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How do you check for Invironment causes for CML


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#1 Floa7

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Posted 24 August 2012 - 06:36 PM

I got my 6 month PCR test results back today. Great News. Doc said I was CMR. MY PCR was 0.1% IS.

My son gets his PCR next month, both of us have had CML for 6 months.

It is quite disturbing to find out today the 16 year old neighbor boy got admitted today in Riley's Children hosp for CML. It is just to much of a coincidence that three of us now have CML, which is suppose to be a rare disease. What  do you check or who do you call?


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


#2 Antilogical

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Posted 24 August 2012 - 06:44 PM

I've been wondering if the docs report cml stats.  My neighbor (3 doors down) was diagnosed 3 years ago, and my doctor told me that he just found another patient with cml who lives in the next township.  Hmmmm.....


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.


#3 Floa7

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Posted 24 August 2012 - 07:07 PM

When my son and I both got CML, In Jan, the onco doc said she was reporting it to Indiana Univ. Thats where my PCR is sent to be tested. I told her about the 16 yr old neighbor today and she wants to know what kind of leukemia he has.


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


#4 Happycat

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Posted 24 August 2012 - 08:05 PM

That does sound like a suspicious cluster. Do you live near any old manufacturing plants (chemicals, paint, plastics, etc.)?  Or are you near any old army depots?  They seemed to have a lot of chemicals around them.

What about radiation sources?  No nuclear dump sites around?  Or live near a nuclear power plant? 

If it were me, I'd check my basement for radon gas. I'd also want to have the water tested. The radon test isn't so bad.  They do it for home sales, and I think they have home tests that cost around $150 or so the last time we tested. The water testing can be $$$. I'd start asking the local water authorities for a water contaminant report. In MA, they send us reports every few years, generally tell us the amount of lead and other heavy metals. I think that's an EPA requirement, that they inform the public of contaminants. So you might be able to get one. All depends on whether it is a state or federal reg.

Traci



#5 Happycat

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Posted 25 August 2012 - 11:47 AM

Just a p.s.  I infer you are in Indiana since you mentioned Indiana Univ.  Not sure if the soil is the same where you are, but in many areas around the Great Lakes, the soil has a high amount of clay.  The clay plays a role in higher levels of radon gas.  Not sure the exact mechanism. 

Traci



#6 Floa7

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Posted 27 August 2012 - 05:36 PM

I live in Columbus, south of Indy. Nice sandy soil here. I wondered why my son and I both got CML. Now the 16 yr old next door, Who has lived there 5 years. We had the BIG Flood of 2008. We had to evacute our houses. When the surface water went down, it left a greasy film on our lawns. We had our water tested then, It was safe to drink. We have our own wells for water. The flood did a lot of damage in Columbus, just wonder what it washed my way? How many more people are going to get CML in our neighborhood?


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 cousineg

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Posted 27 August 2012 - 06:10 PM

See    CML causes      and        Familial Studies? Father-son possibly diagnosed with CML



#8 mark1963

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Posted 27 August 2012 - 07:40 PM

pennsylvania has a cancer registry that doctors are supposed to report all kinds of cancer, My area has a higher than normal incidence of blood disorders primarily pcv but an unusually high number of cml in a 3 county area.

the university of pittsburgh is studying this cluster.

mark



#9 Antilogical

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Posted 27 August 2012 - 07:53 PM

Which counties?  I'm in Allegheny.


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.


#10 Happycat

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Posted 28 August 2012 - 04:45 AM

I can understand the concern about what the flood may have washed your way. You might want to check the EPA website to see if there are any Superfund sites in your area. Maybe within 25-100 miles? 

The oily film can be due to many things getting into the flood wash. I would suspect gasoline or other fuels primarily, but that's just a guess on my part.

Traci



#11 mark1963

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Posted 28 August 2012 - 07:36 PM

carbon and schuykill i forget the other.

mark






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