15 replies to this topic

[Pin]

Hmm, well - it seems there are a few of us lately that want to get off the jumping castle.

Just had my 15 month test results come in today at 0.013% (a 0.52 log increase from the last test) and I am a little disappointed (and scared, but doing lots of rationalising and trying really hard not to be).

Here's my history:

Diagnosis: 38% (BM at diagnosis, then all PB after that).

3 months: 12%

6 months: 0.14%

9 months: 0.004%

12 months: 0.0039%

15 months: 0.013%

I'm trying really hard with this one - I know that this is within the margin for error and all that stuff, but I can't help thinking that something that I have changed has done this Boo.

[GerryL]

Hi Pin,

<0.01 is CMR - you're only just above it, if you really really want to count the 0.003. http://cmlsociety.or...Session-BMS.pdf

I don't get to see any of these numbers anymore, maybe that's a good thing. I'd still consider you CMR until your next test. I may have missed this bouncing due to being tested six monthly.

[Rissa]

I got my results today and went from a flat 0 to .001 which isn't much I know, but I understand how you feel about seeing fluctuations in results.  My latest bloodwork was processed at a different lab than the last one.  I was disappointed because I thought I was pcru, but maybe I haven't been after all.  I agree with Gerry, you're still CMR.  And thanks Gerry for the link.  Good information. 

[CallMeLucky]

Same thing happened to me and next one went down.  I know that will do little to calm you but you are likely fine and the next one will go down.

It's a shame, I used to like roller coasters!

[sharcare]

WHAT IS PCRU and CMR?   I never understand what people r talking about w/ their blood work results.  I'm only told my WBC count, which last time was in the low normal.  What else should I be asking for?

Shar

[Pin]

Thanks Gerry, that article is really helpful and has given me new insight into what PCRU and CMR actually mean in more concrete terms - particularly as they are now trying to standardise all our testing. When you say that you don't see the numbers anymore is that because you are under the 0.000 threshold?

Rissa and Lucky - Thanks guys, it really helps me to know that other people worry about these fluctuations (even at this lower level) too. I feel guilty worrying, because I know that objectively this is still a good result but sometimes it is hard to get the lurking thought out of your head that something is about to go wrong and you are just a sitting duck. I find it so much easier to be rational and logical with everybody elses test results than my own!

Sharon - PCRU means that your PCR test for BCR-ABL has not detected any BCR-ABL cells ("PCR-Undetectable"). You may have had a PCR at diagnosis (mine was 38%) and then you will likely get them done each 3 months at first, then sometimes they stretch testing out to 6 months if you are doing very well. If you've only been diagnosed recently (i.e., less than 3 months) then you will be monitored by blood counts (WBC etc.) at first so that's ok. CMR means Complete Molecular Response, which in the article above is described as a 4 to 5 log reduction from 100% International Scale (IS). It's a bit confusing at first (and remains that way for the main part!) but I would suggest that you check out Trey's blog - http://treyscml.blogspot.com particularly scroll down to "RESPONSE TO THERAPY" as it explains what we are talking about

Thanks again guys

[LivingWellWithCML]

I feel your "pain" Pin, but perhaps on an even more anxious scale.  I can't figure out how my PCR could possibly be rising, especially since I responded so quickly over the first 12 months on Gleevec 400mg (CCyR in ~ 4 months, and CMR at 12 months on a non-IS test).  But the last two tests (which are now on IS) were 0.04%, and then 0.1% ... still w/i the margin of error, and the 0.04% cannot be compared to the CMR cause they went from non-IS to IS, so I might not be trending upward at all.  I get all of that, and I might just be at a stable MMR for now (not sure), but the bottom line is that I'm watching the numbers obsessively and have been horrified over the past few weeks while I wait for a 6-week PCR in early November - it's literally affecting my quality of life (to be honest).  Oh, and I can't go for a good run to clear my mind cause my ankle surgery does not appear to be healing quickly enough (who knows, it's still swollen and sore - could be totally hosed, or maybe it's just taking longer to heal).  You should get out and go for a good run on my behalf ... you know it will help you, cause it will show you that you're healthy and it will do wonders for your mind.

