12 replies to this topic

[LivingWellWithCML]

Hi everyone,

Finally got my results over the phone this afternoon.  Things are trending in the right direction, but clearly it's still early in treatment:

Date       Type     FISH  PCR       Log Change            Log Change

                                   (Emory Std Baseline)  (Baseline from dx ratio)

---------  -----    ----  ------- --------------------  ------------------------

3/30/11    BMB/A    98%   0.25     0.50                  0.00

4/12/11    ----------------------- STARTED GLEEVEC 400MG -----------------------

7/15/11    Blood    5%    0.0153  -0.72                 -1.21

10/12/11   Blood    0%    0.0016  -1.67                 -2.19

I have a few questions about these results in anticipation of my appointment at the end of the week ... any feedback would really be helpful:

1. FISH negative at 6 months (probably sooner), but no MMR at 6 months.  Is this considered average, above average, or fast for Gleevec 400mg?
   
2. Should they be looking for blast count in the peripheral blood sample?  It wasn't mentioned to me over the phone, but I'm wondering if that's standard analysis, since it does appear that disease progression could occur even with good numbers.  Yikes.  Am I understanding that correctly?
   
3. The PCR ratio was reported as 1.53E-02 at 3 months, and 1.60E-03 at 6 months, so the sensitivity is 4 places to the right of the decimal point.  Is that pretty standard, or are there more sensitive measures out there?
   
4. I'm trying to decide which log change is most appropriate for me to track. Emory Winship has a pre-defined baseline that comes from an average PCR ratio at diagnosis for chronic phase patients.  I am also tracking the log change from my PCR ratio at diagnosis, which is more favorable.  I don't think that Emory uses International Scale.
   

Thanks y'all!

[Trey]

Negative FISH (CCyR) in 6 months is very good.  Better than average (whatever that is).

Too much worrying about Blasts lately.  A couple people had rare unfortunate issues and the rest panic.  Loudspeaker bellows: "PLEASE REMAIN CALM."

Your PCR results are in ratios, not percentages.  It is the percentages that are generally reportable down to 4 decimal places.  Ratios down to 6 places.  Of course, all depending on lab variables.

You can track whatever log change you like, but somehow I know you will track both anyway.

You are doing well.

[LivingWellWithCML]

That's helpful, thanks Trey.  I will ask about the ratio and the level of sensitivity at my appointment this week.  Four digits didn't seem to be enough, so I'm not sure what's up there.

I will take "above average" response on the first-gen TKI, because Gleevec appears to be treating me well re: side effects, so I'm hoping that's the one that sits with me long-term.  We shall see.

Yeah, the blast count is panic-zone (definitely for me lately!), but still though - shouldn't they be doing some pathology on it just in case?  And I assume that they can discern that info from peripheral blood.  Once again, I'll ask the specialist on Friday ... but he's probably going to look at me like I'm crazy-paranoid.

Thanks for your input, as always -

[LivingWellWithCML]

So, I had a good 6-month appointment today at Emory Winship.  All is going well so far at this point, so he instructed me to call in my 90 day refill of Gleevec 400mg and keep plugging away.

Some thoughts from the CML specialist:

• I asked him about the blast count analysis on peripheral blood (PB), and he told me that there's "zero chance of blasts in the blood if PB FISH = 0%", so they didn't even look for it.  True?
  
• One interesting comment: He doesn't place too much weight on getting to MMR very quickly - he places much more value on CCyR and a gradually decreasing PCR.  He has a CML patient that took ~ 7 years to reach MMR and everything was just fine.  Wow.
  
• He will not be doing a BMB/A ... next PB FISH/PCR test scheduled for February 2012 (9 month point).  I asked him about how other experts recommend a BMB/A within the first year of treatment and what his thoughts were -- his response: "They probably haven't had one done on themselves before." :-)  That is simply not his philosophy.  If one has attained CCyR and decreasing PCR as shown through PB FISH/PCR, then he's totally good with it.  My wife has convinced me to trust him on this one.  Sounds like it'll be an ongoing debate in the CML community.
  
• One comment that I was so thankful to hear -- he said that I should consider myself perfectly "normal and healthy" and I can do whatever I want, LOL.  So the red wine will continue to flow, and I've been cleared to run a half marathon on Thanksgiving.  He had no concerns with distance running having an impact on disease progression.  I follow and pray for BJ Ranier every day (and it looks like he's off to a strong start toward transplant), but there apparently is no correlation at all to the (half?) marathon he ran and the blast crisis progression that occurred within days of the race.  That young man, BTW, is a super fighter!
  

And apparently what I thought were swollen lymph nodes in my neck actually aren't lymph nodes at all.  He said that they are muscles around my throat and it's just part of the new me.  Both he and his PA gave my neck and body a pretty good poke & prod to make sure.  He attributes it to me being super thin (maybe a little too thin for my height, but he didn't seem to have a problem with it).  So my fears have been eased .... for now.

One bummer on the day; my employer (a small consulting firm) just received its health insurance premium estimate for 2012 and it went up by almost 30% - clearly due to my situation.  It won't put us out of business, but it certainly puts a lot of pressure on a small company in a continued tough economy.  Lovely.

