Well, we found that it was not to be just yet.
In the fall Elizabeth went to the hospital each month with fevers. Her ANC kept dropping lower than they want it to be during this phase of treatment, and they also saw that her antibodies were really low. So in October we stopped giving her chemo to let her ANC recover, and she got her first IVIG (antibody transfusion).
During this time we learned that when Elizabeth started treatment back in October 2012, the doctors had done some genetic testing and found she has one gene that likes to hold onto the 6MP (the chemo pill she takes every single day). Since she didn't have two it was possible that it wouldn't effect her, but we found that it does. All this does is hold the 6MP in her cells longer than usual. This is probably why her ANC kept going lower than wanted.
When she started chemo again she started at only getting half as much 6MP as she was (her Methotrexate dose that she gets once a week was also halved). As we figured out how much 6MP Elizabeth's body could handle she needed to get labs checked every other week. They also keep a watch on her antibodies, and she has been needing an IVIG about every other month.
Since the changes Elizabeth has not needed to go to the hospital except for her regular LP's that just has us there for a few hours instead of a few days.
Elizabeth is currently getting 75% of the 6MP and 50% of the Methotrexate. She's been getting this dose for a few months now, and when I asked her doctor last week if she still needed labs checked every other week she said she was okay going to once a month (really it's every four weeks). Yay!
In the fall Elizabeth went to the hospital each month with fevers. Her ANC kept dropping lower than they want it to be during this phase of treatment, and they also saw that her antibodies were really low. So in October we stopped giving her chemo to let her ANC recover, and she got her first IVIG (antibody transfusion).
During this time we learned that when Elizabeth started treatment back in October 2012, the doctors had done some genetic testing and found she has one gene that likes to hold onto the 6MP (the chemo pill she takes every single day). Since she didn't have two it was possible that it wouldn't effect her, but we found that it does. All this does is hold the 6MP in her cells longer than usual. This is probably why her ANC kept going lower than wanted.
When she started chemo again she started at only getting half as much 6MP as she was (her Methotrexate dose that she gets once a week was also halved). As we figured out how much 6MP Elizabeth's body could handle she needed to get labs checked every other week. They also keep a watch on her antibodies, and she has been needing an IVIG about every other month.
Since the changes Elizabeth has not needed to go to the hospital except for her regular LP's that just has us there for a few hours instead of a few days.
Elizabeth is currently getting 75% of the 6MP and 50% of the Methotrexate. She's been getting this dose for a few months now, and when I asked her doctor last week if she still needed labs checked every other week she said she was okay going to once a month (really it's every four weeks). Yay!
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