2 Year Bone Marrow Results

We just had our official 2 year checkup a couple of weeks ago and the results are already in!  We are certainly becoming pros at the MD Anderson/bone marrow thing!  We were sitting there in the office waiting and I was looking around and you can pick the new people out in a heartbeat.... so scared, so confused, not sure what is going on or what to expect.  Those are the people who always ask you what kind of blood cancer your husband has and want to talk about it.  The long timers are cool with reading the paper, LOL.  :)  I always love to talk to the new folks and try to give them a reassuring word.  Learning the ropes at MDA definitely takes a while!

When Dr. Quintas came in to see us he immediately asked, "So, why are you here today??!  I look at your numbers and they look great and I'm thinking why is this man here to see me?"  He cracks me up.  You just have to hear him with his spanish accent.  Adorable.  Anyways, he had a bone marrow aspiration and got some PCR results.  Remember last time when the results were "less than .01%"?  Well this time they just left off the less than part.  So his 2 year PCR is .01%.  We would have liked to have seen a repeat of the "less than", but, well, its beyond my control so what can we even say about that?!  I asked Josh what he thought about it and his response was, "Honestly, I do my best not to think about it at all."  And then he winked at me.  :)  He has a thousand opinions about everything in the world but none about this, evidently!  I'll be anxious to see Dr. Quintas in a few months and get his opinion on this bumpy ride at the bottom of the PCR results.

• April 2011     91.43 %
• July 2011         5.19 %
• October 2011     .09 %
• January 2012      .08% 
• April 2012          .02% 
• November 2012  less than .01%
• May 2013            .01%

So shockingly he doesn't have to go back for another BMA for an entire year!!  Isn't that exciting?  Since he can't drink alcohol anymore I think he's kinda gonna miss that post-Propofol drunk feeling!  But he definitely won't miss being sore.  I was a bit nervous about not having a PCR result for a whole year but they told us they will now be using his blood to test PCR levels.  Why on earth they haven't done that all along I don't know.  I have read so many blogs/message boards where folks have talked about getting PCR results from blood and I was a bit frustrated Josh couldn't do that.  I understand that the number of bone marrows was dictated by the drug trial protocol, but still wanted to get more PCR results.  I'm just nosy like that!  Now we don't go back till August and then get to meet with Dr. Quintas in November. 

Thanks so much for keeping up with us, friends!  It really means a lot to get those emails/calls/texts checking on Joshua and seeing how we are doing.  We love you guys!

Two year cancerversary!!

Did everybody wish Josh a happy cancerversary today?  I seriously forgot until I saw something on FB about April Fools!  I just looked back at our 1 year cancerversary post and realize that we still feel the exact same way.... every single little detail about that day is still etched into our brains!  I guess its just not something that you forget. 

We haven't had much to post cause we haven't been back to MD Anderson since November.  We were maybe supposed to have an appointment a couple of months ago, but we did not make it.  They scheduled it on a Saturday (it was just bloodwork) which was really weird, since he has never had one on the weekend before.  We didn't go to it and nobody called or wrote, so I guess it was maybe a mistake on our schedule.  This is officially the longest we have been without having his levels checked.  I would say that is kind of scary, but we feel oddly OK with it.  I think we have kind of accepted that he is going to feel super crappy off an on and its OK.  It doesn't have to mean something awful, it is just part of the journey. 

So here are the big PCR results we haven't shared with anybody.  We've been sitting on them for 3 months now.  :)

• April 2011     91.43 %
• July 2011         5.19 %
• October 2011     .09 %
• January 2012      .08% 
• April 2012          .02% 
• November 2012  less than .01%

YES, they used the words "less than .01%".  Isn't that great?!  He will go in for his 2 year checkup in May where he will have another bone marrow test, bloodwork, and get to meet with Dr. Quintas.   I am looking forward to it, although the scary part is that from here the numbers either go up or stay the same basically.  I have seen for many people that their PCR bounces around a bit at the bottom of the scale.  I can imagine that is a little bit difficult to mentally deal with, so I'm praying his results stay the same!

Those of you who still take the time to purchase all of your Amazon stuff through our link, it is so much appreciated!!  The return rate for us is actually quite large... it adds up very quickly.  I say that cause I am a person who thinks $20 is a lot!  :)  We are able to take whatever we get from Amazon and pay that much more towards our growing MD Anderson bills.  So thank you friends!!

One year PCR results!

So it has taken me forever to write about this!  We did finally get Josh's one year test results back.   The results were good.

