We are Pre-B, Standard Risk, ALL- no markers.  I pestered the Onc. w/ the same questions- "how 'bout now, Induction was good?" or "DI went swimmingly, better odds now?"  Every time, he said "80%- through the whole treatment 80%".  So, I started making up my own numbers.  Makes me much happier than him.  In my mind, our kids' leukemia has a C- just average.  It helps me to think this way because a "C" is so very mediocre.  Our kids are smarter than that- they can beat a "C".  

I know t-cell isn't as good as b-cell to have but t-cell is further broken down and one type is that much better than the other.  We were told around the 80%-85%  as the average - I think the lowest for his type of t-cell I heard was like 70%ish or 75% but also heard as high as 90%.  My son didn't have any makers or chromosomal abnormalities that would indicate a worse prognosis and we were just told that due to his being an early rapid responder and being clear at 28 days that this was "good" and can indicate a better prognosis. His oncologist is much more conservative too, not telling us he was in remission (says he only will say it if a parent asks as this can give a false sense of security) and generally just says all is going well and that Aidan is doing great.

I try to think that the survival rate has to very for many reasons, how many people actually follow protocol to a "T" especially on oral meds.  I would say we all do but I am sure there are plenty of parents that will forget and skip a dose here or there and maybe not realize how criticial that could be. Also depending on how kids do on the medications, there are many that have had their protocols adjusted and maybe several meds removed - who knows how this affects prognosis.  There are just so many variables and it scares me but I try to always think, he's come so far and 7 mos ago in the PICU was so close to not making it.  I don't think I ever thought he wouldn't make it at that time (though the doctor putting it into words scared me so much) but I was scared of him staying free of cancer.  Thinking back now, I knew how critical he was and know that had he gone a few more days he may not have (due to the enlarged mass around his heart and lungs).  I think now - he's made it this far the rest hopefully will just be a walk in the park and we'll do ALL we can to keep him in remission and the rest is out of our hands.  I like to think that Aidan will be one of the 80% (or so) that will be cancer free!  If I stay with that attitude I can make it through the day......

I may be slightly confused on this but wouldn't one expect a lower number to be a better indicator? I don't know if they even looked at an absolute lymphocyte count or how this is figured......any ideas?

"The results from the study showed that AML patients who had a low lymphocyte count on day 15 of treatment had a five-year overall survival chance of only 28 percent. However, patients with higher lymphocytes on day 15 had a much better overall survival rate of 85 percent.

For patients with ALL, the most common form of childhood leukemia, researchers found that those children and young adults with a high ALC count on day 15 had an 87 percent six-year overall survival rate while those with a low lymphocyte count had a 55 percent overall survival rate."

I'm curious...how do you calculate the ALC (Absolute Lymphocyte Count)?

My son was diagnosed with T-cell ALL in My 2005.  His WBC count was 366,000.  He was 11 years old at diagnosis.  He finished 3 years 5 months of chemo (And 9 days of radiation) on Oct 15, 2008.  I called the Clinic and they said the ALC was listed on the CBC report just under the ANC value.  According to his clinic CBC reports, his ALC during treatment was exteremely low.  (I went through each one to look it up).  The months since he's been OT his ALC has been in the normal range though. 

To Calculate the ANC:  Add the segs and bands together and then multiply that number by the WBC count (without the decimal point)

Example:  Segs = 37, Bands = 5, WBC = 1.5

                         37 + 5 = 42

                              42 * 15 = 630

                                ANC = 630

Thanks,   Connie

ajsmom:  The docs look at many factors that together give a prognosis.  The blood values that you gave, such as # of WBC at diagnosis, are just one factor.  The time to get him back into remission is also considered, along with many cell changes such as markers or chromosomal abnormalities.

The 'markers' the doc referred to are proteins expressed on the outside of a cell as it matures.  Those proteins are called CD markers.  They determine these using a procedure called flow cytometry.  My son has pre-B cell leukemia which expresses high levels of CD22+ cells, for example.  That tells us that his leukemia develops in a very immature type of B cell.  This often helps them determine what types of chemotherapy protocols to use depending on what markers are expressed by the leukemic cells.

The other big prognostic factor is chromosome changes in the DNA which they look at using cytogenetic analysis.  My son showed no chromosomal abnormalities at diagnosis, but when he relapsed it demonstrated changes in his chromosomes indicating the cancer had mutated.  Common mutations are called translocations or deletions to the chromosomes.  His relapsed leukemia demonstrated what they called 'monosomy 7' where one of his chromosomes in pair #7 is now completely deleted.  The years of research indicate that chromosome deletions are a poorer prognostic factor because the mutated leukemia is now very resistant to chemotherapy.  Translocations (or swapping of chromosomes) can or cannot have prognostic value so that may be why your doc said there was nothing either way to predict.

We're now fighting to bring our son back into remission for a 3rd time after he just endured a stem cell transplant last March and relapsed again only 4 months later.  You will become your own 'educated scientist' on your journey with your son's leukemia.  I went to grad school for oncology, but living it is way more of an education than I ever bargained for.  Words of advice...researching and reading will both help but scare the heck out of you.  You could ask your doctor for the flow cytometry results or the cytogenetic analysis results, but it gets very complicated to sort out.  If you surf the internet for answers, don't believe everything you read, but try and arm yourself with information.  Best of Luck to you & your family as you continue with treatment for your son.

mel

I could very well be wrong here, but I dont think the lymphocyte count is the same as the absolute lymphocyte count.  I think you have to multiply the lymphs with the wbc to get the ALC.

I read a while back about the importance of the ALC on day whatever, but I was in such a mess during induction that I didnt really realise the importance of any of these numbers and certainly didnt keep his bloodwork which was plonked in front of me each morning whilst we we inpatient.  I could get the ALC from our clinic I guess but at the end of the day, its only a guide and certainly not going to put my nerves at peace and could in fact make me even more worried.  Also, wether it relates to t-cell prognosis, Im not too sure.

Even with this calculation, I'm still not sure that I'm calculating correctly because of the way his labs were presented.  We're going to clinic today and I'll bring those old labs from the hospital back in induction around day 15, and I'll see if they can calculate and what they consider to be high/low.

I agree Stephanie, that it really won't make much difference probably with anything (and may in fact make me worry more)--but I always feel like I need to be armed with as much info as possible.  Sometimes I wish I didn't feel like I need to know everything...might make for a less worrisome journey, but what are you going to do...