Here is some information about Immunotherapy/Ch 14.18 Treatment (taken from Children's Neuroblastoma Cancer Foundation's website) I borrowed this information from another blog that I follow... Our Little Hazelnut, that mother is incredibly uplifting and so talented in her blogging and I hope she doesn't mind, I thank her for her encouraging words and faith!!
- Neuroblastoma can elude the immune system by using a number of tactics. Specifically, it is able to suppress the immune system’s capacity to identify and destroy cancer cells. If the patient’s body is to play a role in killing the neuroblastoma cells, the immune system needs some help in its ability to locate the cancerous cells. Helping the immune system find the neuroblastoma cells is the purpose of the ch14.18 therapy.
- ch14.18 is a type of “monoclonal antibody” (mAb). The ch14.18 treatment is called an “anti-GD2” treatment because the ch14.18 antibody targets a substance on the surface of neuroblastoma cells called GD2. ch14.18 is a protein which has been designed to bind to the GD2. Once the ch14.18 binds to the GD2, it sends a signal to the body that tells the immune system a foreign substance has been found which needs to be killed. This then stimulates a response from the body’s own immune system to kill the neuroblastoma cell, 1 which is why the ch14.18 treatment is referred to as “immunotherapy.”
- The “ch” in ch14.18 refers to the term “chimeric” and means that the antibody has been created from two different sources – in the case of ch14.18, mouse and human cells (25% mouse, 75% human).
- ch14.18 is administered over 5 courses, approximately once per month over five months. It is given in conjunction with either GM-CSF or Interleuken-2 (IL-2), agents known as “cytokines” that work to stimulate the immune system once the ch14.18 attaches to any neuroblastoma cells. Each round of immunotherapy is followed by 2 weeks of Accutane treatment at home.
- GM-CSF is a daily shot that Addie will receive with Cycles 1, 3 & 5. These shots could make Addie experience things like: bone pain, symptoms of the flu, tiredness, weakness and stomach upset.
- IL-2 is a daily infusion she will receive for four days prior to and in conjunction with the Ch 14.18 infusions during Cycles 2 & 4. These rounds are the most intense and likely the most life threatening for Addie. We will be inpatient for two weeks for these two cycles, in order to closely monitor Addie Bean.
- Isotretinoin, which is usually referred to as “Accutane”, is derived from vitamin A. It encourages immature neuroblastoma cells to stop dividing and proliferating, and ultimately die. Addie will receive a two week course of Accutane following each cycle, and will receive one more two week course to serve as Cycle 6 of her Immunotherapy protocol.
Antibody therapy is a much different treatment than chemotherapy. I prefer to call it "The Beast" it is going to knock Addie's socks off but it also knocks the socks off of any remaining neuroblastoma cells that are trying to hide. Unlike chemo, Addie will finish each infusion and is expected to bounce back quickly, her blood counts are not drastically affected and her immune system remains "normal". That being said, DURING the infusions, she will likely be in pure misery. Neuroblastoma is a nerve cancer and when her body is killing these irregular/immature nerve cells it will be painful. The location of the pain is typically in the abdomen, causing a severe stomach ache, but the pain can be all over her body and can also be more neurologic. Due to the pain and numerous other things, Addie will likely not have an appetite and is expected to not eat very much while we are inpatient (I am doing my best to fatten her up as much as possible now)! Addie will be admitted to the PICU for all of her treatments to help manage her pain and also to help manage any of the acute and potentially very severe side effects.
Common side effects of Ch14.18 include:
- Allergic Reactions: Rash
- Fever: typically very high fevers
- Constipation
- Nausea: lack of appetite
- Blood Pressure Changes: both high and low
- Fluid Retention: extra concerning for our girl who has shown she doesn't tolerate fluid overload well.
- High Heart Rate
- Flu like symptoms
- Fatigue
- Drop in platelets
Severe side effects of Ch14.18 include: SCARY, SCARY and more SCARY
- Severe allergic reaction, specifically in the mouth and throat which would make it hard to breathe.
- Irritation of the small airways in the lungs that causes coughing and wheezing.
- Seizures
- Rapid heart rate.
- Chest pain that could mean heart damage.
- Sudden stopping of the heart or breathing.
- Vascular (capillary) leak syndrome that can result in dangerously low blood pressure. This can lead to organ failure and must be treated immediately. Symptoms include pale skin, a fast weak pulse, fast shallow breathing, low total blood amount, and low blood pressure... We experienced this during transplant which likely lead to all of Addie's issues... PRAYERS, Prayers, and more Prayers PLEASE!
- Severe rashes which can cause a breakdown of the skin and damage to mucous membranes.
- Bleeding disorder.
- Swelling in the back of the eye caused by increased pressure in the brain.
- Damage to the optic nerve.
Severe side effects for IL-2 include: EVEN Scarier
- Severe allergic reaction causing difficulty breathing, drop in blood pressure, and irregular heart beat.
- Heart attack or severe pain in the chest (angina).
- Inflammation of the heart muscle that could lead to heart failure.
- Severe drop in blood pressure.
- Decrease in the ability of the blood to clot.
- Bleeding that can occur in the head, stools, nose, urine, and other part of the body.
- Seizures.
- Loss of consciousness (coma).
- Inflammation of the colon leading to diarrhea.
- Inflammation of pancreas causing pain.
I am sure after reading through that list you are just as sickened and anxious as me and wondering what more does this little girl have to go through?!! Neuroblastoma, as I have said before, is a killer and it takes an entire bomb squad to knock it out, and even that sometimes doesn't keep it away!). I found great comfort in this statement from the CNCF Neuroblastoma Handbook...
Most patients experience some side effects during the ch14.18 treatment, although generally, these
occur only during treatment and subside soon after it concludes. Some patients will “perk up” within
hours of the completion of the infusion whereas others may take a day or more to feel well again. To
date, there are no known long-term side effects associated with ch14.18.
Praise Jesus for that!!!
I read one Dadcologist's blog and he wrote that no doctor can tell you what the outcome will be for your child with Neuroblastoma, they just don't know. Cancer, especially childhood cancer and specifically Neuroblastoma, is completely unpredictable and each patient and each case is entirely different... what works for one won't work for the next. I found comfort in this, the odds are definitely stacked against us and Addie's diagnosis was as poor as they come but SHE can do it, she can BEAT this and we have the ONE that really matters carrying us through it all... Thank you Jesus, praise God!!!
Addie's treatment schedule:
- Cycle #1 May 18-22 PICU, May 26 CLINIC
- Cycle #2 June 8-12 3 JCP, June 15-19 PICU, June 22 CLINIC
- Cycle #3 July 13-17, July 20 CLINIC, Week of July 27 possible imaging
- Cycle #4 Aug 3-7 3 JCP, Aug 10-14 PICU, Aug 17 CLINIC
- Cycle #5 **Last inpatient stay** Sept 7-11 PICU, Sept 14 CLINIC... HOPEFULLY Tubes can come OUT!!!
- Cycle #6 Accutane taken home
- November... MORE Imaging
Thank you all for your continued support and your prayers for my girl!! We need you now and always... Please lift my girl up in prayer and carry her through this next phase of treatment!!
So much love from the Brenden clan
