Immunotherapy 101
Amber Cabrera Moore wrote a new note:Immunotherapy 101.
So many questions are asked about this treatment Jillian is currently going through. I agree with most of you who say, “she is cancer free, why does she need more treatment”? The fact is that Jilli had high risk Neuroblastoma. This cancer has a super high risk of relapse. The standard treatment for most cases consists of the chemo, surgery, stem cell transplant and radiation. The doctors have added one more step… immunotherapy. Immunotherapy is a study; a clinical trial. The results have been good enough to have this study included as part of the COG protocol. The whole idea is that scientists made this monoclonal antibody (a protein made in a lab) designed to attach to specific cancer cells. In this case the ch 14.18 anitibody is made for NB. When it does this, the body’s immune system is stimulated to attack and kill those cells. Kinda cool, eh?
So what is Miss Jillian facing during this final phase of treatment, you ask? A grueling 6 cycles of treatment. I have been reading the road map closely today and trying to figure out when we will be home, when we will be in the hospital and if she will be done in time to start preschool in the fall. I know better than to try and plan ANYTHING. So I am being very bold by saying that this will finish up by mid September. But the hospital stays will be done in August…as long as she fights.
Why on earth these drugs are given multiple names is beyond me! But she started the 1st drug on our first day admitted to Sunrise. Here is run down of what the cycles look like:
Cycle 1 lasts 24 days. She gets a shot in her leg every day for 14 days. This drug is called GM-CSFor Sargaramostim or Leukine. (I told ya 3 names were ridiculous, right?) GM-CSF is similar to a substance the body already makes to help boost infection fighting white blood cells (neutrophils). It is supposed to help increase the cancer fighting effect of the ch 14.18 antibody. Then she gets 4 days, 10 hours a day of the antibody ch 14.18 via IV in her port. Ch 14.18 is the monoclonal antibody that does the job of killing the cancer cells. THEN she must take the drug Isoretinoin for 14 days. Isoretinoin also known as Accutane, Amnesteen, 13-Cis-Retinoic Acid or cis-RA. Cis-RA has been shown to help stop NB cells from multiplying.
Cycle 2 lasts 27 days. She will get another 4 days of ch 14.18, another 14 days of cis-RA and 8 days of another drug called IL-2. IL-2 or Aldesleukin, Interleukin 2. This drug is again thought to help out the ch 14.18 antibody. She won’t get that one 8 straight days in a row. She will get it via IV for 4 days, then a 3 day break, then another 4 days of the drug.
Cycles 3 and 5 are the same as cycle 1. And cycle 4 is the same as cycle 2. Cycle 6 is just cis-RA for 14 days.
These drugs have whole list of side effects, everything you can think of is written on the info sheets. But so far, our warrior is braving this battle. She has been in serious pain but now that has been controlled. She has also experienced shakiness, loss of appetite, and fevers. Then the poor kid has some side effects from the drugs used to ease her pain; itchiness, rash, fatigue & irritability. As I write this, it is midnight so I guess Wednesday has come and gone. She is done with her last doses of ch 14.18. As daylight approaches, the nurse is watching for fevers. No fevers means we go home asap. Will be so nice to be able to sleep all night uninterrupted! Gotta get ready for a serious 4th birthday party on Saturday! SALUTE!
CIC Momma
‹ About immunotherapy The Warrior Turns 4 ›
Hey there, my name is Charles and i am the dad of a NB kid as well. His name is Jack (just turned 4 on the 14th of june). We also are in the 1st round of immunotherapy ch14.18. It has been a roller coaster for us. He has been having low blood pressures, low oxygen sats, and high fevers of 105 around the clock. He is on oxygen, and tylenol around the clock. We are starting day 3 of the ch14.18 in a few hours but I’m concerned about if he is having a reaction. His doctors haven’t really explained much to us about it and I was wondering how your experience was? Thanks for your time and keep up the good fight!