Leukemia is treated by combination chemotherapy. This means that patients are given combinations of anticancer drugs. The combinations of anticancer drugs currently being used is called the standard protocol. The standard protocol is the culmination of years of investigative studies.
(For parents' comments about deciding whether or not to enter an investigative study, go here.)
Most leukemia patients in the US are asked to decide whether or not to join an investigative study. It's a decision you have to make within 72 hours of the first chemo treatment. It was a subject on which we had a lot of trouble getting information in the hospital. Would we be turning our child into a guinea pig? If you are in that lovely situation, read on, and also follow this link:
An investigative study is also known as a clinical trial, and that sounds a little scary at first. But it's not really a big chance you are taking with your child's life, as long as it is a phase III trial. Phase III trials are essentially attempts to fine-tune the current standard protocol. A protocol is written out in a booklet delineating a particular treatment in great detail so that exactly the same treatment will be given to thousands of patients across the country. That's the only way a proper scientific study can be carried out. The investigative protocols are given numbers, like "CCG 3456" or "POG 1234". The CCG (Children's Cancer Group) and POG (Pediatric Oncology Group) stand for which type of group the hospital you happen to land in belongs to.
Just in case you are asked to participate in a non-phase III clinical trial:
So we put our trust in the oncodocs, the experts, and said that we'd enter an investigative study. We would randomly be assigned one of four treatments:
If we hadn't entered the investigative study, we would have had A. Entering the investigative study, we would get either A, B, C, or D. We really didn't have a feel for which we wanted, there were pluses and minuses in each. We ended up with B. Since James was high-risk because of age and gender, we are on CCG 1961.
Innocent that I was, I thought you'd just pop the chemo pill in your mouth and go home and start throwing up. Silly me!
Chemo drugs are given several ways:
IV Patients with leukemia require frequent IV treatments, either chemo, transfusions, or antibiotics. The patients complained so much about so many needle pokes that the docs came up with a device called a "right atrial catheter". This is a small tube which goes through the skin of the chest, into a large vein that leads to the heart, and ends in the right atrial chamber of the heart. Besides lessening patient discomfort from needle pokes, this method of delivering chemotherapy prevents possible side effects from the chemo drugs coming into contact with the skin. Also, constant access to veins in the arms can cause leakage to tissues surrounding the injection site. The right atrial catheter remains in place throughout the treatment phase, unless it becomes infected. It can also be used to withdraw blood for tests, eliminating yet another needle poke.
Right atrial catheters (sometimes called "central lines") come in two basic varieties: external and subcutaneous. In external catheters, the end of the tube comes out through the skin and hangs several inches outside the body. They can have either one or two tubes, although the tubes may be joined to look like they have only one tube. The reason for two tubes is for delivering two drugs at the same time. This is especially important if the two drugs are incompatible. Double tube Hickmans are called "double lumens". Since Hickmans hang outside the chest, your doctor might (or might not) recommend that the child not go swimming while it is in place. Special care must also be taken while bathing. Special tape, or better yet a stretchy net vest, is available to hold the lines close to the body when not in use. Hickmans must be flushed daily and the implant site dressing changed twice a week, either by the parent or by the child if the child is old enough and willing. Hickmans must be watched closely for line infections. Also, they can cause irritation at the implant site or the implant site may not heal well due to low counts associated with leukemia. Hickmans can be pulled out during rough play; they also may contribute to a low-body image by the child.
Subcutaneous catheters are called either medi-ports or port-a-caths. Like the external catheters, they can have one or two tubes. This is the type James has, with two tubes or ports. In this type of catheter, instead of coming outside the skin, the tube ends in a metal chamber which is implanted under the skin. The part of the chamber just under the skin is rubber. To access the port, the nurse pokes through the skin covering the port and then through the rubber of the port using a special needle called a "Huber". This may sound like a needle poke to be avoided, but the skin covering the port soon becomes quite tough and insensitive; also, Emla works great to further de-sensitize the skin. Medi-ports only have to be flushed once a month, become infected less often than Hickmans, and there is no dressing at the implant site to be changed. Since they are only visible as a small lump under the skin on the upper chest, they do not contribute to a negative body image. Normal activities can be continued by the patient, even including playing football in high school, as well as swimming.
