31 replies to this topic

[Pen_Pen]

So I know your number should be 0 (undetectable) but what number would it have to be in order for you to be really worried?

Over the past year my number has slowly been climbing. This last check my number went from 1.0 to 9.0 (5 month time frame). My Dr wants me to start Tasigna asap but I don't want to start until after the new year. He's not happy about my decision. All my normal blood work is perfectly fine. So at what number should I really be worried to the point that I need to start taking this medicine.

My short and not so sweet story:
I was diagnosed June 2001 (age 20), bone marrow transplant March 2002 (age 21, my brother was a match), cancer free until May 2009, took Gleevec for one year until I had to discontinue due to muscle toxicity (ended up in a wheelchair), was undetectable again until about a year ago.

Thank you in advance for your response!

[cmljax]

Would have to see more of your PCR  history, but if the resutls are a trend up for the last 3 or 4 tests, then a drug switch to either Tasigna or Sprycel is on order.  Also mutation testing

[AdamJ]

Have you been off TKI since you stopped taking Gleevec due to the toxicity?  I am no expert, but I would not feel comfortable with anything over 1%. When I first started TKI the doctor told me that anything under 10% was OK though (he was trying to prepare me in case my first set of test results were not so good, I believe). There are others on the forum that will have more informed recommendations, but I would certainly think that it would be appropriate to frequently monitor your WBC and start TKI as soon as the numbers go out of the acceptable range (if you do want to delay).  I think most people who try cessation usually resume when the number goes beyond MMR. 

[scuba]

Your number going from 1.0 to 9.0 - I assume these are PCR percentage numbers - is almost a one log increase. You have lost response if you were taking Gleevec and your CML is expanding. You should not wait to start a TKI if you were not taking any drug. In your case, Sprycel would be a good choice. And you likely don't need full dose. Your CML will probably respond quickly to treatment. You would avoid many of the side effects on a 40mg re-start dose using sprycel..

 

As important as PCR is to monitoring treatment effectiveness - it is FISH that is definitive on disease re-lapse and progression. Above 1.0% PCR, you should have a FISH test which looks at CML cells under the microscope. What percentage of cells shows CML (bcr-abl gene) will inform how far the disease has advanced.

 

Do not wait - it will only get worse. Treatment now will put you back to PCRU fast. No need to give CML a chance to progress. It is harder to treat if it advances.

[Trey]

The trajectory is not good.  It is already time to "worry" in the sense of doing something about it.  Need to either restart Gleevec (maybe a lower dosage would help avoid side effects) or start Tasigna. 

[r06ue1]

Unless you want to go through having a transplant again, I'd get on one of the four medications available.  If Imatinib is a problem, switch to Tasigna or Sprycel (recommended).  

[Cliffee]

I agree with Trey. It is already time to worry.

 

Definitely get on something. From what i understand Tasigna is very similar to Gleevac so maybe Sprycel? Sprycell also has a good record of reduced dosage working well.

Bosutinib is also known to offer less side effects.

 

You have several choices.

[Pen_Pen]

Thank you for all your comments and feedback. It's nice knowing I'm not alone.

I'm just a little hesitant to start something again. Gleevec caused so much pain in my life to the point of "crippling" me and having to be in a wheelchair. As of right now I feel normal/healthy. I don't want to start taking Tasigna and then start feeling like sh*t all the time. Ugh!

What's the lowest dose you can take of Tasigna to still be effective? I've seen 300 a day but I'm wondering if 150 a day would work. Hmmmmm?

[scuba]

Thank you for all your comments and feedback. It's nice knowing I'm not alone.

I'm just a little hesitant to start something again. Gleevec caused so much pain in my life to the point of "crippling" me and having to be in a wheelchair. As of right now I feel normal/healthy. I don't want to start taking Tasigna and then start feeling like sh*t all the time. Ugh!

What's the lowest dose you can take of Tasigna to still be effective? I've seen 300 a day but I'm wondering if 150 a day would work. Hmmmmm?

 

You may feel "normal", but you are not "healthy" - your numbers are going up and as Trey noted, it's past time to worry. 

 

Given how you feel about taking anything - you should strongly consider taking low dose Sprycel (20mg) and get started. There is an excellent chance that this dose will be sufficient in your case and drive your PCR levels back down - perhaps even back to undetected. The key is to start taking it now.

 

I take 20 mg. and I am PCRU ('undetected'). I feel no side effects whatsoever. Sprycel works differently than Gleevec or Tasigna. There is a very good chance it will mop up your CML in a way Gleevec did not. You may even be able to go off medication in a few years once you achieve PCRU a second time. Your numbers are increasing because you stopped taking your medication. Don't be stupid.

