This is the latest instalment of the Avastin Diaries Blog series. To read the previous article click the link below, or for the complete series head down to the bottom of this page for the full set of Avastin Diaries Blog links:
Avastin Diary 13 – Treatment 15 and Scanxiety!
—
Treatment 16– 19th October
It was our NF2 clinic on 9th October. Many of you follow our Avastin story! So, we’ve just had our first scan after 6m on Avastin (every 2 weeks) and had a video call with Mr Axon & Jools at Addenbrookes about Oscar’s results.
It’s good news. (Hurray!) … i can’t believe I’m typing that!
[IMAGE DESCRIPTION] Oscar’s MRI scan after 6 months of Avastin treatment
His 2 Vestibular Schwannomas (head tumours) and meningioma (also in head) have all shrunk by about 1mm – whilst this does not sound a lot, these tumours only grow 1-2mm a year – they are slow growing, so to get this result is amazing and also Avastin does not normally treat meningioma tumours – so I feel we got a bit of a bonus!
The c2 spine Ependymoma has reduced 5mm in response to Avastin – which again is an amazing result. His Ependymoma had a cystic component which reacts to Avastin, so it has bought the tumour to a more respectable size.
We continue with Avastin every 2 weeks still for another 3 months and we will then rescan. If all is well (they may stay the same size or shrink a little bit more – fingers crossed!) we may switch to a maintenance dose of Avastin every 4 weeks thereafter.
His NF2 team are really happy with the results and know he is feeling much better mentally being back to PE and football training after his foot op (a full 10 months ago). He attends our hospital youth club meeting kids going thru similar to him & loving it. I might have just gotten school on our side too with Thursday catch up work. I feel we have some breathing space again.
As a family we are also very pleased with these results and the tough year so far has been worth it to get this far.
Onto our infusion on 19th Oct which started with the fire alarms going off when we got to the hospital so we couldn’t go in for a short while!
We were then met on the daycare ward by a new signing nurse – she professed to only knowing a small amount, but that’s ok!
It went downhill from there and 6 failed attempts at cannulation by Dr Abba (he has a tendency to blame Oscar for failed attempts which causes Oscar so much stress and anxiety and makes things generally much harder and worse). Of course, we were also missing Shaz Play therapist – we haven’t seen her for a while.
We also had high potassium levels showing again in the bloods that were taken the previous day and they INSISTED they needed repeat bloods even though we have previously been told that high potassium is not likely. So that meant we would be in oncology for at least 3 hours.
So, lots of waiting around, Dr Abba called for backup with the cannula with Dr Emmanuel – who managed cannulation first time in the original place where the numbing cream had been – Dr Emmanuel is one of those special doctors who immediately puts you at ease, deals with children fabulously & instinctively and he and Oscar have great conversations about football & holidays.
As we had to wait for bloods to come back, we had our follow appointment with Professor Grundy – we talked about Ports again & declined any as Oscar prefers his sports activities – I think if anything this last year proves he needs those for his mental wellbeing. We arranged a follow up in January 2024 to see how things are at the rescan.
More wailing around for bloods to come back before we were able to start infusing and finally it was 5pm – ready to start. A very late and very long one today and sure enough we were last to leave having been there since 11.30am
These blogs are going to be monthly now and so will cover 2 treatments per blog
Next up – treatment 16 – Onwards!
NB – Instead of having a cannula at every visit you can ask about having a port line – I explained this on the 1st blog
NB – If your little person does not like needles etc you can have numbing cream (EMLA) or spray which numbs the area before they insert the cannula
Thankyou to everyone who sent me information about side effects
—
This blog has been created as a way to share real 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 grace@nf2biosolutions.org or Joanne Ward (NF2 BioSolutions UK and Europe’s COO) at joanne@nf2bisolutions.org 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!
—
THE COMPLETE AVASTIN DIARIES BLOG SERIES LINKS
Avastin Diary 2 – First Treatment
Avastin Diary 3 – Second Treatment
Avastin Diary 4 – Teamwork and Third Treatment
Avastin Diary 5 – Waiting, Trainees and 4th Treatment
Avastin Diary 6 – BSL Nurse and 5th Treatment
Avastin Diary 7 – Another Learning Curve 6th Treatment
Avastin Diary 8 – Vimto, Ice Cream and 7th Treatment
Avastin Diary 9 – Tough Week and 8th Treatment
Avastin Diary 10 – 9th Treatment and Mental Wellbeing Importance
Avastin Diary 12 – Treatment #14 Six months in!
Avastin Diary – Children’s Services Special
Avastin Diary 13 – Treatment 15 and Scanxiety!