hi guys
wasn't too bad all things considered. They pre-med me with 1000mg iv steroids, huge dose of phenagan, panadol etc, then drip the rituxan in v~e~r~y slowly. I was doing really well, so they tried to turn it up a little and that was ok for a while, then my body had just had enough. But I did really well just sitting bolt upright with oxygen whiskers (some desats, but nothing major), lots of nebs and just the tiny bit of rituxan trickling in. It took ages to infuse (plus the alarm on the infusion went off every other second which was a total pain) but I got through it. The best one so far.
They had to put the lure in my elbow, which made it tricky for such a long infusion, but it was the only place they could access. But, most of the alarms were actually to do with air bubbles in the line rather than positional.
Personally I think my asthma is under better control than it was, so that made a huge difference. Sleeping bolt upright is an over rated past time though, but with all that steroid on board it was hard to sleep anyway. Lovely nurse who joked about accidently 'dropping spilling a bottle of sleeping pills in your lap' - she was a laugh a minute which really helped. I couldn't even really go make a cup of tea as if I walked around I dropped my oxygen sats.
But, it's all done, which is good. But I am going in for cyclo infusion(cytoxan)tomorrow - eeewww ! I hate the stuff, makes me horifically nauseous. They said they give it to stop me making antibodies against the rituxan. Heck, I make antibodies against everything else, so why not antibodies against the rituxan.
I had another 'episode' with my tongue this morning, and I now can't poke it out at all. It won't reach beyond my lips in any direction. Actually my tongue is not working at all well, so my dysarthria is increased. The registrar tried to get neuro to come and see me, but they are in a meeting all moring, so by the time they get out of that and try and fit a whole day of patients into one after noon, the chances of seeing me are pretty slim (just an eccasbabation of a chronic problem) so I am just leaving a msg for my own neuro instead. Must do that. I think
But, they have added another 500mg solumedrol to my cytoxan tomorrow because of my tongue, and will repeat the same in two weeks. They said that they really didn't want to go over 3 grams of steroids in two weeks (plus my 20mg oral daily dose that I am on now) so that's all good.
Of course I am busy tidying out the airing cupboard, again, it gets a good going over everytime I have iv steroids. So it is not a tidy as it used to be before I had rituxan, when I was having iv steroids much more often.
Oh well, my dogs are looking at me wanting a walk, but I am thinking maybe not (don't want to drive out to the dog park) but I may just take them over the road for a little leash walk around the park later. I will get my daughter to come with me. They are such big energetic dogs that they really need their walk. One thing about exercising them so much, they become very fit and so continued exercise is really important. I will see if I can find a nice picture of them .....
hmmm, this smells pretty good - wonder if we should roll in it ?
![]()
After that big walk, we both need a sleep ......
Tommy snuggles up with Sammie the cat
![]()
Rachel sneaks on to the couch .....
![]()
back to the airing cuboard (and one very grumpy cat who I tossed out of the cubpoard)
raglet
wasn't too bad all things considered. They pre-med me with 1000mg iv steroids, huge dose of phenagan, panadol etc, then drip the rituxan in v~e~r~y slowly. I was doing really well, so they tried to turn it up a little and that was ok for a while, then my body had just had enough. But I did really well just sitting bolt upright with oxygen whiskers (some desats, but nothing major), lots of nebs and just the tiny bit of rituxan trickling in. It took ages to infuse (plus the alarm on the infusion went off every other second which was a total pain) but I got through it. The best one so far.
They had to put the lure in my elbow, which made it tricky for such a long infusion, but it was the only place they could access. But, most of the alarms were actually to do with air bubbles in the line rather than positional.
Personally I think my asthma is under better control than it was, so that made a huge difference. Sleeping bolt upright is an over rated past time though, but with all that steroid on board it was hard to sleep anyway. Lovely nurse who joked about accidently 'dropping spilling a bottle of sleeping pills in your lap' - she was a laugh a minute which really helped. I couldn't even really go make a cup of tea as if I walked around I dropped my oxygen sats.
But, it's all done, which is good. But I am going in for cyclo infusion(cytoxan)tomorrow - eeewww ! I hate the stuff, makes me horifically nauseous. They said they give it to stop me making antibodies against the rituxan. Heck, I make antibodies against everything else, so why not antibodies against the rituxan.
I had another 'episode' with my tongue this morning, and I now can't poke it out at all. It won't reach beyond my lips in any direction. Actually my tongue is not working at all well, so my dysarthria is increased. The registrar tried to get neuro to come and see me, but they are in a meeting all moring, so by the time they get out of that and try and fit a whole day of patients into one after noon, the chances of seeing me are pretty slim (just an eccasbabation of a chronic problem) so I am just leaving a msg for my own neuro instead. Must do that. I think
But, they have added another 500mg solumedrol to my cytoxan tomorrow because of my tongue, and will repeat the same in two weeks. They said that they really didn't want to go over 3 grams of steroids in two weeks (plus my 20mg oral daily dose that I am on now) so that's all good.
Of course I am busy tidying out the airing cupboard, again, it gets a good going over everytime I have iv steroids. So it is not a tidy as it used to be before I had rituxan, when I was having iv steroids much more often.
Oh well, my dogs are looking at me wanting a walk, but I am thinking maybe not (don't want to drive out to the dog park) but I may just take them over the road for a little leash walk around the park later. I will get my daughter to come with me. They are such big energetic dogs that they really need their walk. One thing about exercising them so much, they become very fit and so continued exercise is really important. I will see if I can find a nice picture of them .....
hmmm, this smells pretty good - wonder if we should roll in it ?
After that big walk, we both need a sleep ......
Tommy snuggles up with Sammie the cat
Rachel sneaks on to the couch .....
back to the airing cuboard (and one very grumpy cat who I tossed out of the cubpoard)
raglet
