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August 2005 Updates Thursday, Aug. 04, 2005
Well, Bruce did his 24 hour urine, had blood work done, and he saw the gastroenterologist, the dermatologist and the nephrologist. There's good news and there's bad news.
The rheumatology tests were negative, which is good. :)
The colonoscopy went well! "There was no abnormality noted to account for the abnormal CT/PET scan." Yeah!...Being realistic however, we also have to realize that there could have been lymphoma there when the scan was done, but that the Prednisone has temporarily taken care of it. The gastroenterologist also said that just because he didn't see anything "inside" the colon to account for the abnormal scan, it doesn't mean there isn't something "outside" the colon.
The dermatologist didn't even bother to biopsy Bruce's rash. As soon as he saw it he said, "That looks like a Prednisone rash!". Apparently, high dose Pred. taken for a prolonged period can cause a harmless rash as a side-effect. The dermatologist gave Bruce a prescription wash to try using on it, but he said more than likely Bruce would keep the rash while he was on the Pred. and once he stops the Prednisone, the rash will go away.
Now for the bad news. Despite Bruce being on Prednisone for 6 weeks, his kidney function is continuing to get worse (his 24hr urine protein is up to 3853!). The nephrologist said if the Prednisone was going to reverse the kidney failure, it probably would have done so already, but he wants Bruce to stay on the Pred. for a few more weeks, with the hopes that it might suddenly kick in. Bruce has to do another 24 hour urine and have more blood work done in a couple of weeks. If his counts haven't improved by then, he'll stop the Prednisone.
Although the tumor on the back of Bruce's shoulder went away again after Bruce went back on Prednisone (now there's actually a HOLLOW where the tumor had been!), the nephrologist still thinks the kidney failure is being caused by paraneoplastic syndrome. He's going to call Bruce's onc. tomorrow and discuss the possibility of Bruce having radiation, to see it that will help.
Bruce has Cushing's Syndrome, caused by the Prednisone. In addition to the rash, he has steroid-induced high blood sugar, high blood pressure, a "buffalo hump", a "Moon Face", a bloated belly, "thin skin" (easy bruising), mood swings, insomnia and jitteriness. When Bruce took Prednisone as part of chemo treatments for the lymphoma, it was his least favorite drug (mainly because of how it affects him emotionally). Now that he's on it continuously, he likes it even less!
Saturday, Aug. 13, 2005
Bruce saw the nutritionist last week and he's been put on a low protein, low potassium, low phosphate, low sodium diet. The diet doesn't leave a whole lot that he's able to eat, he even has to be careful with veggies & fruits! And, to make matters worse, he's still on the Prednisone so he feels like he's starving constantly...They'll keep an eye on his blood counts and the diet will be tweaked as necessary.
Friday, Aug. 26, 2005
Bruce had an appointment with the nephrologist this week. Bruce's counts haven't improved, so the doctor is having Bruce start tapering off of the Prednisone. It'll be another 2 months until Bruce is off of it completely though!
The nephrologist said there isn't anything else he can do for Bruce, so we should start planning for dialysis. In fact, he wanted to send Bruce to a vascular surgeon to have an access put in for hemodialysis. Bruce told him he wants to look into peritoneal dialysis first. The nephrologist doesn't think Bruce is a good candidate for peritoneal dialysis, because of the lymphoma, but he agreed to send Bruce for dialysis education.
On to: October 2005 Bruce's Non-Hodgkin's Lymphoma Story
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