Violet’s summary of chemoimmunotherapy is so very appropriate “my last few treatments have been a luxury compared to this” and there’s so many emotions and so much happens it’s hard to capture it all. Hopefully this post and photos will give some perspective of the reality.

The Facts / 10,000ft View

At a high level we’re following ANBL1821 protocol. However, Violet is excluded from the trial because it’s not her first relapse, which is ok because it gives us some flexibility (ie. push out cycles from to every 3 weeks to every 4 weeks).

Major drugs used:

  • Temozolomide/TMZ - Oral chemotherapy
  • Irrinotican/IRINO - IV chemotherapy (aka “I-run-to-the-can” because diarrhea is a common side effect)
  • Dinutuximab/Dinutux/ch14.18 - IV Antibody/Immunotherapy
  • GM-CSF - Granulocyte-macrophage colony-stimulating factor. Subcutaneous injection to boost production of neutrophils.

Supporting drugs used:

  • Keflex/Cephalexin - Antibiotic to help reduce diarrhea from irinotecan
  • Gabapentin - helps reduce nerve pain from Dinutux
  • Zyrtec/Cetirizine - helps reduce allergic reaction to Dinutux
  • Phenergan/Promethazine - helps reduce allergic reaction to Dinutux
  • Panadol/Paracetamol/acetaminophen - helps reduce nerve pain and fevers
  • Ondansatron/Ondanse - Antemetic to help reduce nausea from chemo
  • Maxolon/Metoclopramide - Antemetic to help reduce nausea from chemo
  • Morphine - IV pain medication to reduce nerve pain from Dinutux
  • Oxycodone/Oxy/Endone - helps reduce nerve (and other) pain when we’re at home
  • Loperamide/Gastrostop/Imodium - Used to stop/reduce diarrhea
  • Trimethoprim-sulfamethoxazole/Bactrim - Prophylactic antibiotic used to prevent pneumonia while on treatment (this is not just for this protocol, but taken 3 days in every week the whole time V is on treatment)
  • Fluconozole/flucon - Prophylactic Antifungal used as to prevent fungal infections.
  • Ceftriaxone - IV antibiotic used to avoid sepsis when not neutropenic, Piptaz(piperacillin & tazobactam) is used if neutropenic.

High level plan:

The high level flow of treatment is:

  • Mon - Final health checks and first day of chemo (TMX & IRINO)
  • Tues-Fri - Chemo + Immunotherapy (supported by morphine)
  • Sat-Fri - GM-CSF injections & wean off supporting drugs

24hrs Snapshot (Immunotherapy day)

During dinutux infusion a nurse suits in the room the whole time to monitor Violet for adverse reactions. Oxygen saturation, respiratory rate, temperature and blood pressure is checked every hour. A bolus of morphine can be given if she has nerve pain (along with massages and heat packs). Violet also has o2 saturation constantly monitored and an oxygen mask flowing nearby to keep her saturation up (morphine makes her lazy).
05:30 - Wake and swallow chemo (temozolomide) then back to sleep
06:00 - Ondanse
06:30 - IV chemo irinotecan started
08:00 - Chemo ends. Take Panadol, Zertec, Gabbapenton & Fluconozole
08:30 - Assess by doctor to proceed for the day
09:00 - 530ml saline bolus start
10:00 - Bolus end, Dinutux starts at half rate (inc. increase morphine background rate and a 2xMorphine boluses given)
10:30 - Dinutux increased to full rate
12:00 - Panadol
14:00 - Gabbapenton & ondanse
16:00 - Keflex & Panadol
20:00 - Gabba
20:30 - Dunotuximab second flush start (nurse can leave)
22:00 - Second flush end, ceftriaxone start, Panadol & Ondanse
00:00 - Standard observations (temp, blood pressure). Morphine rate dropped/turned off.
02:00 - Panadol
04:00 - Standard observations.

The Reality

As usual, the reality is differs to the facts, our bodies are amazingly complex and respond to things is different ways.

Fri 20 March

For this protocol Violet needed at least two accesses to her vascular system, one is used for immunotherapy, the other is for morphine. The drugs run at different rates and can’t mix until they’re in the bloodstream. After many discussions a dual port was chosen. Each port has a separate tube that tracks down to near the heart. The last time she had this drug she had a dual lumen central venous line, which is basically the tube from the heart then comes out through the skin. Ports sit under the skin and are needled/accessed when needed, quality of life is better because she can have showers etc. when she’s not accessed.
Surgery was planned for the early afternoon and as usual there was a lot of waiting prior to her going under. The insertion process required her single port to be removed (which had been in for over 2 years) and the dual port to be inserted. Surgery was slightly tricker and took a little longer but was a success. Violet had a very rough wakeup from anaesthetic (she often gets emergence delirium), but the team in recovery were pre-warned and helped Colleen for the hour while Violet kicked and screamed as she woke.

Sat & Sun 21-22 March

At home recovering from surgery (with irregular Panadol and Oxy for the pain) and starting premedications (Keflex & Gabapentin)

Mon 23 March (Day 1)

Let the long days begin. We arrived at 9am, but didn’t make it up to the inpatient ward until 6pm. Bloods were taken, doctors did final checks and gave the green light to proceed. Temozolomide was swallowed without a fuss and Irrinotican was infused (this part of the protocol isn’t new, Violet completed 19 rounds of this in 2018/19 without Dinutux on ANBL1221).

