10 replies to this topic

[Frogiegirl]

Would like to hear of others experiences going off tki, blips, declines, back to pcru? Curious. .......thanks in advance!

[scuba]

I went off Sprycel for nine months in 2015 (January - September) and experienced no increase for more than three months, but then a slow rise from near PCRU (<0.01%) to as high as 0.07%. occurred. It was not linear ... The month it hit .07%, the following month it fell back to 0.02%. I never lost MMR and my Doctor wanted me to continue off Sprycel to see how long I can stay below MMR. I decided to resume 20mg Sprycel to verify that my PCR would drop back down again to < 0.01% which it did quickly. I expect to test cessation again and will remain off as long as I do not lose MMR. The major reason I went back on Sprycel was to avoid the monthly testing (and parking) at M.D. Anderson! At where I am now, I may test at six month intervals instead of three months. 

[cleocans]

I went off Sprycel after almost 3 years undetectable.  My PCR quickly went back up, 0.33% after 2 months off. My onc wanted me to stay off for one more month to see what happens.  It shot up to 1.7%, so needless to say I am back on 100mg Sprycel.  I go back in 6 weeks, hopefully like all that have had to go back on meds, it goes back down!

[gerry]

A number of our TFR members have blips, and they remain down in the noise level. But we also have new members who have the CML return. I am over 3 years TFR and so far have remained negative.

[Buzzm1]

from 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 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.

[Trey]

For those on drug cessation programs, the ones who become stable may sometimes have blips, but the ones who lose response (most people) have continued upward PCRs.  It is more likely to lose response than have blips.  And that data is for those who had been PCRU for extended period of time.  Those without extended PCRU almost always just lose response. 

Edited by Trey, 12 January 2017 - 09:00 PM.

[ChrisC]

In full gratitude, no blips at all to report.

 

ChrisC

[Red Cross Kirk]

Would like to hear of others experiences going off tki, blips, declines, back to pcru? Curious. .......thanks in advance!

 

Frogiegirl,  I was reading your CML history and was struck by the part where you said, "jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since)".  Those two PCR numbers didn't signify a jump at all, in reality you probably still had a declining PCR as evidenced by the results of your next test.

 

If your doc was alarmed by that "jump", how concerned is he/she now?  What dose are you going to start at with the Sprycel?  Hopefully the Sprycel will work better for you and kill off those dang CML stem cells with no side effects!

[Frogiegirl]

Red Cross Kirk, I'm waiting on march 3rd results now, but my doc  is holding at not treating until I'm over the 1.0 mark. which I am sure I am now. the plan is to start sprycel at 50 (at my request because I am scurred of full dose  ) Its hard to be off knowing my PCR is climbing, but if I were preggers (which is why I went off to try for in the first place) I'd be doing the same thing anyhoo until delivery. Not sure why he's not overly concerned now, maybe because more data has come to light since then?  Maybe sprycel will be my golden ticket? I feel like a dog with my tail between my legs....I tried.

[mdszj]

I was undetectable for approx 1 year, then had a pcr blip up to 0.043% (IS).  A month later I did a repeat test and my pcr showed 0.005%.  While all this took place I was still on 100 mg sprycel.  Four months later I went back to undetectable, but due to the blip I had to reset the clock with respect to going off the S.  After almost 2 years I just recently stopped my medication, and so far I am still undetectable after 3 months.  Neither my local hemo nor my specialist ever really gave me an explanation for the blip.

 

Hope this helps.

[jjg]

Frogie  as you know my PCR rose just like yours did twice, once failing to get pregnant and once while pregnant. It is just typical of people who fail the stop trial, actually the majority of people who try to stop. We started interferon at about this point but clearly as you have decided to stop trying for now then starting sprycel is a great idea. The time that I did get pregnant it was first go which is just amazingly good luck, well not entirely luck as we were using a high quality donor egg embryo, but still a lot of luck involved. If I hadn't have had that luck we were not planning to stay off treatment til the next month but go back on treatment for 6 to 8 weeks and then try again. This was actually my idea but the doctors were happy to run with it. The idea is that you keep knocking the CML back to very low  levels not because you expect it will not come back but so that when you eventually get pregnant you get an extra few months before starting interferon. As I do poorly with side effects on interferon for me an extra few months without interferon is worth working for. In any case I think you would want to be pregnant before starting interferon as being unwell is not going to increase your chances of getting pregnant.

If you want to try again then you have to assume that the CML will come back and have plans to deal with it.  It's most likely that within 6-12 months you will be PCRU again and then you have to decide if you want to wait or go straight away. For our second attempt at pregnancy we waited 2 years in the hope that I would remain PCRU or low levels during the pregnancy. But I relapsed at the same rate and that two years of waiting maybe gave me an extra week or two off interferon. If I was to go again I wouldn't wait two years but I would assume a relapse - if it doesn't happen, happy days.

It is a real suck feast having to restart treatment without a pregnancy. All the people in my mother's group are busy planning their next babies now based on when it's convenient and doing crazy things like buying houses with an extra bedroom for the child that will be easily conceived in the future. So yeah it does suck to be doing the trying for a family thing with cancer but at these times I try very hard to remind myself of just how lucky we are to aspire to being normal.

I hope you do drag your tail out from between your legs and try again, we did and this morning I'm the proud mother of a very cranky snotty nosed toddler :-)