• April 2011  91.43 %
• July 2011     5.19 %
• October 2011  .09 %
• January 2012   .08% 
• April 2012   .02%

If I don't seem ecstatic it is because I am not.  I am just a serious Negative Nelly when it comes to this stuff.  I really wanted to see 0.  It's like I had that built up into my head and anything less (I guess I should really say more) is just not acceptable to me!  ;)   And really, folks, this PCR test is just one number.  And totally not indicative of what his future with the disease will be.  These tests can show when things are going wrong, but really aren't great at predicting whose disease will progress or mutate.  BUT, they are numbers.  And numbers are something that our puny little brains can understand.  I can read/hear a hundred times that this number is not the most important thing, and yet I still cling to it.  And the more I read I realize that many people NEVER hit 0.  And that the testing isn't exactly perfectly reliable, so even a 0 result doesn't really mean a 0 result.  But he is continuing to improve, so that is exciting!

So one year out things are going well.  Josh's main side effects are fatigue, nausea, rash, and hair loss. The hair loss is pretty funny!  He has lost tons on his head, but his legs are pretty hysterical.  He has huge areas with not a single hair and then other spots on the same leg that look normal.  I don't know if I will ever get used to seeing his shiny "looks like they've just been shaved" calves walking around.  :)

Dr. Quintas and I agreed that the rash seems to be worsening, but since it is not itching too much they aren't going to do anything about it.  It is slowly moving down to cover his whole body.  Six months ago it was just his head and torso, then his arms too, and now finally his legs are covered in red dots.

We really think that eating paleo/primal has helped him in the fatigue department.  At least as related to his shift work... he thinks it might be a bit easier to stay awake in the morning hours.  He's been eating paleo for six months now and lost a good chunk of weight.  He loves it and wants to eat that way forever.  I'm the one holding us back in that department!  :)

We have officially made the transition to bloodwork every three months, and bone marrow testing every 6 months.  This makes me crazy nervous!  But it has been 2 months since we have been to MD Anderson and things are OK.  That being said, I am anxious for July to come so we can get him checked out. 

The MD Anderson bills are still slowly rolling in.  Every single month we owe more than the month before.  It is kind of depressing to see the bill going up and up.  We are hoping to make some big changes in the next year to help us out in that department, possibly downsizing to free up some funds.  We appreciate those of you who continue to use our Amazon link to purchase your Amazon stuff.

And speaking of bills I really want to talk about a friend of ours that is going through a difficult time.  God brought Gretchen into my life through our homeschool co-op.  She is an amazing lady and her husband was diagnosed with stage 3 colon cancer not long ago.  He had been laid off before his diagnosis and now they are in a difficult financial situation.   He can no longer receive unemployment benefits and they need help with their household bills.  We set up a Give Forward account for them, just like our friends did for us a year ago.  I know how overwhelmingly suffocating the fear of bills can be.  Your world is crumbling around you and yet you are worried about paying your electricity bill.  It is just not how it is supposed to be.  She needs to focus on Robert getting better.  They need to focus on the emotional health of their kids.  They don't need to be focusing on paying their mortgage.  Please prayerfully consider giving to this family.  Even small gifts add up.  Take a leap of faith to help this family you don't know.  You will bless them in ways you can't imagine.  The tangible results of giving to them are obvious.  We can't see the emotional and mental results of helping them in this way, but they are there, and they are oh so powerful.  Thank you, friends!

Elevated Liver and PCR results!

So it feels like years since I've posted any updates!  So sorry for that.  I don't know why but sometimes it is harder to put into words than other times.  Even when it is good news!  And trying to get Josh to write it is like pulling teeth!  :)

Josh went for his regular labwork this month and everything was good, other than some elevated liver enzymes.  Since he started the Tasigna treatments his numbers have been bouncing around, and this month they just happened to be up.  They didn't want to treat it or change his Tasigna dosage, but they did say it is important to keep an eye that it is just bouncing up and down and not trending upward.  I just got on the MD Anderson site and looked at all of his labs from the last year to get a real idea of what is going on.  I know it seems from the outside that not much is going on with Josh's body but on the inside things are constantly changing!  Not a month goes by where his numbers are staying the same - one month a certain thing is up, the next month it's down. 

Despite this changes, overall he is doing phenomenally well!  As a matter of fact, his bone marrow results came back with some amazing results!  Mostly it is a lot of technical mumbo jumbo, but his PCR results are a bit easier to understand.  So far his results have been:

•  April 2011 -     91.43 %
•  July 2011 -         5.19 %
• October 2011 -     .09 %

Great, right?  The goal is to get down to 0!!  So incredibly close, right?  It is super encouraging! 

I know most of you don't care about this, but for strangers coming to the blog dealing with your own diagnosis I want to show what the MDA lab report says about how they measure PCR.  I have seen on other blogs when it is reported differently and it can be confusing.  This is what the report says:

Coexpression of b3a2 and b2a2 BCR-ABL fusion transcripts is detected byreal-time PCR.
The percentage of BCR-ABL to ABL transcripts is 91.43.
COMMENT: Quantitative real-time PCR analysis performed on RNA from thissample for the BCR-ABL fusion transcript resulting from the t(9;22) inleukemia. BCR-ABL and ABL transcript levels are detected simultaneouslyand quantitative results expressed as the ratio of BCR-ABL to ABL levels.This ratio may vary up to one-log because of methodological reasons.  Asof 8/2/07, the assay has shifted to a new platform.

