26 replies to this topic

[CallMeLucky]

Tomorrow I go for my repeat PCR one month after my numbers jumped from undetectable to 0.04. It's been a difficult month trying to keep positive but I'm really scared. If my numbers go up it will almost certainly mean I am resistant to Sprycel and I won't be going any higher on dose. Dr will do mutation test and BMB to see what is going on if anything can be seen. Last time this happened the tests didn't show anything we raised my dose and the numbers dropped. But then they started to creep up again so we raised and they dropped then starts climbing again. The pattern kept repeating until we got to 100mg. My numbers dropped for two consecutive tests and then bounced all the way up to .04. So I don't know what to expect. I really feel like they are going to go higher and I will need to change drugs. Kind of freaked out about that. When I look back at my tests I see that i was stable on Gleevec and 3 mo after switch to Sprycel my numbers started going up. I was on 50mg but it got me thinking if this issue is something newly aquird or maybe Sprycel just never worked well for me. I wonder if I went back to Gleevec if I would stabilize? Dr said he doesn't want to go to Gleevec and would prefer Tasigna unless mutation test warrants something else.
The thing that really scares me is that supposedly Sprycel is like the best drug for all mutations except one or two. So why am I having trouble with it? This really sucks especially around the holidays. I've been trying to keep up beat and go out do things with the family but no matter what I do I can't enjoy it. Just keep thinking about these damn test results.

[Marnie]

Lucky. . .if it makes you feel any better, my numbers are even higher than yours.  I see my onc tomorrow, so it will be interesting to see what he says.  I have no desire to switch to Tasigna at this point...don't want to deal with the dosing schedule.  So I'll stick with Sprycel for awhile longer.  I know it's hard to do, but try to get a handle on your anxiety. 

 

Marnie

[CallMeLucky]

Thanks Marniei appreciate the sentiment. It would never make me feel better though to hear of someone else doing worse. This disease sucks for all of us and I know it can be worse for me and I guess that is what I struggle with. It's the uncertainty and feeling of impending problems. The test will be whatever they are going to be and treatment will adjust accordingly. Just trying to vent out the anxiety.
I hope your numbers level off and come back down and we can both get to a stable place.

[hannibellemo]

Lucky,

 

I'm not sure why you are making the leap to resistance after one increase (maybe two if you count the one that hasn't even happened yet!) Talk about borrowing trouble!  You are still MMR which seems to keep the idea of resistance off the table. "All" the way up to 0.04 is still an incredibly small number. I'm 0.05 up from 0.02 by last test. If you aren't careful you're going to make me worry, too!

 

Am I missing something here? Sprycel evidently worked well enough for you to reach PCRU, something I haven't accomplished yet.

 

Pat

[PhilB]

I agree with Pat that it isn't time to start leaping to worst-case scenarios.  Even if the new test does go up a bit, you can fit plenty of other narratives to those numbers apart from 'AAAGGGHHH!!!! THE DRUGS HAVE STOPPED WORKING !!!!!!'  You may just end up one of the many of us who bounce around in MMR.  Your CML may be initially whacked way on down by increasing dosage, but then adapt to revert back to somewhere safe and pretty stable.  Having said that, here's hoping the numbers DON'T go up as that will be much better for your stress levels.

 

Phil

[pammartin]

It's difficult not to head toward the 'worst case' with this disease.  Positive thoughts and prayers today and tomorrow Lucky.  Hopefully the test is completed and results are returned in a timely fashion, I hate the waiting.

 

Take care

[chrissy778]

Lucky, I am so going to kick your ass.... If you don't remember me, a few days ago you told me about my numbers going up was not significant and when they are this low it is normal for them to jump around Oh and not to worry....I want you to scroll down to the post from mdszj on Pcr questions. Read his top comment then his bottom one.....I think we were all less worried when are numbers were high. Its not funny but when my PCR was 3.457 or 0.413 I never really thought about PCR only now that I am at MMR have I become obsessed. I think about them constantly now that mine went up, to the point that they are going to tell me if I am going to live or die. You are not alone with your anxiety.....

