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My three year cancerversary!

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#1 mikefromillinois


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Posted 20 July 2014 - 07:54 AM

Joined the CML Club three years ago today.  Easy to remember the day - anniversary of the first moonwalk.  Went to the ER with "heart" symptoms.  Ended up getting the good news - bad news - good news.  The good news is your heart is fine.  The bad news is you have blood cancer.  The good news is that it's the "good" kind of blood cancer.


Have been on Sprycel since the beginning and it has been doing a good job keeping me at "undetectable" levels.  The side effects are crummy at times, but I have been steadily learning how to minimize and manage them.


I have visited this forum almost daily for three years.  I would like to thank LLS for providing this opportunity for all of us to share info.  And of course I would like to thank all of you for sharing your experiences.  This place has been a great source of comfort and information for me.


Here's wishing everyone continued good health and many happy days...









#2 Guest_hannibellemo_*

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Posted 20 July 2014 - 09:04 AM

Congratulations, Mike! Know what you mean about the Sprycel side effects; even at 50mg. I'm going along fine and all of a sudden something crops up. As they say, "beats the alternative", though!


Glad you found your way through to this new forum - it seems more useful than the previous though there are some downsides.


Take care and good luck!

#3 cleocans


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Posted 20 July 2014 - 09:40 AM

Congrats Mike.  My three year cancerversary was on July 7th!  I am also on Sprycel bouncing around MMR and CMR.



#4 story


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Posted 12 August 2014 - 12:14 PM

Congrats Mike, I also had a three year cmlversary on May 4 of this year. Taking Tasigna and am PCRU.

#5 winespritzer


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Posted 12 August 2014 - 05:03 PM

Hi Mike,

Happy you're at 3 yrs!

I joined in January with Sprycel and also never know what side effects will pop up but am happy to be well! 

Also happy to have found this site and all its support - just the best!


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,









0.00- 4/16-10/17


70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue

#6 Jamar


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Posted 29 August 2014 - 04:33 PM

Congrats Mike!


My journey started with heart problems too. I was having heart palpitations due to the increased coffee intake to battle that new found fatigue that was plaguing my life.


I always say Coffee saved me (actually Gleevec saved my life but coffee was my gateway drug)

#7 Marnie


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Posted 29 August 2014 - 05:30 PM

Jamar. . .that is an awesome story/anecdote.  My husband is a big-time coffee drinker.  I'll have to start referring to it as a "gateway drug." 


Congrats, Mike!  Thank goodness for TKIs, so that we can all keep celebrating these anniversaries!



#8 alexamay09


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Posted 30 August 2014 - 05:06 PM

Congratulations Mike. Really pleased for you.

#9 Floa7


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Posted 30 August 2014 - 07:51 PM

Congratulations Mike !!


Thanks for TKI's I am on Gleevec, bouncing around 0, diagnosed 1-2012


 My son is on Sprycel now and his was 0.012 yesterday. He was diagnosed 11-2011

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

#10 pammartin


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Posted 30 August 2014 - 08:02 PM

Congrats! Always a great day to read about continued success.

#11 SUE


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Posted 30 August 2014 - 09:00 PM

Congratulations, Mike.  That's great news.


I've been on Sprycel since Jan. 1.  I was on Gleevec for 61/2 months, then took a 6 week break because of very bad rash --big red blobs all over.  I started at 50mg Sprycel, went to 70mg for almost 2 months at onc's insistence.  Took a 6 day break because of weird rash on face,(onc denies it was caused by Sprycel, attributes it to starting blood  pressure med) then went back to 50.


Except for the pcr after 6 week break, it's been going steadily down.  The most recent one, on August 19, was 0.015.   The onc agreed to return to 50, but said "Let's see what happens after 3 months on 50mg).  I'm hoping that pcr goes down of course, but I  think I would settle for the same result because I'm so nervous about side effects.


The only reason I've been able to speak up and express my wish to stay at 50mg is that I've seen so many helpful suggestions on this board. 


Continued good luck to you and to all.



Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU


#12 hannibellemo


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Posted 31 August 2014 - 12:43 PM

Jamar, you made my laugh out loud with that story. Coffee was your "gateway" drug!   :lol: That's great!





"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>

#13 Jamar


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Posted 02 September 2014 - 06:19 AM

Since we're talking cancerversaries, I just celebrated my 5 yr cancercersary friday 8/29

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