Anyway, you are at a very low level of residual disease, so the odds of something turning for the worse are extremely low for you.  If you trust your onc to alert you properly, then I might not even look at PCR results any further and just tell the onc to notify you if he/she thinks anything is wrong (upward-trending PCRs, etc.).  Then you won't even need to look at or worry about the fluctuations, but you'll know that you're in good hands w/ your onc and will be notified if anything ever needs to change in your treatment.  Personally, I'm sick and tired of worrying about it, so if I find that my PCR is stable with the next test, then I'm going to talk to my onc and specifically agree on a PCR percentage "barrier", when I would want to be notified.  Otherwise, I'm not going to care about it and just move on with life and trust my onc to watch the fluctuations, so I don't have to sweat it.  Anyway, I'm seriously thinking about taking that approach ... of course, that assumes that my next PCR test is good.  If not, then sadly (for me), I know that I won't handle it very well and will need a lot of support from family/friends as we decide what's next (dosage increase, TKI change, etc.).

Other than than darn CML thing, I hope life is treating you well ..... your response to treatment is pretty awesome - lots to be thankful for...

[elsaprays]

I agree with Sharon.... Please Help?!  I am a new member to this Blog...and I don't understand most of the abbreviations.  I can figure some of them out... but I think I should be getting more from my doc than I am.  YOU ALL Decide..Here's the deal:  In the summer of 2008 I was sick as a dog - I was fighting Mono and a Vitamin deficiency on top of Spinal Stenosis and arthritis all through my spine (and the rest of my body); scolios which is severe; degenerative disc disease; fibromyalgia; frequent migraines; chronic pain, chronic fatigue; have also a bladder disease (most people have never heard of) called IC or Interstitital Cystitis (not a UTI) and I have hunners ulcers in the bladder lining which is deteriorating, crackling and getting smaller and retaining less fluids all of the time; kidney probs as a kid may have caused this; had endometrios which led to a total hysterectomy and Hormone replacement therapy; I have tons of GI issues including gastroparesis, GERD, and IBS; have to eat small meals and I am on tons of medications; also have polyps on my sinus', TMJ, Sleep apnea, and cysts on my liver with some weird scaring on my liver (probably due to all the endometriosis surgeries); anyway, I was so weak I could barely brush my hair - so I went to the doc and find out about the mono.  When I went back, she said my white cell count was real high and I went back the following week and it was higher so she sent me to a hematologist/oncologist. He said everything was probably OK but did a CT scan of my whole body, a bone marrow aspiration, and some blood work.  I went back in November, 2008 at Oncologists request and he tells me I have CML.  I felt like crying, vomiting, etc. because what I knew of CML I didn't think I would live 2 years and I wanted to see my husband grow old with me and my daughter graduate and get married some day.  Then he told me about the wonder drug Gleevec.  and mumbled a few side effects and pushed me out the door.  He monitored me for a while every week, then every 2,  now, it's been almost 4 years and I go every  6 weeks.  He tells me not to worry, I am in a "Major Molecular Remission" but my BCR/ABL this summer showed a small bump they told me "dont worry it's only 02.7% and anything below 03. is OK.  He has never in 4 years done any other testing other than blood labs every 6 weeks with a BCR/ABL every 12 weeks (3 mos).  No Scans, No Bone Marrow, despite tons of healt problems.  Now my other docs all want to send me to the Oncologist if I have a problem and the Oncologist office wants me to see other docs.  I don't understand if they should be giving me more information, but I don't think a "Major Molecular Remission" is a complete remission from what I have read on the LLS site (bless them by the way).  If any of yall' have any information that a newbie to this site should know, or be asking doc, please let me know.  Despite my research on the net, I feel stupid about this - and I have had tons of side effects and been sick a lot and they always claim its NOT CML and its Not from Gleevec....just call me sickie i guess. I am 53 and would like to know what to expect.  Thanks to all of you!!!! xo

[jrsboo]

Dear Elsa,

I am so sorry that you have been through all that.  My biggest lesson to take from my 2 year roller coaster that is CML is that you have to be your own best patient advocate.  Read through Trey's blog as best you can.  Then given your medical history, perhaps it is time to talk to a CML specialist.  Not just any oncologist, but someone who really understands the disease, the new medications and the trials that are out there for us.  If you live anywhere near Seattle, Portland or Houston, there are marvelous research centers where work is being done on CML, and the doctors are experts. 

Even if you don't end up switching doctors, a second opinion from an expert can alleviate fears and explain things better for you.

I have learned to keep switching doctors until I find one that really listens to me, takes the time to explain everything I want explained, and has no hesitation giving me their email address for when emergencies come up. 

