13 replies to this topic

[JoshLee]

Hi All,

      So I got my pcr results back and am waiting for my oncologist to call. I have gone from a 1.3 log reduction to a .9 and now three months later to a .6 (0.53%). The lowest it eve got was a 0.097. CBC still looks good and oncologist also ran a fish. The results from that probably won't be back until the end of the week. I am thinking most likely a BMB will be in order.  A mutational analysis was done for me early on in my treatment and no mutation was found, but I bet they will want to do another one. I was kind of wondering if something was up because I've had a little more hip pain than usual even though my CBC is normal. Anyone with any experience with someone achieving a CCyR on Tasigna and then losing that response? Thanks, Josh

[mike8]

I have a somewhat similar experience.    I was diagnosed about 20 months ago and started on Tasigna.  After 6 months I was CCyR bone marrow.  But, my best PCR has been more or less 1 log reduction.  I did not lose the response, but it has been only about 1 log reduction for about 1 year.  A mutation test came out clear a while ago, but PCR did not move. Today I started Sprycel. 

[pamsouth]

Thanks Josh, for your post.

I have been on gleevec since 2005.  However I have switched to a new CML Specialist.  He is running all new lab test including the mutation, etc. Then he will run another one in a month and then 3 months.  So hopefully they will be good so I don't have to change med's, more then likely it would be Tasigna.

One of the reasons that I changed doctors, my previous doctor sent my labs out of state and the PCR went up.  However when I called the lab they had changed their metric system over to a new scale.  My new oncologist is connected to a hospital where they do their own labs and interpret them.  So they will need to do a whole new work up on labs for a few months.

For piece of mind before changing to another drug I really need to get a second opinion and study the new drugs and their side effects.

I am following the new patients on Tasigna and Sprycel.

Thanks Again, Best of Luck,

PamSouth

[JoshLee]

Can I get a word from Trey?

[Trey]

You have not lost a full log, so some might say stay with Tasigna for a while longer.  That is a reasonable option.  But in your specific case, it seems a switch to Sprycel might be a good idea, which is what I would do.  But overall, I would not worry that the TKI drugs will not work for you.  I think you are just a "plodder" when it comes to response.  Plodding is OK. 

[JoshLee]

Thanks Trey! I have no idea how I could be on this journey without your help.

[Happycat]

Josh,

Well, that's not the way you envisioned your numbers going, huh?  I would consider a switch to sprycel in your shoes.

Just a ticky tack question. Are you sure all results are from same lab, all done on same scale?  They haven't changed provider or switched to IS?  Same reporter gene used for the bcrabl ratio measure?  Just want to make sure there are no obvious problems with the data. (I've been spending way too much time on quality management lately!  Got it on my brain!)

Traci

[JoshLee]

Trey,

      A few more questions. Back in September, I had a PCR drawn at a separate hospital for a second opinion. There's was done by AURP right there at Sylvester. It was international scale and came back as 3.2%, which at 7 months, was nearing a 2 log reduction. I had a friend from MIT help me calculate that it would've been a 1.4 or 5 log reduction. My lab uses GD6PH as a control gene and I never got below a 1.3 log reduction and my molecular response dropped to a .9 at my standard lab when I hit CCR. Could the control gene be messing with my testing? I know it's a wishful wish, but hey...? Also, how soon would you recommend that I switch to Sprycel? My onc. has treated many patients, but unfortunately for me, has never had anyone not respond to Gleevac so has no experience with anyone on Tasigna or Sprycel. He's very old school and depending on how this test comes back, I think he would want to keep me on Tasigna. I am prepared to switch oncologists if he won't let me make the switch. Also, with a pcr of 0.53% how much am I running a risk for suddenly advancing to a later stage of disease? I want to be on top of this stuff so I can live as long as possible. I am not trying to be dramatic, I am just scared. Thanks, Josh

[JoshLee]

Also, how likely is it that I've already lost my CCyR?

[Trey]

Any time you switch labs there can be variation in PCR results.  Having said that, the same lab can test the same sample twice and get slightly different results.  Different control genes will likely have different results.  There is enough of a possibility that the change in labs could be affecting the trend line, but it is unquantifiable.  Also the time from blood draw to PCR test will affect the result.  All of this is why the PCR has a 1/2 log average error rate. 

But if you were making faster progress, all of this would likely overcome these variables and show a decline.  It is when there is a plateau that the PCRs will bounce around the flat line.  And extra variables add to the confusion regarding the slope of the trend line.  There is no single answer.  If your Onc insists that sticking with Tasigna is the best course of action, then you will need to make a judgement call about whether you give it another 3 months and stick with this Onc, or switch to one the will prescribe Sprycel.  I tend to come down on the side of fast switching to find the best drug for each individual.  But there is actually no wrong answer here, and giving the Tasigna another 3 months would also be a reasonable strategy. 

I don't know about CCyR, since PCRs are only rough estimators, but you could be close either way.  I doubt there would be any sizable loss of CCyR, if at all.

[Sneezy12]

If you decide to stay on Tasigna, I would insist on a repeat bcr/abl in 4 weeks from the last one. Frank

[JoshLee]

I have a fish test being processed at Mayo and have emailed both Dr. Talpaz and actually talked with Dr. Drukers nurse today. Both have told me not to freak out and to wait on the FISH and to have a sample pcr sent to oregon. My oncologist is also going to consult with a few people no matter what my FISH results state. The increases have not been huge, but they are there and I am going up instead of

down. We are in the process of checking everything out and I am also setting myself

up to see Dr. Talpaz in May.

[Trey]

Good plan.  The FISH should be useful. 

[markmendonca]

Trey what is FISH mean