No point in mincing words. Today's news at the hospital was not good.
Last month I wrote:
"In the first month, FL's Kappa score dropped from 502 to 252. That is a terrific response! But 252 is still a scary number in the world of Free Light Chain Myeloma, so we're not quite breaking out the champagne. "
Just as well we didn't bother with the fizzy wine. Month Two brings the news that his Kappa score has GONE UP to 264.
Except the doctor didn't tell us that. She was very very shifty when FL asked her what his "numbers" were. She would only divulge that his Kappa score was "fairly steady" and she asked what we were told last month. For once, I didn't have the numbers at the forefront of my brain, so it was only when I came back to work and checked the blog that I realised the truth. It is not the sort of "fairly steady" that means DOWN, but the sort that means UP.
When your Kappa score goes up, it is reasonable to assume that the Revlimid is not working, and that the Myeloma is re-asserting itself.
But he was given another (last?) prescription for Rev and Dex and an appointment to go back to the hospital in one month's time. Meanwhile, another blood sample has gone off to Birmingham to check his current Freelite scores. So the June appointment will be critical. If his numbers are up again then... well! What will that mean? His number's up?
Which thought makes me extra grumpy that the doctor didn't tell us the whole truth, upfront, because we didn't have the opportunity to ask her what happens next. Now we have to let our questions brew for another month. Instead, FL got a telling off for not carrying an Anticoagulant Therapy Record Book. We tried to explain that the GP didn't give him one, but she was having none of it. Obviously it is FL's fault. And I suppose he is to blame for the drugs not working too.
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17 comments:
Oh no! Sorry to hear the news!! And I can't believe the doctor was telling off FL for not having something that NO ONE gave him! grrrumpf!
Sorry that your hospital appointment didn't go well. Sometimes I think the doctors forget how to talk to patients.
It might be worth writing your questions down and posting to the consultant in charge of FL's treatment. A month is a long time to stew over things!
Me too Roo. I'm sorry. I'm also aware of communication being handled clumsily by doctors. I'm sure they don't intend for it to be that way, but some seem unaware of the impact they have.
I'm sorry that you had a bad day at the hospital. The last thing you want is a shifty doctor resorting to telling FL off for something that is not his fault.
Are there any clinical trials done at your hospital? The next generation Velcade(carfilzomib) or next generation Revlimid(Pomalidomide)sp? have been shown to work at times when their "cousin" drugs did not.
Also, though I know it may hard to tolerate, mixing them up so the MM is being hit by different mechanisms. Rev/Vel/Dex? Sending best wishes to all of you. Hope they find something to turn this around.
Sorry to hear the news. What the hell is it with doctors? When a patient ASKS they are meant to tell!! FFS...why can't they see that it has the opposite effect from the one they might be trying to achieve, more worry and not less.
I'm so very sorry to hear this. And how infuriating that she treated FL like a naughty child! Sounds like she isn't well equipped to deal with difficult truths - which would indicate she might be better off in another profession. Sending lots of good wishes your way. Take care of yourself.
Praying for you both.
Around here (well in the last state I lived in) you could ask for copies of your lab results. My sister had breast cancer and did a ton of research on the internet. She went from Michigan to Texas for her surgery because that was the cutting edge place. Doctors are people.don't put them on pedestals. It's tough to be bitchy...but maybe you need to get your bitchy personality out before your next appt. (I'm a Yankee...not a proper English)...Ha...my Mum's relatives were English (some!) and quite proper. Hugs...things go up & down...to the uneducated observer...the increase doesn't seem that huge. But what do I know?
I'm sorry to hear about FL's Kappa light chain count going up. I'd be alarmed too if that were to happen, and recently it did happen to me.
My brother's KLC count went from 3600 (untreated) to 600 (after Rev/Dex/Zometa) but then it shot back up to 1300. I was rather distressed at that point, but at this point the doctor increased the medication dosage I think and 2 months later it went back down to his current count of 904. So just remember it still has the potential to go back down.
Carl
Waiting a month for critical answers is NOT acceptable! I think a phone call is in order - either call during regular hours or call when you have the two of you able to be together to ask those questions and get some answers.
I agree that placing any BLAME is ridiculous and only shows that she is trying to re-direct attention away from the more serious matter at hand - not very productive or an example of excellent communication skills on her part.
I hope it is OK for me to intend that you have a very complete conversation with the doctor and get the answers needed for peace of mind and planning... this is for the highest and best good of all concerned, so be it and so it is.... whoooooo!
Thank you everyone! Denise - your comment made me realise how out of date I am on MM treatment options. But FL is already part of the clinical trial circus: otherwise he couldn't have had Velcade or Revlimid. The UK is not quite at the same stage as the US and I doubt if the docs have access to the drugs you mention. However, I will certainly find out.
Just FYI Roo, Carfilzomib is an amazing drug and our docs are using a LOT of it. It was supposed to be FDA approved here stateside around now but the timing got pushed back. It works the same way as Velcade as far as how it kills the cancer but is MUCH more tolerable and does not cause PN nearly as much. I have several friends on it and they feel fine taking it and it worked great too. I'm going to do some checking with Tim's docs and see if there is any "compassionate use" program for this drug when trials are not available.
When B asked on Friday what would happen if I had a donor transplant and the MM came back, the doc said that there were new drugs becoming available. But obviously we aren't able to pick and choose our medication like other countries.
I have read that if one medication has already been used, eg Velcade it doesn't mean that it wouldn't work again. I think the Royal have started using subcutaneous Velcade too.
Oh, and whilst I remember, you'd previously mentioned FL being down (don't suppose this helped any) I noticed that Alluprurinol has depression listed as a side effect.
Other than that have a cyber hug.
We're far, far from experts, but Mike and I both thought that maybe the increase is so small that it might not mean anything. In the past I ave questionned Mike's numbers only to be told it depends what they get in the syringe! Now I keep imagining all these darn critters floating around deciding whether or not to go down the water slide.
Two more cyber hugs are on their way.
I'm sorry the doc had such terrible bedside manners. D: All my best to you both and fingers crossed for next month!
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