Raglet
06-17-2006, 11:33 AM
and a big thanks to clare for posting for me. Just feeling to fragile to do it myself.
The last 5 days have been pretty intense. I have now come down with a horrible lung infection so I am feeling pretty unwell. Lots of lying on the couch and sleeping through the afternoon. My friend came over with bags stuffed full of yummie heat and eat stuff so we are eating well and dogs seem to be tolerating the lack of walks (my daughter will do a lot for me, but draws the line at walking my our manic dogs). My mum turned up with soup and muffins, seems like the whole community is feeding us ! My boss came round with a gorgeous card filled with messages from my workmates (they too know how much this treatment meant to me).
The whole rituxan saga is just such a mess, and i have no idea what will happen from here. Things that have been mentioned are that's it, no more, or do it again in intensive care with full back up, or try again at a very slow rate and turn it off for good at the first sign of wheeze. I have no idea if I even want to do it again, it was pretty intense. Watching them take away a $6000.00 bag of rituxan to throw it down the sink was pretty amazing. I have to talk to the rheumie who supervised it on Monday (not my rheumie, but I know her from when she was a registrar, and I like her a lot - geesh, I think pretty much the entire rheumatology dept knows me by now ....). I am meant to be going in for my cytoxan on Tuesday (Sat night downunder) but doubt that I will given I have this infection.
So it has been pretty full on - and i just wish i wasn't feeling so unwell, as I know it is really effecting my capacity to bounce back. It's weird, my asthma is actually very mild and usually very controllable, but once the wheeze hit the oxygen levels in my blood started dropping and my heart rate increased. They kept saying things like 'this treatment can kill people, we haven't had anyone die and we are not going to let you be the first' (I was just telling them to keep going, whats a wheeze or two). Main problem was the amount of pre med I had already had to control any wheeze - symbicort increased to 9 puffs a day for 5 days prior, 40mg pred for 2 days before treatment, then 500mg iv solumedrol + iv antihistamine inmediately prior to the infusion, which should have taken care of any allergic reaction. Which also meant there wasn't a lot more that they could give me if I got in a really dangerous situation, beyond adrenaline.
If I DO end up having it, it will be a long slow process I think - infusing it over 20 hours, probably with lots of nebulisers along the way whether i need them or not. After what has happened, that just sounds exhausting. We never managed to entirely get rid of my wheeze, even when rituxan was turned off for an hour and i was given several nebs. So, one thing they would have to work up is a new pre-med protocol for me to try and prevent problems. I think I could probably limp through it slowly with lots of supporting treatment, but it just sounds so exhausting. Actually I just got too exhausted to even want to continue and was very glad when it got turned off for good. The other thing that could happen is that I could have an even bigger reaction because i may have become sensitised to it.
They also said that I am likely to be having two problems with rituxan: one is because my antibody rate is so high, that is known to cause problems (I think because of the way the rituxan binds with antigens - from what I have read). Number two is the make-up of rituxan itself - it is half human half mouse, and they said I may be reacting to the mouse part of it. There is a newer version monoclonal b antibody that is in the final stages of testing that is human only, which may be better for me. But that is not available yet.
So I have no idea where things go from here, or even where I want them to go. I just need to get well again before I make any decisions. I was meant to have cyclo (cytoxan) on Thursday as per protocol, but they put if off until I got over the asthma attack. Seeing I now have this lung infection, they may put if off again - at the same time they are wanting me to have it as I am very over due (my last cytoxan treatment was postponed due to a sinus infection, so I haven't had any for about 6 weeks).
The only good thing that happened was that my sister was there with me throughout the whole asthma saga. It was good to have her there distracting me from wheezing etc and not letting me stress out too much, and was generally fabulous. The doctors were great too, and I was amazed by the amount of monitoring and attention I got (seemed to have a nurse camped by my bedside for most of the day, plus the docs were in and out all the time). I think i am probably also very tired from the rituxan I did receive, as I usually bounce back faster from lung infections. One of the docs really helped clarify things for me when it was all going on by saying 'today is not the day to worry about battling lupus, today we just have to make decisions about whether rituxan is safe for you' or something like that - because of course i kept saying things like 'but I want to be able to keep walking' and stuff like that. It really did help to separate out those two things. And they tell me that it is not necessarily the end of the road, but then I know that these other treatments are not yet available, so I only half believe that. But at least I have got to try it, and am still approved for the full 2 treatments if I can safely receive them. Also, they said now that I have been approved for this level treatment, it will be much easier to get me approved for any other treatment like this.
