Member
Posted 12 February 2013 - 10:23 AM
Just got back from my hem/onc appt. Since April of last year my b3a2 number has been rising ever so slightly. The other two, b2a2 and e1a2, have stayed the same (<0.001). Prior to April, I was undetectable.
4/12: .044
7/12: .075
10/12: .141
1/13: .168
Not trying to be a nervous nellie, but it is a little upsetting to see this number continue to rise. My hem/onc is not an expert and he's not sure what to make of this. So he's sending my results to Dr. Smith at Hopkins. Any thoughts?
Rissa
Advanced Member
Posted 12 February 2013 - 12:30 PM
Sorry you are feeling unsettled, for what its worth, the Oct and Jan numbers are the same. I know it shows a little higher but given the accuracy of PCR those numbers are the same.
See what they say at Hopkins.
Advanced Member
Posted 12 February 2013 - 05:50 PM
Hi Rissa,
Am I correct in thinking you still on gleevec? And I'm taking from what you said that your PCR (incorporating b3a2) has risen from undetectable (<0.001) to 0.168, so > 2 log increase? Your numbers are still low but you've had a 2 log increase and lost MMR (assuming IS) so it's time to move and it's great that your doc didn't stuff around and pretend he is a CML expert. I love docs who don't pretend they know everything. If I was you I'd be pushing for / expecting a drug change to either tasigna or sprycel. I'd also be asking about mutation testing to see if maybe you should jump to ponatinib (specifically if you have the t315i mutation).
So being a nervous nellie myself I'd be a little worried but you're probably way cooler than me... but really you have a lot of treatment options left and every reason to expect that they'll do the job. I can't remember the percentage but quite a lot of people loose response to gleevec in the first 2 years but respond well to the 2nd/3rd generation drugs.
Let us know what they say at Hopkins... when is your appointment?
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Advanced Member
Posted 12 February 2013 - 07:17 PM
Overall you are just in a holding pattern. You attained CCyR in less than 1 year so you seem to respond well enough to the TKI drug. If the PCR results are International Scale then I would not be concerned. If they are not, then ask the Onc for an equivalent log reduction for the results.
Just be aware that some others have suggested that Dr Smith at JHU appears to push his clinical trials a wee tad aggressively.
Member
Posted 13 February 2013 - 10:46 AM
Thanks everyone for the input. You are correct Trey about Dr. Smith. They tried a couple of times to get me in one of their clinical trials and I'm sure they'll try again. Thankfully, I don't have to go there to consult with him. My hem/onc just calls or emails him to get his advice. My PCR results are International Scale. It's been almost 2 years since dx and I'm still not very good at understanding the results. And sometimes it just gets to me, you know? Ah well, if I had a chill pill I'd take it.
Member
Posted 19 April 2013 - 02:08 PM
Just wanted to send out an update. My latest results are .02, so my onc said he's keeping me on gleevec for now. So no trip to Hopkins yet..............
Very happy with this result!
Advanced Member
Posted 19 April 2013 - 05:04 PM
Great results, glad to hear Rissa!
Teddy
Advanced Member
Posted 19 April 2013 - 07:51 PM
I am happy too! Phew! Hope you keep on seeing low numbers!
Teds
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