7 replies to this topic

[cml-wife]

This was July: -*we could call this the starting point. This is when he started Gleevec. He wasn't able to take Sprycel without his platelets and WBC crashing so he was off it more than on it.

For Test: MISCELLANEOUS(FEE basis)

Peripheral blood for bcr/abl for CML

Assay performed at reference lab LABCORP, sample sent  0720 11

B2A2 TRANSCRIPT:    93.172  %

B3A2 TRANSCRIPT

<0.001  %

(sensitivity limit of assay)

E1A2 TRANSCRIPT

<0.001  %

(sensitivity limit of assay)

INTERPRETATION:

The quantitative RT-PCR assay is positive for the b2a2 (p210)

fusion gene transcript found in chronic myelogenous leukemia.

Decembers test: -taking gleevec

Assay performed at reference lab LABCORP, sample sent  12-1-11

TEST                                 RESULTS          LIMITS

BCR-ABL1, CML/ALL, PCR,Quant

b2a2 transcript                  6.551 %

b3a2 transcript                  <0.001 %

(Sensitivity limit of assay)

e1a2 transcript                  <0.001 %

(Sensitivity limit of assay)

Interpretation:

The quantitative RT-PCR assay is positive for b2a2 (p210) fusion

gene transcript found in chronic myelogenous leukemia.

For Test: MISCELLANEOUS(FEE basis)

Peripheral Blood for PCR for BCR/ABL for CML

He's having his 3rd test on Friday, and we'll get those results hopefully on the 1st. Would a 3 log reduction from 6.551% be 0.006551%? Am I understanding that correctly? I just want to know what I should be "hoping" for. Is it a 3 log reduction every 3 months? 

Thanks!

[CallMeLucky]

It's not 3 log every three months, it is three log overall compared to the lab standard.  I will let others who understand the log reduction better explain, I find the whole thing voodoo numbers.  The big take away is that he has had a nice decrease since the last test showing treatment is working.  Any time the decimal point moves to the left, that is a good thing.

Congrats.

[Trey]

It looks like the lab is using International Scale, so since he started at 93% (very near the standard 100% on International Scale) a 3 log reduction goal over the long term would be .1% 

As of December he had achieved something over a 1 log reduction.

[cml-wife]

I am anxious to see what his next test says. The great news we already got is that his CBC and Chem panels came back completely within NORMAL limits. Which is amazing because the sprycel crushed his WBC, RBC and PLT's. He was living like an anemic hemophiliac with no immune system when on Sprycel and it was not fun.

How long do people usually take to reach CCyR and MMR? And do CCyR and MMR have a magic number? How do you know when you attain these things? I know what CMR is, but what about CCyR and MMR? I am pretty sure that he has CHR, right? WBC and PLT are normal. (his WBC to start was 400K with 2% blasts and not it's steady in the mid 4K range)

[scuba]

CCyR achievement is determined by FISH where they look at the cells and count how many are positive for the Philadelphia Chromosome (Ph+). Zero FISH = CCyR (complete cytogenetic remission). They like to do this on bone marrow fluid, but peripheral blood is also satisfactory. MMR is determined by PCR and an international level of 0.1% indicates achievement of MMR generally (3 log reduction from 100% to 0.1%). Your husband has already achieved CHR (cell counts have returned to normal).

I am curious if his Oncologist tried lowering the Sprycel dose before giving up? What was the Spyrcel dose that led to the low counts?

I went through the same thing - started at 70mg Sprycel - developed severe myelosuppression, taken off the drug and then re-started on a much lower dose (20mg), where I have been able to maintain to this day.  I do, however, still have lower than normal blood counts that I live with (all three: red, Neutrophils & Platelets). They are close to normal and every so slowly continue to rise which is good enough to keep the treatment up.

Looks like your husband is on the right path.

[cml-wife]

He started on 100mg Sprycel, and was reduced to 70mg. He tolerated that *better* BUT then he started showing signs of toxicity. (Which i question, it was just peeling hands and I wasn't at the appointment, so I don't know exactly what happened.) I am just glad that he is tolerating the G and that his percentage went down.

He said depending on what Friday's PCR says, they will be discussing setting up his second BMB. Unfortunately, the first BMB hey did was a qualitative and not a quantitative test, so we don't have a baseling there.

[Happycat]

Length of time varies, but the oncs like to see CCyR in ca. 12-18 mo post-treatment. I think the std is 12 mos in the guidelines.   Not sure about the MMR guideline.

CCyR is a complete cytogenetic response, meaning the BMB is clean, no leukemic cells visible and Ph+ FISH is zero.  I have also heard that it is roughly equivalent to a 2 log reduction by PCR.

MMR is a 3 log reduction, or a thousand-fold decrease from either your personal starting point, or the average starting point for patients at that lab. Some labs have their results benchmarked against the international standard scale, and some don't, so report the MMR level for just their lab.  For your dh's personal response, he would need to get to 93.172/1000, or 0.093%, to reach MMR.  (If the lab is on IS, then he needs to get to 0.1%, on the "average patient" scale.)

Definitely sounds like he's CHR, since blood counts are normal.

HTH, and if I "misremembered" any of that info, someone will correct me.

Traci

[PhilB]

Just to muddy the waters a little, classically the definition of CCyR was based on cytology that only looks at 20 cells.  FISH looks at 200 or even 500.  There is therefroe a grey area where Ph+ level is below 5% as this would likely be negative on cytology but positive on FISH.  I have seen CCyR defined in some studies as F|SH < 5%.  This is probably the correct figure to use in terms of achieving milestones even though it 'feels' wrong.

And if all that isn't already confusing enough, you need to add in the fact that, particularly with cytology, you are picking quite a small random sample so the results can vary quite a bit based purely on what cells you happen to sample.  That can lead to all manner of apparent anomalies - like the fact that my 3 month results came back as  MMR but not CCyR!