Inconclusive, but somewhat reassuring, consult yesterday. BP 117/70 HR 70 O2 98%. BP excellent (not on BP meds) unless it betokens Votrient not working, but that may be a premature surmise? No significant side-effects to report - still impossible to assess the contributions of disease and treatment to the total pain experienced.
Pain the primary consideration. Sharon shared our relief that the dexamethasone had helped greatly in pain relief but also that I had managed to do without it, since the 2 weeks on it, with no ill effects and without immediate return of crushing pain. Hope is that this reflects Votrient regaining control and containing the pain to manageable levels.
ALT, as of Wednesady, at 124 - on the way up but we hope it will plateau at clinically acceptable levels - consequently continue the present treatment - Votrient, Fragmin, omeprazole and pain relief with MST, ibuprofen and oramorph, making more use of the latter than I have been doing, to stay ahead of the pain as much as possible.
Still no sight of the scan report and no printout available! Sharon to have a copy emailed out to me so that we can see all the gruesome details before the next scan on 9th Sept. I am to see her on 13th Sept, after next scan, and, depending on blood test results on Wednesday of next week, will see her next Friday, if an emergency consultation becomes necessary.
Showed her the Confidential Letter by Health Canada and GSK to physicians (flagged by Linda Rhodes on SP) re dosage level on re-starting Votrient. Sharon advised that I should change down from 600 mg to 400/day pending her investigating latest European Medicine protocols, at which point I revealed that I'd done so since Saturday. She approved. I mentioned that I've consulted MHRA's Yellow Card Team and promised to let her know what response I get from the Assessor they've assigned to investigate.
She has no particular interest in my C-R P numbers, because she regards the scans and ALT numbers as definitive in guiding treatment - I'll develop a document to educate her on the value of CRP to monitor treatment response! My figure on Wednesday was down a little but still at a disappointing 44. My immune system is already weakening again on the Votrient and I'm becoming marginally anaemic, so a little sleepiness for the first time in years, isn't too surprising.
Our new memory foam mattress is transformative - I'm sleeeping much better and the neck pillow is also a godsend. Sleeping more should help to reverse the downward spiral of my bodyweight, which has hit 129 lb lately!! Sharon is not expressing much concern about my weight loss so far but is advocating a higher protein intake. In addition to disappointing CRP, I'm disquieted by decline in albumin level and will intensify study of nephrotic syndrome etc and methods for combating hypoalbuminaemia. Must regain some muscle soon.