Hopefully that explains it to those of you looking for specifics.  I have gotten so many emails from strangers and fellow CML sufferers and caregivers as a result of this blog.  I sincerely hope that you all find something of use here in what we have written.   Even if it is just to have the comfort of knowing you are not alone on this path!

We appreciate your continued prayers, especially for Josh's liver!  We also have another prayer request that I will hopefully blog about later this week.  We have REALLY appreciated those of you taking the time to shop Amazon through our link!  I have no idea who it is, but we have already made enough to pay off one of the 30 MD Anderson bills sitting on our desk!  Thank you, thank you!!

Some bone marrow results....

So our lovely trial nurse emailed us earlier this week to let us know that they had some partial test results!  Yes, early!  They completed part of the test in house and sent the other part to the Mayo Clinic to be processed, so we will have to wait on those a bit longer.

The news is GOOD!  Josh's PCR test came back with good results.  Obviously we are looking for a number of 0.  But that is going to take time to achieve if we ever hit it.   But until they see zero they are looking for a 3-log reduction as the goal.  So I was right in reading Josh's chart for his original PCR test - he had 91.43%.   So to lay out the numbers....

91.43     - 0 log reduction (base count)

9.143    - 1 log reduction

.9143   -  2 log reduction

.09143  - 3 log reduction

So this most recent test result came back with a result of 5.19.  So you can see we got a 1 log reduction, but we've got quite a ways to go to hit 3 log, if I am figuring this whole thing out correctly.  I know people see these results and think that means everything is completely hunky dory, but I just have to keep it in perspective that yes, things got better, but he has a long way to go. I found this transcript of Dr. Druker explaining the meaning of these tests.  I thought it might help others cause he explains it really well, so here is the important part (warning, this is long and the formatting copied poorly!)....

