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#1 PhilB

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Posted 07 February 2011 - 05:40 PM

I'm afraid I have liberally indulged in Scotland's finest export so I apologise for any incoherence, but my dr phoned me this evening a week earlier than booked with my PCR results which put me into an instant blind panic.  Fortunately, it was by phone rather than in person, so her habit of making small talk before getting on to the numbers didn't land her with a large dentists' bill.  Good news is it's basically stilll stable at around three and a half log - disappointing not to have improved, but still pretty good in the scheme of things.  Now does anyone know a good treatment for PTSD?



#2 Marnie

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Posted 07 February 2011 - 07:05 PM

Sounds like you've already begun the PTSD treatment.  I hear that after you finish a liberal serving of said, you strip naked and do the hula dance in your front yard.  Let us know how it goes.

(3 1/2 log sounds pretty darned good to me. . .)



#3 hannibellemo

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Posted 07 February 2011 - 09:14 PM

Good news, indeed! And in which of Scotland's finest single malts did you imbibe?

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#4 PhilB

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Posted 08 February 2011 - 09:12 AM

I'm afraid it was only blended last night rather than single malt.  I have a cold I can't shake off so I was already drinking whisky macs before the call came through.  Several more were downed afterwards to stop my hands shaking (or possibly make my eyeballs shake in synch with my hands).  Somewhat hungover this morning, but feeling better after my now traditional post-results sushi lunch.

My doctor has persuaded me to move to 6 monthly testing - which is the new standard over here once you've been in MMR for a while.  The good news is that means 6 months before I have the fun of waiting for numbers again.  The bad news is that I suspect the stress will be rather higher when it does come round.

Ho hum

Phil



#5 CallMeLucky

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Posted 08 February 2011 - 10:08 AM

I'm going to hold back on the congratulations as I can see you are not fully in the celebratory mood.  That being said, I will say "well done".  When the dust settles I think you will continue to be content with the 3.5 log reduction.  It is not PCRu, but we know the long term outlook doesn't appear to favor CMR vs. MMR.  MMR is a really good place to be.  I hope you settle back into the "interim test period bliss" and enjoy the next 5 1/2 months.

Feel better with the cold - use a Netti Pot, they really work!


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#6 John

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Posted 08 February 2011 - 12:59 PM

Hey Phil,

You had us all worried there for a second.  I'm glad you continue to do well.

Nothing better than getting good results (at least not worse results) and enjoying a good stiff drink or two...

As a matter of fact, nothing better than having a good stiff drink or two even when you're not getting results......

Any excuse for a cocktail I always say.......

John



#7 Tedsey

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Posted 08 February 2011 - 03:00 PM

Dear Phil,

I know this sounds wacky and may not be as "fun" as self-medicating with "spirits", but plunge your head (or face) into a large bowl of ice water.  The effect is thought to be similar to electric shock therapy (which still works pretty well for severe depression and anxiety).  Another, but less dramatic way is to get a large eye-mask (the kind women use to beautify themselves).  Make sure it is the liquid kind and practically frozen.  It is supposed to work also and is a bit less messy.  Tips from my therapist.  Glad to hear the numbers are still good.

Teds



#8 PhilB

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Posted 08 February 2011 - 04:49 PM

Thanks for the good wishes peeps.  Apologies to those who I know would kill for an MMR for being greedy and wanting something lower.

My cold is getting slowly better, but I was still feeling too tired tonight to go to the theatret so i sent the babysitter with my wife instead and settled back with a movie and the rest of the whisky.  I plumped for something I hadn't seen before and enjoyed it greatly, but I have to say I'm not sure I would recommend 'The Bucket List' to anyone in our position.  On the other hand, bawling my eyes out was probably as therapeutic as a session of TM.

.

There was one line from the movie that I think anyone on Gleevec will appreciate, as delivered by Jack Nicholson - 'Never trust a fart'

As Trey might say. Live long and prosper.

Phil



#9 Marnie

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Posted 08 February 2011 - 05:35 PM

Yes, I AM one of those who are envious of everyone else's PCR numbers.  HOWEVER. . .I will happily thumb my nose at those of you who still deal with the Gleevec sharts and such.  If Sprycel does what it's supposed to do, I will be one happy camper!  I feel a whole lot better than I ever did on G. . .and the only side effect is a low grade headache.  No more hand and foot cramps on the motorcycle. . .no more cheek-clenched fast-waddle to the nearest bathroom!

Marnie






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