Take a deep breath, there are a ton of side effects from these drugs and it seems from the stories on this board, that if you have other diseases to fight along side the CML, the side effects can be heightened.  Just my observation, no clinical data on that one.

Warm Hugs,

Caroline

[GerryL]

Hi Elsa,

Once you've achieved MMR and have maintained it for a few years the chances of you relapsing gets lower and lower, as long as you keep taking your Gleevec as prescribed. Sometimes your level of CML can bounce around a little, but as long as it isn't trending back up, you'll still be okay.

The number of BMBs you have appears to come down to your doctor once you've achieved CCyR or negative Fish. I've only had two BMBs and after I achieved CCyR, I've only had my CML level measured through a blood tests. I only have blood tests every six months and see my doctor then. It has been like this since I reached CCyR.

If you're unhappy with your doctor, then you can always look for another one. The expectation for the majority of us is that we will live a normal life span with the help of the TKIs, so you need to be happy with your doctor as you will be spending a long time with him. I've swapped doctors once already.

Have a read of Trey's blog - linked above, it will help explain a lot of the terminology.

I wish you well with your journey.

[GerryL]

Hi Pin,

I went from a report of "Qualitative Positive and BCR-ABL detected but not accurately quantifiable. The level is less than 0.02" which was considered MMR by my doc at 10 months - at 16 months the report just said Negative for the Qualitative, no information against the Quantative. It was the same at 22 months.

Are the PCR tests done at your hospital? That might be why our reports are so different, mine go through Adelaide.

Also remember we have been on IS test results since we started, so your results are great. Stay positive and let the TKI and your body do their thing.

[elsaprays]

Thanks so much!!

Hugs to you too.

[elsaprays]

Thanks for all of the info. I am definately going to read Trey's blog and consider looking aound for another doctor possibly.  But I am starting a new list of questions thanks to you guys' here!  Thanks again and Best to you in your Journey!

[Pin]

Hey Dan, I know what you mean - I feel like I have had the rug pulled from under me. I am convinced though that for both of us this is going to work itself out. We need more data to make conclusions. I am thinking that perhaps the unusual supplements I took for about 6 weeks of the last 3 months are having an effect. I also took them for 4 weeks of the previous time period, and I wasn't too happy with either test result. Perhaps I have myself to blame? I hope so. I have my fingers crossed that it was something this simple. But if it's not, then maybe it's simply a testing accuracy issue. I am also sick and tired of worrying! It may be a good strategy for us to just not know, I wonder if I could do that. Just trust them to tell me. I don't think I could, I would be too desperate to know! I guess that must be what it feels like to have a stable PCRU, just knowing that nobody really knows what your true levels are, but the canary will notify you if anything's up. Be nice to get there. It'd be nice if all of us could. I did go for a run the other day - and I thought of you and what you said about being healthy - if made me feel better so thank you. I really hope your ankle gets better soon so you can go running again to clear your mind

[Pin]

Hi Gerry, I had a discussion with my haemotologist today about the differences in equipment around Australia. She said that a lot of people send their tests to Adelaide as that is where the first machines/testing protocols were built. She said she would only send mine there if there was some kind of problem (i.e., my results start heading North - in the bad way), but the impression that I got was that our testing is accredited by some sort of standard, but may differ from your testing in Adelaide (she wasn't too clear on how though!). I guess this is why I get them back so fast (today she said around 24 hours is normal)

Mine test results say "detected" and the level is < .01 but my doctor has called up before and gotten "exact" results (0.004, and 0.0039) for me - didn't need to this time though . They're really not exact though are they! Maybe that's what I need to understand better - Anyway, thanks for your help and support - This is a tough road and it's good to know I have people there doing it with me

[GerryL]

Hi Pin,

I'm still a bit confused as to why she would send your tests to Adelaide if they started going up, perhaps she is indicating she would do that just to confirm the results. Since that's not going to happen, it won't be an issue - remember positive thinking.  

Just on your supplements, I was a bit wary when you mentioned what you were on, one of them in particular was something used to cleanse the liver. I steer clear of anything like that, just in case it processes the Gleevec out of the body a bit too quickly.

Perhaps it is better for the report to just show detected and the level is <0.01, rather than going down into such detail, that way you've got a stable CMR and it might lower your stress levels a little bit.