Do we know what causes chronic myeloid leukemia?
#21
Posted 14 January 2016 - 05:18 AM
Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of
#22
Posted 14 January 2016 - 11:13 AM
#23
Posted 14 January 2016 - 01:51 PM
Yikes! I'm convinced that environmental factors are "causing" cancer, by one mechanism or another. Trouble is, they're all around us and in us, and there's no avoiding them all. And, with "progress" there will only be more and more. If we can last long enough, maybe humans will evolve to be able to handle them without getting cancer. But my money is not on that bet.
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.
#24
Posted 15 January 2016 - 06:32 AM
kat73, it is true that there are some factors we cannot eliminate, but when I read stories about how some company dumped some toxic chemicals and people living near the dump site get cancer, that is something we as a people can control but many just ignore it if it isn't happening near where they live which is truly unfortunate. I believe that it is the few that cause all of the problems in the world that we see today and when the majority realize this and decide they've had enough, then things will truly change (not the fake change politicians from both sides always talk about either).
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
#25
Posted 15 January 2016 - 12:10 PM
In my case I think move to Canada caused this.
I immigrate here for a better life for me and my family and turned out that after a year I was diagnosed with CML in 2011.
I was living a happy, healthy life in Europe and before immigrate to Canada we did pass all medical exams and no issues.
And I know at least 3 persons from same country (Moldova) got leukemia here... so maybe it has something to do with oil or mountains not sure...Alberta, Canada.....
Anyway that are my thoughts.....
#26
Posted 15 January 2016 - 12:38 PM
Speaking of toxic environments, hope no one lives in or near Flint, MI:
How tap water became toxic in Flint, Michigan
http://www.cnn.com/2...flint-michigan/
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
#27
Posted 15 January 2016 - 01:14 PM
Speaking of toxic environments, hope no one lives in or near Flint, MI:
How tap water became toxic in Flint, Michigan
check the graphics, keep scrolling down http://wapo.st/1RT2Ou9
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#28
Posted 15 January 2016 - 09:50 PM
#29
Posted 28 January 2016 - 03:15 PM
I blame the five rounds of antibiotics in six months for pneumonia and other issues but then again maybe that was just a signal something was wrong. It's been two years since diagnosis and I have not needed antibiotics once, then again I'm not stuck in a tax office during flu season with people coughing, hacking, and sharing pens.
DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17
#30
Posted 28 January 2016 - 10:40 PM
My take on the cause of my CML. I've had immune issues since my childhood years, which might have made me susceptible to the blasts of medical radiation I had as a child for undiagnosed illnesses (immune disorders?) . The government didn't regulate radiation then; no dose guidelines; little or no training in using radiation. (Anyone else remember when you could go into a shoe store and have the clerk radiate your feet to see your bones and estimate shoe size? Well, the incidence of leukemia among those poor clerks is now documented.)
I think my CML was triggered by a misguided and misapplied Radioactive Iodine Treatment I took orally to correct a long-term thyroid problem. This was at a well-respected Boston hospital. The RIT fried my thyroid, stopped all hormone release, and sent me to the ER. I was very ill. I remember thinking, "This is what it's like to die." I recovered, but three years later (15 years ago) I was diagnosed with CML. Today, my thyroid is totally calcified and I am monitored for thyroid cancer. I endure endless thyroid issues still. Needless to say, the RIT didn't "fix my thyroid for the rest of my life," but eliminated it and gave me leukemia. This I believe. (I wrote to the Boston endocrinologist who prescribed the RIT and told her my theory. She had pushed the treatment on me, telling me it was safe. Obviously, I did not hear back from her, although it was too late for me to sue.)
Several years ago I told my hem/onc in N.C. of this belief. He raised his brow and said "HHmmmm." When I returned for my six-month check, he told me that he had polled all 10 of his CML patients; five had also had Radioactive Iodine Treatment for thyroid disease! I've done much internet research about RIT and links to CML. You can find documentation of the link in studies done in several other countries.....but not in America. Could it be that our political/medical/pharma establishment just doesn't want to know?
Write the new Cancer Czar VP Joe Biden and tell him that prevention might be the best "cure" for cancer.We especially need to take a closer look at medical treatments for non-life threatening illnesses that involve large amounts of radiation.
