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Your CML Diagnosis


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#1 August1

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Posted 06 September 2013 - 01:53 PM

Hi everyone,

One year ago, being diagnosed with CML at age 42 was a major shock for me. For my part I had always been very active, lived an outdoor lifestyle, and was in good shape. Leukemia was the absolute last thing on my mind and it came totally out of left field.

Prior to my diagnosis I had been complaining of fatigue and headaches for some time. At one point I thought I had Lyme disease and was treated with antibiotics. I also had blood work done which was normal at the time. One interesting thing is that during the course of that treatment I also had a CT scan (contrast) done  of my neck. I completed that treatment but nine months later I was diagnosed with CML (WBC of 240,000). I have been concerned that CT scan somehow caused the CML. I am also now concerned as I just had another CT scan done of my abdomen in connection with some GI issues (came back normal).

What were your symptoms at the time of your diagnosis and have any of you also undergone medical procedures such as CT scan or angiogram prior to, or after, your diagnosis?



#2 mariebow

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Posted 06 September 2013 - 02:44 PM

I was diagnosed with CML 2012,but actually had it at least a year before diagnoses,because of my wbc being high the year before dx, I have had several Xrays because of my first pulled muscles years ago,had a CT scan, have had MRi's also, I always wondered if being exposed to Xrays could have caused it.  And with my ribs being injured a year ago and my hip joints problems I have had X rays.



#3 CML2012

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Posted 06 September 2013 - 08:47 PM

I was 42, in good shape, semi active and working full time when CML came out of left field. I went in for a well visit and ended up in the hospital. I had not had any scans in five years. I don't think we will ever know what causes this disease.


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)

#4 Cliffee

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Posted 06 September 2013 - 08:49 PM

Ive got a story for you!

I too was in perfect health. Never drank, smoked, very athletic my whole life. Always ate healthy. No history of any kind of cancer in my family.

In 2008 I had an arthrogram and some x rays on my right shoulder for a torn labrum. In 2010 Had the same done on the left, again for a torn labrum. Dx'ed with CML almost exactly one year later in July 2011 at the age of 44. Shocked me, my family, and friends. I don't know who many have said, "you're the healthiest person I know" how could this be!

I am damn sure these tests and all these friggin x-rays are the cause of my disease! Unfortunately, I know of no way to prove it.



#5 LivingWellWithCML

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Posted 07 September 2013 - 07:20 AM

Hey @Wespahr,

Yes.  I was diagnosed with chronic phase CML at the end of March 2011 -- got the "report to the ER immediately!" call from the doc on a Saturday afternoon about 3 hours after running a 5K road race with my kids.  WBC = 155,000 at diagnosis that afternoon.  Spleen size was normal.

1. Symptoms - Starting around November 2010, my runs started becoming slower and with increased breathing.  Also around that time, I had occasional night sweats.  At the time, I was in the middle of a work engagement that had me traveling from the east coast to west coast USA, so I was taking a Friday red-eye flight back home every other week and would be pretty short on sleep on the weekends.  I really thought that the night sweats were nothing more than my body hitting the reset switch from jet lag.  I visited my primary physician at the end of 2010 and complained about my slower running, but he examined me and sent me home with a "you're getting into your 40s, so your running is going to get slower" explanation (?).  In January 2011, I started getting a "whoosh, whoosh" sound in my right ear that wouldn't go away, so I went back to my doc again and he suspected fluid around my eardrum and prescribed a simple nose inhaler.  I tried that until the middle of February 2011, but the sound started getting a bit louder as the weeks progressed.  Then, around early March, I started getting that "whoosh, whoosh" sound & sensation throughout my head, and my running continued to get slower.  I also had moments where that sensation in my head would make me a little dizzy (?).  The last straw was when I tried to do a speed workout at the track one weekend, and I found myself keeled over and completely out of breath after struggling through 4 laps.  Each morning, I also started to get an extended-hangover feeling that didn't seem right, so I visited my primary doc yet again!  At that point, in late March 2011, he finally decided to do some bloodwork as a precaution - this was on a Thursday morning.  Then we got the fateful call on Saturday morning.

