Welcome to our Avastin Diary
Just a bit of context, Oscar has bilateral VS, one of which grew 5mm in 1 year, C2 ependymoma which grew 7mm in 1 year and is turning cystic and a slight hearing loss.
(What is Avastin – see notes below)
Other NF2 related things – T2, L5, S1 schwannomas, Parafalcine meningioma, small left cataract, foot drop, Left sciatic nerve dysfunction, Muscle atrophy – left leg
So our journey into this started in November 2022 when the latest scan showed growth in his Left VS and Ependymoma.
We had to start by getting agreement from the other 3 NF2 centres in the UK and that took 8-10 weeks. (For paediatrics ALL NF2 centres have to agree – Oscar is 11 at the time of writing)
After the agreements came through our NF2 consultant (at Addenbrookes) wrote to our local hospital oncology department and explained the need and background about Oscar, it took a couple of weeks for an appointment to come through.
During that time I was able to source lived patient experience from our fabulous NF2 UK support groups (details below if you want to join) from those who had already been on this journey. They gave loads of really good tips and advice about what we needed to do to make this as smooth a journey as possible and to run like clockwork. Because let’s face it, a visit to Oncology every 2 weeks for a day is a huge lifestyle change and it was something that was quite daunting to our family and family life.
One of the big questions we had was did we want Oscar to have a port-a-cath (See info below). Oscar is an avid football player and we had already been advised against contact sports if a port is fitted, so this was something we needed to explore as well and to find out if his club allowed players with ports to play on their team.
School was also another big thing. I would strongly advise any parent with an NF2 child to register/refer themselves to the SENCo at their school and give them information about NF2, what it means and how your child is affected. This gives the school time to digest information and ask questions as to how they are able to best support you and your child. Even if your child is not on Avastin I would still recommend you refer to the SENCo (SENCo are there not just for learning difficulties but they are able to help with physical things also, also mental wellbeing etc)
So, we self-referred to SEN at Oscars school and had a meeting with her and the school head about what treatment Oscar was going to need for his NF2. They suggested a multi-agency meeting between Oncology our NF2 team and us to discuss things when everything was set up.
Fast forward a bit to our Oncology appointment in our local hospital. Having been around NF2 for 22 years myself and having lots of my NF2 “family” on Avastin I knew quite a bit but I had a list of questions at the ready anyway. The oncology professor was really good and made sure he spoke to directly to Oscar (bonding over a mutual love of Nottingham Forest) as well as me (took my phone with live transcribe on as I am profoundly deaf) and explained what Avastin was, and we discussed a start date. Oscar had his height and weight checked and we met the oncology nurse who was assigned to us called Sam. (Made sure to take and give emails as she won’t be able to speak to me by phone as I am deaf). I then signed to consent forms for Oscar – he signed them too! [They’re still referring to Acoustic Neuroma here!!! – I might educate them and say they’re actually called Vestibular Schwannoma]
We discussed Oscar having a port-a-cath and the Oncology Professor said Oscar would not be allowed to play contact sports if he has one as he said its not really safe, so we all agreed the Oscar wouldn’t get a port because he loves playing for his team. And he plays for the school team too.
I managed to ask all my questions too
- Oscar will be able to have numbing cream for the cannula
- Our clinic Avastin day is going to be Thursdays as that’s their “solid tumour” day
- We are arranging for pre-Avastin tests to be done BEFORE our infusion days
- School to be contacted by the Oncology team about supporting Oscar
- First treatment will be about 3 hours in the dept, but we should get quicker as time and routine allows.
Our Oncology names Nurse is called Sam and she seems very switched on with things and was able to happily answer all my questions. She is aware that things are very daunting for us and was able to reassure us that she has dealt with children in Oncology for a while and will be able to put things in place to help us along. We left the meeting and she said she would be in touch to arrange things more. I reminded her to speak to the oncology team about my deafness because I am going to be the one (mostly) taking Oscar to his Avastin infusions.
So after that, the oncology team decided they needed a baseline scan (Oscar was due one anyway in about a month), so things got postponed while a scan was arranged.
In the meantime I was contacted by Carly who works for CLIC Sargent who are the outreach time – currently I am not sure of their entire role, but Carly will be liaising with school and telling them about Oscars treatment, how to support him and what it means, how we can all manage side effects etc. She also supports the family of those going through treatment for the duration of treatment and she is able to liaise with different departments etc to get answers about things and the oncology team also liaise with her.
So after the scan, the oncology team contacted us and we start treatment on 23rd March. It seems so close and real when you have a date.
I have asked more questions to those on Avastin, we’re taking a packed lunch in because we are going to be there a few hours, although I am told they supply tea & biscuits – I’m sure Oscar will love the biccies!!! And I have also a vague idea if what will be happening, tests etc before the treatment. I will detail those in the next blog.
And I have gone through my diary to see how this impacts us as a family over school and holiday times knowing that we will need to be around at home during some time of the school holidays.
Now I am trying to arrange the mutli-agency meeting at Oscars school. I am keen for Oscar not to get left behind in classes he will be missing on infusion day or if he gets really tired after treatment – which I know is a side effect, so its also a chance to discuss what plans the school will put in place to ensure he is still able to access education in those lessons like his peers. I am keep to get an IEP (Individual Education plan) in place. Others have suggested an EHCP (Education Health Care Plan), so I am not sure yet which is going to be best at supporting Oscar.
So as you see quite a bit has been happening before we even start Avastin infusions and there are quite a few people to contact and sort things with, which again, make it seem very daunting! But I think we are about ready to start!
Next Blog – Our first Avastin Infusion!
Our UK support groups are:
(For our NF2 Patient community) UK NF2-SWN Patient Network | Facebook
(For parents, carers, friend and family of our NF2 Patients) UK NF2-SWN Network | Facebook
What is Avastin?
Bevacizumab (Avastin) in Neurofibromatosis Type II | CUH
Avastin is a type of drug called a monoclonal antibody or an angiogenesis inhibitor. It is also used to treat some types of cancer. The reason that we think it is effective in the treatment of growing schwannomas in NF2 is that it stops the development of new blood vessels in tumours. This reduces the supply of oxygen and nutrients, which means that the tumour shrinks or stops growing.
It is important to note that Avastin is an immunotherapy drug (not chemotherapy), but the side effects from it can be exactly the same. Avastin is used to treat many “tumour related” conditions including cancerous and benign tumours.
What is a port-a-cath?
Portacath – care of your portacath | CUH
A portacath is a type of central venous line which is a soft, hollow tube that we place into a large vein and leads into the heart. The line can be used to give you fluids, blood products and medicines, and to take blood samples. It is designed to stay in your body for many months or even years.
This blog has been created as a way to share stories, ideas, positivity and even sprinkle in some science. Everyone is welcome here and warmly encouraged to join us in contributing to our community through this blog. If you would like to add anything (anything at all!) then please contact myself, Grace Gregory, at email@example.com and we can pop it up on our blog. Watch this space and please join in helping us all connect and share with one another!
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