24 replies to this topic

[simone4]

Hello, I have been away so long but this has been a bad winter for me.

I just received my lastest BCR-ABL transcripts and I need advise.  They

do not look so good.  After being PCRU for the last two tests, they now show

an increase.

Dx 1/09  and earlier test are not IS or lab changes

10/05/2010    .02%

04/05/2011    .02%

10/24/2011     .041%

4/02/2012        negative

10/04/2012      negative

04/02/2013      .045%

Please advice if you have had similar pcr gymnastics and

what did you do about re-testing.  I am on 300mg. of Gleevec.

I am not sure what the log increase is here.  Onc assures that

G. is working but we must keep a much closer eye on it.

I have not explained myself well, but I am not making sense

due to"High Anxiety".

Thanks for help in advance,

Simone

[CallMeLucky]

While this can be very stressful and upsetting, which is completely understandable (I would be upset too) the reality is that this doesn't mean anything.  If these are IS scale, which I believe they are based on the way you described, then you are still in solid MMR.  I know how much we like to see negative and that helps us think about the CML potentially being gone, but the reality is that the negative results did not mean the CML was gone and the recent positive test does not mean it has now returned, it simply means that at the time of those tests the CML was below the detectable limit but it was always there.

There are many factors that can account for why this test went up (or those tests happened to go down).  It is frustrating scary and upsetting but unless you start seeing a consistent trend that shows you are losing response this is nothing more than the cruel reality of the current state of PCR testing.  The test is not exact, it can vary for many reasons.  The fact is you are MMR and have been for a while at 300mg.  You know 300mg is not as strong as 400mg or using another TKI so this is what you may be faced with.  As long as you stay in MMR then it is fine.  If you start to see an upward trend I would not think the worst I would think it means 300mg is not strong enough and you need to either go up to 400mg or if that is not tolerable then switch to a different drug.  This is unsettling but I don't think you should be scared by it - annoyed and pissed off, yes - but scared, no.

For reference, while not exactly the same, here are results of mine from a period of time when I was on Gleevec 400mg - note these are not IS scale, they are straight percentage of BCR-ABL to control gene

3/14/2011	0.00810%
6/13/2011	0.00000%
9/19/2011	0.00084%
12/5/2011	0.00000%
3/12/2012	0.00400%
6/11/2012	0.00000%

One test negative, next one positive for over a year.  PCR testing is not consistent.

[simone4]

Lucky, thanks for your reassurance.  I knew that when I went into "undetected"

it was not as great of a feeling as I expected.  You come out of that and the

anxiety starts up again.  I would like for this result to be my new "normal".

Steady, steady, steady.  

I only hope that I do not lose my MMR, but I have read several

articles on Medline that indicate this might be so.  Others, state

it differently.  I did not want a ABL acquired mutation.  That was the

first thought I had.  I go to dark places, always. And I'm glad you do not.

You are always so supportive on these boards and it is appreciated.

I "threw my back out" (local expression) last week and the pain has not

helped.

Merci,

Simone

[Trey]

After 4 years a mutation is rare, and also the increase is not enough to suspect anything other than PCR variations coupled with the lower dosage.  From looking at your PCR results I would surmise that for your lab PCRU is anything below .01, so .009 would be PCRU for that lab.  That is why some people more easily lose PCRU status.  If true, you only have a 1/2 log increase from PCRU.  Other labs go much lower before saying the result is PCRU. 

You have done very well on low dosage for a long time.  It would be a good idea to re-test in about 3 months.

[simone4]

Thanks Trey for your input.  On the scale from Genoptix it looks llike" CMR or MR 4.5 (0.0032% IS)"

The graph indicates my 4/12 and 10/12 PCR being at 0.000%.  That appears to be over 1 log

increase.  I have the e1a2 transcript (minor)  as well e19a2 (micro).  Thus I will re-test in 2-3 months.

If in fact this is a 1-log increase, isn't that more urgent?  I do not want to lose MMR and I feel

I am headed in that direction.  Would increasing to 400mg. make a difference?  300mg. is like

napalm to me. 

