17 replies to this topic

[kat73]

I just got my latest PCR back from Johns Hopkins (their own lab) per usual and they appear to have changed their reporting style and language again.  This time my report said, "(blah blah blah). . . gene translocation in both replicate samples just at the limit of quantification of this assay (approximately International Standard 0.0l% BCR-ABL1 to ABL1 ratio)."  Now, don't get me wrong, I'm pleased as punch.  However, in the past they have reported to the .00 level.  When I emailed my onc, he said something like well, at least it's better than the old cut-off which was 0.05.  But that makes no sense, as I have received many under 0.05, including three that had TWO zeros, in the past.  There might be some explanatory language in the report, but I never can get a copy to read without filling out a form for Medical Records and waiting a couple of weeks.  The result is not reported in My Chart - the head IT guy at JH keeps saying they are aware of the system flaw and are working on it.  (That conversation thread is over a year old!)  My onc, although happy to email me the relevant passage, refuses to make a copy of the whole report and send it to me.

 

Anyway, now that I've whined, here's my question:  How should I interpret this number, other than being simply happy and grateful about it?  Am I wrong to hope that it's UNDER 0.01?  That they've rounded up?  Are they trying to say that they're no longer going to report to the next decimal point because they don't believe in the accuracy of the test to that level?  How does this factor into racking up "deep responses" for a couple of years in order to try cessation? 

 

Man, you just don't say "approximately" to a CML patient!!!!!

[gerry]

Sometimes I think they deliberately try to keep us confused. Lol. My results went out a few more decimal places then had Qualitative written on it, then negative.
They are still running the Cessation trial for people that have achieved very low levels, but I haven't seen any results yet come out of the trial. Hopefully there will be people on there being able to maintain low levels of CML without a TKI.

In the meantime we are all ready to start the happy dance for you. Just let us know when you're putting the record on the turntable. :-)

[gerry]

http://www.nature.co...eu2016115a.html

[scuba]

http://www.nature.co...eu2016115a.html

 

This article is a nice summary of where we are in TKI treatment, cessation attempts and criteria. It is noteworthy that the authors received honoraria and funding from several TKI manufacturers. 

 

From the article, "The important question of how to increase the proportion of patients is being addressed by treatment optimization studies."

 

Much has been said regarding stopping TKI treatment - but for many patients, lowering dose can do so much to alleviate quality of life issues (QoL ; side effects). Many oncologists simply don't want to prescribe lower dose even when patients achieve PCR levels as Kat73 has done (which are excellent by the way). Only when doctors are "told" to reduce dose will these doctors follow the new protocols emerging. I feel sad for patients who are PCRU taking full dose and suffering side effects. This is a crime.

 

Regarding kat73 - it's a shame that added zeroes to the right of the decimal point has patients scrambling when the reports come back with less "information" in the third and fourth decimal place. The truth is, PCR testing below 0.XX % is meaningless. Garbage  - useless. no good. The test that is commonly used is simply not that accurate below that level. The most that can be said is that a single protein or a million proteins (bcr-abl) were detected. This can either be due to CML - the disease - or an aberrant bcr-abl protein synthesis that can naturally occur (). We simply don't know. Only by stopping treatment can one find out if remission can be treatment free or not. Half make it - half don't. What we do know is that 0.0X% is really really, really ---- really very very low level of residual disease. Really low. 

 

The good news is that once PCR falls below 0.1% the prognosis for death due to something else - not CML is huge (to borrow a phrase). CML won't kill us. I was told at M.D. Anderson that the reality is PCR < 1.0% confers great odds of success (i.e. CML won't kill you something else will). CCyR is actually the gold standard (to borrow another phrase). 

