Meaghan was given an infusion of Rituximab yesterday. Well, the infusion day was a it of a roller coaster ride, but ended up a success.
For about a month, Meaghan and I both suffered a quiet anxiety while anticipating the infusion with great hope and great fear. The potential positive results means that other medications with some nasty side effects can be tapered down to lower levels.
On the other hand, the potential reactions to Rituximab ranged from nothing to sudden death. How is that for a range of options? Anyway, Meaghan experienced a fairly serious asthmatic reaction, which is to say she found it difficult to breathe. It is a pure statement of her condition that this is nothing we have not dealt with before.
One nebulizer breathing treatment with a medication called Albuterol cleared up her airways and after a bout an hours delay, she was able to complete the infusion. With the delays, she was in hospital over twelve hours for what was supposed to be a six hour infusion. But it is done now.
We are very appreciative that three nurses and two doctors who stayed late last night. The hospital was literally locked up when we left so we had to walk around the outside of the building to get to the parking garage. Then the elevator in the parking garage was broken so I hiked up to the 4th floor to get the truck. It was as if the powers that be did not want her to leave.
So, what about this morning?
I awoke to the sound of Meaghan singing in the shower. Yeah... singing.
She reported some pain at the injection site last night, but this morning it was all clear.
She had that asthmatic reaction during the infusion, but this morning her peak flow was 800. (Her normal daily is 700-750.)
Meaghan reported no pain and she was very excited.
Partly that could be the 60mg of Prednisone kicking in. She has been on that dose for several days now.
Partly that could be the fact that she got to attend the championship game for the State HS Baseball. She is the team manager for her school.
(I must interject here that her team did in fact win the State Championship. So, how many sixteen year old girls do YOU know who have earned a pin for their letter jacket as state champions in boys baseball?)
Meaghan had been prepared to miss the game, but the doctors all say, “Go with how you are feeling,” and she felt very good today.
Partly, and probably mostly, her positive outlook today could be attributed to the successful completion of this infusion. It is like a great weight was lifted off her shoulders. Last night, she even spoke to me of things related to the future, which is a topic I am not even sure she is conscious that she has avoided lately. The vasculitis flare makes a patient wonder if there will be a future, and if so, then will the quality of life be worth getting there? Now Meaghan seems willing again to look forward and that is very very good...
Rituximab has garnered successful results for many CSS patients. We have been hearing about it for a year now when we met other CSSers in June 2008 who were had participated in the clinical trials. They all seemed to love it. One went so far as to threaten bodily harm to any one who tries to take it away. Compared to chemotherapy and corticosteroids, these biologicals are a dream medicine. They are genetically engineered substances that target specific cells in the body and create a specific effect. It really is next generation stuff.
But like anything new, there is that big question mark about long term prognosis.
After the second treatment in two weeks, Meaghan will have a gap of 4-6 months between treatments. You know when it is time to take another dose because your vasculitis symptoms start to return, But she should be able to expect at least three months of improved condition. That is a merry break from daily pills and weekly injections. Oh, the pills and injections will continue for now, but there is a good chance she may be able to taper them down to a less harmful level.
Take Prednisone for example, there are many side effects, and long term use is almost as bad as the disease it acts to cure. The stuff tastes nasty, and puts your brain literally, “on steroids.” Those commercials that are out now about sports are mostly aimed at anabolic steroids, but the effect of corticosteroids is also a double edged sword. They do so much good they are referred to as miracle cures, and they can do so much harm that they are truly a damned if you do, damned if you don’t sort of deal.
So, Meaghan is feeling great today. That is what matters right now.
Tomorrow is another day. We will deal with it when it gets here.
: Joseph
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