11 replies to this topic

[0vercast]

Are they both necessary to determine my response to treatment?

My Oncologist apparently prefers gauging patient response with FISH tests instead of PCR tests.  I'm just shy of the two month mark now, and my next visit in a month will be my first "BCR-ABL test" since dx, which is what he calls it.  I found out yesterday is a FISH test.  Everybody on here seems to be referring to their PCR results, so I'm a little concerned that he doesn't seem to think these are necessary.  He allegedly is a very well respected HemOnc of 20+ years, and all he's prescribed since 2001 for CML is Gleevec 400-600mg.  He claims that none of his patients have ever lost response or needed a transplant, and that all are doing well and "in remission, less than 1%."  I'm not 100% sure exactly what he's talking about when he says this.  Sorry, I'm new to this.

Should I be concerned about this, maybe to the point of looking for another Oncologist or a CML specialist at the Mayo Clinic, which is about 3 hours away?  The new Coborn Cancer Center that I go to now is about 3 minutes from my house.  Maybe I'm worrying about nothing.  I achieved hematologic remission/response after about 2.5 weeks of treatment and I experience no side effects from the Gleevec.  I like and trust the doc, but I can't help but be concerned that he appears to be quite set in his ways.

Thanks, Joe

[Floa7]

Hi Joe, I am also a newbie here too. I am going for my first 3 month check-up, getting the BCR-ABL next month. So what is this test going to show me? What does the PCR test show? What should I be looking for, a number or %??

I enjoy reading comments from all of you guys with CML.

Thanks, Flo

[scuba]

Hi Joe,

Required reading at the CML academy is here:

http://community.lls.org/thread/2821

Trey does an excellent job explaining the different tests. After you read this, post questions so you can get additional clarification.

One way to think about the two tests is that FISH is cellular based and used in the beginning of treatment to good effect to track initial response to treatment. PCR measures what the CML cells produce (transcripts) and is very effective for tracking treatment once FISH goes to near zero. FISH tests are important first (with maybe a baseline PCR) then PCR is important once FISH goes to near zero (often zero) and then PCR is used to track progress further. A baseline PCR is usually taken in the beginning to establish your starting point.

Most people on this forum have been around a long time (years) - so they talk mostly in terms of PCR because FISH is no longer relevant. You will get to that stage yourself.

[Susan61]

Hi Flo:  First let me welcome you to the group, and also to Joe as I have not read his post as of yet.  It can be very mind boggling in the beginning to try to learn everything, and the best thing is to go slowly and learn what you can..  In the beginning they do various testing to see if you do have CML and to what extent.  Scuba explained it very well, and then he gave you the what we call required reading for all our new people to help them get a good picture of how CML is diagnosed before they start treatment etc.

     As you go along and reach each stage of response, then they taper off on some of the testing that you do in the beginning.  .  I am one of the long time oldies Living With CML, and I am one of those who just does PCR testing which is just getting a simple blood test to monitor your response and make sure your still where you should be. I just tryed to put it as simple as possible, because I am not good with all the numbers and terms like others are.  Even after 13 years of having CML, I do not understand a lot of the technical terms.  I hope you read what Scuba posted for you, and got a better understanding of it all.  What drug have they put you on, or as we refer to it as a TKI?

    I am on Gleevec 400mg. a day, and we have many others on a lot of the newer TKI drugs that came out  since Gleevec.  You can share a little of your experience with us if you want to on how you found out you had CML.

[PhilB]

Hi Joe,

Scuba has pointed you to one of Trey's great posts, but for anyone who finds all the technical bits are a bit hard to get their head round at first, try this for an analogy:

Imagine a huge farm (you) with an infestation of rabbits (CML).  As everyone knows, all rabbits hate rap music, so you start blasting them with Eminem records (Gleevec).  To tell whether the records are being played loud enough you need to see what's happening to the size of the rabbit population.  In the beginning the best way to do this is just look out your window and count how many rabbits you see (FISH test).  When you get down to the last few rabbits you probably won't see any if you just glance out the window anymore.  To keep track of the residual population you need to go out and count rabbit poo (PCR test).

