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#1 Dom

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Posted 16 December 2017 - 10:01 PM

I always post when new test results come in.  You can see in the signature that the results are not good.  I went from 0.06 to 0.34.  I suppose I'm not in the danger zone, and quite possibly the big picture is that I have only plateaued.  But I was really hoping for good news and I didn't get it.  It looks like cessation is completely and forever out of the picture.  Now I'm concerned that the next test will be even worse. 


Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#2 Buzzm1

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Posted 16 December 2017 - 10:09 PM

Sorry about your bad news Dom.  Hoping that your next test will find you back below MMR again.  


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#3 cmljax

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Posted 17 December 2017 - 07:42 AM

Hang in there Dom - it's not a trend yet. Also don't forget that the PCR margin of error is +/- 0.5 log, so your most recent result is barely outside of this margin..  If it turns out to be a trend, you still have options.  Will be praying for you. 


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative


#4 blueheron

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Posted 17 December 2017 - 09:35 AM

Hang in there - this spike is lower than all your previous spikes. The spikes are trending down.


DX 6/2013

Sprycel 100mg

CCR 3/2015

MMR 2/2016

<.01 IS 10/16 hopkins didn't report actual percentage

.007 IS 6/2017

<.01 12/2017 again no actual percentage but didn't see the report myself yet


#5 chriskuo

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Posted 18 December 2017 - 01:55 AM

Hope the next test moves back in the right direction.

 

You have been on imatinib for 4 years.  Many of us have had to switch well before then to stronger TKIs.

 

Depending on how things go next year, you may want to consider switching.



#6 tiredblood

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Posted 18 December 2017 - 09:43 AM

Yeah, hang in there. I echo what everyone else has said.

#7 kat73

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Posted 18 December 2017 - 10:56 AM

Dom - It looks to me like you are not securely at MMR (0.1) after 3 years of Gleevec.  I would recommend a drug switch.  If 400 and 600 of Gleevec isn't working optimally, I don't think going higher will either, and I would imagine would make you quite miserable, physically.  I was a turtle hovering around MMR at two years on Gleevec; switched to Sprycel and my numbers zoomed down right away and stayed down.

 

Gosh, though, I do know the feeling you're having.  Things will get better.  They will!  There's always something you can do next.


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.


#8 Dom

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Posted 18 December 2017 - 01:20 PM

Thanks to everyone, but I really do not have other good options. I can't move to stronger tki's because of Heart issues. I feel like I'm at the end of my rope.

I'm seeing my oncologist at 3:15 today, just a few hours from now, so I'll post what he tells me.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#9 carrie

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Posted 18 December 2017 - 02:09 PM

Dom, Look at my signature. I was on gleevec for 10 years-never reached 0 and did a roller coaster ride up and down.

I didn't know that 0.06 to 0.34 was even something to be concerned with (according to what I was used to).

Maybe now on Tasigna I will see lower numbers. 


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#10 Buzzm1

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Posted 18 December 2017 - 03:52 PM

Thanks to everyone, but I really do not have other good options. I can't move to stronger tki's because of Heart issues. I feel like I'm at the end of my rope.

I'm seeing my oncologist at 3:15 today, just a few hours from now, so I'll post what he tells me.

Understanding that you have other serious medical issues, mainly heart, that prevent you from switching to other TKIs, I still  wonder whether you might benefit from a very low dose of another TKI, i.e. Sprycel 20mg.  It seems a short-term trial, maybe six weeks, would be low risk and there might be a lot to gain.  Your CML is at a low level and it might not take a heavy TKI dose to treat it.   It might be worth a try.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#11 thatguy

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Posted 18 December 2017 - 04:15 PM

There were a couple videos that I think Kat posted a while ago, interviewing female Dr, whose name I forget. However, she stated there are 3 types of patients: those who plummet quickly in response and remain there, those who don't respond to drug(s) and those who constantly fluctuate up and down. You and I seem to be the latter. Maybe someone can refer you to what I'm referencing, it should help ease your mind.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#12 Dom

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Posted 18 December 2017 - 07:07 PM

Thanks to everyone, seriously. I saw the oncologist, and I'm amazed and appreciative how right on the money the advice was around here. Like blueheron pointed out, he said this may be just a second spike, and it's actually lower than the first spike, so it might come down again with no change in treatment. Like Buzz pointed out, he said one possibility is low dose sprycel, but he also said imatinib 800 (which I never heard of) is not off the radar. And like thatguy pointed out, he said I may just be the type of patient that bounces within a safe zone, and never gets out. So we'll see. I'm getting a new test in two months.

I'm just a crybaby. I just wish I could stop thinking about cancer for a good stretch of time.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#13 Trey

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Posted 18 December 2017 - 08:15 PM

You could try 800mg for a short stretch before the next PCR and see what happens. 



#14 Buzzm1

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Posted 18 December 2017 - 08:37 PM

800mg of generic Imatinib mesylate is a killer amount of a toxic drug.  Given a choice, I would opt for an attempt with low dosage (20mg) Sprycel.

 

Toxicity aside, if cost is a consideration, under Medicare Part D ...

name brand Sprycel 20mg would cost an estimated $4600/yr.

generic Imatinib mesylate 800mg would cost over $12,000/yr.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#15 Dom

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Posted 18 December 2017 - 09:31 PM

Trey, wouldn't that confound the results? He wants to see if the sudden spike was just along the lines of a sampling error. If the next test is low, I have nothing to worry about.

I agree, Buzz. But I think he's concerned about the pleural effusion.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#16 Buzzm1

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Posted 18 December 2017 - 09:43 PM

At 20mg, the risk of pleural effusion should be very low.  


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#17 hannibellemo

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Posted 19 December 2017 - 05:39 PM

Dom,

 

Pleural effusion affects approximately 30% at 100 mg. That means it doesn't affect approximately 70% of us. On here, you are going to hear from those of us who have been effected (affects/effects don't have time to refresh my memory on which to use when  :D ). 

 

I've been on 50 mg. since 2011 or 12 and haven't had a recurrence. They come on fairly slowly so you likely have lots of time to react before you get into trouble.

 

Just saying...

 

Your numbers to me don't look that much different over the years, I'm glad your doc was able to reassure you.


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>


#18 Trey

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Posted 20 December 2017 - 09:46 AM

Personally, I would either increase dosage or switch drugs.  Your results are in a four year plateau bouncing around MMR.  Although you are doing well enough, if it were me, I would do something else.



#19 scuba

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Posted 20 December 2017 - 10:56 AM

Thanks to everyone, seriously. I saw the oncologist, and I'm amazed and appreciative how right on the money the advice was around here. Like blueheron pointed out, he said this may be just a second spike, and it's actually lower than the first spike, so it might come down again with no change in treatment. Like Buzz pointed out, he said one possibility is low dose sprycel, but he also said imatinib 800 (which I never heard of) is not off the radar. And like thatguy pointed out, he said I may just be the type of patient that bounces within a safe zone, and never gets out. So we'll see. I'm getting a new test in two months.

I'm just a crybaby. I just wish I could stop thinking about cancer for a good stretch of time.

 

Dom - Change to low dose Sprycel (50mg) and your numbers will likely plummet below 0.01% very quickly or even PCRU. You are not as sensitive to Gleevec as others and going to 800mg is just more toxicity. It may work, it likely won't. You have had enough time on Gleevec to know. Change drugs and you will be pleased with the result.

 

As Trey said - "do something else".


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"





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