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According to this article ..... Who was raised in a house where your parent/relatives smoked?


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#1 CML2012

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Posted 25 July 2015 - 02:49 PM

http://m.cancer.org/...ce/formaldehyde

After reading this article I feel like second hand smoke could play a big part in CML?

Your thoughts?
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#2 Marnie

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Posted 25 July 2015 - 03:42 PM

Not me . . .smoke-free houses my entire life.



#3 kat73

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Posted 25 July 2015 - 04:08 PM

The only chemical I've ever seen referenced for causing CML is benzene.  Here's what the American Cancer Association  (Society?  forget where I wrote this down from) says:

 

"Cigarette smoking and secondhand smoke are important sources of exposure to benzene.  Cigarette smoke accounts for about half of the US national exposure to benzene.  Benzene levels in rooms containing tobacco smoke can be many times higher than normal."

 

Also:  "Benzene is known to cause cancer, based on evidence from studies in both people and lab animals.  The link between benzene and cancer has largely focused on leukemia and cancers of other blood cells."

 

Both my parents smoked unfiltered cigarettes, a couple packs a day, the entire time I was growing up, from a baby, on through college, home visits, holidays, vacations, around my children, etc. until they died.  Both died of cancer - prostate and esogphagus, one in his sixties, the other in her eighties.


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.


#4 rcase13

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Posted 25 July 2015 - 04:38 PM

My dad smoked a pipe constantly through out my entire life. He wouldn't even open a window in the car.

But I thought Trey said awhile back that there was no link to CML. Who knows.

Crazy that none of us have anything in common except bad luck. I've have a life time of bad luck. Maybe bad luck causes cancel.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#5 gerry

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Posted 25 July 2015 - 06:33 PM

I would think there would be more cases of CML if it was related. http://www.wpro.who....ts/tobacco/en/ 



#6 Trey

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Posted 25 July 2015 - 06:53 PM

Actually there is no clear link between CML and benzene, even though there is a clear link to AML, ALL, and CLL leukemias.

 

Many studies have tried to show a link but failed.  Recent studies have again shown an insignificant correlation between CML and benzene (1% increased risk -- practically zero). 

 

And people who smoke do not seem to get CML at increased levels, so second-hand even less so.  I detest smoking, but there simply is no link. 



#7 Buzzm1

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Posted 25 July 2015 - 08:14 PM

It's good that there isn't a relationship between second, or first-hand, tobacco smoke, let alone a benzene connection; I grew up in household of smokers, was a smoker myself, and my father spent 36 years employed at the largest coke mill in the U.S., at the Clairton, Pa. U.S. Steel Benzoyl Plant, part of the U.S Steel Mill.  Cracking bituminous coal, in the production of coke, used to generate the high heat in the blast furnaces in the steel making process, produced a whole host of by-products, all carcinogens, toluene, benzene, naphthalene, to name a few. Of course, at the time, little, if anything, was known about carcinogens .. but we all knew enough not to eat the snow which usually developed a black coating on top, after a day, or two. The huge smoke stacks of the mill belched 24/7 and the quencher, used to cool the rolled steel, was acid rain if you drove by the mill.  


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#8 CML2012

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Posted 25 July 2015 - 08:57 PM

What caught my attention was the formaldehyde in tobacco and the connection the article was making to formaldehyde and leukemia. It even stated that they felt there was a particular connection to those with myeloid leukemia.
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#9 chriskuo

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Posted 26 July 2015 - 02:04 AM

As far as I know, the only proven causal link to CML is the bombing of Hiroshima and Nagasaki.

 

The incidence of CML is so low that if there are "causes" they are likely only causes to a very small % of people exposed to the "cause".

 

Cars and guns kill a lot more people than CML (in total and % wise) in the US but most people don't treat cars and guns as a "cause" of serious injury or death.



#10 hannibellemo

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Posted 26 July 2015 - 10:53 AM

My mom, who died of lung cancer at 68, smoked 2-3 packs a day my entire life. My dad smoked much less. I may be wrong but I thought that smoking numbers were on the decrease, but last I read, CML numbers were holding steady.

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>


#11 pammartin

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Posted 26 July 2015 - 11:50 AM

I grew up in a household full of smokers.  I can remember as a younger child going to school with nice clothes but my classmates would often comment or be cruel because my clothes smelled of smoke.  That is probably the reason I am an avid non-smoker to this day.

 

I also tried to link the smoke to the CML, only I think I was doing it because I still had residual childhood anger over the teasing of my classmates.  I could never find anything linking it to CML.



#12 kat73

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Posted 26 July 2015 - 05:22 PM

Trey - I'm relieved to be corrected! 

 

Buzz - HOLY COW!!!  How did anyone make it out of your town in one piece? (Don't take this the wrong way, please.  I love PA.)


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.


#13 pammartin

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Posted 26 July 2015 - 07:43 PM

Buzz, I knew those stacks well.  From PA also. 



#14 CallMeLucky

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Posted 26 July 2015 - 07:55 PM

My parents as well as my aunts and uncles were all big smokers, but of my siblings and cousins I'm the only one who got CML, so in my small study I would say if smoking was related there must be more to it.
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%
 

 


#15 Buzzm1

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Posted 26 July 2015 - 09:03 PM

 

Buzz - HOLY COW!!!  How did anyone make it out of your town in one piece? (Don't take this the wrong way, please.  I love PA.)

kat - I relocated to what became the Silicon Vally when I was 18; took me decades to get rid of the residual sinus problems. PA has some beautiful country.

 

Buzz, I knew those stacks well.  From PA also. 

 

Pam - that area of PA was a great place to grow up despite the pollution at the time, and it still has a lot of great qualities that aren't found here


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#16 Antilogical

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Posted 27 July 2015 - 04:29 PM

Buzzm - Some of my favorite workdays were spent at the Clairton and ET plants.  Now I'm mostly working downtown - er - DAHNTAHN.  I miss the free parking....

 

BTW - I'm skeptical about any link between CML and smoking....


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.


#17 Trey

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Posted 27 July 2015 - 04:53 PM

Went dahntahn to see the Stillers play Worshington and wound up meetin' yunze gize who hadn't et yet so we had sammiches and Iren City near the pahrk.



#18 Antilogical

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Posted 27 July 2015 - 06:09 PM

Rilly? Get aht!  Were they Primanni sammiches with fries n coleslaw n 'at?


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.


#19 pammartin

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Posted 27 July 2015 - 06:50 PM

Hey!  I was dahntahn today. I stopped at Primanni's for a sammich with slaw



#20 Marnie

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Posted 27 July 2015 - 07:03 PM

Interesting accent from a dude who lives in Texas. . .






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