Hey Aj's mom,

My son also did not have an elevated wbc count at diagnosis, his was only 6.6, I believe most kids have off the chart wbc, and that usually is the first sign to check for cancer, your sons being low Im sure tipped them off to something.  I would think, your son is higher risk "statistically", I hate the statistics by the way, but statistically having the T-cell, and probually his age, being a young teenager, automatically bumps his risk up.  Also if our kids are not in remmision by day 30 induction, usually you are bumped up in your risk category as well.

Mel( poskinnel) her post is very good, about the cytogenic reports, this is a very important piece of the puzzle as well. Any hospital might be able to tell you in a day or 2 no blasts present, but the full BMA report usually takes weeks, they are looking at tons of different markers, and translocations...etc. Our full report from late July finally just came in yesterday, and it says my sons leukemia is basically the same as diagnosis, no philedelphia positive, and straight 17/19 translocataion, all our kids might have mostly ALL on hear, but they are all so different, laid out on paper.

Also I think any child who demenstrates a 3 way translocation is bumped up in risk category, our hypoloid(sp), and the other one meaning you have more or less chromosomes then 46, that bumps you up in risk, cns + bumps you up, having the leukemia in testies bumps you up....etc...

Im shocked one of the parents on here, mentioned docs not even telling them anything about the cytogenics report, that could be good, but I would expect at a minimum, all parents should be told, your genetics on this are favorable,or unfavorable.

I would suggest all parents ask your doc, if you dont know, about your childs genetics on your BMA reports, if its favarable, check for yourself, if not, check and see why, an advanced google search with exact phrases, can give you some full study reports, and defenitely lots of abstrats to review. Dont be afraid to ask, and if your primary doc isnt there, maybe ask for them, even ask to see the report for yourself, ask how many kids get that a year....etc..Dont be afraid to make you doc make you understand.

These docs get in a pinch, if your child doesnt respong to treatment, as they "normally" should, and you get off the path a couple times, it can be frustrating, also have a back up plan.

Any All kid that relpase before LTM, most likely will need bmt, its scary but not the end of the world, that is hope, if they need it they need it, but again in that situation "statistically" thats an early relapse, and you move to that.

In a perfect cancer war that we are all in, you successfully finish treatment, and the further out you get, the less it should effect your life, but I gotta think, your always gonna worry.  I wish they would do more studies on the long term effects of all this chemo on our kids as well, I mean do they really know what vincristine can do to a 6 year old 15 years later???? No one has ever asked me to be in a long term study on it, or anything else related to it.

I was under the impression that the t-cell diagnosis didnt have different markers/translocations etc.  We were simply told that Scott had t-cell and were given no more information than that.  If Scotts bone marrow was further tested for more specific information we certainly werent told about it, or the results, if any.

Also, it is my understanding that wbc, age and sex (at diagnosis) are not factors with t-cell prognosis as they are with pre-b.  Statistically t-cell does cause a higher wbc, the disease is more common amongst males, and it is usually seen in older children and adolescents.  It was initially presumed that my son had pre-b and we were told that due to his age (10 and a half) he would be in the high-risk category, when it was confirmed as being t-cell the doctors told us that age was no longer of concern.

Relapse is usually seen earlier in t-cell (according to POG9404 outcomes) with half of all relapses occuring prior to week 62.  Also, even with cranial radiation, cns relapse accounts for half of all relapses (these are more often the ones seen prior to week 62).  The report looked at 125 children, 13 of them relapsed.

I hate the 'r' word, scares the crap out of me.  We have clinic tomorrow so Im a nervous wreck, even off-treatment the fear is just as real, if not more so.  I see the first year o/t as being in the "danger zone".

Best wishes to us all.

Stephanie -

Regarding: "Statistically t-cell does cause a higher wbc, the disease is more common amongst males, and it is usually seen in older children and adolescents.  It was initially presumed that my son had pre-b and we were told that due to his age (10 and a half) he would be in the high-risk category, when it was confirmed as being t-cell the doctors told us that age was no longer of concern."

I am guessing it may depend upon the doctor.  Aidan is t-cell and we were told that his higher wbc automatically put him in a higher risk category (intermediate) and older children and those under the age of 1 would also be higher risk.  Not sure what the age "older" is considered as Aidan is 4.  Again, I bet it depends a bit on the clinic and what their studies and what they've researched and that's how they make their decisions on treatment and the category to put them in.

Ok, I took the study to our onc today and he looked at it (we're in Las Vegas).  He said that while this may in fact be proven to be true one day, because the study is not a national study only performed at one institution means that there are too many variables to determine whether or not this method is valid for ALL.  For example, this particular institution's lab equipment, the fact that they reported results over a 21 year span (in which time drugs and protocols have probably changed), etc., causes the results to be questionable.

He said that when he was doing his fellowship (?), the same sort of thing happened where they saw statistically significant results from a study--but when they changed one simple variable the results drastically changed.  He said in order for ALC to be considered a valid prognostic indicator, more studies would need to be done at a national level.  He could not even tell me his opinion on what a "good" ALC would be, although his NP and I calculated it to be 206 (wbc 290 x lymphs .71) on day 15--that meant nothing to our onc.

Just his opinion though---I would be curious to hear others....

Tonya

I think Lisa is completely right. Percentages have their place...30 years ago, none of us would be having this conversation, because all of our children would be walking the shores of heaven right now.

But they are here, and they are fighting. And the number of children that completely recover from cancer only continues to rise. So we can all take some comfort in the numbers. But true comfort can only come from knowing that what will be, will be; God's will, will always be done.  I worry every day about that dreaded "r" word. But I try to tell myself every day, too, that all the worry in the world isn't going to make it happen, or keep it from happening. I've only been coming to this site for a few days and most of you do not know me at all--I'll try not to always be a holy roller.  But my faith is the only thing that keeps me from going mad every day.

