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Posted 15 December 2016 - 06:13 PM
I have been posting about my daughter stopping Gleevec. Can anyone explain to me how her blood results were 000 with one lab for 7 years , but when the lab was changed the results came out .09 and .07. To me that would raise a red flag about stopping the Gleevec. Does anyone have any comments on this. I can understand a slight difference, but this seems to me to be quite a significant amount.
Sandy
Advanced Member
Posted 15 December 2016 - 07:53 PM
The difference between .09 and .07 is completely negligible. It is, however, NOT zero. It is detectable, and it is measured at these levels, which are virtually the same. So, stable. But I can certainly understand your wariness. If she had one more zero (say, .009 or .007, I'd feel a lot better about quitting the Gleevec. Remember, .1 is MMR (or MR3), .01 is MR4, and .001 is MR5. Many labs cut off at .01, so a person could be .001 or even lower in reality. At any rate, most of the cessation trial entry criteria call for "deep molecular response," which is generally MR4.5. Not all the studies do, however. If she could get down to .01 maybe you'd feel better about trying cessation?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 15 December 2016 - 11:01 PM
Sandy - Were both labs using the International Scale (IS) to report the PCR results? A different control gene might explain the discrepancy. In my case, PCR results were initially reported with the GUSB housekeeping gene, & when they switched to the IS standard, the results looked much different. Here are a few of my tests that were reported in both scales. As you can see, they're not exactly proportional:
IS=0.0206, Local=0.00231
IS=0.0114, Local=0.001604
IS=0.0097, Local=0.00212
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Advanced Member
Posted 16 December 2016 - 01:33 PM
Thank you both for responding. Kat, what you said to me is exactly my thoughts - she is not longer in remission so stopping the Gleevec is out of the question. I spoke to her about it and told her that she needs to wait for her numbers to be 000 before reconsidering stopping the Gleevec. As for whether the labs were using the IS to report the results, I do not know. My daughter fails to keep records and only informs me of information when she feels I need to know, such as when she was in remission and molecular remission or needed biopsies done on different parts of her body. As much as she wanted to stop the Gleevec, she thought over what I said - which is that she isn't 000 anymore and stopping the Gleevec would be a risk. She decided to wait until she is 000. I wonder what would have changed her numbers to a complete log jump from the oncologist stopping the use of one lab and going to another. I can understand reading when people had a difference of .02 from one lab to another, but from 000 to .07 or .09 is quite a jump.
Advanced Member
Posted 16 December 2016 - 04:10 PM
Look again at Antilogical's numbers - a log there, too. The important thing is these are all really, really low numbers and that's great. I think the real answer to your question is that the test just isn't perfect and yes, different labs can be that far off. I have had very different results, even from the same lab - maybe they changed a part of their protocol, maybe the day or time of day was different, maybe the sample was handled a little differently - who knows. It's the trend, the trend, the trend. All else is blips. Now that she is where she is, find out if that's reported in International Standard, and start keeping book.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 16 December 2016 - 04:13 PM
Sandy,
You will know more when she has a few more tests under her belt with this new lab, too. (That is, if she tells you! 
) Worst part of parenthood when we no longer have control over our sick kids!
Remission is not a word currently used with CML, although that may be changing with more people successfully remaining treatment free. Response is the term more commonly used and your daughter has had an excellent response to Gleevec!
I hope in the future she is one of the lucky ones who successfully remains treatment free!
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>
Advanced Member
Posted 16 December 2016 - 08:10 PM
Thank you for your responses. As a parent of an adult child who doesn't keep records nor inform me of things until it a biopsy is needed or at times good news -like when she was in molecular remission, it is very stressful. So, I reach out to people in this group and another group for information and guidance. I thank all of you for helping me. Yes, we will know when a few more tests are done.
Advanced Member
Posted 17 December 2016 - 01:21 PM
You are welcome here - you are dealing with CML just as surely as she is. Also, as the mother of an ALMOST BUT NOT completely launched 32 year-old, I feel your pain. 
We have lift-off, but the steady orbit has not yet been achieved, and still needs an occasional nudge from Earth . . .
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 17 December 2016 - 07:18 PM
Thank you Kat for your support. My daughter is divorced and has a 9 year old son. The CML diagnosis ended her marriage. She was diagnosed when my grandson was15 months old. I have been helping them since the diagnosis. She has come a long way and did quickly develop molecular remission and was hoping to stop the Gleevec. I guess she will have to wait a bit longer.
Advanced Member
Posted 18 December 2016 - 10:54 AM
That's a rough road! She needs you, that's for sure. I think she's headed for "undetectable" in her future, I really do. Keep us posted.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 21 December 2016 - 04:15 PM
She was undetectable for 7 and a half years. The oncologist was prepared to have her stop the Gleevec, but the lab was changed. The new lab. first had a no. of .09 . The next test was .07. That test was last week. The oncologist said that he will think about whether he wants her to stop the Gleevec. I e-mailed Dr. Druker who would like her to take a new test in a kit that she can get from OSHU or from Molecular MD. He would like to see the results along with a PDF of one of the recent tests. However, she is afraid of stepping on the toes of her oncologist and said she will wait until she has 000 with the new lab. If it were me , I would go ahead and do what Dr.Durker suggested, but it is my daughter who has CML. She is an adult and wants to be independent. Then, again, I read the graph that Trey posted which showed the number of people who lost molecular remission in the span of 4 months and up to I believe 4 years. In 4 years there were only 20 percent that were still in remission. (If I have that correct) I guess she should just stay on the Gleevec to be safe. In the future she can always push for lowering the doeseage of Gleevec which her oncologist wasn't willing to do . Maybe he will change his mind.
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