2. CT scans, etc. - Yes.  I had an abdomen CT scan without contrast in late May 2011 after having some very painful symptoms in the area that freaked me out.  I had only been on Gleevec 400mg for about 6 weeks, so the symptoms were either related to my body adjusting to the TKI, or perhaps stress/anxiety - or maybe both.  I have also had several X-rays and two MRIs of my left ankle over the past 15 months because of a nasty running injury that required surgery at the end of July 2012.  Once my bone marrow started recovering with TKI treatment, my running started speeding back up dramatically and it was awesome .... well, until I messed up my ankle.  So despite the CT scan and MRIs over the past 2-1/2 years, I reached CCyR and a comfortable MMR over the first 9 months of Gleevec 400mg and have maintained it ever since.  My next PCR test is next month (I'm on a 6-month testing cycle), so hopefully that's still the case!

Hope this is helpful -

Dan


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#6 August1

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Posted 07 September 2013 - 08:53 AM

Hi CML2012,

Just curious, when you say you had not had any scans in 5 years, what are you referring to? Did you have X-rays or CT scans done?



#7 August1

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Posted 07 September 2013 - 08:57 AM

Thanks Dan,

Great to hear that you've maintained MMR. Funny you mention the "wooshing." Looking back I also remember having that feeling. Would love to hear the results of your next PCR. I am sure it will be great!



#8 August1

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Posted 07 September 2013 - 09:06 AM

Hi Clifee,

Thanks for the reply. I'm right there with you. Even though they say that risk for a conventional CT is very small I agree that it is frustrating as we'll never have a way of knowing for sure. At least there are great treatments for CML which we can take advantage of and I am thankful for that. Just wish I had known the risks at the time and I would probably have avoided those scans



#9 August1

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Posted 07 September 2013 - 09:18 AM

Thanks mariebow. I am wondering about the xrays as well.



#10 chriskuo

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Posted 07 September 2013 - 11:21 AM

There are tens of millions of people who get these tests and a few thousand who get CML.

There are also people who get CML who have not had theses tests.

I would expect more progress on the treatment of CML in the next 10 years than useful progress on the cause

of CML.



#11 LivingWellWithCML

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Posted 07 September 2013 - 12:59 PM

Yeah, it was a really strange symptom, but for some reason I was never alarmed by it until I started to get that mild dizzy feeling.  Fortunately, it went away after ~ 2 months on Gleevec 400mg and I haven't had it since.  If I ever do again, then I'll know that I'm in some big trouble.

My last PCR was at the 2-yr point in April 2013; it was 0.08% International Standard.  A good-enough response for Gleevec 400mg and MMR ... but man I wish Gleevec could add another 1 or 2 zeros to the right of the decimal point.   Other than the ongoing GI stuff I have (see other thread), I've had no other visible side effects and have road cycled almost 2,000 miles with 106,000 ft of hill climbing since my April PCR.  Something *must* be going right!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#12 ChrisC

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Posted 07 September 2013 - 03:00 PM

I agree, Chris. It appears to me that perhaps it might be more helpful to look inside rather than for what outside event might have "triggered" the CML — throughout life we all get exposed to outside hazards and most of the time we are successfully armed to defeat invaders or to rebalance or nullify mistakes resulting from "something;" so why, I wonder, were those of us who developed unchecked "mistaken" / "broken" Philadelphia chromosomes unable to fix it?

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#13 CML2012

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Posted 07 September 2013 - 06:42 PM

I had an MRI on my back in 2007. I also had X-rays in 2006 on my back. In 2000 I had X-rays and my gall bladder removed. I was diagnosed in December 2012. Also I worked in a school in the same room for 13 years then moved to a new school and was there 7 and a half years before diagnosed. I am female and was 42 when diagnosed.


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)




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