At the time of implant, your oncodoc will discuss the type of treatment, age of the child, and personality and activities of the child to help you decide together which type of port will be best for the patient.
MI and SQ These are shots given with an ordinary syringe, directly into the muscle (like, straight down into the top of the thigh) or under the skin. I had to be shown how to give James ara C shots; it was either this or drive 55 miles to the hospital 4 days in a row, 4 weeks in a row.
LP At first, we didn't know what that little "LP" meant on the appointment slips. We soon found out that it means a spinal tap. For these, the patient has a needle inserted into the spinal fluid, in the middle of the back just below the waist. This is also called intrathecal. They do spinals to check the central nervous system (CNS) for leukemia involvement and to administer ara C or methotrexate to kill any leukemia cells which might be lurking. This is a very important part of the treatment for leukemia. Early research showed that they could get patients into remission, but the cancer nearly always came back. They found that the cancer cells were hiding out in the CNS.
A spinal can be painful, and the patient must hold very still during the procedure. After the procedure, they must lie flat for 30 minutes. Different patients tolerate spinals to different degrees. James doesn't use any anesthetic at all for these.
Bone marrow aspirations hurt more than spinals. They stick a needle right into the bone of the spine. Again, the patient must hold still for the procedure. We do use anesthetic for these. We started with a fairly high dose of Versed for James, but have dropped down to a lower dose, one that doesn't make him so dopey for so long. Versed is a liquid anesthetic which makes the patient sort of drunk and they forget everything that happens. Bone marrows are done day 0, 7, 14 and 21 if needed, 28, and then occasionally throughout the 3 years of treatment to monitor the bone marrow for leukemia cells.
Other pain remedies are available, the Ped-onc Resource Center treatment page explains many of them.
Emla Aaaah, Emla. This is a cream which contains lidocaine. We slop it on for all the needle pokes, including those into the port. It takes 1-2 hours to work really well, but the kids say that it stops all the pain of the needle going through the skin. My problem is, you put it on and then cover it with this really complicated banded that holds it near the skin and prevents it from rubbing off on the furniture. I think I finally have those things figured out, though . .
Antibiotics The kids have to take a sulfa drug twice a day each Saturday and Sunday. This prevents a form of pneumonia which used to take the lives of a significant percentage of leukemia patients.
Troche This is a medication that the kids are supposed to swish and swallow twice a day to prevent fungal infections of the mouth. Plus they are supposed to brush their teeth a lot to prevent mouth infections. James is not very good at doing these.
None of the above treatments is particularly pleasant. But, keep in mind, thirty years ago the child diagnosed with leukemia would live for only three months. Today, there is at least a 70% probability that the child with leukemia will be cured.
It's worth the treatment.
The chemo drugs given leukemia patients cause the usual side effects that the man-on-the-street associates with chemotherapy: hair loss and nausea. Those are the outwardly visible side effects. There are also potential side-effects listed on the drug information sheet for each chemo drug, I have these on my Chemo Drugs page, also long range effects. During treatment, we must focus on the immediate threats to his health due directly to the chemotherapy.
The chemo drugs knock out the rapidly growing bone marrow cells as well as the cancer cells. Thus, red blood cells, good white blood cells, and platelets are not formed. Without red blood cells, they get tired and weak. Solution? A transfusion of red blood cells into the port. Without platelets, they will be unable to stop bleeding if cut. Solution? Platelet transfusion. Leukemia patients get about three blood tests a week, blood tests which have to be done at the clinic or a hospital which has the lab facilities to do a "CBC STAT". Pretty cool sounding, huh! It just means "do a complete blood count right now!"
The white blood cells are monitored closely throughout the treatment. Without the right kind of white blood cells, the patients are not able to fight off an infection. The amount of "right kind" of white blood cell is measured by the ANC, or Absolute Neutrophil Count. The ANC is calculated by multiplying the percentage of "seg" and "bands" (neutrophil blood cells; the ones that fight infection) by the total white blood cell count. If the ANC is >1000, the patient can live a relatively normal life. If it is 500-1000, he is entering the danger zone. If it is <500, he has to avoid crowded places. Under 500 is designated "neutropenic". (These are words us parents like to throw around a lot.)
