Biopsy Updates
Today, it was planned that Shelbie would have a biopsy from the underside of her tongue but guess what...not today. We did show up to the appointment with the oral surgeon and he said he couldn't do the biopsy today because for testing cancer of the mouth, the pathologist sends a special kit with serums the tissue sample has to be placed in and he didn't have that kit.
He did however take lots of pictures to send to the pathologist but he didn't feel like it was cancer but he had narrowed it down to three other diseases. One was Leukoplakia which was in my top two. The second one was a disease that masquerades as Leukoplakia called Erosive Lichen Planus and I can't remember what the name of the third one was. As is customary, he wasn't familiar with TREX1, CVID or Dyskeratosis Congenita but he did take the time to do a little reading while we were there. He wanted to make sure that he could consult with our Oncologist and Immunologist which I thought was very nice.
About an hour after we left the appointment, he called and said he had been reading up on CVID especially and believed that what Shelbie has is Erosive Lichen Planus. It starts on the lip as a little bullseye sort of lesion and spreads from there. Leukoplakia usually starts under the tongue or inside the cheek. It's immune mediated and spreads from the mucosa to the nails, hair and skin. Right now, it's covering Shelbie's mouth and going down her throat. Her face is running a fever! I know, weird. He took her temperature to make sure she wasn't sick and it was her usual 97.8. He checked the temperature of her cheeks because they have been red and hot the past three days and they were nearly 100 degrees.
The cause is unknown and there aren't many good treatments to get it under control. He did call in a prescription of a couple of mouth rinses but this is going to be a long road. He pointed out that is has now spread to her gums and they are starting to erode away. This is a disease that commonly develops into squamous cell carcinoma.
Shelbie will start the medication tomorrow and then we hope it starts calming down. He plans to follow her closely.
It's been a day. I'm grateful for a smart and intuitive doctor who was inspired. I'm glad she didn't need the biopsy today, maybe when we go back in two weeks. We already received our increased dose of plasma today which was way faster than I had ever imagined it would get her. It's such a significantly higher dose I will have to use three needle sites in her stomach instead of two and it will take several hours.
I am wiped out! I didn't sleep a bit last night and today, I'm extra jumpy but otherwise, trying to move forward.
He did however take lots of pictures to send to the pathologist but he didn't feel like it was cancer but he had narrowed it down to three other diseases. One was Leukoplakia which was in my top two. The second one was a disease that masquerades as Leukoplakia called Erosive Lichen Planus and I can't remember what the name of the third one was. As is customary, he wasn't familiar with TREX1, CVID or Dyskeratosis Congenita but he did take the time to do a little reading while we were there. He wanted to make sure that he could consult with our Oncologist and Immunologist which I thought was very nice.
About an hour after we left the appointment, he called and said he had been reading up on CVID especially and believed that what Shelbie has is Erosive Lichen Planus. It starts on the lip as a little bullseye sort of lesion and spreads from there. Leukoplakia usually starts under the tongue or inside the cheek. It's immune mediated and spreads from the mucosa to the nails, hair and skin. Right now, it's covering Shelbie's mouth and going down her throat. Her face is running a fever! I know, weird. He took her temperature to make sure she wasn't sick and it was her usual 97.8. He checked the temperature of her cheeks because they have been red and hot the past three days and they were nearly 100 degrees.
The cause is unknown and there aren't many good treatments to get it under control. He did call in a prescription of a couple of mouth rinses but this is going to be a long road. He pointed out that is has now spread to her gums and they are starting to erode away. This is a disease that commonly develops into squamous cell carcinoma.
Shelbie will start the medication tomorrow and then we hope it starts calming down. He plans to follow her closely.
It's been a day. I'm grateful for a smart and intuitive doctor who was inspired. I'm glad she didn't need the biopsy today, maybe when we go back in two weeks. We already received our increased dose of plasma today which was way faster than I had ever imagined it would get her. It's such a significantly higher dose I will have to use three needle sites in her stomach instead of two and it will take several hours.
I am wiped out! I didn't sleep a bit last night and today, I'm extra jumpy but otherwise, trying to move forward.
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