#31
Posted 29 January 2016 - 09:56 PM
Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of
#32
Posted 01 February 2016 - 07:47 AM
Scary how toxic our environment has become and how most people aren't even aware of 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
#33
Posted 01 February 2016 - 09:20 PM
#34
Posted 02 March 2016 - 01:52 PM
Was reading a bit on Benzene (love Wikipedia) and found this little tidbit:
Benzene
Health effectsBenzene increases the risk of cancer and other illnesses. Benzene is a notorious cause of bone marrow failure. Substantial quantities of epidemiologic, clinical, and laboratory data link benzene to aplastic anemia, acute leukemia, and bone marrow abnormalities. The specific hematologic malignancies that benzene is associated with include: acute myeloid leukemia (AML), aplastic anemia, myelodysplastic syndrome (MDS), acute lymphoblastic leukemia (ALL), and chronic myeloid leukemia (CML).The American Petroleum Institute (API) stated in 1948 that "it is generally considered that the only absolutely safe concentration for benzene is zero." The US Department of Health and Human Services (DHHS) classifies benzene as a human carcinogen. Long-term exposure to excessive levels of benzene in the air causes leukemia, a potentially fatal cancer of the blood-forming organs. In particular, acute myeloid leukemia or acute nonlymphocytic leukemia (AML & ANLL) is not disputed to be caused by benzene. IARC rated benzene as "known to be carcinogenic to humans" (Group 1).Because benzene is ubiquitous in gasoline and hydrocarbon fuels are in use everywhere, human exposure to benzene is a global health problem. Benzene targets liver, kidney, lung, heart and the brain and can cause DNA strand breaks, chromosomal damage, etc. Benzene causes cancer in animals including humans. Benzene has been shown to cause cancer in both sexes of multiple species of laboratory animals exposed via various routes.Some women who inhaled high levels of benzene for many months had irregular menstrual periods and a decrease in the size of their ovaries. Benzene exposure has been linked directly to the neural birth defects spina bifida and anencephaly. Men exposed to high levels of benzene are more likely to have an abnormal amount of chromosomes in their sperm, which impacts fertility and fetal development.
If I were a betting man, this would be my bet.
https://en.wikipedia.org/wiki/Benzene
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
#35
Posted 02 March 2016 - 04:43 PM
Frustrating not knowing what caused it. I have never had a broken bone so no x-rays except for dental. I don't have exposure to benzene except for the small amount i might have spilled when putting gas in car of lawn mower.
I have worked in IT most of my life. So no exposure there. Unless florescent lighting causes cancer.
One day i would love to know what caused it.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#36
Posted 02 March 2016 - 05:04 PM
I suspect what causes CML to get started is present around us all of the time. We, the lucky ones, develop CML because our immune system fails to 'check' it once the trigger occurs.
Recent studies - and here is a very recent report:
http://www.medicalne...cles/304797.php
suggests that having low vitamin D predisposes one to increased cancer risk especially leukemias. We know that vitamin D is necessary to activate our immune system. Most people who are diagnosed with CML had very low levels of vitamin D. It was very true for me (vitamin D < 17ng/ml) when I was diagnosed. I have since made sure my vitamin D level is high normal. Vitamin D is no cure, but I wish I had been aware of its importance years ago. I might have avoided CML from ever taking root.
Just my opinion.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#37
Posted 02 March 2016 - 05:22 PM
Mine was 19 before diagnosis.
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.
#38
Posted 02 March 2016 - 05:23 PM
Mine was 19 before diagnosis.
Mine was 17 .... right now I maintain it around 70ng/ml.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#39
Posted 02 March 2016 - 05:27 PM
although I had ample exposure to benzene, and pollution, in my youth, radiation and fluorescent lights during my career, more than enough x-rays, and Round-up weed killer around the house, a low vitamin D level could have been the trigger for me, as I wasn't getting any sun for years prior to my diagnosis. It was 34 in Oct. after I had begun taking 2,000 IU per day.
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#40
Posted 03 March 2016 - 11:45 AM
My theory is similar to Scuba's. Toxins and radiation are in all our lives, some more prevalent than others but ever present. Cellular changes (mutations) are normal, and our body's immunity usually does its job so things don't get out of hand. I think there is a triggering event, either a non-associated illness or a very stressful event that occurred to depress our immunity and allow cell mutations to progress into something. How many of you had something very stressful occur or a major illness happen 1 to 2 years before your dx? I assume many. Regardless, it does come down to some bad luck with the silver lining of a greater appreciation for life.
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