If a leukemia patient runs a fever of 101, he must immediately call the clinic to see if he has to be checked. Infections develop rapidly in these patients. There is an oncologist on call 24 hours a day at the hospital to help the parents. Fevers are not taken lightly with leukemia patients. They usually mean the child has to be admitted to the hospital for a minimum stay of 48 hours.
Infections can be fungal, bacterial, or viral. Fungal infections can be particularly nasty in a leukemia patient. Sometimes the infections are due to the medi-port lines; sometimes there is a fever and the doctors cannot find an infection.
Chickenpox poses a real threat to leukemia patients. If your child has not yet had this disease, your oncodoc team will coach you on how to approach childcare/school situations which might expose the leukemia patient to chickenpox.
During treatment, patients cannot receive immunizations, unless directly approved by the oncodoc. And, family members cannot get immunizations of live viruses during certain stages of treatment, because they could pass the infection to the cancer patient.
We've been told that 70% of the infections treated in ALL patients come from the child himself; only 30% are caused by outside sources, like someone sneezing on them. That doesn't mean that you don't take precautions. Things around your home can be also harmful. A simple scratch from your cat, spores from houseplant soil, spores blown around outside on windy days, an unwiped counter top after cutting chicken, . . . when your child is neutropenic, these are potential dangers. The most important precaution of all, however, is washing your hands. This cannot be emphasized enough.
The day we brought James home from the hospital, we did a major house cleaning. We scrubbed the house down with Comet and Lysol. We gathered all the houseplants into one room and closed them off. We emptied all the trash and treated the cans with Lysol. We put his meds in a cupboard in the living room rather than the kitchen or bathroom. We washed all the towels and sheets. We put antibacterial soap at each washbasin. We put a disposable cup dispenser in his bathroom (much against our usual environmental awareness practices). We had his hair cut so it would fall out "gracefully". We shaved the dog.
Yes, we shaved the dog! At least my husband did, or really he took her - Peppy - to be groomed: a big, hairy, messy 12 year old collie-retriever mix was taken to "Claws and Paws" in Lyons. She came back looking soooo cute and smelling so good that this will be a regular practice from now on. She even had bows in her fur like a poodle. We could not stop petting her. But, I grabbed the cat and shuttled her to a back room so he would not take her to be shaved too.
BTW, James still has his hair! At 3 months! (And now at 4 months.) His reflexes are not what they used to be, and he has some tingling/numbness in his hands, which his oncodoc says is due to the Vincristine and will go away.
One nice thing about all the treatment is that we spend a lot more time with James and with each other. Times spent together - times when we are forced out of our separate rooms at home and put together in the car or hospital room, days taken off work to keep James company while he recuperates from chemo at home - these times have been, in their way, good times.
We have changed from thinking: James should do this or that, to: how does he really want to spend his day? We have begun to listen to him with our full attention so that we really know *him* and what *his* dreams are, instead of trying to get him to do what we feel he should do to make us feel good.
Sorry, guys, seeing a drug name brings out the chemist in me, and it just won't fit here! So go to my Chemo Drugs page for more than you ever wanted to know about these nasty but helpful chemicals.
Our hospital is Children's Hospital in Denver, a member of CCG. It is an excellent facility, if you have to go to a hospital, it is one I'd choose.
Our primary oncodoc is Lorrie Odom. She's the best! Imagine my excitement when I was cruisin' the Web and read an article and found her name at the bottom as the author! Makes me proud.
Our nurse at the outpatient clinic is Jan, our nurse practicioner is Margi, and our social worker is Diane. I'll put their pix here in the future if they'll let me! We see Jan the most and I'm glad she's our nurse. She taught me how to give James' his shots! She's always good about getting us everything we need and she takes care of us quite well!
They gave us James' protocol to read in the hospital, but they didn't give us a copy. To find information on ALL CCG (now COG, 2003) protocols, go to this link: National Cancer Institute., go to the treatment area and then clinical trials. Feel free to choose "Clinical Trial Summaries for Health Professionals." Hey, they won't know you're not a doc! The NCI link was the only place where I could find the outline of our whole treatment. The hospital will only eke out a month or so at a time, called a "road map". The outline below is for CCG 1961 on the "rapid early responder" track, since James was in remission day 7 because there were no blast cells in the bone marrow.
