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
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.
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
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 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
Buzz, not good. My October 18th PCR test came back 0.4243, which actually is where it was just 4 months into treatment back in 2018. My hematologist has left to go join the Cleveland Clinic. I have my first appointment with my new one tomorrow, which will include another round of labs.
Thanks for asking.
Rick - You must be SO disappointed. And now you have to start with a new person and all that entails. Listen, hang in there and hang onto your optimism. Try hard to make yourself remember that the important thing is to get back to those nice double zeroes to the right, ASAP. WHICH YOU WILL. All the studies show that. Then you can fool with yearning for undetectable and TFR again - as a hobby! Joking aside, I know how you feel. I'm pretty resigned to never getting off this stuff, but it's still a struggle to remind myself that I'm lucky to be in the safe zone. Period.
Thanks, Kat. My new onc is started me at 400 mg Imatinib, monitoring every 4 weeks for BCR-ABL and other blood test. Once I reach 0.1, she will back off to a less frequent monitoring. She says when I reach undetectable, she will cut my dosage. Right now I am back to the grind and hopeful. With God's help I kicked cancer's ass once. I can do it again.
I can tell you this. Even though you know there is the possibility of a relapse, no matter how much you prepare yourself, once you are back in the examining room with getting your speen checked and lymph nodes and starting treatment again, it feels very similar to when first dagnosed.
Headed for the double zeres!
You hang in there. We are all in this together.
