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Dear Trey - 21 December


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#1 PhilB

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Posted 19 December 2012 - 04:31 AM

Dear Trey,

Sorry to contact you via this forum, but the email address in your literature is rejecting all my emails.  You also appear to have mis-typed your phone number as when I called it I was put through to the San Antonio Zoo who had no record of you.  They did seem to know your business partner, Mr G. Raff, but refused to let me talk to him.

I am getting very concerned about the delays in the delivery of the anti-apocalypse survival shelter I purchased from you.  According to the DHL website, a package from you has finally been despatched, however they are quoting a delivery date of 22 December!  They are also listing the package size as 50cm by 30cm which seems on the small side for a $50,000 fallout shelter.  Is it some kind of flat pack?  Will I need any special tools to assemble it?

Can you also clarify the arrangements for pickup by the Altantean space module.  Will my tickets be coming by post of by email? Do I need a passport?  Is the baggage allowance in pounds or kilos?

I must sign off now as I have to cancel the milk and newspapers. I look forward to hearing from you shortly.

Phil

PS thank you for your earlier delivery of your patented asteroid-proof hat.  I have been wearing it religiously since it arrived and I am pleased to report I have not been hit by a single asteroid since! 



#2 Trey

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Posted 19 December 2012 - 10:00 AM

Proof once again that drinking and posting don't mix.  I am aware that your pet squirrel Herodatus has been in rehab for several weeks now, and he has informed me that as soon as he thinks he is making progress, he is sucked back down into the abyss when he rejoins you.  However, I will attempt to answer your customer service concerns.

As for the anti-apocalypse survival shelter, we have prioritized shipment to those deemed "worthy of continuation" according to the strict guidelines of the lost book of Mayan Feng Shui Scatology.  I regret to inform you that your name fell below the cut line.  So the smaller anti-apocalypse survival shelter has been sent sized for one small squirrel.  Herodatus will be needed in the Second Mayan Dumb and Dumber Big Adventure.  I have also enclosed a squirrel sized asteroid-proof hat at no extra cost.

As for your disparaging remarks about the San Antonio Zoo (aka SAZOO) [note to Sneezy -- don't try saying this] we plan to celebrate our 100th year in 2014 despite  Mayan  prestidigitators. 

http://sazoo.org/animals-and-exhibits/

Kindly direct all future correspondences to Ms Go Riller of my aforementioned establishment.



#3 PhilB

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Posted 19 December 2012 - 03:26 PM

Hang on a minute, I'm sure your promotional blurb said you were an expert in eschatology not scatology.   And if I don't survive the apocalypse who's going to be the back end of the moose the next time we need to cheer Marnie up?  Herodotus's legs aren't long enough.



#4 Marnie

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Posted 19 December 2012 - 06:58 PM

My survival shelter arrived promptly, and at a discounted price.  Did you forget to check for a groupon??  I've tested the shelter (without the asteroid hat), and it's pretty roomy.  The moose and I both fit well.  I was a bit concerned when the buffalo showed up, but as long as I keep them separated, we are making do nicely, though I do find myself wondering if that buffalo will ever be accepted back into the herd.



#5 Antilogical

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Posted 19 December 2012 - 09:12 PM

Dearest Forvm Friends,

The time is nigh.  Neigh.  Nay.  I have read and re-read these posts in order to absorb the wisdom that will save me from the Wrath of Mayans.  Unfortunately, I was unable to "ferret out" any meaningful information, more's the pity.

However - all is not lost.  I happen to be a loyal and trusted volunteer at a local wildlife rehab center.  On a hunch, I consulted with "Twitch", educational squirrel, wildlife ambassador extraordinaire, and part-time zumba guru.  I sat at his tiny little squirrel feet.  I looked into his beady little eyes.  I meditated.  I "Ohm'd".  Then he imparted these words:

Don't bite the hand that feeds you.  Then he bit my hand.  I think I learned something, but I'm not sure what it was.

Anyhoo, Twitch says: "Thanks for the hat".


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#6 hannibellemo

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Posted 20 December 2012 - 07:10 AM

Toto, I think we're back in Kansas and the Tin Man, Scarecrow and the Lion are here, too!

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>


#7 PhilB

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Posted 21 December 2012 - 06:30 AM

Hmm.  Well I don't call that much of an apocalypse.  Possible explanations:

  1. The world WAS destroyed, but was instantly replaced by another world EXACTLY THE SAME;
  2. The whole thing was complete bunk whipped up by new age loonies and cynical survival shelter salesmen;
  3. The world SHOULD have ended, but didn't because I accidentally broke something when I had an illegal party on top of a Mayan pyramid back in 1991.  (The party bit is actually true - a few of us hid in the jungle at Tikal in Guatemala until the guards all went home then drank rum and danced to a Blues Brothers tape on top of the pyramid before sleeping up there overnight)

So the question is, how do we let Marnie (and the moose) know that it's safe to come out??

