I started this blog sitting in the waiting room of the Auckland Cancer Clinical Trial Centre, waiting to start my trial. It’s been a very long road to get to this point and one that I have documented through this blog. Like everyone a certain amount of trepidation awaits what will happen today, will I tolerate the medicine? Or the even bigger question will it even work?
I actually thought things were going to start on Tuesday. Like lots of things that happen at Auckland Hospital a lot of last minute planning seems to be involved. Although in this case I will accept the excuse that the nurse responsible for planning had been on holiday and only returned on the Monday. I must confess that in the days I ran my business I used to have a poster behind the desk that stated. “If it wasn’t for the last minute nothing would get done :-)” So a bit like the pot calling the kettle black. Especially when the staffing at the clinical trial centre is minimal.
Talking about holidays Sarah and I had taken the opportunity of what we thought was a decent break between appointments to escape Auckland. We had planned on five nights away around the Coromandel, a scenic and very popular only a couple of hours drive from home. On the fifth day we had found the perfect freedom camping spot in Pauanui right on the beach as you can see in the photo. That was before the 4pm phone call from the hospital telling us about the appointment the following day. If we didn’t make that appointment it would be three or more weeks before they could start me again. Needless to say we were back home three and a half hour later.
Still it was great to get the time away we did. We managed to recharge the batteries and see parts of New Zealand that we haven’t really explored since we updated the motorhome.
I say it starts today but that’s not technically correct since today treatment is a premedication. The drug protocol calls for a dose of Obinutuzumab seven days prior to the infusion of Glofitimab. This is to lessen the chances of a potentially life threatening side effect, caused by the rapid breakdown of the enlarged lymph nodes. Known as tumor lysis syndrome (TLS) It is one of the major things they are looking for during the administration of Glofitimab.
Which brings me to Goldilocks. For those that remember the fairy tale she tried three chairs, one was to little one was to big and the other just right. She then sampled the porridge on the table finding only one bowl that was just right before going upstairs to find a bed that was just right and falling asleep. So what does this have to do with a lump on my neck currently called Frieda.
It turns out that as I don’t have bulky disease that the size of my tumors are just right. Even though I have suffered some horrendous fatigue and low blood counts I am still considered reasonably fit and healthy so that’s just right. And lastly because I am refractory to multiple chemotherapy regimes I am the perfect candidate or again just right. So these three just right’s make me the only person in New Zealand currently undergoing this particular trial. So I am hoping that it’s just right for me.
So after arriving at the hospital at 8.30am I finally got home at 5.30pm so a full on day including, more blood tests (I thought they took enough yesterday). More ECG and five hours for the infusion itself. The really good news was absolutely no side effects. So now the seven day wait for Goldilocks and the Glofitimab. Bring it on!!!
6 thoughts on “Frieda Is Actually Goldilocks”
John, my one was “If you want it today order it tomorrow”
Good on yas both for the 5 well 4.something time away
Many thanks, Dan. Just getting away even for such a short time was a huge bonus.
WOW no side effects! fantastic.
One of mine is – If you haven’t got time to do the job properly the first time, how are you going to find time to do it again?
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So true David
Wishing you the best John. Sounds like you had a lovely break in a beautiful area.