7 Cycles Done, So What’s Next?

Chemo Cycle 7 done, only 10 to go, maybe… Last week we found out a little more about what’s next. Before I explain that, I’ll point out Neuroblastoma is complex, this article describes it well:

Neuroblastoma is a spectrum of diseases with a wide range of clinical behaviors. Disruption of the normal maturation progression with different genetic drivers at different times leads to heterogeneity of tumor initiating cells. Interaction between different epigenetic and genetic factors complicates the task of defining a primary oncogenic driver or pathway for this disease. This results in a wide range of pathologies with highly variable responses to treatment.

So, determining the best approach takes lots of time and consultation.  You just have to look at the abstracts from the recent Neuroblastoma research conference to see there’s lots of research and trials. With that in mind, if I simplify cancer treatment into 4 buckets: chemotherapy, surgery, radiation & targeted therapy (immunotherapy/molecular). In frontline treatment Violet had all four and in relapse all four were are considered again, but determining which ones takes time.

For chemotherapy Violet is following ANBL1221, although this trial closed last year the TMZ/IRI combination is the backbone of many relapse trials. The trial says “treatment can continue for up to 17 cycles, about 1 year”, but depending on response as to when cycles will stop.  If you look at her latest results the cancer hasn’t run away, but it hasn’t fully retreated either, so chemo is “keeping it stable”.

Resection of “Little Miss Weed” is currently not an option. It’s too risky to do the surgery and unlikely the whole tumor would be resected. The tumour is too close to many nerves and has likely invaded the skull. Doctors are surprised Violet has not had other symptoms (praise God!).

Recent consultation has been about radiation. During frontline Violet had external beam radiation to a number of sites (mainly abdomen where Mr Weed was, but also spine and legs). External beam is currently not an option for the same reason surgery isn’t, plus the tumour in her jaw isn’t the only location of cancer. Two other “Theranostic” approaches were considered where diagnostic scans are used to calculate effectveness of therapy, MIBG and DOTATATE. For MIBG, iodine-123 is used in the diagnostic scans and iodine-131 is the therapeutic (radioactive) agent, it has been commonly used for in relapse (and now frontline) neuroblastoma. DOTATATE uses Gallium in the PET scan and Lutetium for therapy, is a newer approach, provides clearer scans and is an easier protocol. Violet said “I’ll do whatever they decide as long it’s the best treatment to kill her cancer”. So after scans for both, consolation across her primary oncologist, radiation oncologist, nuclear medicine physician / endocrinologist, physicists and 3 hospitals (thank the Lord for our health system) the winner is….. MIBG!. This will involve Violet being admitted to a different hospital (RBWH) that has specialist staff and lead lined rooms, she’ll be injected with the radioactive iodine and have 3 days isolated with ‘no contact’, as she’ll be emitting high levels of radiation. For a child who’s love language is touch this will be hard. After this she’ll require another ‘bone marrow’ transplant (with her own stem cells) as the radiation will affect bone marrow (and liver). Planning is underway by the specialists for this to happen in the next month or two.

From a targeted therapy aspect Violet will have immunotherapy (ch14.18) again which has shown significant advance in Neuroblastoma treatment. Although this is “pencilled in” there’s also a small chance the PRISMZero Childhood Cancer results will identify a different approach.


So what’s the rhythm of a cycle look like?

Looking back at our day in the life post, it’s a “same same but different” scenario, things aren’t as intense, but there’s similarities. After doing this for 950+ days we’re fatigued easily, I think we’ve found a rhythm that we’re not taking on too much or focusing too much on cancer but still have time for us. The three week cycle typically looks like this:


A chemo day typically starts normally, then mid-morning antiemetics are followed by oral chemo (temozolomide). Then it’s pack snacks/activities, jump in the car and head into hospital for IV chemo (irinotecan). Door to door the hospital visit takes 5-6 hours, Violet is usually feeling pretty rotten by the time she gets home so often will camp out in her room and have a simple dinner of toast or jatz. The first day of chemo is 2-3 hours longer as they do port access, bloods and other checks. Through chemo and a week or so after she’s feeling nauseous, so the antiemetics are kept flowing. She’s on two types of antibiotics for different reasons, the regular one is to fend of broad range of bacterial infections that would get nasty on a compromised immune system. The other is used to stop/reduce irinotecan side effect of diarrhea. Violet often has insomnia, it’s usually before chemo or a procedure but can also be anytime, there’s not much we can do but help her get back to sleep (or after a few hours let her watch TV so we can get sleep). Without realising it, we usually get into the pre-admission tradition, upcycling, building sheds etc.

How’s she going?

This is a hard question, there’s a multitude of responses but it’s hard to know what people want or need to know or what I’m willing to say. I usually respond with “she’s going well” or “she’s alive”, both statements are valid, but there’s a more in-depth response…
Medically: Latest results show she’s made 2 steps forward and 1.5 back, so treatment is moving in the right direction, slowly. She’s pretty good, she’s got a reasonable amount of energy. She eats (probably not the most nutritious stuff, but she’s alive). She’s often nauseous and tired. She’s not in pain as often (like she was late last year).
Physically: She’s got no hair and a nose tube, it’s confronting/intriguing to people who haven’t seen that before. I’ve shared how I previously responded in those moments. But the chemo is killing fast growing cells (like hair and cancer) and we don’t have to battle to get medicine down ☺️.
Mentally: She fine, she has her moments and sometimes needs encouragement/rewards but is often wise beyond her years with what she says.
Family: The attention on Violet affects us all in different ways. I won’t say it’s easy, but we’re coping, looking up, accepting support and taking it a day at a time.

Thank you ALL for your ongoing support and prayer, it is truly appreciated 🙂

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