Phil



#8 Trey

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Posted 21 December 2012 - 10:07 AM

I know how to entice the moose out into the open.  You and I will dress up as a buffalo.  You will be the back end.  I assure you that Marnie will come out to watch what happens. 



#9 PhilB

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Posted 21 December 2012 - 10:18 AM

Not again!  Last time I was walking funny for a month!



#10 Trey

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Posted 21 December 2012 - 11:23 AM

Herodatus just emailed me a picture.....I don't think we all made it through the Mayan Scatological Apocalypse unscathed......

Philsquirrel.jpeg



#11 Guest_billronm_*

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Posted 21 December 2012 - 05:27 PM

Hi Pat,

  I think we are way past Kansas, & Oz, I'm afraid we're entering unchartered territory filled with mooses, and buffalo, and the natives are getting restless!                                           Billie



#12 Marnie

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Posted 21 December 2012 - 06:48 PM

That is the best laugh I've had since August.  Thanks, guys. 

I'll pop some popcorn, make an oversized margarita, and watch the show when Trey and Phil show up in costume.  . 



#13 hannibellemo

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Posted 22 December 2012 - 08:44 AM

Marnie,

I'm sorry to hear you have been miserable! I really don't want to get serious on this thread because I have so missed the camaraderie; there is just no one else who can riff off each other (and everyone else) like Phil and Trey!

But that said, are you still taking 100 mg. of Sprycel? I would talk to my onc about stopping Sprycel for a week or two and then reducing to 50mg to see if that helps with your arrhythmia. There was an interesting thread on newcmldrug.com about the cumulative toxicities of Sprycel for some. If I can find the post I will send it to you for review.

I have done well on 50 mg.; almost back down to MMR, (.2%) even at my tortoise pace.

Happy Holidays!

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>


#14 hannibellemo

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Posted 22 December 2012 - 09:00 AM

Marnie,

Search www.newcmldrug.com by Leah. She is Dr. Druker's patient and has been on Sprycel for 6 years. Dr. Druker told her when she developed problems with some similarities to yours that "Sprycel is the only TKI where patients can be going along smoothly and then suddenly develop a side-effect crisis". Another thread to look at is "Next Steps" and work backwards from there. Good luck!

Pat

P.S. I just saw where you had posted to Leah on "Next Steps" so you are aware of her problems with Sprycel. Just wanted to remind you of the thread.

Message was edited by: Pat Otto


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>


#15 PhilB

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Posted 22 December 2012 - 12:52 PM

Hi Marnie,

Really sorry that you've been having a bad time. Re the heart issues, are you sure you weren't in the middle of telling Billie your age when you were having your tests?  Those ECG machines are one of the key parts of a polygraph after all.

May you have a joyful and relaxing holiday away from the pesky kids and a happy and healthy 2013



#16 Marnie

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Posted 22 December 2012 - 08:59 PM

Actually, the arrhytmia started when I thought I saw you and Trey in costume.  I walked over to say hello, but the danged thing turned out to be an angry moose.  Some squirrel had run off with his asteroid hat, and he was steamed!  I went in to Urgen Care today and got a script for some antibiotics.  I think my month-long cold/flu had turned into a sinus infection.  I'm feeling better already.  And on vacation from work, to boot.  Things are looking up. 

A number of my students couldn't figure out why the world hadn't ended.  Then one intelligent student piped up that the world really HAD ended and that we were all in heaven!  I guess maybe it felt like heaven because I gave them the week off from homework (no, not because I was being nice. . .because I didn't want a pile of papers to grade while I was on vacation!).

Happy holidays!

Marnie



#17 Trey

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Posted 28 January 2018 - 09:36 PM

Oldie but goodie.....



#18 kat73

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Posted 29 January 2018 - 10:53 AM

A loss to the literary world.  I'm not even joking!


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#19 Red Cross Kirk

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Posted 29 January 2018 - 11:04 AM

A loss to the literary world.  I'm not even joking!

 

All is not lost! :) :P ;)  I've copied this over to the new forum.  It's not pretty and a little harder to read, but I figured since we're being told only "up to" three years of posts will be save that I would copy it over to the new forum.  Maybe if we each copied and pasted what we don't want to lose here, at least it may live on with the new format?


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%


#20 hannibellemo

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Posted 31 January 2018 - 08:16 AM

I wish I could find the riff where we first started talking about invisible/imaginary friends. I loved that one! It started in a post about depression, I think, but I'm having no luck finding it.


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>





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