19 replies to this topic

[Dom]

I had been on 400 gleevec for About 2 years. And I had finished out 2915 with .04. Then came 2016 ...

1/2016 -- 0.7
3/2016 -- 0.6

We decided to move to 600 gleevec in 4/2016. Then ...

6/2016 -- 0.4
8/2016 -- 0.1
11/2016 -- 0.4

So it's moving up, and I have nowhere to go. I have to be careful with the second generation stuff because I have a bad heart.

Does anyone else fit my profile? If I'm forced to go to say, tasigna, what can I expect?

[Trey]

You are hanging around MMR levels, which is good overall.  The variations you have seen are not unusual.  You could continue on the same track, or switch drugs if you want, but I understand the hesitation due to heart issues and the uncertainty about the other drugs. 

 

In the first large group of Gleevec users (IRIS Trial) some patients took many years taking Gleevec to drop below MMR levels.  So that could still happen to you.  Since your PCRs are stable enough, it is an option to just continue what you are doing unless you see a large spike in PCR (increase by 1 log, which would be to about 4% for you).

[edenation]

Try not to be sad and negative about it as it will affect your health. Have you tried changing your diet? I have reduced my intake of fried and oily food, less processed and sugary things. I used to drink pure wheat grass juice and also a fruit mixture consisting of apple, beet root and carrot. Maybe you can give it a try?

[Dom]

Thanks, I'll take that advice. What bothers me is that no matter what dosage I take, the number goes up. It's like my blood wants cancer.

[gerry]

My doc told me if i have to return to a TKI, Tasigna was off the table for me due to my potential for strokes.

[kat73]

Dom - I don't know what your heart issues are, but have you thought of Sprycel?  The reason I suggest it is that it is of a different makeup than Gleevec or Tasigna, and people who "stick" on Gleevec often "unstick" and zoom downward with Sprycel.  This is what happened to me.  I had not quite nailed MMR at two years in on Gleevec and when I switched to Sprycel (only because of side effects) I immediately got it.  That zero to the right of the decimal point also came along pretty quick and has - fingers crossed - stayed for the past four years.  But even with your current numbers, you're pretty safe.  My onc told me recently that he has many, many patients at very low levels (which is what he would call MMR) who just hover there, year after year after year.  Not what you want to hear when everyone is talking about TFR and dose reduction,  but it does offer some perspective.

[Dom]

Thanks a lot, kat, and everyone else. I'm worried less now than I was before. It just that, looking at the graph of my results, it's painful to see the line drop and then jump up again over and over again. But you're right. 0.4 is better than where I started.

Do you know if sprycel has any cardio side effects?

[kat73]

I don't know of any other than they are now seeing some cardiovascular "events" in older, longterm patients, but I believe that's for all TKI's, not Sprycel in particular.  I could be wrong on that.  At any rate, why don't you take a look at the patient insert for Sprycel online - if there's anything, it should be there.  And Trey could chime in here?

[Peanut]

My son-in-law had heart issues years before being diagnosed with CML, he was in his early 40's when he had a heart attack. It was chest pains that made him go to the hospital thinking he was having heart issues, but was diagnosed with CML. He was given the choice of Gleevec or Sprycel, but was told Tasigna was not an option. After consulting with his cardiologist he started 100 Sprycel. He's been on it for 16 months, has responded well, sees his cardiologist regularly and hasn't had any problems.

[Dom]

Thanks, peanut. Interesting that the cardiologist picked sprycel over Gleevec because of heart issues.

[Peanut]

My son in law wanted to go on Sprycel, but wanted his cardiologist's input. He had a full cardio work up before starting it. If you have a cardiologist maybe you could get his opinion if you feel you need to change TKI

[SandyG353]

If I remember correctly, Sprycel can cause fluid in the lungs and  abnormal heart rate .  I had looked this drug up after starting Gleevec.  I

wanted to know which of the others - tasigna or sprycel she could take if she failed to get molecular remission with Gleevec. The answer was that she couldn't take either tasigna nor sprycel.  He has a heart condition called hyperventricular tachycardia.  This is something that she was diagnosed with in her 20's.

[chriskuo]

Sprycel can cause pleural effusion, fluid around the lungs, not in them.

[rct]

Thanks, peanut. Interesting that the cardiologist picked sprycel over Gleevec because of heart issues.

 

Early on there were thought to be problems with Gleevec and what is called Long QT, the timing between heart beats.  Apparently one of the early patients in the earliest trials died of complications resulting from the Long QT problem that he brought to the trial.  My Mrs wore a monitor for a week, got it all checked out, they had the info sent out to a few different oncs, Druker among them.  This would have been late 2006.  It was pretty quickly established that Gleevec didn't bring on Long QT problems and it didn't exacerbate them, that people develop Long QT for other reasons.  But they kept people with known Long QT problems off of it once there were new drugs.

 

That hasn't stopped the belief in Gleevec and heart issues of all kinds though.

 

rct

[Dom]

Just wanted to follow up with everyone. The bad news of the title is now (somewhat) good news. My last test came back with 0.1. So it is bouncing around between 0.4 and 0.1. You can add this to the numbers of my original post.

1/2017 -- 0.1.

This month I move to generic. Hope nothing changes. Right now, I'm feeling pretty good.

[Buzzm1]

Just wanted to follow up with everyone. The bad news of the title is now (somewhat) good news. My last test came back with 0.1. So it is bouncing around between 0.4 and 0.1. You can add this to the numbers of my original post.

1/2017 -- 0.1.

This month I move to generic. Hope nothing changes. Right now, I'm feeling pretty good.

That's good news Dom.  Congratulations!

[r06ue1]

If your PCR goes up again in the future, you can always switch to Bosulif, I believe that it has the same side effects profile as Gleevec (or close to it) on the heart and not as hard on the heart as Sprycel and Tasigna.  

[Tom1278]

I was relatively slow on 400mg Gleevec.  I had a CCyR by 18 months and hung out in the 2.5-2.8 log reduction range after that.  My doctor did a mutation test and I found out I had the E453K mutation.  There's little data on it but has been shown to be mildly resistant to Gleevec.  Since I tolerate the medication extremely well, we decided to up the dosage to 600mg Gleevec.  After about 1.5 years at the higher dosage (with some fluctuations) I'm consistently now in the 3.5-3.8 log reduction zone.  I'm 4.5 years into my diagnosis.  I'd give it time for the increased dosage to kick in.

[Dom]

Interesting information, Tom. I'm a little confused though by "log reduction". Can you or somebody explain how that relates to the usual way we report pcr test scores?

[Buzzm1]

0.32 is MR2.5 (log reduction 2.5)

0.1 is MR3 also referred to as MMR

0.032 is MR3.5 (log reduction 3.5)

0.01 is MR4

0.0032 is MR4.5 (log reduction 4.5)

0.001 is MR5