While I have your attention, forgive me but I need to ask if having a fungal infection for those

6 months (ringworm) make a difference in my test. I still have the ringworm but it is slight and

being treated with anti-fungal cream.  The diflucan and TKI's hate one another.  Both need the

same protein in the liver to get their job done.

Apology for all the questions but just need a tiny more help.

Thanks.

Simone

[Trey]

Are either e1a2 or e19a2 showing up on the PCR?

Although you would prefer not to have a one log increase, it is considered most significant if CCyR is lost at the same time, not MMR.  And it may also be a PCR anomaly on any  test.  I doubt the Diflucan had any impact but many things are unknown.

[simone4]

Trey, the e1a2 and e19a2 are not showing up on PCR's.  What I was reading was p.2 under the

heading of Clinical Utilility.  I am so "out of it".

Yes, I know losing CCyR is more significant, but my mind wouldn't allow me to go there,

although I know it is a possibility.

Thank you for your help.

Take care,

Simone

[Trey]

I don't think you ever had the e1a2 and e19a2.  The "Clinical Utility" stuff is just passe-partout (boilerplate).

It is entirely possible that the 2 PCRU reports were the anomalies.  That would have been a very large drop in that timeframe.

[simone4]

Well,this is an update to my latest post.  My onc called on Monday and I am undectable

again.  So the over 1-log increase must have been a mistake.  He could not explain it.

I was PCRU was over a year before this increase in April 2013.

I refuse for my blood to go too this lab again.  This has been the second error

in the 4 and half years since dx. 

All is well now. 

Thanks to all of you who responded and followed my PCR journey.

I will be there for you as well if and when the time comes.  But my new

approach is that these lab results are very unreliable as Trey ( and my

oncolgist) have often reminded us.

Enjoy the summer.

Simone

[CallMeLucky]

Wow!, Just Wow!.  I am both happy for you and sorry for the stress I know you endured.  So many elements of dealing with illness are just unfair.  I am glad this worked out for you.

[matt92711]

Congrats on going PCRU, but your assessment that a mistake was made is not something that you can know for certain. I suspect it is possible that detection levels can go up temporarily due to increased ingestion of wine and other things. The wine decreases the effectiveness of the drug (similar to how grapefruit increases the effectiveness of the drug; not in a good way). Without having your blood checked by multiple labs it would be impossible to know if the results are not consistent with what is in the blood. PCRU is just a fancier version of MMR and does not mean you are cured. Trey may be correct that the variations in levels seem a bit high but again that is just that it seems and not that it is.

Matt

[Trey]

A little alcohol can keep drugs in the bloodstream longer, but alcoholism can act the opposite way to reduce drug effectiveness.  But these things are relative.

http://pubs.niaaa.ni...ations/aa27.htm

[simone4]

Matt,just because I am French doesn't mean I drink wine.  I am allergic to it.

There were no varying factors between tests. Same dosage, same time day, etc.

Simone

[simone4]

Thanks Lucky.  I hope all goes well for you on your next PCR.

Your support has been appreciated through all this chaos. 

Take care.

Simone

[matt92711]

I thought I read somewhere that wine has the opposite effect of grapefruit, very possible I made a mistake. In any case there are things that can increase the metabolism which will reduce the effectiveness of the drug. Also, I think it is possible that the CML itself due to ongoing mutations (not major ones which will cause the drug to fail, but minor ones that make the drug work harder to knock out) can at times have spikes that can quickly appear and disappear. I think the longer you are in PCRU the less likely these spikes are but they can still happen.

Matt

[matt92711]

I just reread my original post to you on drinking wine, I did not mean that you drink wine, it was a bad phrasing.

[TeddyB]

On average i drink around 1 glass of wine every second day, and maybe 2-3 glasses on friday and saturday.

We rented a summer house last week, with a bunch of friends, and we drank an average of 3-4 glasses of wine pr day with dinner, and i had to go for another pcr draw yesterday as they had forgotten to take it at my 15 month checkup. I wonder if my vacation drinking will in some way affect the results, hope not. Whatever the results, at least we had a great time

[GerryL]

Hi Teddy,

Good luck with your results - hopefully onwards and downwards.

[TeddyB]

Thanks GerryL

[LivingWellWithCML]

Good luck Teddy - I'm sure you will be just fine.