15 replies to this topic

[SunNsand]

  I saw my Onc yesterday and my BCR-ABL is undetectable as it was 6 mths ago. He said I didn't have to go back for a year. Initially I was thrilled to not have to walk into the cancer center for a year, but now I'm wondering if that is a good idea. I'm on 300 mg and before my last two visits of undetectable, my BCR-ABL would tend to pop in and out of being detected. My Onc always called them lab errors. It was always a very low number, but now I'm second guessing if a year is a good idea or not. I tried to find my answer on Treys Blog but I couldn't find it.

[CallMeLucky]

I don't believe that would be considered standard practice.  If you are on treatment with a powerful drug like Gleevec you should see your doctor more than once a year.

[LivingWellWithCML]

Congratulations on your PCRU!  Standard practice would be 3 - 6 months.  Given your recurring undetectable status, 6 months should be fine.  I personally wouldn't want to wait a full year ... 

[Trey]

I have been PCRU for almost 7 years and I always have 6 month PCRs and checkups.  I could skip the checkups (if I could get the prescription) but the testing is still important.

[Susan61]

Hi:  I agree with Trey and everyone else.  I get my routine blood work every 3 months, and then every 6 months I get my PCR test along with my routine blood work.  Even though you are undetectable for 6 months, your blood work has to be monitored.  I see my doctor every 6 months when my PCR test comes in to discuss my health in general.  I have been Undetectable for 12 years, but that does not mean something could not go haywire on me.

    Through my routine blood work through the years they have found other issues that are not related to my CML, but I would never go for a whole year.

    You said you did not have to see the doctor, but you did not say if your going for blood work where maybe they are just calling you with the results.

Susan

[SunNsand]

I just double checked my appts. and I don't have labs again until 4/23/14 then I see my Onc 5/7/14.

I really appreciate all of your thoughts, you've confirmed the idea that a year is too long.

Sun

[mariebow]

Susan that is awesome have you ever considered going off tki's all together?   and yes waiting a year for blood tests are too long in between.

[GerryL]

Hi Sun,

Until they change the guidlines, I'd stick with the six monthly testing.

[Susan61]

Hi Marie:  No I have not considered it, because even though we are undetected it only means that through PCR testing they cannot see any cancer cells in the large amount of cells that they check.  It does not mean we do not still have cancer cells there that could start to build up again if we stopped our TKI's.

     I would like to cut back on my dose of Gleevec though, and then let them monitor my PCR testing, but I have mentioned that to my doctor who does not want me to do that.  She feels that I could lose my response, even though I have done so well.  I guess I am just waitng to see more advances in a greater plan of treatment to beat CML.

    Also with me I guess I am afraid to do anything.  There were no TKI's when they found my CML, and I went through a lot prior to starting the Gleevec. I never expected the Gleevec to do what it did for me back in 2000.

   There are so many mixed feelings among everyone as to how to proceed with treatment.

Susan

[Susan61]

Hi:  No do not wait till 2014 to do blood work.  Tell your doctor that is not normal protocol for treatment.  I hope your doctor has treated many CML cases.  I always say we do not need a specialist, but we do need someone who is extremely familiar with the way CML should be treated.  They should also be up on all the latest TKI drugs, and how each one works.

    I would contact my doctor to let him know how you feel, and what you have learned from others.

Susan

[mariebow]

So true.

[Susan61]

Thanks for your encouragement Marie.  I have had a lot of people say I should cut back or stop my Gleevec.

I just pray something newer and better comes along real soon.

[GerryL]

Hi Susan,

You only need to do what makes you feel comfortable.

Yourself and the other long term survivors give us comfort and hope especially when first diagnosed.

[Rissa]

You do what's right for you Susan.  I applaud those who've taken that leap of faith and quit their TKI drugs.  They are truly inspiring.  I haven't reached a consistent undetectable status yet, but even then I don't think I would quit taking gleevec.  Each and every one of us is different and there is no way to predict how we will do if we quit our drugs.  Some may do incredibly well and never have to worry about CML again, and others may not be so lucky.  With some, the CML could come back more powerful than before.  It's a roll of the dice in my opinion, and I'm not a gambler.

[CallMeLucky]

I agree Rissa, but so far the studies where they have looked at this, anyone who relapsed was able to regain their control by starting up treatment again.  Always a gamble, but we know that people on treatment can relapse, so there are no guarantees.  Like you said, you have to do what is best for you and what you feel comfortable with.

[LivingWellWithCML]

Agreed!