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how/when did you get your diagnosis?

cbc primary care provider denial life doesnt stop

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#61 trailcml



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Posted 23 October 2015 - 08:54 AM

This is my first post. I've been reading and learning quite a bit from this discussion board and everyone who posts so thank you.


I received my dx this February 2015. My hema/onc was just as surprised as I was. At the time of my BMB, my WBC was 11k. What brought me to see him was a cascading series of events. It probably all started with how I felt while running. I am (was) an ultramarathoner and my Summer training was "off" at the time and there was some weirdness going on that I couldn't explain but I kept training. I then had a really bad fever for about 5 days last October and a long trail race about 2 weeks after that which I didn't finish. Not finishing that race made me go back to my Primary care provider who did some bloodwork. Turns out I had anaplasmosis (from a tick bite while running) but my basopyls were elevated so I was sent to see a hematologist. I didn't really know what a hematologist did so I looked it up and then started to think that something really could be wrong. The BMB revealed that I had CML and I started Gleevec shortly thereafter.


I've responded very well to the Gleevec with PCR's @ 0.3% and 0.03% after 3 and 6 months respectively. The fatigue and periorbital edema is really the only side effect that I have. I still continue to run and sometimes suffer through it (especially in the first 3 months of Gleevec) but I continue to think that the exercise will help me.


BTW, are there any out there that run ultramarathons or still marathon after dx? I can still run but not nearly what I want/need to due to the fatigue of the Gleevec. I would love to hear from runners who still run hard / compete after dx.

Diagnosed Age: 45

Diagnosed Date: Feb-19-2015

Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)

Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)


0 Month PCR = 20% 

3 Month PCR = 0.3% 

6 Month PCR = 0.03%

9 Month PCR = 0.019%

12 Month PCR = 0.0095%

15 Month PCR = 0.0104%

18 Month PCR = 0.0095%

21 Month PCR = 0.0038%

4/5/2017 PCR = 0.0057%

8/23/2017 PCR = 0.0096%

12/13/2017 PCR = 0.0114%

#62 snowbear


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Posted 23 October 2015 - 12:01 PM

I don't know about marathons, but I do know of one guy from a facebook group who continues his intense exercise after diagnosis.  He says he has no side effects from the Gleevec and generally feels great.  I don't think he is part of these message boards though.

#63 Judithb


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Posted 03 November 2015 - 04:36 PM

Hope everone will think this is funny.  It was to me.  My husband and I were at an outdoor wine tasting at Colonial Williamsburg.  I don't drink much but did taste four different wines, ate a little, sat down on a bar stool and promptly fainted and slid to the ground.  Luckily my husband was there to catch me.  Of course, everyone thought I was drunk and so did I, but certainly did not feel drunk, felt awful.  Emergency room blood tests showed very high WBC and there you have it.  Diagnosis took a few more days.


Looking back, I was exhausted (attributed it to age) and had a full feeling in my abdomen (attributed it to being overweight) but no other symptoms.  Fortunately I had had a blood test in March which showed normal WBC so I was really lucky to have caught it very early.  Moral:  drink more wine!!!

#64 kat73


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Posted 03 November 2015 - 07:02 PM

Thomas Jefferson would agree!

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.

#65 Trey


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Posted 04 November 2015 - 09:10 AM



It takes time, but you can get back to top form.  Exercising through the fatigue will help overcome it.  You will probably see improvement by the Spring.

#66 xGunner



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Posted 04 November 2015 - 12:03 PM

First time I have been back here for quite awhile. Just realized that it was 7 years ago that I figured out that I had leukemia.


Routine physical. WBC was slightly elevated, not too alarming. I was getting ready to head for China, my php wanted to run a couple more tests and shoot me up with some gamagoblin (something like that). I was sitting in the Minneapolis airport getting ready to board the flight to China, and I got a phone call from the doctor's office. 'We would advise you not to go to China.' Wouldn't tell me why.


I figure it out while I was in China that I probably had leukemia. Interesting trying to search for many of those related things with the heavily filtered internet. When I got back, they gave me the official word. CML, appointment scheduled with the onc in 2 weeks. Probably headed for a transplant. 


Did lots of internet research. Only 15% lasted more than 5 or 6 years. I had shared the prognosis with my boss and his boss, both good friends of mine. My boss's wife called me up with the good news- that what I had was the type that was treatable with some new drugs.


