8 replies to this topic

[CallMeLucky]

I was a little surprised yesterday when my doctor said she would not do another PCR until 6 months of treatment.  She said she felt there was not enough to be determined within a 3 month window and she would prefer to wait until 6 months.  I thought this was strange and that most people get PCR every three months early on.  Overall I have a lot of confidence in my Dr, this was the first thing she said that caught me off guard.

[MACELPatient]

I will likely not get a PCR test until a year given how well I am responding.  Basically 2-3 months now at FISH negative.  I was told it was not necessary yet.

[CallMeLucky]

I've heard differing things.  The weird thing is that the NCCN guidelines, which my Dr. co-authored, states "While a patient appears to be responding to treatment - BCR-ABL transcript levels should be measured every 3 months".

I guess I'll bring a copy of that with me to next appointment and discuss why it doesn't apply to me.

I'm assuming she will do the test if I push the issue.

[Trey]

It is OK to only do FISH (with no PCRs) until the FISH is negative, but once FISH is negative the PCR becomes very important for monitoring "minimal residual disease" levels for any sudden upward change in direction.  Until a steady state 3 log reduction or PCRU is achieved (several in a row), it is wise to have a PCR every 3 months after FISH becomes negative.  After that a PCR every 6 months is adequate.

Always keep one eye on a sleeping snake.

[CallMeLucky]

I forgot to mention in my original post that there was no plan to do another FISH or BMB until the 6 month mark either.

Based on what I read in the NCCN guidelines it seemed strange to me to go 6 mo with only CBC.

The doctor was saying that she felt 3 months was not enough time to determine if treatment was working and that even if there was no improvement she would wait until 6 mo before changing treatment.  I can understand the waiting until 6 mo before changing treatment if there is no improvement, but what if there is progression?  I suppose you can't progress on a FISH that is already at 100%, but wouldn't an increase in PCR suggest that treatment wasn't working and wouldn't we want to see that as early as possible?  I'm willing to give the Dr. the benefit of the doubt, and I can understand the rationale behind not jumping to conclusions too early.  I appreciate her honesty when she said she wouldn't change treatment until 6 mo anyway, so no point in looking at 3 mo.  Just not sure I am 100% comfortable.  Its a fine line between being an advocate for yourself and playing doctor.

[Trey]

The most important time to monitor progress is during the first year after diagnosis.  The second most important timeframe is during the second year.   Any lack of progress, or reversal of progress, is most likely to occur during the first two years.  Close monitoring during the first two years is critical.  After that the Onc can be more flexible.  But deciding to take a "see no evil", la-dee-da, "what I don't know won't hurt you" approach does not instill much confidence.

Quoting: "The doctor was saying that she felt 3 months was not enough time to determine if treatment was working."  Sorry, but this must be added to my list of TDTIEHAOS*.

*TDTIEHAOS: The dumbest things I ever heard an Onc say.  Sadly, it is a long list.

[PhilB]

Hi Garycris,

I'm afraid you have definitely failed the very important DTTMOIAI* test. I've been campaigning for a while to get this one added to the NCCN guidelines.  The standard prescription in this case is a pair of running shoes.

Most oncs wouldn't go for a BMA / BMB at 3 months any longer as it would be judged too invasive for what it would tell, but she should without question be doing either FISH or PCR on peripheral blood.  Whilst she's right that slow progress probably wouldn't cause her to change treatment at that stage, no progress at all or else escalating levels would definitely indicate a change of either dosage or drug should be considered.  In your position I'd be considering trading her in.  You don't need a specialist, just someone who can read and follow a simple set of instructions.

I'm 18 months since dx and have been in MMR since 6 months.  At my last appointment my onc (pushed by the bean counters) very tenatively raised the idea of going to 6 monthly testing.  I said no.  As Trey says the first 2 years are key.

*Does Trey Think My Onc Is An Idiot

[mike43147]

I agree with Trey, 6 months is too long.  The first 2 years is very important and if the doctors don't monitor you closely you're not getting the best care you should be getting.  I have a PCR test every month because I was not monitored closely the first 2 years.  At least I escaped the BMT for now.

[CallMeLucky]

I'm going to hold back from changing doctors just yet.  Overall she appears to be very good.  Perhaps she misunderstood my question?

At my next appointment I am going to bring a copy of the NCCN guidelines, she should be very familiar with them since she is one of the co-authors, which is why this seems so strange to me, you would think she would stick to the guidelines 100%.  I'm going to ask her to go over them with me, specifically the part where it says BCR-ABL transcripts should be done every three months during initial treatment and then just ask the question "why doesn't this apply to me?"  Hopefully she will agree and we can chalk it up to a misunderstanding.  If she doesn't agree then I have to figure out why and decide if there is something there I don't like and only then would I consider changing doctors.  Regardless of any reason, I am going to insist on getting the test at three months, if for some reason she refuses, then I guess I would have to change doctors at that point because I would no longer be comfortable.  As I stated to someone else in another thread, this disease sucks enough that I don't need to walk around second guessing my treatment.  I'm figuring it is just a misunderstanding and will resolve itself.  The problem with the doctors is that I don't think they realize that when we walk out of their office they probably don't think about the things we discussed during our appointment until the next time we meet, where as we, the patients, think about the things we discussed continuously until the next time we meet.

Thanks for feedback.