9 replies to this topic

[Dina36]

Hi Trey and everybody,

Got my PCR results today and it went up from 0.00003 to 0.00008. Been on Tasigna  600mg for two years and three months. This is my first increase and sure very disappointing, I was hoping to see all zeroes this time I did have a mastetcomy and didn't take Tasigna for six days plus I had to take some pain killers while at the hospital like morphine and percocet, Keflex antibiotics so not sure if any of this had any effect. My Numbers were always going down so dr said if my next PCR goes up he would suggest doing bone marrow and switching meds.

Trey would love to hear from you and everybody else.

Dina

[Trey]

Most labs would probably just report undetectable at those low levels.  They may not be percentages, but even then they would be .003% and .008%, and  if so both are nearly 5 log reduction.  That is essentially PCRU. 

You have been through so much lately with the mastectomy.  Hope that is the end of your struggles against the two-headed beast.  I am certain that your future is very bright.

[CallMeLucky]

Those are really low numbers.  PCR can jump around I would not get concerned at this point.

[Dina36]

Hi guys,

Thank you Trey and Lucky.

Trey you made me cry a little but very pleased to hear you think that. Thank you friend!

Dina

[hannibellemo]

Dina,

I'm so glad to hear from you, hope you are recovering well. Those are such small numbers that they are essentially the same for all intents and purposes. I would fight my onc on any kind of change at this point. #1 you don't need the added stress of acclimating to a different TKI and #2 there is simply no good reason to change.

Good luck!

Pat

[Dina36]

Hi Pat,

Yes I'm recovering well thank you,  it's been almost four weeks since my surgery, within the next two weeks I'll start  with breast reconstruction and need at least two more surgeries but mastetcomy was the hardest.

[Marnie]

Best of luck, Dina.. .you've been through a lot.  Your numbers are great.  Take a breath, relax, and feel better.

Marnie

[Tedsey]

Dina,

What would a BMB show at such low numbers?  PCRU at my lab is <0.001 international standard.  PCRU is more than likely how the lab calls it and how sensitive the machinery declares to be.  That said, I am under the impression my counts are good and we probably have the same numbers (and you feel the opposite).  By the way, .00003 to .00008 is, more or less the same.  Your onc needs some math review courses.  As Trey always says, numbers fluctuate.  That is probably the issue.  I think I understand your panic, esp. when there is a BMB mentioned.  A BMB in your case would be the ultimate in conservative, if not total overkill in my book.  If you never loose MMR, that is still good (but try convincing all of us people who go in and out of PCRU of that--LOL).  Like Trey said, you are already there.  What is your onc thinking?

Take care!  Sorry you have been through the gamut.  It totally weakens the spirit.  I so hope you feel strength through these responses.

I wish you all the best always,

Tedsey

[Dina36]

Thanks Marnie and Tedsey. I really appreciate all of you guys who have responded.

[Dina36]

Tedsey,

I have been following your journey and so glad that you are doing very well...plus you are my breastfeeding buddy , remember we got our CML from our prolonged BF lol Getting breast cancer even in these early stages was the last thing that I thought could happen to me, I've breastfed both of my kids for more then four years when combined, unfortunately in my case didn't help much, I still lost one breast but I have to say that I'm still very lucky to have caught it so early, now they are suggesting me to take Tamoxifen for the next five years ugh to prevent my left breast.

Now back to CML, my dr really hopes that my numbers should go down again on my next PCR Test, but also said if they go up he would order a bone marrow ughh and see things from there.

Dina