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Slow response and questions about switching drugs


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#1 alc999

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Posted 19 September 2016 - 10:17 AM

I'm hoping for some help on what to discuss with my doctor later this week...

 

I'm 20 months in to my CML treatment, taking 400 mg of Gleevec daily (200 in morning and 200 in evening to manage side effects). I just received my latest PCR results, and they aren't what I was hoping. I am pretty sure that when I see my doctor later this week, he's going to want me to switch to a second generation drug. He wanted me to switch in February of this year when I was a year into treatment and had a PCR of 0.4. I told him then I wanted to wait 6 more months before switching. We were both happy when I hit 0.1 in May, but now in September I'm at 0.3.

 

Here is my BCR-ABL history (all international scale):

01/29/15   195 (diagnosis)

04/15/15   76

05/06/15   16

08/14/15   1.6

11/10/15   0.6

02/16/16   0.4

05/20/16   0.1

09/14/16   0.3

 

My FISH test at diagnosis was 100% (<1% blasts). I was 0% at 8/14/15 (3% blasts).

 

I'm starting to get really worried about how I'm not responding like I read others are on this board and like my doctor thinks I should be. But I'm also very nervous about the side-effects of the 2nd generation drugs. I'm only in my early 40's, and I'm worried about introducing some serious side effects into my life at such a relatively young age.

 

Any thoughts on asking to up my Gleevec dosage instead of switching to a 2nd generation drug? Or am I worrying too much about side effects and should just switch in order to try to get a better response?

 

Thanks so much for your thoughts!


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#2 mikefromillinois

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Posted 19 September 2016 - 10:49 AM

Hi alc,

 

This is just my own opinion and I'm sure other opinions will differ.

 

I think that the sooner we can beat down the disease the better.  My opinion: the longer it "lingers" in our bodies the greater the chance that it will 'take hold' or that mutations will develop.  It would seem that the latter generation drugs do a better job of beating the disease down, and typically do that quicker.

 

I was started on Sprycel and in my case the Sprycel did a tremendous job of quickly beating my CML into submission - perhaps before it had a chance to become more problematic...who knows?  I did experience a range of lousy side effects along the way, but looking back I would do everything the same if I had a chance to do it over again.

 

Good luck with whatever you choose to do.

 

Typical disclaimer: We are all different, respond differently to drugs, experience different side effects, have different treatment outcomes, and so on.  Just because treatment went a certain way for me doesn't mean it will go the same way with others.



#3 kat73

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Posted 19 September 2016 - 10:59 AM

alc999 - First of all, I know that sometimes it seems that everybody on the forum here is whizzing downward to undetectable in, like, 3 months, but that simply isn't true for most CMLers.  In fact, I think the figure for floating for years and years and YEARS at or around MMR, and NEVER getting to CMR is about 80% of us.  Over time, you'll hear from a lot of turtles on this forum.  They'll come out to play among the rabbits.

 

I was frustrated like you at about the 2-year point on Gleevec, having not quite reached MMR.  I switched to Sprycel and had a rocket boost downward initially, but it evened out and slowed down in subsequent years.  Back to slow and steady!  But for me the reason for the switch was side effects, which got noticeably better on Sprycel.  If you feel good on Gleevec, I see nothing in your history so far to indicate a need to switch, although you certainly could, if you wanted to.  You appear to have gotten a really good, swift response which is one of the biggest signs for a good prognosis.  You also have gotten a 0 FISH, which is key.  The difference between .01 and .03 PCR is insignificant, although I know just how you feel about it.  Many people hit a plateau at about your point, hovering up and down basically in the same place for months before inching downward again. 

 

Is your onc a specialist in CML?  Make sure he is aware of and follows the NCCN guidelines for management of CML, at least, if he isn't.  You are actually doing really well!


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.


#4 r06ue1

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Posted 19 September 2016 - 11:03 AM

PCR is still good but the blasts are a bit concerning.  Odd they do a FISH below CCyR.  I have always been under the impression that as long as you are not losing a log, than a drug change is not needed and if you were to lose a log, a mutation test might be needed.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#5 alc999

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Posted 19 September 2016 - 11:13 AM

Thanks everyone for the responses so far!

