusions quickly!!
I do feel better after all that whinging (Aussie term meaning complaining!) and stuff! Hopefully I've now got it off my chest and I shall just go back to enjoying life! Which is good, let me not forget that! :)
Posted by susiegb at 7:56 PM 3 comments
Labels: immune system, NHL