[Trey]

What's the lowest dose you can take of Tasigna to still be effective? I've seen 300 a day but I'm wondering if 150 a day would work.

 

We are all different, so need different dosages to have the required impact.  You need to try by trial and error.  Sometimes low dosage gets someone all the way down to undetectable, and sometimes not.  At this point you just need to start at some dosage and see if it works well and also has acceptable (not necessarily zero) side effects.  150mg Tasigna per day may be enough for you, but maybe not.  No one knows the dosage requirement answer for any individual.

[kat73]

Agree with all above.  Why are you not considering Sprycel?  It's a lot easier to take than Tasigna, as there are no requirements to fast before and after - you can take it anytime.  It also has a much shorter half-life than your Gleevec did - making the chance of feeling sh***y all the time much less.  Anecdotally, personally, I suspect that people who have a wretched experience with Gleevec do fine on Sprycel, and vice versa.  That was true for me.  I hear you, believe me.  I think if someone told me tomorrow I absolutely had no choice but to take Gleevec again, I'd be looking for the nearest bridge.  But Sprycel is my friend.  Sort of a jerk of a friend, but friend nonetheless.  But, most of all, LISTEN to all these people and your onc - get going on one of the TKI's and pronto.  Like last week.

[thatguy]

At a point you've passed. 1% is the panic switch. Go get another drug, don't wait unless you're checking out. I felt the worst on Gleevec, fyi.

[Pen_Pen]

You may feel "normal", but you are not "healthy" - your numbers are going up and as Trey noted, it's past time to worry. 
 
Given how you feel about taking anything - you should strongly consider taking low dose Sprycel (20mg) and get started. There is an excellent chance that this dose will be sufficient in your case and drive your PCR levels back down - perhaps even back to undetected. The key is to start taking it now.
 
I take 20 mg. and I am PCRU ('undetected'). I feel no side effects whatsoever. Sprycel works differently than Gleevec or Tasigna. There is a very good chance it will mop up your CML in a way Gleevec did not. You may even be able to go off medication in a few years once you achieve PCRU a second time. Your numbers are increasing because you stopped taking your medication. Don't be stupid.

I'm going to speak with my Onc on Monday and see if he'd be okay with me starting out on 20mg Sprycel. I just always thought it was similar to Gleevec bcuz of the edema/water retention.

[kat73]

Way, way, WAY less edema than on gleevec, in my experience.  Onc will probably not let you start at 20 mg, but don't be afraid of 50 or 70.  If he insists on 100, go with it until your numbers are back down; then you can ask to go lower. 

[Pen_Pen]

Way, way, WAY less edema than on gleevec, in my experience.  Onc will probably not let you start at 20 mg, but don't be afraid of 50 or 70.  If he insists on 100, go with it until your numbers are back down; then you can ask to go lower.

You're probably right, he won't let me start at 20mg. If he doesn't I probably will be forced to go with Tasigna. Our insurance will only cover 20mg, anything higher the copy is more than our mortgage.

[kat73]

That canNOT be correct.  The standard recommended dose of Sprycel is 100 mg once a day.  If anything, a super nosy insurance company might question 20 mg and ask for documentation for the reason.  You need to go back and doublecheck this.  Never heard of such a thing.

[AdamJ]

I agree and there is also a copay assistance program: https://www.sprycel....sprycel-assist/. You may not have a copay at all if you enroll in that program. With my current insurance it covers 100% of the copay.  They should automatically set you up with that program at your hospital. Ask them about it if they don't mention it. 

 

That canNOT be correct.  The standard recommended dose of Sprycel is 100 mg once a day.  If anything, a super nosy insurance company might question 20 mg and ask for documentation for the reason.  You need to go back and doublecheck this.  Never heard of such a thing.

[Pen_Pen]

I agree and there is also a copay assistance program: https://www.sprycel....sprycel-assist/. You may not have a copay at all if you enroll in that program. With my current insurance it covers 100% of the copay.  They should automatically set you up with that program at your hospital. Ask them about it if they don't mention it. 

 

Thank you for the website, I'll have to look into that.

[Pen_Pen]

So I guess it boils down to, I need to start something.  The question is which one?  Sprycel or Tasigna?  When on Gleevec I had horrendous muscle cramps and swelling.  I am worried I'll have the same issues with Sprycel.  However with Tasigna, you have to be careful how you eat and I've read you can receive a horrible rash.  It's very depressing but I know I can't be "stupid" and not take nothing.

 

Thanks again to everyone!  I appreciate you all!

[Trey]

The muscle cramps are worst with Gleevec, and not usually a big issue with the others.  You could just pick whichever one you want or is easier for you.