 

PCR testing is canary in the mine shaft stuff. It is a way to track trends and let you know that paying attentionis wise - when the test is done by the same lab, in the same way. Over time it can alert a patient if something is trending in the wrong direction. And for the trend to establish one way or another - one needs to see an order of magnitude change. That is a 10 fold increase has to occur. then it could be real. 0.1% is higher than 0.01%. but 0.013% is no different than 0.018% or 0.012% or 0.019%. The test just isn't that accurate to reflect precision to FOUR decimal places. 

 

Reporting PCR values to 4 decimal places is an injustice to patients. M.D. Anderson, for example, does not report PCR values below 0.01% ... (in their own scale). They make no distinction.

 

I hope this helps.

 

Michael

[rct]

Get another doctor.  I don't care who's name is on the building, there is no known reason to not have access to your records in 2016. If we want to know any facet of the entire testing status of Mrs we go online and get it, and if it isn't there we get it within minutes of a phone call during normal business hours, and they are a podunk mid-tier regional care facility that has a fairly robust oncology group.

 

rct

[kat73]

Thanks, guys! 

 

rct - I think when it comes to things like getting a copy of labs, the "podunk" places actually make it easier than the fancy pants places (like mine) do.  My onc sends me the relevant bit, but can't print out from his computer (same reason I can't get it from MyChart at home), as the two recording systems don't talk to each other.  (This is only true for the PCR, for some reason.)  He would have to do more to get it, and he rightly claims that he doesn't have that kind of time.  He's very fast and attentive on getting me the number; I think he's trying to tell me the rest is boilerplate or garbage.  I understand, but I take your point about my right to have a copy without moving heaven and earth.  I will pursue it with the IT guys.  And Gerry illustrates the "mixed message" aspect that can only be seen if you have the whole document in front of you.

 

Michael - Thanks for all those "really"s and "very"s!  I'm encouraged that someday they will count results like mine "in" for the purpose of a cessation trial.  Or maybe the PCR test will become magnitudes more accurate.  Maybe about when they can actually spy a great-grandma leukemic stem cell!  In the meantime, I think this may be my last round of 70 mg Sprycel - next appointment I'm going to propose 50 mg.  He won't go to 20 mg, so I'll take what I can get.

[Trey]

My view is that when the PCR is hanging around PCRU there is no need to cut it with a not-so-precise PCR meat-clever then read the result with a micrometer.  When the PCR is truly negative, it will say so.  Until then there is no reason to quibble over how nearly unquantifiable the result is.  Nearly unquantifiable is extremely good, no matter the number.  Then PCRU is a little better.  But it will still be barely PCRU for some time.  But in ignorant bliss the person will assume PCRU is perfection when it is just somewhere barely below detectable, at least for a while, and they will not quibble about being barely undetectable. 

 

This is not a criticism of you or your post, just a perspective check for everyone.

 

By the way, I am glad it was a lady who posted with a title "Complaining about something small".  I thought this was going to be another post by some guy who was wanting some psycho-therapy about his something small.  So good to see it was you.

Edited by Trey, 29 September 2016 - 07:41 PM.

[gerry]

Missed opportunity for you to supply some psycho therapy then Trey. :-)

[gerry]

A major hospital was doing all the testing for my city and the blood collection agency decided to go into the testing business themselves and bought the latest equipment, it was a shock to a few CMLers who were sitting at PCRU and suddenly had it show up again in their results.

[Billie Murawski]

My view is that when the PCR is hanging around PCRU there is no need to cut it with a not-so-precise PCR meat-clever then read the result with a micrometer.  When the PCR is truly negative, it will say so.  Until then there is no reason to quibble over how nearly unquantifiable the result is.  Nearly unquantifiable is extremely good, no matter the number.  Then PCRU is a little better.  But it will still be barely PCRU for some time.  But in ignorant bliss the person will assume PCRU is perfection when it is just somewhere barely below detectable, at least for a while, and they will not quibble about being barely undetectable. 

 

This is not a criticism of you or your post, just a perspective check for everyone.

 

By the way, I am glad it was a lady who posted with a title "Complaining about something small".  I thought this was going to be another post by some guy who was wanting some psycho-therapy about his something small.  So good to see it was you.

