Today has been a very long day in the infusion chair with Mum at my side, you’re never too old to need your Mum. The first of my two drugs, the monoclonal antibody -Obinutuzimab (previously known as Gazyva), only started being infused at 4.22pm at a rate of 100mgms over 4 hours after lots of hydration, Premeds including steroids, an antihistamine and that wonder drug paracetamol.
I had been warned to expect a reaction and was suddenly flushed with a warm fuzzy feeling, followed a few minutes later by a scratchiness in my throat then breathlessness and a constriction in my chest and a overwhelming sense of needing to throw up…had my friends Eddie and Mike with me at the time so managed to stop myself and they got my trials nurse Sam who stopped the infusion, put another Canula in my other hand for some anti-emetics (I had a bit of drama yesterday with the PICC line which I won’t go into suffice to say I left the theatre in tears and refused to let them have a second go at putting one in me). I was a bit cheerier when I arrived back here this morning…
This is a very powerful drug and I have never had a reaction to anything like it. I tell my friends that this is the drug that puts a tail on the Cancer cell and then stimulates my dodgy asleep on the job immune system to kill it so I think it was getting to work straight away. 20 minutes later, when I had had a break and was feeling better, the infusion was restarted at a rate of 100mgms per 6 hours and my nurse stayed with me to check I was ok before putting me up to the higher rate. I’ve now been back on it for 20 mins and, touch wood, I feel fine so hopefully that’s the allergic reaction done with. The day ward closes at 8 and I’ll need to be infused until 9 then have to have bloods 2 hours later so I now have a bed for the night here as my day starts at 8 tomorrow. Almost like doing shifts at work! This will be the first time in the almost 4 years since diagnosis that I’ve had to spend a night in hospital. Still excited but tinged with a note of now appreciating my new reality – my nurse reminded me that nausea can do that to you (and I hadn’t even had the benefit of a big night out). And how’s this for my view today?!
Quick update – the infusion was restarted and I had no further reaction for the rest of the time. It finished at 11pm – just waiting to do a blood test for the trial in around 40 mins and then will be heading home (no hospital stay tonight – yipee!)
8 thoughts on “Lady Gazyva”
The first infusion is the worst with obin. Most reactions only occur with the first and rarely the 2nd dose. Stay strong. Brian
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Great thanks Brian – was a bit shocked but so relieved that that appears to be it. Step up to 900mgms tomorrow – another long day for me and my trial nurse (had not appreciated that he would be staying with me the whole time – he won’t get home until after midnight either). Takes a special kind of person to do this job which requires so much dedication – I feel like a rockstar with all the one on one attention – he’s great and I’m very lucky. Could get used to this.
Thanks Brian – so relieved there hasn’t been more reaction – was worried I might be allergic to it after all this work to get on the trial! x
So pleased that you didn’t have to stay the night I got home at 10pm. I will follow you with Great admiration for one beautiful brave lady and a wonderful mummy by your side . X
You are now truly a Gazyva Girl. My first day was almost exactly the same .. that surprising rush and then the gag. For me .. that was it. And soon your only pre-med for the G-bomb will be two oral acetaminophen, if you are getting the “traditional” dosage. It is an amazing drug and so easy to receive. I found that I became hungry during the infusion so had what we call trail mix .. nut mixture with dried fruit .. to snack on. Given your view and the attentive treatment, you can probably order from Harrod’s food court basement !! Me ke aloha, Lynn.
Oh Harrods food delivery – what a wonderful idea Lynn! Loving being a new Gazyva Girl – and proud to join our growing Club of this wonderful immunotherapy – I know so many of you who have done well on this as mono therapy and it certainly packs a punch. Hope you’re feeling well my friend x
Debs only just met you but I have to say you are one courageous woman! So glad you have your mum with you and happy to bring you Trail mix goodies any time!
Aw thanks Vikki, so nice of you to say that and trail mix goody deliveries sounds fab x