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#1 PhilB

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Posted 09 March 2015 - 11:54 AM

Having been happy with my three-and-a-bit log reduction for the last few years, and content that that was where I would stay, I just had my results today.  0.0021% IS.  The following thoughts occurred:

  1. Yippee!
  2. Curses, with a less sensitive lab that would have been undetectable.
  3. But it's still great.  Yippee!
  4. Hey, maybe I will make it to undetectable after all!
  5. Aaaggghhh!  I spent ages getting completely and totally relaxed with the idea of NOT getting PRCU and now I'm wanting it again!  Grumble, grumble grumble.

All the best

Phil

 

I don't know, there's just no pleasing some humans

Herodotus.

 



#2 Trey

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Posted 09 March 2015 - 03:18 PM

That is more than a 4.5 log reduction.  Many labs would not have reported a number at all.  So you get an "asterisked PCRU", aka "nearly a big fat zero".

 

Probably that sober spell you had in January.  Single malt may well be a better TKI enhancer than curcumin.



#3 Melanie

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Posted 09 March 2015 - 07:46 PM

Phil that's great news!  Your story adds hope to us slow responders.  I'm completely satisfied having finally reached CCYR, but of course deep down I want a deeper response. Congratulations on continuing to get closer and closer to PCRU. If I were you, I would just call it PCRU and celebrate the success!  Raising a glass to you!


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#4 Frogiegirl

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Posted 09 March 2015 - 07:59 PM

Yipppeeee!!!! THAT'S AMAZING:)

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#5 Antilogical

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Posted 09 March 2015 - 08:27 PM

Nice, PhilB.  Must be all that CARaMeL ice cream.


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.


#6 soundoff

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Posted 09 March 2015 - 11:51 PM

Awesome!!

#7 gerry

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Posted 10 March 2015 - 12:09 AM

Congratulations Phil.

Fingers crossed for PCRU at the next test, then let the feasting and Morris dancing begin. :)  



#8 Billie Murawski

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Posted 10 March 2015 - 12:31 AM

Great news PhilB,

I can hear the misses in the background saying "I told you so". Us women are never wrong.

As Pat would say I'm going to drink some toast to you!



#9 Marnie

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Posted 10 March 2015 - 06:15 AM

Congrats!  Great news.



#10 hannibellemo

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Posted 10 March 2015 - 06:38 AM

Very funny, Billie!

 

Congrats, Phil, I know exactly how you feel. I'm pretty sure that my next test won't be undetectible because for some reason the limit on the test was 0.006 instead of the normal 0.001. But, it was still darn nice to see that "negative" on the report!

 

This is the precise reason that I was perfectly happy with a solid MMR!  Worrying about remaining PCRU is too stressful, how do the rest of you handle it? I mean, I know Trey drinks, but what about the rest of you PCRUers?   :D


Pat

 

"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>


#11 gerry

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Posted 10 March 2015 - 05:54 PM

I've been lucky so far that I've never had any blips, touch wood.

But for others who have stopped their drug and had the occassional blip, testing time is quite stressful even though they have returned to PCRU again, old adage once bitten twice shy appplies.



#12 Gail's

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Posted 10 March 2015 - 10:07 PM

Being very new to the disease, hannibellemo, I am anxious with each blood draw and dr visit. I assume this will cool off soon since me & CML are now life partners!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#13 PhilB

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Posted 11 March 2015 - 10:10 AM

Thanks for the good wishes guys.  This was probably my least stressful set of results so far.  For the last couple of years I've been feeling fine in the run up to the results, but then had a bit of 'delayed shock' afterwards revealing that I had been subconsciously stressed without realising it.  (Grr.  This software wants me to spell realising with a Z.  When will you lot learn to spell properly?)

 

Hopefully the stressed feeling won't return if I get into a 'will I be PCRU?' mindset.

 

Either way if I stay below 4.5 log for a year or so it might be time to see how my onc freaks out when I mention the words 'maintenance dose'. :D



#14 Pin

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Posted 11 March 2015 - 10:30 PM

Ah Phil, I know the feeling - I've given up on pcru, just as I did, I broke the 4.0 log barrier again (0.013)... rats :(

 

Would love a maintenance dose...my doc is not keen though.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#15 hannibellemo

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Posted 12 March 2015 - 06:23 AM

The funny thing is I've been taking a "maintenance dose" for almost 2.5 years. Only mine is  considered a "dose reduction" because of my pleural effusion and I'm doing fine! If you had a major side effect they would probably allow, no, require this, for a period of time.

 

My onc knew that I dreaded working through another set of side effects because Sprycel was so awful for me for the first 6 months. He had no problem with trying the reduction and seeing how it went. I could always switch, or in other cases, return to regular Rxing dose.

 

Perhaps this logic could be used and see where it gets you. (Short of developing a major side effect, which Pam, Marnie and I definitely don't recommend!)


Pat

 

"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>


#16 PhilB

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Posted 13 March 2015 - 05:32 AM

My favourite author, who lived just up the valley from me, was diagnosed with early onset Altzheimers shortly before I was diagnosed with CML.  He passed away yesterday at the age of only 66.  That really puts my troubles into perspective and reminds me just how lucky we all are to have a condition which is now so treatable and how many worse things there are out there.

RIP Sir Terry Pratchett



#17 Gail's

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Posted 13 March 2015 - 12:37 PM

Philb, I'm sorry you've lost a favorite author. They're like old friends when we read what they write, what they give of themselves. Alzheimer's is a wicked disease. Robs experienced people of their knowledge and experience while in a usually healthy body that lives on.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088




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