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Some Expertise Needed - TFR

I started TFR on March 25th and things have gone great - UNDETECTABLE - with the surveillance. Now the latest PCR test came back .0095% IS. My hematologist says that it is still very low and to stay the course until my next blood draw, which is a little over a week from now, but it takes 10 days later to get the results.

I have appreciated this forum and would welcome any expertise regarding the testing and if there is still a shot that I can stay in TFR.

With gratitude,

Rick

 

 

 

Rick,

You haven't failed TFR until your BCR-ABL ratio exceeds 0.1

I'm still TFR
2016 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, 04/16 TFR 0.0045, 07/17 TFR 0.0018, 10/15 TFR 0.0150
2019 01/15 TFR 0.0144, 04/15 TFR 0.0134, 07/15 TFR 0.0042, 10/15 TFR 0.0126
2020 10/13 TFR 0.0127
2021 04/15 TFR 0.0107

Wishing you the best.  Should you have to restart, argue with your onc to restart on the lowest dosage available.

tiredblood prior to TFR attempt, on Sprycel 20mg
03/11/2021 0.164% :(
04/07/2021 Restarted on Bosulif 100mg/day
04/16/2021 0.128%
05/17/2021 0.025%
06/xx/2021 0.  

shweflen prior to TFR attempt, on Imatinib 300mg
11/17/2020 BCR-ABL:ABL = 0.026  
11/24/2020 restarted on 100mg/day imatinib (onc recommended 300mg/day)
12/14/2020 BCR-ABL:ABL = 0.012
02/16/2021 BCR-ABL:ABL = 0.004
03/01/2021 started 100 mg imatinib every other day (record low 50mg/day dosage)
03/15/2021 BCR-ABL:ABL = Not Detected
05/19/2019 BCR-ABL:ABL = Not Detected 

Buzz

Rick, it wasn't at all unusual to test detectable during the STOP Studies

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, of the 76, 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 automatically mean clinical relapse.

Buzz

 

Thank you for your hopeful replies!

Rick

Rick, wishing you the best on your soon-to-be-received test result.  

If the result exceeds MMR, 0.1, and you need to restart, please implore your onc/hema to restart you on Imatinib 100mg.  When CML is at a very low level it only requires a minimal TKI dosage to suppress it.  Most oncs still unnecessarily restart TFR fails on the full dosage of their TKI.  It isn't at all necessary.  It is in your best interest to take the lowest amount of TKI possible.

Restarting on Imatinib 400mg you will regain undetectable in 2-3 months.
Restarting on Imatinib 100mg you will regain undetectable in 2-3 months.

Ask your onc to allow you two monthly tests; agreeing that if you don't show positive results in that time, you will increase your dosage.  The first test is just a marker because there isn't any way to predict what your CML level did between your last test date and your date of restart.

Buzz,

My BCR-ABLjumped up to .0782%.  My hemalologist says to stay the course and hold my Imatinib. Next blood draw is Sept 7th.

I am still hopeful.

Rick

It's good to remain hopeful - TFR protocols use > 0.1% (loss of MMR) as threshold for resuming therapy. Your doctor wants to wait to see if you continue upward across that marker. Keep in mind 0.1% PCR is still VERY VERY low residual disease. It would take a year or more if you lost response for CML to rear itself as a disease again. By the way, this is why women can get pregnant and tolerate a rising PCR during 9 months and then resume therapy and bring CML right back down.

However, you do show an almost one log increase trend up. It's slow, but upward. It would be better to see an up/down movement.

I presume you take vitamin D, selenium, zinc, vitamin C and perhaps Curcumin. Do you everything you can to maximize your immune system's ability to fight CML in the absence of a TKI.

Thank you, SCUBA. Doing all I can to fight without TKI.

Peace!

Thanks for the update Rick.  CML, unchecked, can easily double week to week; your weekly rate, in the four weeks July to August 10th, was a little less than that (1.7).  

Implore your onc to allow you to restart on Imatinib 100mg when that time comes.  The lower your CML level at your next test, the better your chance of restarting on low dosage Imatinib 100mg.

Buzz

Buzz,

Thanks for this info and counsel!

Best,

Rick

Rick, just to put things in perspective to maybe help you make the best decision; at the 1.7 weekly rate, on Tuesday, Aug. 24th, you will be over 0.2; on Sept 7th, your next test date, you will be over 0.6; by the date of restart, you will be over 1.4.  

Buzz

Buzz,

That certainly is not what I would hope, but I have accepted the likely outcome that my attempt at TFR will fail. Just now hoping that the next result allows me to negotiate dosage for the restart.

Peace.

Rick

Rick, it might be good to breach the subject with your onc before you get to the restart.  You will then at least know where your onc stands in regard to the issue.

Buzz

Buzz,

I plan on doing that. I have a consultation scheduled after the next draw but before the lab results, which take 10 days in our system.

Best,

Rick, hoping for the best on the results of your Sept. 7th test you are scheduled to receive on Sept. 17th, but there's a high likelihood that you blew by MMR, 0.1, considered clinical relapse, on Aug. 13th, well before you received the 0.0782 result of your Aug. 10th test on Aug. 20th; 0.0782 at a 1.7 weekly rate, three days later.   I've tried to keep biting my tongue but it served no purpose for your onc not to immediately retest and restart you, hopefully on low-dosage Imatinib 100mg at the time, and be undetectable again, before the end of the year.  Now with a highly probable much higher reading on Sept. 7th, your onc is very likely to want to restart you on full-dosage Imatinib 400mg and it will probably take six months for you to reach undetectable again, and then your onc will probably want to keep you on Imatinib 400mg for an additional year, after that, before allowing you to finally begin to reduce your dosage.  It would behoove you to lobby your onc hard for a low-dosage Imatinib 100mg restart regardless of the test result.  At least a two test trial to show your response.  Expect good results.  The odds are good that you can sustain on 100mg every other day, possibly less. 

Buzz

Buzz,

I appreciate your perspective and take on my situation. I meet with my onc on Monday.

Rick

Thanks Rick, I'll appreciate hearing what your onc has to say.  

Buzz

Buzz et al,

I just got my latest PCR BCR-ABL1 analysis back. My score moved in a positive direction, down to 0.0645% IS. So I am still in treatment free remission and will now go on an every six weeks surveillance schedule. My hematologist/onc says that this is quite normal - to move from undetectable to detectable and then have the numbers go back down. I don't understand it, but she said something like a "cleanse" happens.

Best,

Rick

 

Hi Rick,

Knock me over with a feather.  Haven't ever heard the term cleanse before and have only seen one case, out of the many that I have monitored, that might be somewhat comparable ... that patient tested 0.05-0.07 six months in a row between before relapsing at 0.164. 

your results:
07/13/2021 0.0095
08/10/2021 0.0782
09/07/2021 0.0645

Buzz