We live in Kalispell, Montana. Which is located in the northwest area of the state. The county is Flathead county with a total county population of 80,000. As statistics go our county should have 1 CML patient diagnosed per year. Over the last three months we have met 6 people who were diagnosed here in the last year! I think it is strange and scary. My husband's oncologist told us he thinks that there has to be something here suspicious.
I think we live in a CML hotspot.
Posted 18 October 2013 - 06:09 PM
Some people know with a certainty what environmental exposure they might have had that would predispose them to such a diagnosis and many of us do not. For what it is worth, I lived in Kalispell also for about 18 months a few years prior to my diagnosis. Let us know what you find out if anything. In the meantime, I wish you well with your husband's journey.
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
Posted 18 October 2013 - 07:49 PM
The statistics are an average. Some areas will be above the line, and some below. We can only hope that some organization is tracking those locales that run higher than the average. I was taken aback when I discovered that my neighbor was also diagnosed with CML. Coincidence?
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.
Posted 18 October 2013 - 09:19 PM
Diagnosed 2005 at age 57 years. Lived outside of Indianapolis In a population of around 1 million 2011 census. In 1998 & 1999 I did a lot of landscaping and bug sprays. We moved Nov 1999. At our new home, the landscaping was overgrown, and I got poison ivy and took heavy doses of steriods for a long period of time. I found out when diagnosed that my old neighborhood we moved from in 1999, that my neighbor across the street who was also a female, a few years younger than me, was also diangosed with Leukemia. She had moved away and I could not relocate her to find out which Luekemia. Sometimes I think i got CML from spraying all the pesticides, since two of us on the some block got luekemia about the same time. But recently I went to an ortho doc who was going to give me a steroid shot and says you better ask your ocologist as steriods effect your immune system. I checked it out on the web and sure enough it named leukemia.
Some folks will say they don't care what caused it, but I just want a cure. I think if we knew the root causes, wheather it be a cancer or chronic illness, maybe it could be avoided for others. I think the medicial profes knows a lot more than they are saying, but our enviorement is so poluted and many of our drugs cause other things, not to mention the billionaire drug companies profits.
I am so thankful I finally got my doc to lower my dose of Gleevec. My GFR kidney filteration & crentine clearance is at stage 3, Now and then I get sever pain in the lower abdomen. I really believe it is from taking diurectic for a blood pressure since 199 and then add Gleevec tot he mix. I have stopped taking the diurectic a few months a go and the GRF is a little better, but not going to reverser the damage. My gall bladder removed in 2007, surgeon said it looked like a good gall bladder. The test that I took, appeared the tube from the gall bladder that carries the bile, was not working or backed up. Seems I am having the same problems with tubes to/from kidneys and filteration. I really do believe is was the diruetics, the Gleevec combination probably didn't help.
Praying I can continue to stay on 300mg Gleevec and eventually 200mg. I don't care whether or not I am PCRU as long as I stay in a low CCRY or even Hemotological. Even if I was PCRU i would probably still have a milion plus leukemia cells, so why have so much tocity to the rest of my organs and bodies, slow kill. Seems to me trading one problem for a whole bunch more, if I don't dye of CML they are going to kill off my organs. I would rather go a different route and take a low dose TKI and spare or slow down my organ damage, There is something to be said about quality of life as well. I get tired of hearing them say oh if your kidneys get worst you can always go on a dyalisi that is worse then death to me at this age 65 and CML on top of it wouldn't last long anyhow, so don't see the point in that. So low dose at age 65 years is what I am pushing for. Doc says puts me at higher risk, well so does everything from the toxic drugs and there is qualtiy of life they have foregotten about. Multi trillion dollar business that can't find cures. And everyone is asking where does all that money go????
Posted 19 October 2013 - 07:38 PM
Any Superfund sites around you? Or military sites? Superfund sites I can easily see would raise cancer rates. For some reason I can't understand, a lot of military sites also turned out to be hazardous, but what the heck they are using that is so hazardous, I don't know. What do they do? Spill fuel all over? Are spent she'll cases really that toxic?
One other thought, is there high radon gas in your area? I can't remember for sure, but I think it tends to be worse if you have clay soil.
Posted 20 October 2013 - 04:53 AM
I used to live in Fishers, IN and New Castle, IN for about a year each. I lived east side Indianapolis for about 8 years. Don't know if there is a connection. But, while in Fishers, I drank and cooked from well water connected to the house. And the whole time I lived east side, I could smell air pollution chemicals of some sort... Steel plant? or Eli Lilly?
Oddly... I know three people from Knightstown, IN (population 1500) with blood cancers. Two with CML, one with Lymphoma. The two with CML are related to each other. Mother and son.
I'm surprised to learn that Corticosteroids could be considered a cause for Leukemia. Before there was Gleevec, one of the ways they treated Leukemia patients was with Corticosteroids.
Did any of the chemicals you used have benzene in them? Though, there is controversy about this, apparently there is research that suggests occupational exposure to benzene can be related to CML.
According to one source which gave no references:
"Risk also is increased among workers exposed to some other solvents, herbicides, and pesticides. Agricultural chemicals, in particular, have been linked with an increased risk of chronic lymphocytic leukemia (CLL). In addition, some reports suggest that leukemia risk may be increased in workers exposed to dioxin, styrenes, butadienes, or ethylene oxides."
Must you stay on Gleevec? Why not Sprycel? My Onco says it is 400 times more effective. I was PCRU within less than a year since diagnosis.
Posted 20 October 2013 - 06:34 PM
We do have a lot of radon in the areas around.
Posted 20 October 2013 - 06:37 PM
Back in July 2013 I tryied Sprycel at 50mg for a few days, it was horrible, horrible, horrible. I am to bummed out to try something else they all have their demons, all drugs have toxicity, and they want to put you on a standard dose. After diagnosed and you are scared out your witts we do whatever, take whatever, but then after several years go by and you start to get organ failure, it time to lower dose, docs most docs around here won't admit it has anything to do with the Medicine especially the TKI you take,. I do believe docs in general scratch each others back. My kidney are getting bad and they just shrug their shoulder and say they are fine and to do a CT Scan would require dye which is bad on your kidneys. Well the nurse at IU Hos said not that much. The severe pain in the lower abodomen is not fun and doc doesn't want to do ct scan or anything. Am going to a Kidney specilist next Tuesday and tell him some times the pain is unbearable. And no it is no my colon I just had a scope in june. It is my kidney!!!! Due to all the meds!!!! So I might well go for the lower dose, even if at Hematological. I can think of quite a few people who have died of liver and kidney failure, probably due to long term use of medication and of course other chronic illness. But just read the labels on any over the counter drug, read the warning. The pharmacy said if you are 65 years old and have other chronic illness you should be on a lower dose, but you can't get a doctor around here to admit to that. No they just want me on a standard dose. If oncologist tries to raise my dose back up or switch I will say no, and just quite taking them. It's not worth the aggravation of all these docs and labs, and test and fighting with insurance companies and billing. I can't believe after 8 years how many billing errors there are, it never ends. I will call another billing provider tomorrow to straighten it out. It never ends!!
Posted 20 October 2013 - 06:42 PM
Kalispell has to top 5% of the cleanest air and cleanest water spots in the country.
Posted 21 October 2013 - 09:14 PM
None of those Superfund sites are near Kalispell. None listed in Flathead County at all.
The thing about coincidences is that they occur randomly.
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