Let's start with the numbers:
March reading: kappa light chains: 252
April reading: kappa light chains: 264
May reading: kappa light chains: 303
June reading: kappa light chains: 315
The doctor is choosing to read this gradual rise as "holding steady", because if she assesses it as an "increase" she will have to take FL off his current chemo regime. She has now given us a cut-off number. When his kappa score reaches 450, he will not be allowed any more Revlimid. In other words, when his numbers match where he was before the start of this treatment regime, they will admit it is not working.
I had a little play with Excel and I reckon we might be looking at November. Oh fabulous! Another Christmas of worrying about future treatments or lack of them!
Meantime, I made FL tell the doctor about his golfing injury and his painful chest. She wasn't terribly interested. However, I persisted and said "But what if he has pneumonia again...?" which made her sit up and get out her stethoscope. She listened to his lungs and said he was "fine". She said "If he has cracked a rib, it is nothing to worry about because bones heal". Really?! Even bones riddled with myeloma lesions?!?!
Blaaaaaaaaaaaaaaaaaaaaah!
And for those interested in other statistics:
Appointment time: 10.50am
Time called by doctor: 12.10pm
Time in consulting room: 5 minutes
Time called for zometa: 12.40pm
Time I was thrown out of waiting room for nurses to have a training session: 1pm
Time zometa finished: 1.30pm
Time other drugs available from pharmacy...4pm. Yes, really!
Sock rows knitted: 50
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2 comments:
It is worrisome that the primary care doctor is not giving you more than a few minutes of time and dismisses your concerns. It doesn't sound like she has much experience in MM, and even less compassion!! I am so sorry you don't have answers you are looking for.
When I told one of the docs months ago about my fall - she looked about a million miles away from 'nothing to worry about' as she asked for further information.
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