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WSJ Article on Life Saving Medicine Side Effects - Gleevec Mentioned Prominently


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#1 hannibellemo

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Posted 15 September 2009 - 02:19 PM

Thought this was interesting - anyone post on Life Raft?

http://online.wsj.co...1106176098.html

Pat

Was surprised to hear the author say she had experience with Gleevec, taking it for a few months for a relapse of CML after a BMT. A few months?

Also, the woman taking 1,100 mg per day? No wonder she has side effects!


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>


#2 Trey

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Posted 15 September 2009 - 03:58 PM

Liferaft is a support group for patients with gastrointestinal stromal tumors (GIST), another disease that Gleevec helps treat.

http://www.liferaftgroup.org/about.html

For CML patients, Gleevec works by inhibiting BCR-ABL, but it also inhibits an enzyme called KIT, which plays a big part in the growth of the cells lining the intestines (where a GIST forms).  So Gleevec can be used to treat GIST tumors since it inhibits KIT.  This inhibition of KIT is not a good thing for the rest of us, since it is believed to be the source of our bowel troubles (also known as explosive bowels, or the "Sharts" -- a word invented by one enterprising member on the previous L&LS Board).  Speaking of which,  I think Novartis would Shart a brick if they knew anyone was taking 1100mg Gleevec per day.  Definitely not authorized.  Yikes!!!



#3 MomMom

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Posted 15 September 2009 - 04:16 PM

Trey, CML nor GIST are laughing matters, but you supplied the best laugh of the day.  IS that woman serious?  I couldn't leave the house on 1100 mgs of G! It's bad enough dealing with 400!  You might as well lock me in a 6X6 cell with cot and essentials!  It would be the same as jail time on more G.



#4 hannibellemo

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Posted 15 September 2009 - 05:05 PM

Trey,

You really need to post a warning when you are about to make a funny...snorting water out my nose is painful and does nothing for my keyboard! Shart!

What about the author who only had to take Gleevec for a few months because of a CML relapse after a BMT? Is there such a thing as a temporary relapse?

MomMom,

Didn't take the time to check out liferaft.org thanks for the update. 1100 mg?! Surprised she has any intestines left.

Shart, shart, shart - don't you just love the way that sounds?

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>


#5 Trey

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Posted 15 September 2009 - 08:22 PM

Pat,

Your question:

"What about the author who only had to take Gleevec for a few months because of a CML relapse after a BMT? Is there such a thing as a temporary relapse?"

Often a news story does not give enough info.  But if the CML was still there after the BMT, then the BMT did not cure the person, so generally  Gleevec would be required on a continuous basis after that.  The exception would be if there is a delayed response whereby the donor cells create a delayed "battle of the cells" and the donor cells eventually take over completely and cause the remaining leukemic cells to die off.  But the news story creates a false impression that Gleevec can be taken for a short time and somehow result in a cure for BMTs that "fail", which is not accurate.  Remember also that the way the person would be tested to determine a cure  is a PCR, and we all know that it cannot detect a low enough level to actually determine that a cure has occurred.  Maybe she took Gleevec for a while and became PCRU, and that status could last for months, even without treatment.  Is she still being tested by PCR, I wonder?  Hopefully.



#6 Barbiedoll22

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Posted 19 September 2009 - 12:23 AM

Yikes is right! True, these are not matters to be laughed at, but shart sure is funny! And as we can all attest..............shart happens!

Barb

(I couldn't resist!)



#7 PhilB

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Posted 24 September 2009 - 10:25 AM

Persons of a delicate nature please look away now...

I loved the 'shart', but although the etymology is clear it's been bugging me as to what precisely it means.  Are we talking:

a) When you're expecting just gaseous effluxions and get more than you bargained for; or

B) When you are expecting something at least vaguely solid, but it turns out to be accompanied by so much gas that you blow the cistern off the wall and the recoil leaves you halfway out the bathroom door?

Oh the joys of Gleevec.



#8 Trey

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Posted 24 September 2009 - 11:28 AM

Neutro-Phil,

After a little research, I found the following scientific explanation to help satisfy the morbid curiosity of your inquiring mind:

Sharts are any mixture of gas and efflux, with gas serving as the propellant.  They are measured using the Fujita Scale, which is best known for categorizing tornadoes:

F-Scale NumberIntensity PhaseWind SpeedType of Damage Done
F0Gale Shart40-72 mphSome damage to chimneys; breaks branches off trees; pushes over shallow-rooted trees; damages sign boards.
F1Moderate Shart73-112 mphThe lower limit is the beginning of hurricane wind speed; peels surface off roofs; mobile homes pushed off foundations or overturned; moving autos pushed off the roads; attached garages may be destroyed.
F2Significant Shart113-157 mphConsiderable damage. Roofs torn off frame houses; mobile homes demolished; boxcars pushed over; large trees snapped or uprooted; light object missiles generated.
F3Severe Shart158-206 mphRoof and some walls torn off well constructed houses; trains overturned; most trees in forest uprooted
F4Devastating Shart207-260 mphWell-constructed houses leveled; structures with weak foundations blown off some distance; cars thrown and large missiles generated.
F5Incredible Shart261-318 mphStrong frame houses lifted off foundations and carried considerable distances to disintegrate; automobile sized missiles fly through the air in excess of 100 meters; trees debarked; steel re-inforced concrete structures badly damaged.


#9 PhilB

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Posted 25 September 2009 - 04:36 AM

Whoops!  There goes the neighbourhood.






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