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Is it ”safe” to rely only on PCR test?

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8 months, no Fish- or chromosome test results.

I’ve had Bone marrow biopsies, but have not received any test results besides from at diagnosis.

The 3 month result was delayed and later I was told the sample had too poor quality to be analysed.

I took the 6 month test 8 weeks ago and I still have no result (!). I learned the lab has some problem so it may take another month.

Is there any reason to be concerned? If PCR looks ok, can Fish or chromosome tests show something different? 

My PCR results so far has been: 114% at dx, 12.7% at three months and 1.3% at six months.

Excellent results, they wouldn't worry me. 12.7% at 3 months is within a hair's breath of "optimal", as is 1.3% at 6 months. You're doing great.

You can infer cytogenetic test results from blood PCR tests fairly reliably and your PCRs would suggest they are well under control. Your original bone marrow test may have just been qualitative - i.e. does the Ph+ gene exist or not? (not in what quantity).

All the same, those tests seem late and that is worth chasing up. But there's not reason to be concerned, everything is going well.

David.

Thank you David! I think I’m still a bit nervous about all this. :-)

Hi Guys,

Just as an additional question to this. I’m UK based and was diagnosed just over 3 months ago now. I’ve not had any bone marrow tests as yet and was wondering if that’s normal as it’s not even been mentioned. By my understanding it doesn’t look like I’m going to have one and I forgot to ask last time!

I’ve had one BCR-ABL/ABL test that I’ve received results for and recently had another last week that I’m awaiting the results. The consultant said at diagnosis I was 100% and the test at around 6 weeks showed 60% which  I was told was probably a bit slower than ideal but not to worry. Ideally my next result for 3 months should be at about 10% although I’ve been told not to worry even if it’s as high as 30%, especially with the 6 week result. Consultant is very relaxed about it (in a good way).

A very quick answer of whether this sounds normal or not would be great - especially re bone marrow testing. I should add that I was told that CML was confirmed through molecular testing of the blood. I’m on Imatinib 400mg and I’m reluctant to change drugs as the side effects have become minimal now.

Many thanks, David

 

Hi David,

I have seen several people recently on here being diagnosed without  bone marrow biopsy. As someone who went through a couple of these when I was diagnosed 11 years ago I'm jealous - it is not a pleasant procedure. This does all sound OK.

Don't worry much about missing the targets as long as the PCR trend is going down in good steps. The targets didn't exist when I was diagnosed but if they had I would have missed them, and I got to undetectable in 2 years.

What was your white cell count on diagnosis and now? That's a good first pass indicator of how well you're doing, but on what we have now I wouldn't worry unduly.

Alastair

I agree with Alistair.  I was diagnosed without a bone marrow test and have never, thankfully, had one in 9 years.  The guidelines, when they got them, were less strict than now, but I missed them anyway.  I'm steadily at 0.005% IS these days.  Back then, it was "slow and steady wins the race," and the goal was MMR (or 3-log decrease, or 0.1% IS).  These days there seems to be more pressure to hurry and to get to undetectable, but the reality hasn't really changed - CCyR and MMR are still the so-called "gold standard."  You're doing great!

Hi Alastair,

Firstly thanks for your reply. I agree, I’d prefer not to have the bone marrow biopsy but wouldn’t have a problem if it was needed and going to help. Your reassurance is welcome.

My white cell count at diagnosis was 180 and dropped rapidly when I started treatment. After about 6 weeks it was down to 6.5 and stayed there. It took a while for my red cell count to rise but that is in the normal range as well now (8.6 up to 14.5 in 11ish weeks). Platelets are slightly low at 116 apparently due to treatment but again not a worry.

As for the targets, it’s great to hear people have taken varying times to get to the levels they wanted. It offers a lot of comfort that most people are slightly different but get there in the end.

David

Hi Kat,

Many thanks for your reply as well. As with Alastair’s response your input is very reassuring and helps the mental side of things. Physically I feel very good and I have to remind myself I have an illness, it just comes as a shock when I have a blood test and I’m told that I’m not responding as quick as ideal. Hearing other people’s experiences is a huge help.

David

Hi David, thanks for the additional data - for me this all just confirms you are on a good path, actually very similar to mine.