[CallMeLucky]

No Pat you aren't missing anything I'm overly anxious for various reasons and this plays into my fears. 0.04 by itself is not an issue. It was just a big jump from the last couple and it plays into a pattern of my numbers going up then having to increase dose to have them drop and then they start going back up again. I'm at 100 now so not going higher. I know I'm crazy but the doctor does agree there is a pattern, he's basically chalking it up to "this just may not be the right drug for you" and as much as I don't like this I actually accept that answer.
I'm sorry if I am wearing on people I just don't have a lot of outlets to vent with people who understand. Hearing people who know about cml tell me not to worry helps calm me down. Intellectually I know this is ok. The numbers could down or level off or its just not the right drug and a change will likely be fine. I have a lot of difficulty with this. So thanks for tolerating me.

[chrissy778]

Just curious why did you switch off the Gleevec? Only wondering because you said it was good and that is what I take... 

[chrissy778]

We all have the same fears. Don't thank any of us for tolerating you. We are all on here pretty much looking for answers and re assurance. It will work out, you are not alone.  

[chrissy778]

That post I mentioned above is from Oct 18

[CallMeLucky]

Gleevec was hard to tolerate. Heavy fatigue a lot of muscle problems and difficulty thinking clearly. Sprycel has been a huge difference, but first and foremost it has to work. Sprycel has worked keeping me MMR for 2 years but there seems to be a continuous upward pressure. If I had to go back to gleevec I could tolerate it. Basically I was looking for better quality of life. Funny how our perspective changes.

[carrie]

Lucky, It is so frustrating that there isn't one solution for all of us. That is the difficult part for me.

I was diagnosed in 2007. I have been on Gleevec for 7 years. I have never gotten to MMR. I am on a little roller coaster ride going up and down all the time. I increased Gleevec to 500 at one point and even 600. It did not make a difference.  Here are my PCR ABL/BCR numbers since they switched to the International Scale:

August 2012             0.166

December 2012        0.038

March 2013              1.155

April 2013                 0.798

July  2013                 0.104

Oct. 2013                 0.099

Jan. 2014                 0.701

April 2014                1.986

May  2014               1.063

Sept. 9, 2014           1.799

Sept. 24, 2014         2.817

 

If my December blood draw goes above 2.817, then my Onc wants to put me on a new chemo. I am a bit worried about new side effects and being able to teach. The numbers above are just since my lab switched over to the International Scale. So seven years on Gleevec and my numbers have been up and down. Mutations Tests have been done 3 times with nothing being found. I am surprised I have never been switched to a new TKI. I live in a small rural town and many of the Oncologists I have had were "let go" probably for lack of knowledge. I wish Trey was my doctor. He knows way more. So we all are in this boat of constant change, not knowing, anxiety, confusion, disappointment, and so many other emotions in this CML life.

[Trey]

Switch to Tasigna or Sprycel.  You have lost CCyR, so a switch is recommended.

[Damerault]

This is a no apology zone! You aren't wearing on anybody. We all have anxiety and it helps to hear what others are going through. Thanks for sharing and I wish you the best of luck.

[hannibellemo]

Lucky,

 

I agree totally with Damerault! There is no apology necessary because you aren't wearing on anyone's nerves. Remember this is coming from Whiner #1 (me). Just trying to make you feel better - hope it didn't backfire!

 

Pat

[PhilB]

+1 on that.  There's never a need to apologise for whining on here so vent away.  Where else can you go to talk about your numbers or your spangly tights if not here? (That should confuse some of the newbies!)

[chrissy778]

Carrie, Dec 2012 and Oct 2013 I think would be MMR....Also, I believe Treys post was for you...If I were you I would travel somewhere you could get a second opinion and advice from a more CML educated Doctor. I would be mad if my Doctor did not really know how to treat me and was not honest enough to recommend me to someone who could help me. To me this has been going up and down for way to long, 2 years, You could have been way ahead by now if you had the right Doctor. Even if you found a Dr to give you direction with the Dr you have now as far as the proper drug that works for you,...

[CallMeLucky]

Carrie

It's time to switch, the Gleevec got you this far now it's time to move to something else. Highly likely anew drug will get you back where you need to be. The newer drugs also can have less side effects, you may find you actually feel better. I felt night and day between Gleevec and Sprycel. Don't be afraid to switch.
Best of luck

[rcase13]

I am on Tasigna and I am fine with the side effects. You get use to your head being on fire most of the time...

I am thrilled to have most if not all my energy back.