I saw my onc today and was hoping for pcru but I got MMR instead,My onc is delighted therefore so am I.
My PCR is .02.is that really good?
CML dx Oct.2009.
Posted 18 April 2011 - 03:47 PM
I saw my onc today and was hoping for pcru but I got MMR instead,My onc is delighted therefore so am I.
My PCR is .02.is that really good?
CML dx Oct.2009.
Posted 19 April 2011 - 02:20 PM
Congratulations, that is a major milestone in this battle, you should feel really good about it.
Posted 19 April 2011 - 03:07 PM
The PCR raw numbers are not understandable without relating them to something. If your Onc says it is MMR, then that is very good for the 18 month point.
Posted 20 April 2011 - 03:37 AM
Trey,hope you are well,thank you so much for your reply.Getting a positive reply from you is right up there
with my onc.You'd think i'd be more clued in by now.
Posted 20 April 2011 - 05:46 AM
Thank you so much.
Posted 20 April 2011 - 06:15 AM
Congratulations! That is very good news!
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 20 April 2011 - 04:37 PM
Hmm, my latest PCR was done last week, and it came back as Indeterminate. Is that the same as MMR? or PCRU?
Caroline
Posted 20 April 2011 - 06:57 PM
Dear Caroline,
Did someone say this is pick on Caroline month?
Between getting so sick with hubby away the screw up over your medicine now your tests show indeterminate.The month is almost over so you can relax.
Billie
Posted 20 April 2011 - 09:02 PM
Sad to say it is more likely a test failure. Need a re-do. Expletives follow....
Posted 21 April 2011 - 04:03 AM
Sorry Caroline it means you need another PCR test.I'm surprised they didn't do it when you were there.
Hopefully you will get PCRU or MMR.It's the waiting that does my head in.(3month turnaround)
Posted 21 April 2011 - 05:57 AM
Hi Caroline,
You should talk to your doc about getting another test done.
I had the same comment on my last BMB - unfortunately my specialist went on extended holiday just before those results came out. So I've had to wait 4 months for him to come back. Getting my blood taken for a PCR test this weekend - then just have to wait another 4 weeks to see him, results will give me something to talk to him about.
Gerry
Posted 21 April 2011 - 06:04 AM
how do you guys get your PCR results so fast?
Posted 21 April 2011 - 06:34 AM
I live in Australia, so not sure if that makes a difference.
I'm a bit new to the testing process for PCR, but if I remember correctly about a week after my second BMB doc rang to tell me the marrow was clear (I asked about MMR). He said it might be in the next lot of results. A week later he rang me to tell me I had achieved CCR (he seemed pretty happy - I asked about MMR). He said to ring back in a week for those results and promptly went on holiday. I rang them back - they never called me back, called them back the next week - still didn't hear from them. So I got the results sent to my GP, when we looked through the results it said BCR-ABL not detected, but then there were a few additional comments along with a suggestion for further testing. So have no idea where I was in relation to MMR from that test. All in all it seemed about 3 or 4 weeks to get the results.
Posted 21 April 2011 - 08:37 AM
I live in the "middle of nowhere" and my blood must be shipped to Milwaukee and I get my Quantitative PCR results usually in 3 days (including travel time).
Same "shipping" for a BMB. Usually takes that 5 to 7 days.
Maybe I am just their favorite
Dxd 2007
started on Gleevec switched to Sprycel 100mg in 2009
PCRU since 2011
20mg Sprycel every other day since Dec. 2014
Began TFR 4-18-16
Posted 21 April 2011 - 09:27 AM
eithne,
I'm not sure if you meant 3 weeks or 3 months. PCR results do not take 3 months to come back. Results for a PCR should be back in 1-2 weeks, 3 tops. The blood sample can't sit around too long, so it has to be processed in a reasonable amount of time. If you are not getting your results back for 3 months, that would appear to be an issue with the way your doctor's office communicates test results. I'm guessing you have appointments every three months and you get the results when you go for your next appointment so your doctor can discuss them with you. That's all well and good for the doctor, but puts a burden on you wondering what the results are. With my doctor I usually wait about two weeks after blood draw and I call to ask what the results of the test were. A nurse calls me back to discuss. Fortunately I haven't had any bad news or I suspect the doctor would call herself. After they tell me the results, I request they fax a copy to me for my own review and record keeping. If I see something I don't understand I can ask questions here or send an email to my doctor's nurse.
I don't think it is fair you should have to wait three months for your results. I would have a talk with the doctor and work out a better way to get the infromation from them in a more timely manner.
Posted 21 April 2011 - 10:07 AM
Congratulations! Hope you are feeling great!
Teds
Posted 21 April 2011 - 10:09 AM
Gerry,
I am so sorry you have to go through all this with your onc. It makes me angry. You deserve to have an excellent report. I will keep my fingers crossed for you.
Teds
Posted 21 April 2011 - 10:28 AM
Ok, here is the whole test result. And the reason I get it so fast, I go to Seattle Cancer Care Alliance, and the lab is in the building. The results for CBCs are in in under an hour, PCR takes a day, I will let you know about BMB after the 5th:
Posted 21 April 2011 - 11:42 AM
Congrats on your progress eithne
Received an email from my onc with my PCR results this morning.
She said don't miss a day of Gleevec
I think she must be counting my pills..lol
Don't know if anyone else, other than me, feels that they need to take a day off on occasion.
my bad, there's usually one day in a month, where my regimen slips
Keep up the progress, it's the journey, not the destination
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 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 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Posted 21 April 2011 - 01:45 PM
Hi eithne,
RE: My PCR is .02
In your PCR results, did it state what your log reduction was calculated to be?
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 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 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
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