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Audrey, AML/CML and Toxic Sites in America


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#1 r06ue1

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Posted 19 December 2015 - 05:24 PM

I had my three month appointment yesterday and asked about AML and told my Oncologist what happened to Audrey.  He said that it was very unusual for two people in the same household to get the same type of cancer (one CML, one AML) and that they should look at the water that they drink (benzene?).  I've always been one to believe that our environment (polluting our air, water and soil) and what we are doing to it is causing a lot more of the diseases we are seeing.  Anyways, when my Oncologist mentioned water, it reminded me of something I had read about five years ago.  

 

Not to far from where I live, perhaps 25 miles, a housing community was built there in the 50's.  After many years the residents discovered an unusually large number of people were being diagnosed with cancer.  After many, many years (I think it was actually three decades), the EPA discovered the source:  At some point in the past, perhaps the 30's, that site had once housed a chemical dump.  The containers which held the chemicals had began to leak over time and cancer-causing toxins were emerging from the ground.  The EPA cleaned it up about five years ago, pulling hundreds of 55 gallon drums of toxic chemicals from the ground in the area.  How many people died of cancer due dump over the many decades of living there?  How many more homes are built on toxic chemical dump sites in America?  

 

Another site not far from my home, was also once a dump and is now a soccer field for kids.  This is something I know from growing up in the area.  

 

Scary isn't it?


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#2 Buzzm1

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Posted 19 December 2015 - 06:32 PM

snip

 

toxic chemical dump sites in America?  

 

 

more than we can ever imagine ...

 

benzene, one of the main chemical byproducts that comes from "cracking" coal in the process of creating coke .. a very high temperature burning fuel used in the steel making process .. 'cracking coal' also produced naphthalene and toluene, along with whole host of other known carcinogens.  My hometown had the largest coke works in the world at that time, as part of a large U.S. Steel plant on the bank of the Monongahela River; my father spent 35 years in the Benzoil plant as the Coke Works was called at the time.  

 

the chip-making industry is/was guilty of mishandling very dangerous chemicals .. had a 6'4" 250 lb. neighbor that handled these chemicals, in Signetics Receiving, day in, day out ... can remember him talking about leakage and spillage ... he weighed about 100 when he died an agonizing death about five years later, with protruding steel rods supporting the areas where his bones used to be

 

Also, where Fairchild, one of the early players, had their first plant, in South San Jose, a housing tract was built in the early 60's, where cancer became common place ... the people sued the corporation which took many years before they finally won.


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


#3 Noodle

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Posted 20 December 2015 - 12:00 AM

Audreys death from AML had been on my mind as well. As an AML survivor nearing three years treated with chemo only, I must say I was pretty shocked at how long it took to DX her and then treat her. I was getting chemo within 24 hours of my BMB. It was also shocking that her husband has CML.

Although right after I finished 10 straight months of chemo, my dear brother was DXD with NHL. 2 blood cancers in the same family??? What is our common denominator? Our parents were chain smokers using cigarettes as insence around the house; -).

Second hand smoke is a huge source of benzine.

http://m.cancer.org/...rkplace/benzene

http://www.ncbi.nlm....les/PMC3447593/

Blessings,

Julie

DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT

Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.

Qrtrly PCR & Phlebotomy for high iron stores

Almighty God is my redeemer and HEALER!!@

Psalm 103:1-5 — "Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..


Mark 10:27 (New Living Translation) — Jesus looked at them intently and said, "Humanly speaking, it is impossible. But not with God. Everything is possible with God."


#4 Tedsey

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Posted 23 December 2015 - 01:52 AM

My parents were extremely heavy smokers too.  However, no one else in my family has come down with cancer.  Perhaps they have hardier DNA.  I was not of the same gene pool (adopted).  I am so sad to hear about Audrey.  It happened so fast.  I am so pissed no one can come up with at least one cure for one blood cancer (sans poisonous chemotherapy or lifelong drugs).  With the exception of TKIs, the medical community has moved very little from the past.  I hate cancer with every fiber of my being!  I wish it didn't exist in any form.  And this is all a nightmare I will wake up from to find, with a heavy sigh of relief, that everything is OK.



#5 Billie Murawski

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Posted 23 December 2015 - 02:41 AM

I am so heartbroken about Audrey, She was the sweetest kindest person and had the loveliest family, I got to know her a bit and we would e-mail back and forth occasionally, I'm really having a hard time accepting this,  Has anybody e-mailed Greg and Victoria and told them if they have any problems  or questions they have about his cml all they have to do is get on this board and we will help them any way we can. I guess it's a good idea for all of our spouses to know how to contact us.   Billie



#6 Floa7

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Posted 23 December 2015 - 11:38 AM

My son and I were both diagnosed with CML around Jan 2012. He does live with me, he is now legally blind. Within 6 months the 16 year old boy next door was diagnosed with AML and a 78 year old man with CML within  5 houses of me. He did pass away. We are on well water, live in farm fields, with plenty of industrial factories near by. The man was a deacon of church, no smoking. The 16 year old never smoked or had second hand.


1 2012 CML detected Started Gleevec 400 mg

In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto

2 2015 Tasigna 600 mg/day

I have been PCRU for 2 years and stopped Tasigna 4 7 2017

5 8 2017 results 0.008

5 30 2017 results 0.028 

6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1 

 

My son

11 2011 CML detected Started Gleevec 400 mg

He went 2 1/2 years on gleevec and lost PCRU

Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0

He went back onto Sprycel and now is PCRU again

3 16 2017 results 0.008

6 1 2017 results 0.002


#7 r06ue1

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Posted 30 December 2015 - 06:56 PM

Scary stuff Floa7

 

I get my water from the city but still makes you wonder what is under our homes and in our water.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg





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