8 replies to this topic

[Marnie]

Well, darn. . .numbers heading in the wrong direction again.  I meet with the onc on Monday, so looking for advice.  I need to know if I'm jumping at shadows or if I have reason to worry.  Is the change in numbers small enough so as to be statistically insignificant?  At this point, I don't really know how high is bad and if mine are still low enough to be o.k.  I know that mostly it's a matter of trend. . .but I'm not thrilled with the trend right now.  I'm guessing the doc will want another PCR in a couple of weeks.

PCR dates and numbers:

6/5/2009               Positive

9/17/2009             0.200

12/7/2009             0.090

3/2/2010               0.059

5/13/2010             0.054

8/30/2010             0.100

9/27/2010             0.027

11/30/2010           0.145 

[Trey]

Definitely a plateau.  Not bad, not great.  I would ask the Onc to switch drugs.

I would link in a Miley Cyrus tune but just used my best one for Tedsey, which she apparently really, really enjoyed.

[PhilB]

Hi Marnie,

Really sorry that the numbers aren't what you were hoping for.  The good news is that it's more likely to be random fluctuations in the test from an underlying plateau than an upward trend based on those numbers.  I realise though that knowing that makes no difference whatsoever to how bum-twitching the wait for the next result will be.  As Trey has suggested it may well be a good idea to try something with a bit more oomph if available to try to drive the numbers down a bit lower.

All the best

Phil

[Marnie]

So here's the next dilemma. . .Tasigna scares the bejezus out of me because of the heart warnings.  Probably once or twice a month for as long as I can remember, I have an episode of irregular heart beats. . .very fast pounding for probably 10 seconds or so. . .always feels longer, but I'm sure it's not (actually, probably not even 10 seconds).  Nothing I've ever had checked out.  Did wear a heart monitor once, but never recorded anything.

I also hate the thought of taking Tasigna twice a day and having to work meals around it.  Gleevec is such an easy drug to take. . .side effects minimal, though annoying.  My doc hasn't ever mentioned Spryces. . .only Tasigna as an alternative.  Wondrer if he's getting any kick backs from Novartis.  There's been a small scandal out here in Colorado regarding docs who did not disclose what they were getting from pharmaceutical companies. . .mostly just that docs weren't aware of new laws. . .but does make you wonder why they lean toward certain meds.

Guess I"ll see what he has to say and then do some thinking about options.  That said. . .you've mentioned before that one should clear the body of Gleevec before starting another drug.  How long does that take?  I'll be interested to see if my onc is aware of that.  I think he's pretty well-versed, and he has about 7 cml patients. . .though I think I'm having the slowest results of all of his patients.

Just not sure if 'm ready to switch off of the golden bullet, which seems to be doing its job with minimal lifestyle change.  Dang.

Marnie

[Trey]

Tasigna issues are about slower heartbeat (longer QT interval) not faster.  But ask your doc to check that out.  Either drug would be worth taking, but if it were me, I would chose Sprycel for a couple reasons.  But if someone has a history of edema issues on Gleevec, Tasigna may be a better choice.

A break of 2 - 3 days while changing drugs is probably adequate.  There are no interactions, only double side efffects.

[Tedsey]

My onc basically was open to me switching to Tasigna or Sprycel.  I chose Sprycel mostly because the ease in taking it.  So far, so good with side-effects.  They don't appear to be any worse on Sprycel.  I haven't had my first PCR yet after switching.  I seemed to stay flat with Gleevec too, but I was on it for only 9 months (but no log reductions like you, though).  It is hard living from CBC to CBC and PCR to PCR.  I am feeling very anxious about my BMB this coming Monday.  Not the pain, but the results.  Although it is probably more comfortable to have a break between drugs, I did not have one.  It is survivable, but I found it very hard.  I was very sick for about a week.  Nevertheless, I heard from someone who didn't have a break and felt fine.  Best of luck to you.  Keep posting how you are doing.  Do you mind me asking how things turned out with your breast consult and testing?

Wishing you the best,

Tedsey

[Marnie]

Hi, Tedsey. . .thanks for asking.  I had a second round of mammograms (that was quite an ordeal. . .the red tape was a pain), and then spoke with the radiologist.  He felt that there was nothing to worry about, and going to the typical 1-year schedule was fine.  So that was a bunch of worrying for nothing.  The really awful part was that within a week I had the first bad PCR results, the bad mammogram reading, and then the insurance company balked and wouldn't pay for my Gleevec.  Turned out that when my school district switched insurance companies a year ago, and I had to deal with doing the pre-authorization of Gleevec for the second time (this just 6 a few months after having to deal with pre-authorization the first time around), they didn't let me know that it would have to be re-authorized every year.  So all of a sudden, I ordered the G, then got a call from the pharmacy that they couldn't ship it.  Spent hours on the phone and finally had to take an annual leave day to deal with the run-around.  Sheesh!!  I am NOT looking forward to having to go through that circus again if I end up switching drugs.

The job stress this year has gotten so bad that now I have developed severe TMJ (I think that's correct) and have excruciating pain in my ear and behind my eyeball, not to mention that the jaw pain is so bad that I can hardly eat.  I need to de-stress!  Thank goodness Christmas Break is coming up.  What I need to do is retire. . .but that's not in the near future.  Education is not a great career right now, and things in my school district, and my building in particular are not good.  Gotta figure out how to quit grinding my teeth at night, and unclench my jaw during the day.  Never had this problem before, so hopefully exercises will help.  But. . .enough whining.  Life is mostly pretty good.

A question for Trey, as well. . .If I may ask. . .why would you choose Sprycel over Tasigna?  I want to go in to the doc with as much information as I can.  Especially since he seems to be leaning toward Tasigna.

Marnie 

[Trey]

First the TMJ.  They make these plastic thingys like football players put in their mouth, and they might help prevent grinding and reduce pain, and you wear them while sleeping.

http://www.google.co...824b41ba0d4cfd8

You might want to start by reading the Sprycel vs Tasigna posting:

http://community.lls...age/34465#34465

But I like Sprycel for a few reasons beyond these.  First, it is very different from Gleevec and Tasigna, and binds the BCR-ABL in a different way.  Tasigna just binds stronger in the same way as Gleevec.  So if I needed to switch, I would choose the "more different" drug.  Also, Sprycel works against higher level leukemic progenitor cells than Gleevec or Tasigna.  So I figure killing higher level leukemic cells is better.  People have talked about how Gleevec could acutally cure someone with CML, and I have opined that I doubt it, but maybe it would allow us to outlive the CML and it would give up and burn itself out over many years (a dream/theory).  But everyone has missed the real point, which is that if one TKI could cure CML over time, it would be Sprycel.  No guarantees on that, just a "which is better" theory.  So Sprycel would be my personal choice for a second line TKI drug, assuming no predisposition to edema issues.

[Marnie]

I'll be seeing the dentist in early January, so figured I'd try exercises for the TMJ until then, and if there was no improvement then do a mouth splint.  I'm hoping that if I can become more conscious about when I'm clenching my teeth/jaw things should get better.  Of course, I've been saying that for years. . .it just never got to this point before.

I had read the Tasigna vs. Sprycel posts before, but it's always good to go back and re-read, so thanks for directing me there.  I wish Gleevec was working better.  I've gotten kind of attached to the golden bullet.  But. . .I'm sure frustrated with the slow results, so I guess maybe it's time to move on.  I've never been one to take pills. . .I'd rather ride out a headache than take an aspirin.  So I'm probably far slower than I should be to make the switch.  

In any event, thanks for all of the information that you've put together, and for your educated advice.