Maintenance Begins

On Friday Emma had such a big day that I have to make two separate posts. First I want to explain just a bit about oncology studies, and then I will explain what maintenance will look like for Emma.


STUDY
We have agreed to participate in every study that has been offered.

In one study, they are simply tracking each cancer patient and gathering information about race, gender, age, location, and stuff like that. This gives them statistical information, so that we can know how many kids get cancer, what ages are most common for which cancers, Caucasian kids are at slightly less risk of getting leukemia  than Asian kids. Stuff like that.

One study is mapping Emma's genes, my genes, and Clinton's genes. Nobody knows why kids get Leukemia, and they are trying to identify genetic markers, or mutations. Can our genes tell them anything? I think they will look at Emma's genes compared with her parents, and also look for similarities among other kids on the same study. I don't know, but I hope that they find something that helps kids in the future.

Another study regards treatment. So many kids get ALL that they can get a good sample size when tweaking treatments. Childrens Oncology Group (COG) hospitals follow a certain protocol, and that is just ever so slightly different from St. Judes. Both of those vary a bit from European oncology protocols. They all use the same medicines; but at certain points the dosage or the frequency may vary. Emma's treatment study deals with the maintenance phase. They take the study from things other children's hospitals are doing.

They are doubling the dosage of methotrexate for certain kids on study to see whether the incident of relapse is affected at all.

For another set of kids in the study, they are giving one of the medications quarterly instead of monthly. If they see no measurable difference in outcomes, they may begin giving that med quarterly instead of monthly.

For another set of kids, they are BOTH doubling the methotrexate AND giving the one medication quarterly instead of monthly. Again, any difference in relapse rates or other affects may alter future treatments.

A fourth set of kids are the control group, and they get the same maintenance that is current COG standard procedure.

Emma was randomized into the control group. So all those things that they might do... not doing with Emma. She gets the standard practice.

MAINTENANCE
Maintenance is the last phase of treatment for ALL. There has been no detectable cancer for a few months and the different rounds of treatments have killed off the hidden pockets of lurking cells.  Maintenance is the time when we maintain that cancer-free status. Over the next 18 months, her therapy is designed to keep her blood counts within a certain range. She will have suppressed immunity; but not complete lack of immunity.

The target ANC is between 750 and 1500. If she drops below 500, then we take a break until she is back up into the target range. If she gets above 1500, then we increase doses to get her back down into the target range.

She will take MP-6, also named mercaptopurine, every day until November 2016. It depresses counts and it also limits certain enzymes that cancer cells need in large supply. By limiting the enzyme, it denies any latent cancer cell the opportunity to multiply. Over 18 months, this should get rid of any lurkers.

Every week she will get methotrexate, on Fridays. When she has an LP, she will get methotrexate intrathecally. When she doesn't have an LP, she gets it in a pill.

The first five days of each 28-day cycle, she will take Dexamethasone morning and night. This is the steroid she has had before. She has been taking it since Friday. She is moody and irritable and hungry and picky. We will do this every 28 days for the next 18 months. I am imagining a 5-year old with PMS, and that thought is just a teensy funny and helps a little. The funny will likely wear off pretty quickly.

She will also get Vincristine by I.V. each month when we go to clinic.

There will be monthly blood draws to check counts. The doses will be adjusted as needed.

The same rules apply as before with fevers and illness. She will begin Kindergarten in August. We will get a letter from the doctor that should exempt her from the immunization requirements. She won't get those until six months after she ends treatment.

And there you have it, the final phase and what life looks like for the next while.