104 replies to this topic

[kat73]

Buzzm - Got my June PCR back and it's <0.01% IS.  (For your chart.)

[Buzzm1]

Buzzm - Got my June PCR back and it's <0.01% IS.  (For your chart.)

kat73 

 

01-10-2017 cessation of Sprycel 70mg while at <0.01

 

Discussion Forum Cessation Study

[mdszj]

mdszj, assuming you have remained undetected through six months of TKI cessation, and despite not being in a trial, will you be testing every two months, for the next six months, per trial protocol?  

buzz - I just saw this post to me right now - I have my visit with the local guy next week and I will check.  But I thought he said a while back that I would test every 6 weeks for the first year.  Also next month I have my yearly visit with my specialist at Penn and will ask him as well.  More later...

[Frogiegirl]

PCRU from 06/19/2017 BCR-ABL blood work. 13 weeks on sprycel 100 mg, reduced to 70 due to low hemoglobin starting 06/23/2017

[scuba]

Hi Jessica ...

 

Am I reading your post correct. ... you went from 3.26% to PCRU in 3 months while on 100 mg sprycel?

[Buzzm1]

PCRU from 06/19/2017 BCR-ABL blood work. 13 weeks on sprycel 100 mg, reduced to 70 due to low hemoglobin starting 06/23/2017

Congratulations on regaining PCRU Frogiegirl!!

 

updated: Frogiegirl 11-08-2016 cessation attempt 

 

Discussion Forum Cessation Study

[Frogiegirl]

HEY Scoobs! actually I went from 4.1472 (final reading before start of sprycel)

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[scuba]

HEY Scoobs! actually I went from 4.1472 (final reading before start of sprycel)

 

You should consider lowering your dose to 20mg and verify you can hold your PCRU status. I suspect you are exquisitely sensitive to Sprycel given your fast response as well as low hemoglobin (myelosuppression). Your doctor should  be amenable to lowering your dose much more than your current 70mg. You may find you still have hemoglobin issues even on 70mg. I had the same problem. I was not able to tolerate 70mg Sprycel. But on 20 mg - I was able to attain PCRU.

[Frogiegirl]

I would love to do 20.....I feel like my doc is not willing to budge unless my cbc levels are really bad. I know I shouldn't vent on here but it feels like me just telling him I feel horrible isn't enough to lower my dose.maybe I'm not wrapping my head Around how great that response is because I'm still sore about the no baby thing.. ...sorry small vent.

[Buzzm1]

Floa7

 

04-07-2017 cessation

 

Cessation 04-07-2017

Detected 05-08-2017 0.008

Interim 05-30-2017 0.028

Relapse 06-30-2017 0.30

Restart 07-01-2017 Tasigna 600mg

 

Discussion Forum Cessation Study

[Buzzm1]

In summary, eight discussion forum members began cessation:

 

Four relapsed:

Cleocans: relapsed in less than two months; regained PCRU in four months

Frogiegirl: relapsed in less than three months; regained PCRU in three months

kat73: relapsed in less than two months; regained initial status in less than three months

Floa7: relapsed in less than three months; currently in process of regaining PCRU

 

Four didn't relapse:

JLS: in a world of pain at last posting; no further word since
Buzzm1: as of 07/18/2017 detected at 0.0012

mscl: undetected for three months; voluntary TKI restart

mdszj: last tested 06-05-2017; no known problems

[mdszj]

Buzzm1

 

Of possible interest - One good side effect of discontinuing sprycel is that my synthroid dosage for hypothyroid condition was just reduced from 125 microgram/day to 112 microgram/day.  I am hoping it comes down even further seeing as how it was at 50 microgram/day when I got dx w/ cml and then slowly increased over time.  Guess I will find out...

[Buzzm1]

My BCR-ABL test after 9 months cessation was positive (0.0012).

 

My onc. said a restart of Imatinib was recommended but she would be OK with a retest in a month.

 

My response:

 

Hi Dr. xxxxxxx,

 

I am very surprised, and as you can imagine, very disappointed, that my BCR-ABL test was positive.

 

But the level 0.0012 is very low and the cessation trials/stop studies all use loss of MMR (0.10) as clinical relapse and restart criteria.

 

From everything I have seen while monitoring others cessation attempts on the LLS forum, with normal progression it will take up to three months for my level to reach 0.10.

 

However ... STIM2 http://bit.ly/1IbwZuh 2011

treated only with imatinib; MR4.5 DMR of at least 2 years duration;. median age 61, 62 men. 62 women ... 76 of 124 (61%) remained treatment free ...

However 41 experienced a BCR-ABL RQ-PCR fluctuation without clear molecular relapse. In this so-called-fluctuation group of patients, 7 were found positive once, 6 twice, 12 patients between 3 and 5 times, 10 patients between 6 and 10 times and 6 patients more than 10 times confirming that BCR-ABL reappearance does not mean automatically clinical relapse.

 

So, there's still hope.

 

I am very tempted to wait until my next regularly scheduled BCR-ABL test in mid-Oct., prior to my annual physical at the end of October, but I know that to be on the safe side I should test before that, so I'll test again in six weeks if that is OK with you.

 

Sincerely,

[gerry]

A lot of TFRers have blips, but test a bit earlier to be sure. Some continually have these low level blips. Are you the first patient having a go at cessation, might explain the jumpiness at the result.

[kat73]

Buzzm - I know how disappointed you must feel.  But you are right that you are so far from danger that you do have some wiggle room to keep experimenting.  I selfishly hope you will keep collecting data for us!   But let's not label it the brave thing to do or anything stupid like that.  You do what you feel is right.  And keep us posted!

[Buzzm1]

Buzzm1

 

10-17-2016 TFR cessation

 

Cessation 10-17-2016

Detected 07-18-2017 0.0012

Detected 08-29-2017 0.001

Undetected 10-17-2017 0.000

Detected 01-16-2019 0.0004

[scuba]

Buzzm1 - are you going to stay off Gleevec and wait to check PCR again?

[Buzzm1]

Buzzm1 - are you going to stay off Gleevec and wait to check PCR again?

Yes, I'll continue to be off of Gleevec until I lose MMR.  I told my onc. that I would test again at six weeks to see if it was a blip, or if it is continuing to increase.  

[M.A.]

Hang in there Buzz

 

That is a very low level and, even though mentally it's probably good to be prepared for having to resume some dosage of TKI, I'm hoping you will bounce back down further again with your natural killer cells keeping things in check and will not need to resume TKIs at all.

 

Thank you for sharing the letter to your doctor with us as it's so very informative.

 

I'm reminded of the awesome video of a Dr Druker presentation that Red Cross Kirk posted on February 10th. He shows graphs of patients he's had that blip right up to 0.1 and then back down again and don't need to resume TKIs as their immune systems seem to be controlling the CML. I will try to post it below:

 

https://player.vimeo...9?wmode=transpa

 

Good luck Buzz!

[kat73]

Thanks, M.A., it was great to see that video again.  That man always cheers me up!  Seriously, I vividly remember W-A-A-A-Y back his offhand remark in some speech that he didn't see any reason why a CML patient in this modern era with the existing TKI drugs couldn't get 30 years or even more of life.  That was a huge emotional turning point for me.  Now, of course, even that has been amended upwards.  But back then we were in who knows-land, and I was personally thinking that a few more than five years really was NOT good enough for me to resume happiness.  Nobody else was saying "30 years" out loud.  How I clung to that man's words!  And this video has the same effect.  Hope!