Phillipians 4: 6-7 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Good night, all.

Hey Stephanie,

I know of two t-cell kids from our hospital that had translocations 4:11 maybe??? I looked up that protocol you listed, and that induction is defenitely heavier then the cog0331, that most pre-b all gets put on. I dont know what arm you were on, but even that "standard risk" arm has some heavy hitters, doxarubicin and iv methetrexate during induction, plus it looks like everyone gets the 4 pegs in a row during the second round. Are all t-cell kids cns positive??? I notice it looks like everyone on that t-cell protocol gets the LP triples, usually cns Negative pre-b kids only get methatrexate in spinals, except for the first ones in induction get the meth. plus ara-c.

It sounds like maybe alot of times kids dont get translocations or markers, or it is irelevant. Really if you ask me they base everything for the treatment in what happens the first month.  Age,initial wbc count, pre-b/t cell, cytogenics, response after 30 days, minimam residial diesease  etc...

I know since we have relpased, they do BMA test more, we get one atleast monthly, our first protocol after relapse called for them on day 15 and 35, the whole rounds were 35 days.  I think every child doing this 2.5 year for the girls or 3.5 year for the boys plan, should have BMA's done atleast every 3 monthes.  Like I said in another post 4 kids relapsing right at the end of treatment, whos to say those cells/blasts were not present 3-4 monthes earlier, maybe 10 monthes earlier.  Im also a big believer in the markers and translocations, all the cd-22/cd-20  etc...  Gleevac has done wonders on the philedelphia chromosome and that med for leukemia purposes is only given to those folks. The kids that get it that are PH+ go straight to transplant and have done very well with it, there has to be something with it.  It was brought up for my son to have rixumab, but he expresses very little cd-20, so he didnt get it.  I think the furture to the cure is in those markers  etc...

Steph and all........(regarding t-cell studies)

Aidan has t-cell and is in the following study http://www.cancer.gov/search/viewclinicaltrials.aspx?version=healthprofessional&cdrid=514500 or if not the exact it follows his ArmA perfectly and all the others match as well.  I am not sure how close any of these arms are similar to treatment for b-cell or not but I know a few teens that one was dx at age 1 (not is 16 or 17) and he was on a similar regimen from what I've heard, and then another young lady (about 15 or 16) who just had her 5 yr anniversary and many of the meds she was on Aidan is also on.

At dx (this past Dec), Aidan did have a cytogenetic report and based on it and his wbc at dx and the fact that on the cytospin had found 3 wbcs (I think blasts) in the CSF was put in an intermediate category.  He was an early rapid responder and at day 15 (I am pretty sure that was the date it was done -can't remember off the top of my head those 2 weeks were spent in hospital and were a whirlwind) was free of cancer in the bone marrow and CSF.  Regardless if he'd had the same wbcs at dx or the few found in the CSF, he'd have been placed in the intermediate category.  If he'd been free of it in the CSF (as originally they had thought) and a lower WBC at dx and had the same cytogenetics then he'd have been placed in the low risk category.  If he'd have had over 5 in the CSF or not responded well to inititial treatment and/or been older, he'd have been bumped to the higher risk.  He ended up being put in Arm-A (due to intermediate risk was not eligible for the neralabine arm) and didn't due the experimental high dose Methotrexate, just the normal dose.  Due to the CNS involvement he did get 8 days of cranial radiation as a precaution (this is done w/any that have blast/wbc in CSF at dx - under 5 and if over 5 are found they do a higher dose radiation protocol).

I did feel a bit more comfortable to be in the more standard treatment arm, but then think if getting neralabine and/or higher dose methotrexate could give him a higher chance of EFS - I would not have minded.

The way his oncologist explained the use of higher dose methotrexate (in consolidation or IM - I'd have to go back and look when that was given) is that they do this protocol in Europe and other sides of the Atlantic as a normal protocol but over here on this side it is more the lower dose - part of this study is to determine if one is better than the other (as both are shown to be effective in treating leukemia, but they want to know if one is any better than the other).  The addition of neralabine is also being considered at helping improve EFS for those initially w/high risk but after efficacy and safety phases are done then may also be given to those in intermediate risk.

This specific study has been going on for probably about 2 years or maybe more at this point (as when Aidan was dx it had already been going for I think around 15 mos or so the doctor had stated).

Just thought I'd share what for Aidan at least, the study info included.

Hi abc dad!

Yup POG9404 is a real tough protocol.  It is 108 weeks long, so a little shorter than others, but more intense. 5yr survival is in the low 80% range.

You asked if all t-cell-ers are cns positive.  No, not at all.  I dont know the percentage but I know that the majority arent.  Still, on this protocol the kids are given 9days of cranial radiation as early cns relapse (even if the child was negative at diagnosis) is seen more often amongst t-cell than pre-b.  The lp's are mtx and ara c and are done every 18 weeks until the end of treatment.

The high dose methotrexate was awful for Scott and on two occasions took 10 days to clear.  He also had 20weeks of peg shots, which I believe are great anti-leukemia drugs, and I'm glad he tolerated them all, sadly tho the pegs led to a stroke.

Also vincristine, mtx and steroids are on a 3 week cycle (rather than 4-weekly) and are given at higher doses.

I also know of a couple of kids who relapsed right at the end, with both relapses being found at the end of treatment biopsy.  I agree, bma's (or MRD testing) should be done regularly throughout treatment, and then if leukemic cells are seen the treatment could be kicked up a notch or two.

I hope that your son is doing as well as can be expected and that treatment is moving forward.  Best wishes and lots of love to you and your family. x