19 replies to this topic

[Pin]

My doctor has just told me that I will likely only be having a PCR test once every 12 months (as that is what is required to confirm response to the Gleevec). My understanding of this, is that it is way (way) too infrequent, as everything I've read suggests testing by PCR every 3 months to detect earlier any loss of response at the molecular level. My doctor also said that any problems with the Gleevec will show up in my blood tests, and these will be done every 3 months instead of PCR testing. Is that even true?? I thought that problems in the molecular testing would show up much earlier than the blood testing and that it was important to switch drugs early if this happens so the CML cells have less time to mutate etc.

I'm not happy about this, as it seems like it's not following the correct (or even just the safest!) protocol and I can't work out why it is being recommended to me - except that I'm in Australia and that our testing may be different here. It's gotten me really worried though.

[GerryL]

HI Pin,

When you're talking about a PCR test are you meaning through a blood test or BMB?

[Pin]

Through a blood test - I don't think I get another BMB unless something goes wrong elsewhere (which is fine with me!).

[GerryL]

The guidelines are here http://community.lls...0811?tstart=180

I think your doc is wrong even at MMR you're looking at a six monthly blood tests for PCR.  Not sure what State you're in (I'm in Qld) - but perhaps a change of doctor might be in order. I changed my Hematologist  earlier, he was a nice guy, but he didn't tell me anything.

Gerry

[jjg]

As Gerry said, maybe this isn't the hematologist for you.  I don't think it is an Australian thing. I'm in Vic and doing 3 monthly blood PCRs (just coming up to the 6 month one). I remember that in the future you may be thinking of a pregnancy? If that is in your future you'll definitely need a on the ball hem.

[Pin]

Thanks guys,

I'm just upset about this because it really doesn't seem to follow any of the guidelines that I have read and now I am concerned about why they are suggesting this for me.

They've said that I will have to pay for the extra PCR testing (if I want to be an annoying patient and request extra ones) as only one per year is covered by the PBS. I was under the impression that the PBS is a national thing though??

Do you have to pay any extra for your 3 monthly PCR testing?

[moon12]

Hi GerryL,

Do you happen to be under the Royal Brisbane Hospital or Princess Alexandra?

[CallMeLucky]

This is not a good way to go about monitoring CML.  Telling a CML patient "we'll detect a loss of response through your CBC rather than PCR" is like telling someone with a brain tumor "you don't need an MRI, we'll know if things are not working if we see a large mass growing out of the side of your head"!  It's a little late at that point and similar with CML if you relapse and it gets to the point where your blood counts are rising then you have already waited too long to find out.  You need to have PCR every three months.  PCR is not that accurate and you need to plot a trend.  How does your Dr plan to do that with annual tests?  Are they at least covering FISH tests every three months to determine if you are CCyR?

I'm not familiar with your country's health plan but you need to explore this and push back.  If that means finding another doctor or traveling to another facility, then you need to do that.  12 mo PCR is not acceptable, maybe after 10 years of being PCRu, but certainly not in the early stages of treatment.

Best of luck.

[Trey]

Should have a PCR every 3 months until at least CCyR, preferably until MMR.  After that every 6 months.

I have been PCRU for over 5 years and I have a PCR done every 6 months.

[jenz]

Trey, do you do bmbx anymore?  Or is all your testing from blood?  I went to see a new doctor last week and his regimine is every 3 month FISH, and PCR from blood for the first 3 years?  and no bmbx anymore unless either of the blood tests comes back funky.  He explained that blood and marrow results are simiilar enough it doesn't make sense to put a patient through it unless necessary.  What are your thoughts on this?  My current doctor is marrow marrow marrow and doesn't trust blood so I do not know how comfortable I am with this.

[Susan61]

HI:  The standard in most states is to do your regular blood work CBC, CMP etc. every 3 months.  Then every 6 months you do your routine blood work along with a PCR Test.  I never heard of 12 months between PCR testing, no matter what level you are at.  I do not know about Australia, therefore, I will let someone else comment on that.  I agree with the others that I would get a new doctor.  You do not sound like you are satisfied with him either, and that is so important.

I always get a copy of anything that any doctor does on me.  I keep a folder with all my blood work, and I do the same thing for my husband.  Whenever we have to see a new doctor, we just bring everything with us. I do not even have to contact the previous doctor to get records.

Susan 61

[Trey]

Jen,

I have not had a BMB in about 4 years.  BMBs are generally not necessary after CCyR (see below for exceptions).  Blood testing PCRs is fine.  FISH on blood is less accurate but still good enough for most people.  FISH after CCyR is not useful.

I would say that BMBs are only important for those in several categories:

1) Newly diagnosed until CCyR is attained

2) Patients who lose TKI drug response -- at least 1 log increase AND also lose CCyR

3) Any patient diagnosed with high risk factors should be watched more closely (BMBs maybe through several years and MMR)

[GerryL]

I'm at the Wesley - HOCA.

[GerryL]

HI Pin,

As long as your doctor ticks the right box on the form for you, you should get the test free through PBS. If you were up here, I'd suggest you try my Haematologist, but I'd be looking for another one down there.

Gerry

[Pin]

Weirrrrrd. I'm going to have to look into this further...Sounds like different rules for different states (or just different doctors, I don't know...).

Ugh - it's not like it's hard enough trying to deal with this already - none of us need this extra stuff.

[jjg]

Yup it shouldn't be this hard.

PBS is national so it will not be a state issue. You had me worried for a minute because it occurred to me that I've not yet done two PCRs in a calendar year and I was wondering if my doc forgot to tell me about a little surprise bill wk after next. My doc normally tells me about extra costs + why would PBS pay for Glivec with a 6 month script and demand that you show it is working and then not pay for PCRs, so I'm sure Gerry is right. If I have to pay anything significant for my PCR on the 15th you (and probably a few others) will be bound to hear about it.

[Pin]

Just as a follow-up to this - I have established now that I can have a PCR test every three months if I *want* to. Which I do. Clearly.  Odd that they weren't going to do it until I pushed though...

[GerryL]

You know you're going to spin out every three months now instead of six.

[Pin]

Yup! I guess it's like that for everyone in the beginning at least.

[GerryL]

Hi Pin,

Most of us still spin around PCR time, even those that have been on Gleevec awhile.