How do we monitor CML?
Clearly, we can monitor blood counts. We can also test for the presence of the abnormal chromosome that marks leukemia cells, the Philadelphia chromosome.
We can look for the Philadelphia chromosome either through cytogenetics, it can be done on bone marrow, or we’ll look at 20 dividing cells.
We can also use FISH (fluorescence in situ hybridization), either on blood or bone marrow, where we look at 200 cells, either dividing or non-dividing, or a polymerase chain reaction (PCR) where we can look for traces of leukemia in as many as a million cells.
So, let’s talk about this in a slightly different way, and let’s think about this in terms of numbers of leukemia cells. The ideal would be not to have any leukemia cells.
If you didn’t have any leukemia cells, you don’t have leukemia, and if we can ever get you to that point, we can say that you’re cured.
At diagnosis, most people with CML will have a white count of 50,000 to 500,000. A normal white count should be 5,000 to 10,000.
That’s anywhere between 5 to 50 times the upper limit of normal. In a normal bone marrow, there are 1 trillion cells.
Now that sounds like a big number, but that’s how many normal cells are in a normal bone marrow. If the bone marrow’s been taken over by leukemia, you have as many as 1 trillion leukemia cells. That may sound like a huge number, but that’s how many cells a normal bone marrow has, and now your bone marrow has leukemia.
The first goal of therapy is to get your white count down to normal. If you have a normal white count, we would call that a complete hematologic response. So a complete hematologic response simply means a normal white blood count.
Now the problem with that is that we really don’t know how much lower you’ve gone, how close you are to zero. We’ve only reduced the number of leukemia cells by maybe 10-fold, perhaps down only to 100 billion leukemia cells. So we’ve got to do much more sensitive testing, and this is where cytogenetics comes in.
This looks for the abnormal chromosome. This abnormal chromosome, which marks the leukemia cells, comes about because 2 chromosomes, chromosomes 9 and 22, exchange pieces, and you end up with a short chromosome 22, which is called the Philadelphia chromosome, and a longer chromosome 9.
It’s this short Philadelphia chromosome that we can look for in the bone marrow that marks leukemia cells and is actually what causes leukemia. This is what we look for in cytogenetics. We look for the presence of the Philadelphia chromosome.
As I mentioned, we look at 20 cells. Typically, when someone is diagnosed, all 20 of their bone marrow cells will have the Philadelphia chromosome. So it’ll be 20 out of 20 Philadelphia chromosome positive.
Now when somebody has a normal white blood count, what if they still were 20 out of 20 Philadelphia chromosome positive?
What that tells us is that most of their blood cells are still leukemic despite having a normal white blood count, and our estimates would be that that patient has 100 billion leukemia cells left.
Now, the reality is it’s better to have a normal white count than a white count of 500,000, but you could still be left with a lot of leukemia cells.
So the next goal of therapy would be to try to get somebody down to 0 out of 20 Philadelphia chromosome positive, also called Philadelphia chromosome negative, or a complete cytogenetic response. All those terms mean the same thing. It just means we’ve gotten you to Philadelphia chromosome negative.
In reality, we’ve only looked at 20 cells. A normal bone marrow has a trillion. We’ve just looked at a drop in the bucket. We’ve got to get much more sensitive tests if we’re going to figure out how well controlled somebody’s disease is.
Again, however, it’s far better to be Philadelphia chromosome negative than Philadelphia chromosome positive. So we need a more sensitive test known as PCR.
PCR testing is, for those of you that follow some of these crime scene dramas, the cops go to the scene of the crime, they scrape a piece of blood and figure out who did it. We can sort of do the same thing with a test tube, a vial of blood.
We can look for a trace of leukemia in that vial of blood. So with PCR testing, we can amplify a signal, and we can see 1 leukemia cell in between 1,000 to 1 million normal cells.
Now this PCR testing can be qualitative. It simply gives you a positive or negative. It tells you if this Philadelphia chromosome abnormality, which we’ll now call BCR-ABL, is present or not present. We can also do a quantitative test where it gives us an estimate of the number of leukemia cells.
So if we put this back on our graph, the reality is that we now can go from 1 trillion cells down to 1 million leukemia cells, but we have to make a couple of points here.
First, if you do an equivalence ratio, 1 in 1 million is equivalent to 1 million in 1 trillion. So PCR undetectable could still mean you have 1 million leukemia cells left. It doesn’t mean cured, and it also means that we can’t do anything more sensitive to look for lower levels of leukemia.
So PCR undetectable or PCR negative doesn’t mean cured. It just means the lowest level we can identify.
The second point is that about 80% of patients treated with imatinib will be between Philadelphia chromosome negative or complete cytogenetic response and PCR undetectable.
Most people will be there. The only way we can monitor patients in this range, where the majority of people are, is through PCR testing.
So let’s look at this graph, looking at PCR values, and here I’ve taken what’s now known, on the left-hand side, something called the International Scale where newly diagnosed patients arbitrarily would have a value of 100, and I’ve done 10-fold reductions, and you can see on the very far right we have a 3-log reduction. That just means 1,000-fold reduction in the number of leukemia cells, and that has some prognostic importance.
We can make a couple of other points.
First, I’ve shown this on a quantitative scale, meaning the quantitative PCR that gives us a number. If we did a qualitative PCRthat just said present or absent, all of these values would be positive. You couldn’t tell the difference between a newly diagnosed patient who would have a value of 100 and a very, very well-controlled patient, who would have a value of 1, which would likely be a complete cytogenetic response, 0.1 or even lower. So the reality is this quantitative PCR gives us a far better insight into how well controlled people’s leukemia is.
Second, clearly quantitative monitoring is preferred. It gives us an indication of where people are. The problem, though, is that different labs will give you different results. If you come to my hospital in Oregon or Dr. Neil Shah’s hospital in San Francisco, we’ll give you different results. We are working on standardization so that you can go anywhere in the world and have the same testing done and the same results done, but unfortunately we don’t yet have a standardized test. Until then, my
recommendation is that you send your samples to the same lab so that you can follow a trend.
For those of you who are interested, Novartis has set up a program called the CML Alliance™ and they currently use 2 labs. If you’re currently not being done at one of these labs, I would urge you to think about working with your physician through the CML Alliance, to have your testing done routinely at a standardized testing laboratory.
A third point about monitoring is that negative results also depend on the quality of the lab and the quality of the sample. The sensitivities vary from lab to lab, from 1 in 1,000 to 1 in 1 million, and so negative at 1 in 1,000 is not as good as negative at 1 in 1 million. Different labs, again, will have different results.
What do I consider a good response?
There’s a 3-log reduction. Any time you get it, it is a great place to be. (That’s me – Harvey)
Six months, 1 year, 2 years, that’s a great place to be.
The risk of relapse is a half percent per year, and it decreases over time. So at a half percent per year, that means that at 10 years, 5% of people in that category would relapse.
With a complete cytogenetic response to Philadelphia chromosome negative, there is a 2% risk of relapse per year, and by year 4 of maintaining that response, it declines to a half percent per year. So my view is that a stable complete cytogenetic response is equal to this 3-log reduction.

So if you are still reading this then I am way impressed.  It is pretty sad that I now find all this stuff interesting!  It feels good, though, to know what we are up against.  We are feeling encouraged with these results!  We will keep everyone updated when we get the rest of the results next week. We're still waiting on the cytogenetics to come back, which will tell us about those pesky chromosomes!