Monday, December 13, 2010

not the best news...then again...

maybe the best news.

the scan today...as I heard about it in a short phone call from Dr. Klancar...showed the tumors growing about half a centimeter.

not halting. not shrinking. but only slightly larger.

I saw Dr. Klancar briefly after the scan, when she was saying it would take awhile to get the results, and she looked like she hadn't slept since last Monday, when she looked like she hadn't slept all weekend. I knew she was not coming into work next week, Christmas week, and I said I hoped she'd get some rest then...she didn't seem too optimistic about the prospects.

last Monday, her staff ratted on her, that she had been up at 4 in the morning checking out other treatment prospects for me.

today she suggested one.

sorafenib

I mean, backwards, it's binefaros...almost like beneficent...why wouldn't a drug company go with that?
trade name...always got to have a trade name...nexavar. Bayer makes it, to counter sliding aspirin sales.

Dr. Klancar said that, for the level of toxicity and side effects the chemo is having on me, she isn't satisfied with the amount of results.
sorafenib is an oral drug. twice daily.
she said, she wouldn't be able to get it right away, probably not before the next week 1 on the 20th. so, she said, let's stick with the plan and do the regular chemo one more time, and that would be it...then start the pills.

something that might be more effective, that doesn't cost my body nearly so much to sign up for?
I wasn't totally disappointed in the phone call.

the girls were. they were hoping hoping hoping for the miracle now. all of it.

if there had been no cancer at all on the scan...if they said, we think we switched your scan with another patient, you may never have had tumors...I would probably still have had to go through the six rounds of chemo.
if at that point, the docs had scratched their heads and said, I dunno where it went, there would probably still be a maintenance dose of drugs for a long bit.
I didn't see any way out of the six rounds.

now I do.

so I...as several of my Dear Readers may well do...Googled binefaros...I mean...sorafenib.

it was approved by the FDA early this decade. there was a study in England, I believe, that spoke quite excitedly of it. it said that the placebo group was taken off of it early, because the results were so positive.
it extended the TTP (time to tumor progression) by a median of three months. median survival time by the same three months.

my heart dropped. we had this outside shot at tumor regression or elimination with the adriamycin...now we're lobbying for three more months?
I mean...I'll take three more months anytime with tears of gratitude. but...is she giving up?

Brian Daniell, "I'm not that kind of Doctor" former teacher of statistics, calls the median a stinking pile, and insists on seeing the mean.
several Google pages later, I gained a new appreciation for his point of view.

now...the study I saw on page 11 or so was of asians. with metastatic renal cancer...kidneys. no literature exists about the effectiveness of this drug on metastatic lung cancer.
literature only exists that adriamycin (doxyrubicin) has been used for 30 years, and my particular ifex/ adria cocktail has failed at this for ten.

here is what I read about sominex...I mean, sorafenib...in this study:

Radiologically confirmed complete response (CR), partial response (PR), stable disease (SD) of more than 4 months, and disease progression as best objective responses were observed in 1 (1%), 23 (23.5%), 62 (63.3%), and 12 (12.2%) patients, respectively. The tumor control rate (CR+PR+SD of >4 months) was 87.8%. The 1-year estimated PFS and OS were 58.4% and 64.6%, respectively. The median progression-free survival (PFS) time was 60 weeks (95% CI 41–79); and the median overall survival (OS) time was not reached with a follow-up of 76 weeks.

nooooooooooooooowwwwwww we're talking.

one Asian son of a gun had complete response! cancer gone.

almost a quarter of them had shrinkage

almost two thirds had no growth. that's better than I got now.

http://www.biomedcentral.com/1471-2407/9/249 if you care.

and that was a study from last year.

the median snowball stayed in hell 60 more weeks without melting.

oh, a batch of folks had side effects and had to stop. and this is out-of-its-prescription drug application.

cutting edge. up to the minute.

I say, do it! we'll all find out together.

I don't want to spoil the party, so I ain't going!

except to New York tomorrow. where health concerns, even these, will take a back seat to flippin' having fun!

comfort, and joy.

little c cancer, meet big C Christmas.








4 comments:

  1. Hello Scott, viv here... one of the worst friends a man could wish for given the track record of hit and run appearances and silences.
    Suffice to say, with deepest sincerity, when music hit this evening, it is you my heart and mind tuned in to listen for waiting to hear what brilliance would be offered. I love reading your pages here. More coming in an email... with all love, V

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  2. okay.. so when I went to post that last one.. it asked for a word verification... the word?
    ASHYT...

    How did it know that is what I was thinking?

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  3. Finally catching up on your blog this am...hope you are having a wonderful time and can't wait to play together tomorrow evening :0)
    thank you for the link to the sorafenib studies...definitely encouraging news!!!
    much love,
    Vickie

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  4. Yes!!
    We're praying for the M for MIRACLE. You are and have been a miracle already, so why NOT!
    Hope to hear you soon.
    MERRY CHRISTMAS. We love you ! Shawn & Bob

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