 

R06ue1 - My second fish was on 8/14/15, not 2016. Sorry about that. Just edited my post to fix it. I have been wondering about the blasts being at 3% at 6 months after being <1% at diagnosis. It's something I'll be asking my dr about.

 

kat73 - It does feel like everyone here drops so quick. Thanks for reminding me that that's not really true. The difference between my last two PCR's was 0.1 and 0.3 (you were off an order of magnitude) - I am worried that this is significant. My Onc isn't a CML specialist, but is a leukemia specialist and has quite a few CML patients.


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#6 r06ue1

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Posted 19 September 2016 - 12:29 PM

Don't forget that the tests are not 100% accurate, something like +/- 1/3 log so you are still within that.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#7 scuba

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Posted 19 September 2016 - 02:26 PM

CCyR and zero blasts are the gold standard for progression free survival liklihood. Until your PCR falls below 0.1, you want to continue having FISH tests to verify you are at CCyR. If your FISH shows zero, then having a PCR of 0.4 is not a big deal and staying on Gleevec is fine if you choose. Personally - I would switch drugs to get a deeper response. You don't need full dose on the 2nd generation, you could start at 50mg Sprycel, for example, and see how you respond. Again, as long as you are CCyR and minimal (ideally zero) blasts you have time to test. CML at 0.4 PCR and minimal blasts is a slow disease (i.e. chronic phase).

 

Regarding blasts - I always had some blast cells present - until - I increased my vitamin D levels to between 50-70 ng/ml from what was a low of 17 ng/ml. Vitamin D is vital for blood cell differentiation (even leukemic cells) and immune system health. Once I elevated my vitamin D level, I have not hd a single blast cell reported in my CBC. I also have not had flu or cold or any "illness" since ... It's probably just a coincidence.

 

http://www.ncbi.nlm....les/PMC3166406/

 

(disclaimer: consult with your doctor on any choice you want to make. You and your doctor have to be comfortable with the path you want to take)


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"


#8 snowbear

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Posted 19 September 2016 - 02:39 PM

My progress on Gleevec has been slow going too.  At 18 months, my FISH was 3.5% & BCR-ABL at 1.03%.  Doc wants to give it to the end of the year and switch to Bosulif if my #'s don't improve, but I'm ready to make the switch now due to side effects. 



#9 Trey

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Posted 20 September 2016 - 09:13 AM

No change would be required, but I personally would either go to 600mg daily for a while to see if it boosts the response or switch drugs. 

 

FISH is not needed below approx 1% PCR which is roughly equivalent to CCyR.



#10 alc999

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Posted 20 September 2016 - 10:01 AM

Thanks so much everyone for your thoughts. I don't expect my dr to want to do a FISH. But I know we're going to hash out what change to make with my drugs. I'm just bumming that after my PCR of 0.1 in May, I'm back up to 0.3. I really expected this result to be below 0.1!


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#11 kat73

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Posted 20 September 2016 - 11:00 AM

alc99 - My apologies for the extra zeros!  However, that particular comment remains true - there really isn't any significance between .1 and .3, either.  As others have said, only a change of a log would be attention-getting, and/or loss of CCyR.  You've had a range of advice here for whether or not to switch drugs or increase dosage, but I hope you see that the common thread is, you are doing well and do not HAVE to make a change.  Keep us posted as to your onc's response and what you decide to do. 


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.


#12 alc999

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Posted 23 September 2016 - 01:38 PM

Thanks again everyone for the input!

 

My doctor and I have decided to up me to 600 mg of Gleevec daily and see if that does the trick in the next 6 months or so. If it doesn't, I'll be switching to Sprycel or Tasigna. He also decided to run a mutation test - he doesn't really think I have a mutation, but we decided to cover the bases just to be sure.


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#13 alc999

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Posted 23 December 2016 - 11:45 AM

Update on my last post...After 3 months on an increased dosage of Gleevec (600 mg daily up from 400 mg daily), my PCR has reduced from 0.3% to 0.1% IS.

 

We also ran a mutation test in September which came back negative.

 

I'm doing OK on the increased dosage, aside from some minor digestive issues. We'll see where my PCR is in March and decide if I'm staying on 600 mg Gleevec, or switching to a 2nd generation drug.


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#14 thatguy

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Posted 23 December 2016 - 01:41 PM

Happy Holidays!
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)




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