Induction, 4 weeks
Ara C (IV), vincristine (IV), daunorubicin (long IV), asparaginase (intramuscular shots, 6 in all), oral prednisone for the entire month. Bone marrow aspiration days 1 (4/18), 7 (4/28), and 28. Intrathecal (LP) Ara C days 1 and 7, 14, 21, 28. The IVs were done weekly. I was in kind of a daze at this time and didn't write stuff down. By the time of this writing, I sort of forget the specifics; I've had to read the protocol information sheet to remind myself. I only know that we were spending 50% of our time either at the hospital or on the road to/from it. Luckily, John and I traded off. Our "day 1" is April 21, I think.
During this month Jamey felt pretty yucky. He didn't throw up a lot, really, just looked like he would. Mostly he was real tired. During the frequent trips to the hospital, a pillow, blanket, and emetic basin were standard equipment in the car. I remember how good it sounded to hear his computer keyboard tapping again, about week two. THIS is why we wanted the 8600 ASAP! At first, he was too tired to sit at the computer or got a headache when he sat up. But the new computer called to him, and coaxed him up. About week three he was up at the computer a lot.
Month one is also the month of prednisone. Aaaaah, prednisone. A cooking mom's dream - he constantly wanted food and loved everything I made! Like homemade chicken soup. And for lunch he would eat three microwaved chicken breasts. And he'd get up at 6:30 AM and make a huge bowl of popcorn.
Consolidation, 5 weeks (beginning day 35)
Week one: (5/26) Cytoxin (IV, day 35); LP (spinal, I won't remind you again) methotrexate (scheduled to be weekly), ara C (4 subcutaneous shots, 3 done by me at home); Purinethol (orally, each night). Plus weekend antibiotics. He feels awful this week, tired and nauseous.
Week two: (6/2) LP methotrexate, ara C (4 subcutaneous shots, 3 done by me at home); Purinethol (orally, each night). Plus weekend antibiotics. He's feeling better.
Week three: (6/9) James was scheduled for his second Cytoxin this week, but his ANC and RBC were low so he got a RBC transfusion instead. Continued all other meds. Checked WBC mid week, and still not ready for cytoxin. Cytoxin is known as the nasty of nasties in the chemo protocols, at least by us parents. It really wipes out the body's defenses. It has to be monitored carefully during administration, so you have to stay at the clinic for four hours after he gets it.
Week four: Checked Monday (6/16) and Thursday, not ready for Cytoxin yet. In fact, he's neutropenic. Taken off all meds except antibiotics.
Week five: Checked Monday (6/23), still not ready for cytoxin. (ANC has to be 750.) Given LP methotrexate. Checked Thursday: FINALLY ready for cytoxin! Got the IV cytoxin, take-home ara C, back on the oral purinethol. He feels absolutely awful! Throws up a lot the first few days after cytoxin.
Week six: Monday (6/30) gets LP methotrexate and take-home ara C shots and nightly oral Purinethol.
Notice that the "5 week" consolidation was dragged out to six weeks because the cytoxin was delayed. We are told that this is not unusual and not to worry about it; it happens in 90% of the cases.
Interim maintenance will last for 8 weeks (beginning July 7 or 14) with oral methotrexate and purinethol, as well as bi-weekly LP ara C. (See log.)
7 weeks (beginning Sept. 8): re-induction with vincristine (IV), doxorubicin (IV), oral dexamethasone, and asparaginase followed by reconsolidation with cyclophosphamide, thioguanine, and ara C. Dexamethasone is interrupted for 1 week during delayed intensification.
Another Interim maintenance
8 weeks (beginning Oct. 27) with oral methotrexate and purinethol, as well as bi-weekly LP ara C.
Another delayed intensification
7 weeks (beginning Dec. 15): re-induction with vincristine (IV), doxorubicin (IV), oral dexamethasone, and asparaginase followed by reconsolidation with cyclophosphamide, thioguanine, and ara C.
Boys will continue on maintenance therapy at this point for 3 years beyond completion of consolidation therapy. I guess they mean the consolidation treatment which he had the last week of June, rather than the end of the reconsolidations in the reintensifications.
Therefore, he should be done with all maintenance in July of the year 2000!