Most of the early results were documented on this board someplace. Lots of charts and graphs.I think the content has been lost with several of the board upgrades. Used to use gunner for a handle, I think that email account died somewhere along the line.


Retired from MegaCorp when I had the opportunity to go teach at the University where my wife and I did our undergrad work. Still tired, but working with students is so refreshing compared to the pressure and everything else that goes along with MegaCorps.


I have met one other person from the board, we happened to be in the same geographical area. Would be willing to host a Whine and Geeze party for others as needed. Des Moines area.

#67 hannibellemo


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Posted 04 November 2015 - 02:30 PM



It's so good to read your posts on the board again!  I had to laugh because I remember your graphs and charts and 8x10 color glossy photographs. Wait, no, the photographs were from Alice's Restaurant!  :)




Still in Mason City and I, for one, would take you up on the Whine and Geeze party. Still involved in pyrotechnics?


I've had the opportunity to meet two of our group, you and PhilB, when I was in London with a friend. (I wave at Marnie everytime I go through or fly over Colorado!) She's busy building her retirement mansion and seldom acknowledges me. We're planning a housewarming at her place, too. So, I see plenty of opportunities for get togethers!



"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#68 xGunner



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Posted 04 November 2015 - 06:36 PM

Pat- I haven't blown anything up lately, I even gave up my manufacturing license. Between college and farming there has been little time for anything else.


It looks like all reference to the excel files has been scrubbed. I will see if I can find those someplace, and repost them. The math is hard to understand and the charts seem to help some folks make sense of it.


Maybe once we get into the boring part of the winter we can put together a 'meet-up'.  Maybe late January or February.


I will try to check in once in a while.



#69 Marnie


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Posted 04 November 2015 - 08:31 PM

We are moved into the house, though the place is a wreck!  It will be Christmas before it is organized enough to let anyone in the front door.  After that. . . drop on by any time.


However, you will have to put up with some wildlife.  If only you knew the stories of mice, bull snakes, black widows, and mountain lions that we've encountered in the past month or so.  The deer come up onto the patio to chow down on my plants.  See the attached picture taken by one of our neighbors. . .

Attached Files

#70 Lisa Lisa

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Posted 04 November 2015 - 09:11 PM

After being let go from my job of 25 yrs I decided to enjoy my life more. Had a physical and bloodwork all normal in July to start off early retirement. In December around my bday - #50, my friends said I looked "off". Gee thanks friends. True I remember taking a nap which I never did, and feeling "something wasn't right". I also got a cut on my finger that took 3 wks to heel. Had some smelly breath. Came down w a sinus infection, cold and flu like feeling. Hadn't been sick in many years. All wierd stuff going on. Went to get sinus med, mentioned night sweats and my left side ache, and the dr said the life changing line "let's just do one more test, to put our minds at ease". ....SMH

Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15

     22%  5/15     0.13% 6/15   PCRU attained 9/15

Initial dose Sprycel 100 mg 3/15  Lowered 80 mg 5/15   Lowered 50 mg 1/16

Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage

Sprycel: Currently 50 mg per day - taken 10 pm


#71 PhilB


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Posted 05 November 2015 - 11:24 AM

Apologies to those who've already heard my story year's ago, but it started in Feb 2009 with a cold I couldn't shake off, and then in a meeting at work everything suddenly seemed to go dark for a few seconds and my eyes became very sensitive to light.  Called my GP who said to come right away so I took the train home and drove to the GP.  He looked at my eyes and sent me straight to the local hospital's eye clinic.  They did loads of tests including taking a blood test and asked me to come back the next day for more tests.  Next day my eyes were a little better, but the eye doctors seemed a bit shifty and said I had to go and see immunology when they were finished with me.  I figured they were going to tell me I had a virus of some kind.  Actually they told me I had leukaemia and did a BMB to find out which kind.  The doctors were pretty good, but as soon as they were out of the room the total moron of a male nurse told me I'd probably want to check my life insurance was all in order and put my affairs straight!  I couldn't drive because of the eye tests so had to get my wife to pick me up from the hospital, bringing the boys (3 and 5) with her.  I somehow managed to stay smiley and normal through the drive home and through bathing the kids and putting them to bed.  Then I made cocktails, sat my wife down and told her I had leukaemia. 

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