10 replies to this topic

[kellbell]

I just wanted to share my news. I went to my 6 month Dr visit today and recieved my fish test results. My Dr. told me it is 0. He said that the fish test is negative and I will need to do a pcr test now, and that I can start tracking my test results. I think he called it a cytogenic response? He said the pcr test will check bcr/abl. I still get confused with these tests and the types of results. My Dr. said the Leukemia is in remmission.  I am so happy to hear this great news!!!  I wish I could remmember all the different testing so I know where I am at. So now I do a more sensative testing to make sure the results keep getting better? And then maybe eventually decrease the sprycel?  Can anyone help me understand where I am at in this. Thanks so much.  Since my Dr. tells me these are great results I am happy and don't worry but it is still nice to know what is involved.                                      

                           Kelly

[mariebow]

so Happy for you, I go later this month.

[kellbell]

Thanks mariebow, I was just reading your post and I guess you where dx 1 month before me. Mine was Feb. 2012. My wbc were 19.9 at dx but they were climbing rapidly. That was double what it was only about a week or two before then. They caught it very early they said. I hope you have very good results when you go later this month!!  

[mariebow]

Thanks, you all keep me in your prayers.

[scuba]

Kelly - Think of it this way. The FISH test is like looking for Rabbits and counting them. Your doctors found no Rabbits. That does not mean there aren't any. It just means they didn't see any to count. So now they are going to look for Rabbit poop. Rabbit poop is left by the Rabbits - and there is a lot more Rabbit poop than Rabbits. One Rabbit can produce a lot of poop. And the poop doesn't move - so they can spot it and count that pretty easily. That's where the PCR test comes in.

Counting Rabbit poop is analogous to PCR testing. Whereas the FISH test is counting Rabbits, the PCR test is counting Rabbit poop. They can't see the Rabbits anymore, but they'll probably see the poop. That means the Rabbits are still around, but too few in number to be seen (or measured). So they look for poop. And over time, they would like to see less and less poop. That means there must be fewer Rabbits if there is less poop. Eventually, it is possible that they can no longer find any poop. It's nowhere to be found - they look everywhere and still no poop. Does that mean there is no Rabbit poop anymore or for that matter no more Rabbits? Maybe - but it also could mean they need to get down on their hands and knees and look really really close, they may find some more poop. And that is what PCR testing is all about. Looking for poop - and hopefully not finding any. Unfortunately - they don't get down on their hands and knees to look really close so some poop no doubt escapes detection. And that's o.k. We just keep looking .... every 3 months and see if we see more poop. 

For someone like Trey - he hasn't seen any poop in a very long time (Susan also) - chances are his Rabbits are all dead. I want my Rabbits all dead too - but I have another plan. I am setting up Phalanx banks to shoot at any Rabbits that appear. I may not get to zero Rabbits, but I am sure gonna kill those suckers when and if they pop there head up. Because ... at the end of the day. I hate Rabbit poop.

[Trey]

CML Testing Explained:

http://community.lls.org/docs/DOC-1273

[kellbell]

Scuba, I like how you explain it using rabbits and rabbit poop. It made me laugh. That simplifies it all, and maybe will even help me with remembering all the testing terms and meanings.  I went to nursing school years ago and used to be very good at knowing things at a cellular level and how these types of things work but I don't know what happened. I forgot everything. I didn't finish either by the way so I guess if you don't use it you lose it. I feel like my brain isn't even capable of retianing things like this anymore. I'm sure if I take the time to learn I probably still can but I have two teenagers that keep me sharp in a different way I guess. I really have to stay on top of things or they'll be running the show. Not to mention all the worrying I do.  So is the rabbit the ph chromosome and the poop the luekemia cell? Am I close at least?  Or do both tests detect the ph positive cell but one is more sensative than the other?  I'll get it eventually, anyways thats great for Trey and Susan!! I also wish you no more rabbits or rabbit poop too. I guess I don't like rabbits anymore either. ha ha. I don't know what a Phalanx bank is though. I am going to look it up.       Kelly

[kellbell]

Thanks Trey, I was trying to find this last night. I remember reading this post before. It was getting late though and it seemed to be taking forever to find it so I gave up. You are always very helpful.

[scuba]

Kelly -

Read Trey's link above (CML Testing Explained). It's a very good summary of the terms.

Answering your questions regarding Rabbits:

The Rabbit is the Leukemia cell. They are one in the same in my analogy above. The Leukemia cell contains the Philadelphia chromosome. The FISH test is looking for Leukemia Cells (Ph+ cells) as seen under a microscope.

Leukemia cells make stuff. Specifically, they make bcr-abl messenger RNA transcripts. The transcripts are the rabbit poop in my analogy above. Transcripts are measured using polymerase chain reaction process (PCR) to enhance the transcripts detection. The detection is done using machines to measure the amount of transcripts.

What's interesting is that a single leukemia cell can make little or a lot of transcripts. That is partially why PCR testing can be so problematic. It is possible for a person to have a low FISH or even zero FISH, but still have high PCR numbers. And likewise, it is possible for a person to have high FISH, but relatively low PCR numbers. Dr. Cortes believes that zero FISH and how long it takes to get there is an excellent prognosticator - more so than PCR. Because at the end of the day, it is the number of Rabbits that cause problems, not their poop. He doesn't want to see Rabbit reproduction. He doesn't want to see expansion of the Leukemia cells.

When Leukemia cells get very low in number (way below detection by FISH), PCR will tend to be very low also. It is at that point that Dr. Cortes told me that PCR to him is the canary in the mine shaft. He uses PCR to see if the first signs of trouble are beginning again (i.e. PCR starts to go up). If he sees a trend of increasing PCR's, he will the re-test for actual cells using FISH or even go back into the bone marrow. A several log increase in PCR would be cause for concern that response to the TKI drug is no longer working.

So PCR is a monitoring tool and as long as it is very low and stays there, we are in good shape and can expect that CML won't kill us as long as we keep taking our drugs. If PCR goes to zero (below detection) and stays there for several years, then we have a shot at a functional cure. There is a chance (4 in 10) that CML may have been eradicated or is otherwise under natural control by the body. Several people who follow this forum have stopped taking their TKI drug to test if they can stay disease free. I hope to join them.

[kellbell]

Thank you scuba, I think I'm getting it! I appreciate how you and others here take the time to help eachother. I too hope one day to stop taking the medicine or at least decrease it. Wishing you the best!

Kelly

[Susan61]

Hi Scuba: I think that was great at how you explained PCR. All these years, and I still look for a easy to understand answer.  I know what I want to say sometimes, but not good at explaining.

     I know I know that without rabbit poop for 9 years they probably will not find any in years to come.

     You gave me a good laugh.  Right now I am just suffering with bad Sciatica Pain, and not even thinking about my CML.   I bet you have a remedy for the Sciatica, if so please share it.

Susan