Tue 24 March (Day 2)

Early start, there were some challenges with the bottom port running slow, but once the needle was fixed the day started to flow. Chemo proceeded fine and Dinutux hooked up by 10:30, the pain kicked in the early afternoon on her knees and feet, we had heat packs on rotation and Violet hit the morphine button when she could and the morphine background rate was increased.
Towards the end of the day, Violet was very sleepy, her respiratory rate dropped and she became unresponsive. Six nurses, a doctor and a hit of narcan later to reverse the effect of morphine solved the problem. Not an experience we’d like to repeat.

Wed 25 March (Day 3)

Event free day, apart from the temperature towards the end of the day, which meant Violet needed further blood tests (cultures) and IV antibiotics.

Thu 26 March (Day 4)

During the day she developed a runny nose and cough, which meant she had a nasal swab and was moved from a shared to a single room and nurses wore face masks and gowns. That evening the diarrhoea really kicked in 🤢. Mopping up a poonami while half awake bought back some memories!

Fri 27 March (Day 5)

HAPPY ANNIVERSARY!!! We celebrated 16 years of marriage by having takeout Thai for lunch.. and watch 17.5mg of immunotherapy drip into our daughter over 10 hours.
The final day of dinutux & chemo was ok, if you enjoy the magic of orange juice going in one end then dealing it come out the other end as a watery kale smoothy. The nose swabs came back clear (ie. not a known/complex virus, she has a “common cold”). As bedtime came she cracked a 40 degree temp and her oxygen saturation dropped, a chat with the Registar, restarting the use of oxygen fixed that. Then the angry elf awoke and abused me for using my finger instead of the thermometer to check temperature because she DIDN’T HAVE A TEMPERATURE!!! (She knew full well that it would be at least 24hrs without a temp before she could go home ☹)

Sat 28 March (Day 6)

We got the educated by the nurse on how to make then administer(inject) GM-CSF into Violets thigh. We then did the should I stay or should I go dance, we could take her home if we were happy with where she was at. Violet was still very lethargic, tired, and had low oxygen levels. We decided she should stay, an hour later she cracked a 39 degree temp, the right decision was made.

Sun 29 March (Day 7)

Dinutux side effect: insane itchiness - scratch scratch scratch. Her port was de-accessed and the bottom port was a little hard. Common cold side effect: Cough cough cough. She says she’s NOT TIRED!!!…. maybe it’s us and not her 😐. Dinutux side effect: Temperatures ☹ We head home. Yay!

Mon 30 March (Day 8)

Transition back to life is always a bit hard. Sooo much to do. Overwhelmed. Grumpy. Time to prioritise.
Time to plan when to administer 10 different medications (some multiple times a day), fatigue kicking in makes that not so easy 🤦‍♂️💤. Violet is improving, but if you had a child with her symptoms today you’d be knocking down the door of your GP (fatigue, fever, cough, runny nose, constant headache, severe diarrhoea, short tempered, insane itchiness, nausea, blocked ears, stuffiness), but we know most of it is treatment side effects and the rest is a cold that’s been amplified by treatment. So we dig deep and keep on trucking. I hate this treatment, V C C are smashed, we’d like to give more to O P but we’re stuffed, overcapacity.

Tue 31 March (Day 9)

Slight improvement, no more temperatures, still coughing, less itchiness, still stuffy blocked ears. Settling into new normal. Daytime nap helping catchup.

Wed 1 April (Day 10)

3am Diarrhoea episode. Followup appointment at hospital in the afternoon uncovered Violet’s oxygen saturation is ony 90% (above 95% is preferred), x-ray showed she has pneumonitis, another side effect from Dinutux (and the cold she has doesn’t help). She’s being admitted for observation and administered oxygen to keep her saturation up. Last minute re-packing of bags for overnight stay required, nope, this isn’t an April fools joke! Supporting drugs reduced (last day of Keflex and Gaba)

Thu 2 April (Day 11)

No big improvement. More waiting, more rest, more oxygen.

Fri 3 April (Day 12)

Doctor assessed her in the morning and her chest was too crackly to go home today. Violet was (understandably) not happy, it’s been 2 weeks since her port was inserted. Last GM-CSF injection this morning, YAY! Nose swabs were done and sent off again (to be sure we’re still just dealing with a cold). This time to be sure to be sure a COVID swab is also done which means isolation level increased, not allowed out of the room (which we usually do to get water, heat up meals etc.) contact precautions for nurses is also increased, they gown up more heavily, face protection as well as masks. Physiotherapist visited for a consult and gave Violet some exercises to help clear her chest (coughing, huffing, deep breathing & moving), she’s keen to go home and does some of the exercises She has improved a lot, oxygen has not been required all day and saturation has been in the normal range.

Sat 4 April (Day 13)

Informed at midnight observations that swabs came back negative (ie. it’s “just a cold”). Isolation level reduced (but lower level of PPE is still warn by staff). Doctor consult in the morning, Green light to go home. Yay. Still some side effects (mostly coughing), but subsiding.

Sun 5 April (Day 14)

Home 😁. Adapting to another new normal. Colleen calls this “the newborn stage”, if we don’t force food into Violet she won’t eat, but if she doesn’t eat we have a hangry monster on our hands. Violet has never been a big eater, but we know this will go on for a while.