I am the first person they have had to experience this reaction, and it is said to be rare (they checked with the oncology docs who have much more experience in using rituxan). So the next decision is going to me whether or not to try again - the docs haven't decided yet, and i definitely haven't decided either. I am just focusing on trying to get myself well in time to be back at work on Monday.
anyway, writing this has been very carthartic and helped me process stuff - thanks for being there for me guys, you're a fabulous team to have in my corner
style_emoticons/<#EMO_DIR#>/flowers.gif
Raglet
The last 5 days have been pretty intense. I have now come down with a horrible lung infection so I am feeling pretty unwell. Lots of lying on the couch and sleeping through the afternoon. My friend came over with bags stuffed full of yummie heat and eat stuff so we are eating well and dogs seem to be tolerating the lack of walks (my daughter will do a lot for me, but draws the line at walking my our manic dogs). My mum turned up with soup and muffins, seems like the whole community is feeding us ! My boss came round with a gorgeous card filled with messages from my workmates (they too know how much this treatment meant to me).
The whole rituxan saga is just such a mess, and i have no idea what will happen from here. Things that have been mentioned are that's it, no more, or do it again in intensive care with full back up, or try again at a very slow rate and turn it off for good at the first sign of wheeze. I have no idea if I even want to do it again, it was pretty intense. Watching them take away a $6000.00 bag of rituxan to throw it down the sink was pretty amazing. I have to talk to the rheumie who supervised it on Monday (not my rheumie, but I know her from when she was a registrar, and I like her a lot - geesh, I think pretty much the entire rheumatology dept knows me by now ....). I am meant to be going in for my cytoxan on Tuesday (Sat night downunder) but doubt that I will given I have this infection.
So it has been pretty full on - and i just wish i wasn't feeling so unwell, as I know it is really effecting my capacity to bounce back. It's weird, my asthma is actually very mild and usually very controllable, but once the wheeze hit the oxygen levels in my blood started dropping and my heart rate increased. They kept saying things like 'this treatment can kill people, we haven't had anyone die and we are not going to let you be the first' (I was just telling them to keep going, whats a wheeze or two). Main problem was the amount of pre med I had already had to control any wheeze - symbicort increased to 9 puffs a day for 5 days prior, 40mg pred for 2 days before treatment, then 500mg iv solumedrol + iv antihistamine inmediately prior to the infusion, which should have taken care of any allergic reaction. Which also meant there wasn't a lot more that they could give me if I got in a really dangerous situation, beyond adrenaline.
If I DO end up having it, it will be a long slow process I think - infusing it over 20 hours, probably with lots of nebulisers along the way whether i need them or not. After what has happened, that just sounds exhausting. We never managed to entirely get rid of my wheeze, even when rituxan was turned off for an hour and i was given several nebs. So, one thing they would have to work up is a new pre-med protocol for me to try and prevent problems. I think I could probably limp through it slowly with lots of supporting treatment, but it just sounds so exhausting. Actually I just got too exhausted to even want to continue and was very glad when it got turned off for good. The other thing that could happen is that I could have an even bigger reaction because i may have become sensitised to it.
They also said that I am likely to be having two problems with rituxan: one is because my antibody rate is so high, that is known to cause problems (I think because of the way the rituxan binds with antigens - from what I have read). Number two is the make-up of rituxan itself - it is half human half mouse, and they said I may be reacting to the mouse part of it. There is a newer version monoclonal b antibody that is in the final stages of testing that is human only, which may be better for me. But that is not available yet.
So I have no idea where things go from here, or even where I want them to go. I just need to get well again before I make any decisions. I was meant to have cyclo (cytoxan) on Thursday as per protocol, but they put if off until I got over the asthma attack. Seeing I now have this lung infection, they may put if off again - at the same time they are wanting me to have it as I am very over due (my last cytoxan treatment was postponed due to a sinus infection, so I haven't had any for about 6 weeks).
The only good thing that happened was that my sister was there with me throughout the whole asthma saga. It was good to have her there distracting me from wheezing etc and not letting me stress out too much, and was generally fabulous. The doctors were great too, and I was amazed by the amount of monitoring and attention I got (seemed to have a nurse camped by my bedside for most of the day, plus the docs were in and out all the time). I think i am probably also very tired from the rituxan I did receive, as I usually bounce back faster from lung infections. One of the docs really helped clarify things for me when it was all going on by saying 'today is not the day to worry about battling lupus, today we just have to make decisions about whether rituxan is safe for you' or something like that - because of course i kept saying things like 'but I want to be able to keep walking' and stuff like that. It really did help to separate out those two things. And they tell me that it is not necessarily the end of the road, but then I know that these other treatments are not yet available, so I only half believe that. But at least I have got to try it, and am still approved for the full 2 treatments if I can safely receive them. Also, they said now that I have been approved for this level treatment, it will be much easier to get me approved for any other treatment like this.
I am the first person they have had to experience this reaction, and it is said to be rare (they checked with the oncology docs who have much more experience in using rituxan). So the next decision is going to me whether or not to try again - the docs haven't decided yet, and i definitely haven't decided either. I am just focusing on trying to get myself well in time to be back at work on Monday.
anyway, writing this has been very carthartic and helped me process stuff - thanks for being there for me guys, you're a fabulous team to have in my corner
style_emoticons/<#EMO_DIR#>/flowers.gif
Raglet