In the beginning there's not much point in keep going out counting the droppings when you can see the little critters hopping about all over the place.  I therefore wouldn't have any concerns that your doctor isn't bothering to do PCR tests at this stage.  When the FISH test starts to get towards zero, that's the point he should stop doing the FISH and move over to PCR only testing.  Discuss it with him.  If he sees no need to ever do PCR, then either try to educate him or change oncs.  If he is just following the timeline above then no problem at all. 

As Scuba says, most of us on here have had CML for a while now.  We never see an actual rabbit any more so we are just obsessively hunting about for rabbit poo - and wishing we didn't have to keep playing that wretched 'music' all the time.

Phil

[scuba]

Joe - According to PhilB, this is what you are looking for:

Tell you Oncologist that once the Rabbits are killed - you want to know how much of this stuff you have left.

Then if you can't find any more of this stuff you can stop that 'wretched' music. And dance to silence.

If you decide to chime in, Trey, reply to PhilB - he started it.

[0vercast]

Great post!  I like the analogy.

Thanks

[Floa7]

Hi Susan,

My son had a yearly health screening thru work last fall and told to go to his family doctor. His wbc were 67K Doctor sent him to the cancer center after a CBC. The oncol testing him for CML blood work and BMB. His blood work was sent to NJ and got frozen and had to have it done over again. He started Gleevec 400 on Jan 19. He had bone pain and is now on G 300mg. He also gets his 3 month checkup in May.

My other sons new gf had lymph gland swollen in leg last fall. had it removed and biopsy was cancer. She had pt scan and showed 4 swollen lympth nodes. Her blood work is fine. I believe she said it was Hodgkins Leukemia. Her oncologist said it could take up to 20 years for it to show up in the blood. She gets checked every 3 months, now.

Well I was checking CML out on the puter, over my son. While I was having night sweats, fatigue, diahrea and stressed out. I made an appt with doc for left pain under my ribs in Dec. That pain diappeared before I saw the doc, but every joint in my right leg hurt the night before. I couldn't stand sit or lay down. Doc gave me script for that. I went back complaining about flu and diahrea, loosing 20#'s in Jan 24th. He put me on diahrea med and antibiotic and said to come back in 3 days if not better. I went back in Friday Jan 27th and he had blood drawn. The nurse on call phoned me that night 9pm to go directly to ER and get admitted. I had wbc of 194 k and platelets were 970 k. I figured then I had CML. I was on hydroxyurea by midnight. Also allopurinal. I am only on Gleevec 400 mg now. I suppose this all had to be approved by my insurance, which takes time. I am doing great with just a few side effects, which I can live with, there not slowing me down any.

I phoned my sister and told her about the CML and taking hydroxyurea when diagnosed and she said she was on hydroxyurea also. Her platelets were 86k 2 years ago and still on the hydrox. 

Thanks for all the info from each and every one of you. It is very helpful site to be on. I will check about the PCR testing when i go back in May, My son and I are both scheduled for a BCR_ABL soon.

Flo

[Tedsey]

Phil,

The depth of your creativity never ceases to amaze me!

[PhilB]

Tedsey wrote:
Phil,
The depth of your creativity never ceases to amaze me!

You're too kind.

Strangely enough, people have often commented on my ability to plumb new depths.

[hannibellemo]

Hi,

I go to Mayo - Rochester and they only did one PCR at dx and then FISH every three months until CCyR. Then PCR every 3 months until MMR and then PCR every 6 months as long as the results remain stable or continue a downwards trend. As Scuba says, you don't need anything more than FISH right now. The only time to worry is if your onc refuses to do PCR once you reach CCyR.

Very good, Phil - couldn't decide if the "plumb" was a pun or not!

Pat

[0vercast]

That sounds about right.  I'll run that routine past the doc in a couple weeks.  Thx.