Very disappointingly Paul’s latest results on the Sprycel 50 mg dose aren’t good . He went up from .17 at 6 months to .24 at 9 months. Need to obv increase the Sprycel. Hate for him to have to go up to 100 again ; wondering about trying 70 or 80. ? Or should we just go 100 and try and teach PCR then try again .?
Thanks for advice and support, Louise
Hi Louise,
That's a very small rise! Maybe he should wait for another PCR test result - I assume they have taken another sample for testing? - before resuming full dose. Generally speaking, in the case of such small changes, it is recommended that at least 2 separate PCR tests should be taken before any action is taken. Everyone is individual and it might well be that he could try 70mg - depending on the next PCR result.
Sandy
Louise,
There is no difference between 0.17 and 0.24 when measuring PCR. The PCR test has an 'error' range of up to one log. That means two identical tests run on the same blood sample at the same time can show values ranging from ~ 0.07 to 0.7. Paul's current result is well within that range. He would need to establish a trend upward before making a drug dose change.
Stay the course. There is a high chance his next result will be even lower.
According to the fine print that is included with every PCR test result I get from Mayo Clinic, "The reproducibility of this assay is such that results within 0.5 log should be considered equivalent." If you belief this, then Paul's latest result is equivalent to his 6 month result. I agree with Sandy and Scuba that no change should be made until next PCR test. Unfortunately for all of us who have experienced small blips up in our results, this creates heightened anxiety that builds until the next result. If it were me, I'd ask to be tested again in @ 6 weeks, as I'd rather know sooner than 3 months from now. But that's just me. We'll pray for the trend to start going down again.
Thank you so much for the feedback. I passed it on to my husband whom of course was away from home when results came through, and it made us both feel so much better.
I think my husband is leaning towards asking to try 70 as a compromise. I will also ask about a retest in 6 weeks.
Thank you all again Louise
Before increasing dose in response to the latest test - consider the ideas in this paper:
THE HIGHER THE DOSE OF DASATINIB, THE LOWER THE MOLECULAR RESPONSES AS WELL AS THE GREATER THE DOSE-LIMITING TOXICITIES IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA
https://learningcenter.ehaweb.org/eha/2018/stockholm/216328/jangik.lee.t...
In other words, increasing dose might actually get the opposite result he would be expecting. Just something else to consider.
Best course of action is to stay the course. Increasing dose now is not a "compromise". More drug does not necessarily lead to better response. This is especially true for Sprycel which is not a 'dose dependent' drug in a way that Gleevec is dose dependent.
Thanks Scuba
i am going to share this paper with his oncologist.
But his oncologist preference is to go back up to 100; that is why I said 70 would be a compromise with him. He’s possibly open to that because there were signs on 100 that Paul’s platelets were falling too low. Even on 50 his wbc and neutrophils are low and his onc acknowledges they are likely to go lower if he ups his dose.
Paul had an initial huge drop in his ABR-BCL from 89% at dx to 0.74 at 3 months but then it did start to taper off considerably , dropping to 0.105 at 6 months. Now it’s at 0.237 at 9 months.
That is probably a small rise even allowing for a margin of error with testing. But it’s hard to tell if that is a plateau / uptick that may have occurred even if he had still been on 100 or if it’s the direct result of going to 50. I know from being on here that is very common as well.
Louise - Even my conservative, resistance-believing CML specialist is OK with 70 mg. When I first came to him, he switched me from Gleevec to the standard 100 mg Sprycel. After a couple of months, my PCR showed a dramatic fall, but I was still in the throes of myelosuppression. So, he suggested a reduction to see if those numbers might come up, while continuing a downward trend in the CML. That was indeed what happened. He was totally happy with 70 mg. He was even OK with 50 mg, after I got a couple of pleural effusions, as long as the PCR was still going down. He only balked at 20 mg (another story, off point). As I said, he's a believer in the resistance-developing theory - time will tell us all the truth - but I'm telling you this because he IS perfectly fine with 70 mg, so I think you should go for it. All of this is contingent on a successful continued driving downward of the PCR, of course. That has to come first.
Thank you. He wasn’t impressed by the paper Scuba but he agreed on going on 70 rather than back to 100 because of the low platlet and neutrophil numbers he had on 100. I am wondering if after an initial sprint, he may be a bit of a tortoise as well Kat and that’s ok if he gets there in the end. And the support from this community helps no end.
Well my son is very disappointed that England lost today ...and before his England shirt even arrived in the mail. English soccer/ footballl fans need lots of patience :)
Louise - Very few doctors are impressed with anything that is not officially sanctioned through multi-billion dollar/pound clinical trials.
Dr. Cortes - a specialist in CML who helps write the NCCN guidelines is familiar with this research and has seen similar results in his own clinic. He told me this is the reason he prescribed 20 mg for me right at the start when he saw I was very sensitive to Sprycel causing (myelosuppression). I am PCRU today, no side effects I can feel and continue at 20 mg.
These same doctors didn't believe in cessation attempts. They didn't believe in dose reduction. They didn't believe in high fat low carb diets. They didn't believe that CT-scan machines can cause cancer. I can go on.
Doctors to me are like pundits on television. Paid to opine on subjects they claim knowledge. Fortunately - there are plenty of doctors from which to compare. In the end you have to be your own doctor once armed with knowledge. And keep this in mind - you will learn sooner advances in CML than your doctor. You will learn about these advances right here on this forum. Because it's personal.
As an example of misinformation, I received a message from my oncologist's office telling me I shouldn't be cutting my Sprycel tablets because they have an enteric coating and that cutting the tablets will change their efficacy. I think that they are misinformed about the coating.
Here's what I found about the coating on Sprycel:
"Note: active ingredients are surrounded by a wax matrix to prevent healthcare exposure; women who are, or may become, pregnant, should not handle crushed or broken tablets"
I'm not too worried about exposure since I'm swallowing the tablets. 
Though I do wash my hands after handling them, just to be safe. 
I would add one more constraint we need to consider about doctors - one of their priorities is not do anything which may lead them to being sued. Following medical orthodoxy - or what they learnt at med school - is their default position. Sharing recent research findings through this site is one way we can help them and us. I have to say I think I have been lucky - all three consultants I have seen over the last 11 years have been great, up to date, and willing to discuss details and research with me. (On that last point the don't have a lot of choice once they understand I used to run a toxicology lab). I now know my results are OK if I am sent to see one of the juniors at the clinic not the consultant - he would see me if there was a problem, and the juniors would get him if I was worried about anything. I have a running gag with him about the fact I am training his juniors on CML for him, and will shortly send him an invoice.
Since Paul is going to be increasing dosage at the end of month , I wanted to get advice on how often we should insist on blood tests to make sure his neutrophils ( already low at a1.1l , so very close to your level Alastair and also Linda) don’t fall even lower on 70, which is my worry. He’s due to start 3 weeks after most recent test so thought to ask for blood test just before he starts new dose and then 2-3 weeks in. Does that sound sensible ?
How low can neutrophils safely fall without having to take a drug break ?
Thanks again for the advice.
Louise
Hi Louise,
I don't think there's a simple answer to how low neutrophils can go before something needs to change. I got to around 0.7 I think when my consultant got really worried, but I didn't have any major issues with infections. I think regular checks are important to see what is happening - your plan sounds good to me.