Best wishes

Alastair

 

David, the question of diagnosis without bone marrow biopsy came up in questions at the patient conference. The clinicians (at that stage from Hammersmith, Liverpool, Glasgow and Leeds) on the panel all agreed that a BMB at diagnosis was potentially useful to detect if anything unusual was happening, but thereafter if results go in the right direction there would be no reason to repeat it. Thus as your results are going the right way, no issue. Please let us know your 3 month result when you have it.   

Hi Alastair,

I hadn’t actually seen your last reply to this thread and stumbled upon it when I was looking to see what I’d said about my previous PCR results, so thank you for the info.

However... I’ve just had my 3 month results and as I’ve only spoken over the phone to my consultant he didn’t have the exact figure but said it was between 30-40%. He was slightly concerned, discussed my case with colleagues at The Christie and I was then informed they are switching me from Imatinib to Nilotinib this Thursday. They are also going to test for mutations. I’m in the unfortunate position that my profession as a pilot doesn’t allow me to work at all until I have cytogenetic remission so a slow reduction in my PCR is bad news in more than one regard.

I also believe Nilotinib is taken twice a day and fasting is required. From a practical point of view, when I do return to work this could be very difficult with timings as my job has me flying long haul routes and I’m in different time zones all throughout each month. It certainly isn’t impossible to work on 12 hour cycles but 24 hours is much easier. Are there any alternatives to Nilotinib that are as effective, or due to my results is this the best drug and I should just live with the difficulties? I’m well aware we are in a very fortunate time that any kind of treatment is available so I’m absolutely not moaning. Thanks so much for all the info so far.

Hi David, I'm not really qualified to talk about nilotinib as an alternative for you - I've been lucky that imatinib worked for me and I have not had to learn about the other TKIs. Have you shared the practical work issues which you would have with nilotinib with your specialist? If not do so - it may be that dasatinib might be a better 2nd line for you. 

Hope this helps, and that someone with more knowledge of the 2nd tier TKIs can advise further.

Hi David,

I agree with Alastair's suggestion that dasatinib (or even bosutinib) may be a better option for you given your working schedules as a pilot and the need to strictly adhere to the fasting regime that nilotinib requires. You should talk to your consultant about this rather than let him/her make the decision for you. 

Sandy

Alastair/Sandy,

I wasn’t sure if Nilotinib was the chosen TKI for reasons I wasn’t aware of, or if it was just traditionally the second one tried if Imatinib failed. I’ll be sure to have a good chat with my consultant and try to make him aware of the potential difficulties and also find the reasoning he’s suggested Nilotinib. I’ve read a little on Dasatinib and on paper that looks a bit of better fit for me presuming equal effectiveness. Thanks a lot for your input. 

Hi David,

It sounds like you're eager to get back to work.  You had mentioned you would be able to return when you have achieved a cytogenetic remission.  I was curious what criteria will be used to determine when you have reached that level of response to therapy?  I had bone marrow cytogenetic analyses at diagnosis and 3 and 12 month.  Three genetic tests were done: cytogenetic analysis, BCR-ABL1 FISH and BCR-ABL1 by PCR (peripheral blood).  The FISH results were 93% at diagnosis and 5.5% at 3 months.  I don't think FISH was done at 12 months.  The cytogenetic results were 20 of 20 abnormal cells at diagnosis, 1 of 20 abnormal cells at 3 months and 20 of 20 normal cells at 12 months.

I'm not sure why my doctor preferred marrow over peripheral blood for the tests.  I think a peripheral blood sample is a lot more comfortable for the patient!

I had quick response with Gleevec initially and then experienced a plateau during months 9 through 12.  I stayed with imatinib for over 5 years and then the PCR numbers started to move up a bit.  Sprycel reversed the upward trend and gave me the lowest PCR numbers I've ever had.

Hopefully one of the more potent TKIs will get you to cytogenetic remission quickly so you can get your normal routine back.  Nilotinib doesn't sound like the best choice for you due to your work schedule.  If you go with Sprycel, the current recommended starting dose is 100mg per day, but recent research has shown that 50 mg per day is safe and effective for most CML patients. The 50 mg dose also brought CCyR and MMR more quickly than 100 mg had in previous studies.

Good luck!

Kirk