14 replies to this topic

[BigAl]

Hi all,

I have been pcr - for over 8 years and today got back results of a .3 pcr result. I have been on 800 mg but over the last few month missed taking my meds due to the circumstances I was going through.  I was asked to retake test in a month. will be taking my meds religiously like I have always been....

I am hoping to get a pcr - again... Any thoughts on the matter...

Your advise will be highly appreciated.

Al

[CallMeLucky]

It seems like you have a pretty good idea of what went wrong here.  If you were holding well before when you took your meds everyday, I would expect you to go back to that if you start taking them everyday again.  I don't know if you will see that resolve in one month but you should see it start to go back down.  I would be honest with Dr so they know why it went up and don't freak out.

Non-compliance is the number one reason people relapse, so try as best you can to stick to the schedule.

[Trey]

You will likely be able to regain the PCRU status. 

Your experience may be instructive to those who want to stop taking the drugs after extended PCRU status. 

After you have regained PCRU status for a while you may want to try a reduced dosage since you are on max dosage.  You may be able to maintain PCRU over the long term on 400mg.

[threedprof]

I'm sorry to hear that you had a relapse, Al.  How long did you go without taking your meds?

[BigAl]

Thank you all for your replies.

I never completely stopped taking gleevec. I decided to go down to 600mg and might have missed taking a few doses every now and then. I am pretty certain I had an average of 400mg in my blood stream. I am concerned that I grew resistant to Gleevec.

My pcr test is in a few weeks I hope I get a positive response, or a negative result for that matter

[CML2012]

I have been told that it is real important to take the meds at the same time every day and not to miss. I set an alarm on my phone and hit snooze until I take the meds (within 30 to 45 mins if I am busy). This ensures a consistent level. Also for anyone taking Gleevec do not use ibuprofen, it blocks the Gleevec according to a study released earlier this year. I was given this information by my pharmacist.

[BigAl]

Never knew about ibuprofen... Usually take for headaches ... Now that we can't take both paracatemol and ibuprofen what is recommended aspirin?

[TeddyB]

I have naproxen on hand for emergencies, its not supposed to interfere with Gleevec.

Be carefull with paracetamol as it might be hard on the liver together with a tki, but from what ive heard smaller doses from time to time is not a problem.

"Naproxen and naproxen sodium are marketed under various trade names, including: Aleve, Anaprox, Antalgin, Apranax, Feminax Ultra, Flanax, Inza, Midol Extended Relief, Nalgesin, Naposin, Naprelan, Naprogesic, Naprosyn, Narocin, Proxen, Soproxen, Synflex and Xenobid."

[CML2012]

Naproxen is the only thing I use.... In moderation.

[BigAl]

Hello all,  Unfortunately my pcr came back positive again  0.4 I guess i probably got resistant to to gleevec after 8 years... Doctors want me to take a third pcr test then Bmb and will probably take me off gleevec and start me on a new medication forgot it's name...  Was doing really well on gleevec really regret not taking my dose regularly this last year.. All please learn from my mistake and never skip a dose..  Take care,  Al

[GerryL]

Hi Al,

Just wanted to wish you all the best with your change to a new TKI. I'm not sure I would have been able to take 800mg Gleevec, so you've done pretty well for the 8 years.

[BigAl]

Thanks Gerry, I hope I will be able to respond to it and manage it well.

Take good care

Al

[Susan61]

Hi Al:  Hope you do well with either a new TKI or maybe a temporary increase in the Gleevec to get you back to PCRU status.  I have been PCRU now for 12 years, and have never missed a dose, and I still worry about losing my response due to the Gleevec to just stop working.  I would like to cut back my dose to see if I could stay PCRU though.

I am sure you will do fine, just be sure to take your pill everyday.

Susan

[BigAl]

Thanks Susan, appreciate your kind words... I am already on 800mg of Gleevec which i believe is the highest dose. Taking a third blood test next week, will know what direction I will be taking 10 days after that.

Take good care,

Al

[LivingWellWithCML]

I use Naproxen as well, but only when absolutely needed.  I am on Gleevec 400mg and abandoned Ibuprofen after we discussed the study on the LLS board last year. See this thread for the details:

http://community.lls...e/144076#144076