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#21 scuba

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Posted 18 May 2012 - 05:59 AM

Thanks for the kind words, Judy!  In answer to Janne's note, I was in fact exercising a bit the morning of the PCR test with my dogs. But not enough, I would have thought, to elevate my blood levels. I was dehydrated, however, from lack of water from air flights. The Uric acid level in my blood was actually high (still in the normal range, but right at the high level) when it was tested from the metabolic sample they took. It was much higher than what would be normal for me and I attribute it to lack of water from flying. I was quite thirsty the morning of the test and didn't drink water until after the samples were taken.

I don't know - maybe mild dehydration could explain it - but I am still disappointed that my PCR is at best flat instead of dropping further. I was hoping I could go Curcumin alone after stopping Sprycel and be the (cute) poster child for low dose Sprycel. Now I don't think that will be possible. I haven't given up the quest - but after the next test, I expect to know. It's always the next test - isn't it...for all of us.


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"


#22 Cathy

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Posted 18 May 2012 - 07:33 AM

Michael,

Hi sorry about the results but its probably just a lab variable. I'm also on a low dose of Spyrcel 50 mg due to myelosuppression. It's stays okay on low dose. My last lab was up also I can't remember the numbers now they are at home but I'm pretty sure it doubled too and my onc wasn't that concerned since not over 1 log increase and felt it was a lab variable. I'm waiting the 3 months still next apt June 14th so I'm anxious to see what its says. This is a nasty disease for sure! LOL My onc was saying about the same thing as yours he felt it was more flat and that was okay. It still bugs us and for good reason but I think your doing okay and very lucky to be on 20 mg. Hang in there.

Cathy


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 


#23 CallMeLucky

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Posted 18 May 2012 - 07:51 AM

Yes indeed it is always the next test.  I keep saying after the next test I will .....

I know how you feel my last test went to .004 from PCRu, that was a kick in the butt, and it was the second time it happened to me. 

Give it the six weeks and see what happens.  I think I've made it pretty clear how I feel about PCR tests.  I've been doing a lot of reading about them and it really is kind of ridiculous how exact we are looking for it to be when there is so much potential for variability in it.

Keep doing what you are doing, enjoy life and see what happens with the next one.  Like they say, you may have lost a small battle on this test but you are still winning the war and have a lot of artillery still in reserves.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#24 Melanie

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Posted 18 May 2012 - 01:18 PM

So happy to hear Dr Cortez is not concerned. Your experience is a great inspiration to me and I'm sure to all who suffer from mylosuppression and are trying to prove it's possible to show deep response on lower than normal TKI drugs. Thanks so much for sharing for I'm sure that's it's your experience that I've shared with my own onc that's allowed me to convince him that lower dasages can be effective and basically write my own percription.   Life is indeed good and praying for continued good test results!


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)

#25 fola

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Posted 20 May 2012 - 12:14 AM

Hi Scuba,

Glad to see that Dr. Cortes isn't too excited about the increase.  If it makes you feel any better, I bounce around too, but always stay in a lower range (i.e. borderline MMR).  I try to keep close track of what I eat.  I noticed every time I tried to add something snappy to my diet or changed what I ate with my meds (i.e. gobs of herbal tea, nutrition bars-with added calcium (I should have know better)) my PCR would bounce up and my side effects would decrease.  As soon as I removed those new snappy additions from my diet, my PCR would bounce back down again and up went my side effects.  Now this is pure conjecture on my part, but since these drugs are fairly new, I'm convinced that even seemingly innocuous changes in our diets and consumption habits can affect drug absorption rates, thus affecting PCR results.   Your detectible disease burden seems low enough that it may bounce around due to fluctuating drug absorption levels.

I can understand your frustration, but hang in there!  Hopefully six weeks from now will be better. 

Fola 



#26 Guest_billronm_*

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Posted 20 May 2012 - 12:47 AM

Michael,

   You are such a rascal! Like Marnie said I like your wife too. You definitely need someone to keep you in line. I'm sorry about your results, it's late but I'll get back to you tomorrow. Can't you take something I can pronounce? I give up on trying to say curcr(whatever) I call it cucumber, now you come up with reves(whatever) I'm just going to call it restaurant. All my life I've been teased because I can't pronounce onion, My mouth just can't work right when I try to say that word.

                                                   Take Care Billie



#27 Tedsey

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Posted 21 May 2012 - 11:08 AM

I totally understand your disappointment.  I was also hoping to hear you report "PCRU".  Well, here is to better numbers next time.  Gotta keep reminding myself that some people don't get there for years, but they get there.  If I feel mostly well on the drug, then I think I could accept popping a pill for the rest of my long life.  Grapefruit is overrated anyway.  

Here is to your long life,

Teds



#28 hannibellemo

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Posted 21 May 2012 - 07:01 PM

Michael,

I know you are disappointed but it is only one test. I was hoping that I would stay the same or, miracle of miracles, actually drop while off Sprycel - not really but it would have been exciting. instead I register a 2 log increase. We'll see what 3 months brings!

You have such a good attitude, I can't help but feel that will play in your favor.

Pat


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>





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