My saving grace at the moment is the ability to exercise (running, swimming, and weights).  I work very hard at it, and I think my routine is helping to mask the Gleevec fatigue.  From a fitness standpoint, I was in rough shape when I was diagnosed in March (running slow and stopping a lot -- for no explainable reason at the time), and after 6 months of treatment, I am now running almost as fast as I did back in college, which is pretty crazy considering that my HGB levels are still low.  For those of us who are dealing with TKI fatigue -- I can state for a fact that an exercise routine helps out a lot.

I am finally starting to believe that I can get this CML thing under control!

[CallMeLucky]

Congrats on the good outlook....

[LivingWellWithCML]

Your PCRU is helping with my outlook, Lucky!  Hoping to get where you're at with Gleevec, my friend.....

[SB3]

Congrats on the positive results. I'm only a month into my diagnosis and it's encouraging to see someone at the 6-month stage doing well. I agree wholeheartedly with you regarding exercise. I have already noticed that on the days I exercise, I feel so much better overall and experience much less fatigue (similar to how I felt before dx). On the days in which I don't exercise, though, the difference is incredibly apparent.

[CallMeLucky]

I actually went back to detectable after last PCR.  .00084%.  Be interesting to see what next one is in Dec if it goes back undetectable or something else.

I have to be honest, the fatigue is really getting to me lately.  It's not so much the physical fatigue, I can handle that, but this mental fatigue is starting to be a problem.  Having trouble getting work done, etc.  I've wanted to stay on gleevec, but I'm considering other options if this fog doesn't clear.

[sdl722]

Congrats on the 6 month results Dan.  My onc at MD Anderson is the same way about MMR.  He continually stresses the importance of getting to and maintaining CCyR.  Everytime I ask about MMR he tries to downplay it.  Generally the comments from his team have been that over time PCR will get lower and lower, but that the cytogenetics continue to be very important at the early stages.

[LivingWellWithCML]

Thanks - that helps to hear that other reputable oncs/specialists are saying the same thing re: MMR.  Although I've pretty much convinced myself that anything less than MMR at the next appointment in February will probably freak me out.  I've got to get past that and just try to forget about it, because maintaining CCyR is absolutely the critical measure at this point.

Lucky -- I put on a good face after a "you look great" appointment today, but truth be told, the reality of the diagnosis and everything that comes with treatment has definitely aged me quite a bit over the past few months.  Hang in there -- you're not the only one with the mental fatigue, I assure you.  Mine is probably more characterized as emotional fatigue though.  Any little thing now totally flips me out into a mild panic ... throat muscles mistaken for swollen lymph nodes - are you kidding me?  I have battled a couple of rounds of prostatitis since starting treatment, and that has not been fun at all - extremely painful and freaky.  Although the last urologist I met with thinks it's the stress and anxiety that's causing it more than anything.  Okay, great, and how do we get rid of the stress and anxiety?  Well, get rid of CML ... oh wait, can't get rid of CML ......... vicious cycle of stress+anxiety ensues.  haha.  Your PCR ratio, although detectable, is a very solid MMR (~ 4 log reduction, right?), so clearly you're doing great, and I really want to be at your point soon.  You continue to be one of my measuring sticks for a swift response ... don't you feel special?

I'm with you -- I really want Gleevec to be "the TKI" for me (for many reasons), but only time will tell.....

[grannyd]

Congrats on your good report, things are moving in the right direction!! I understand about your insurance going up, my husband works for our county & new ins plan goes into effect Jan. 1st. I know I am probably one reason for that, with my tasigna costing $8,250.00 for a 28 day supply. Befor CML came along, my husband had started thinking 2012 he would retire, yeah right, scratch that!!!! He will never be able to retire EVER!!!!!! I feel so bad about this situation. Been married 39 years in Dec. of this year, looking forward to retirement, then the bottom dropped out with 3 words, YOU HAVE CANCER, that requires medication for the rest of your life. Now he says, I can't retire, the county needs me now more than ever, what a great guy he is!!!! Hope you continue with great reports, everyone loves to hear good news!!! Prayers, granny d

[LivingWellWithCML]

Thanks granny d.  I hope your husband enjoys his job and can at least take a little time off here and there to enjoy some good times.  I appreciate the good words, and your positive attitude always peps me up!

[Susan61]

Hi Dan:  FIrst let me say Listen To Your Wife!!  You can make yourself nuts worrying about every little number.  Sounds like you have a good doctor.

Once I got to a CCyR I never had another biopsy, and that was back in July of 2000.  I started getting all my testing through my PCR blood work, and still do it that way after all these years.  I get my PCR test every 6 months.  I am due in January for my next one.  My doctor who I had since Diagnosis retired 2 years ago, and my new Oncologist agrees with everything that had been done with my treatment.  She is continuing to follow his protocol.  She said they can see by my PCR numbers if anything is going on without doing a biopsy.  I have been on the 400mg. Gleevec since day 1, and I have to say its been good to me.

I feel its worth the side effects I get to be at PCRU.

Susan