HUH!

[hannibellemo]

kat73,

 

Congratulations, sounds like you are doing just fine!

 

On the other subject, "fancy pants" hospital is no excuse. I go to Mayo-Rochester and all of my results, doc's summaries, pathology reports, labs, etc. are available to me in 3 days on-line. My local onc has everything ready for me at my appointments because he knows I want them. Don't put up with that BS. You, or your insurance company, pay for those tests, you own the results and are entitled to them without having to jump through hoops.

 

Good luck!

[Trey]

HUH!

 

Where the heck have you been?

[kat73]

Oh, Trey!   I never thought about my phraseology . . . also, no criticism taken.  You are quite right and have amply displayed human nature's foibles. 

[Billie Murawski]

Where the heck have you been?

 

Howdy Trey, I've been in a real funk, so I just hide my head and sleep. Not good I know too many things keep happening physical,and personal UGGH! What ticks me off is I had my head examined and even was tested for dementia and alzimers (can't spell that). I can even spell world backwards (that was one of the questions). My daughter had a car accident-shes-okay though.Rons brother died from the same thing Ron had he was only 63. Ron is doing great he's back to his old self even started riding his bike again and does just about everything around here I just can't.

 Last time I was on the board I was getting that tinnitus it got so much worse, I thought I was losing my mind. I went to everybody except Dr. Seuss.Dx hearing loss, noises probably caused by all my meds treatment (get hearing aids and take nerve pills to help me get through the bad episodes. Loud chirping in right ear music in left ear and hissing up the back of my head.I can't stand the thought of anything in my ears so I'm trying to cope with it. Got another squamus skin cancer on my leg a plastic surgeon has to do the surgery because it's right below my knee and right next to my shin bone I guess I'm gonna be laid up after this one I have skinny legs but hopefully he'll be able to do it without a skin graft I guess those really hurt. You asked!!

 Anyway how the hell have you been? Hopefully okay. Did you get a chance to golf in this heat?I know nothing stops golfers but this was a really crazy summer for us.Locals are not used to this heat and I have 3 golf courses in the area. I have a scanner and I heard so many calls for golfers who collapsed on the course.everybody trying to outdo each other. I like the 19th hole. I'm glad to be back my friend . Love Billie

[Trey]

Billie,

Other than those fifty thingies I hope you are OK.

 

I think the sounds in your head are what you hear when you go to a KISS concert.  Maybe a relapse from the 80's.

 

Dr Seuss is an excellent doc.  Hope he can help you.  He helped me with my cat-scratch fever.

 

Did you try that recipe I gave you using telemere shortening?  Works better than Crisco, for sure.

 

Don't drink from Lake Erie.  You know what the fish do there in it.

[Billie Murawski]

Hi Trey,

 Damn I lost the recipe could you send me another copy? I wish I didn't have to drink water out here and I live less than a mile from the lake and being the excellent swimmer that I am or should say sinker I have swallowed my share of lake water. The salmon used to come here to spawn,All fish do is shart, Oh God I'm doomed. I waiting for the noises to turn into voices then I can walk around with a big smile on my face, because then I'll be nutz and nothing will bother me.

  How have you been feeling, still on low dose Gleevac. I wish I could take it because I think it has the least amount of side-effects. But then I'd be back in diapers and carrying a coffee can to throw up in. I'm 68 so I figure it won't be too many years before I'll be doing that again anyway maybe I'll try G again then.  Billie

[gerry]

Hi Billie,
Nice to see you back. :-)
Why can't you take a low dosage of Gleevec like Trey. The nausea and trots might not be an issue for you then.

[Gail's]

Billie, so glad you're feeling better enough to be back. I miss your great sense of humor! As I read about your ear sounds, I was thinking you need some kind of conductor to get your noises in harmony so your music is beautiful. Maybe if it was more boring, like elevator music, it would put you to sleep!