I’m on a bit of a high today so you’ve been warned – I feel a bit like the Duracell bunny and my batteries are showing no sign of running down. It’s probably just the lack of sleep once again but I’ve now completed the second dose escalation of ABT-199 and the second cycle of obinutuzimab (the first time I’ve had both drugs together) and I feel fantastic. I was admitted on Monday night for hydration, the same deal as last week, and yesterday took 50mgs of ABT-199/venetoclax and had 1,000mgs of Obinutuzimab infused. While all that was happening this was going on…
Cancer Research UK had asked for permission to film me for their Christmas advert – I wasn’t quite expecting a 3 camera crew, one of which was doing a “making of the ad” behind the scenes piece but it was all a little bit of fun and meant I got to see Professor Gribben in TV mode again. We’re becoming quite the double act.
My children were very excited to be filmed for the 5 minutes they got to see me in hospital. We had an emotional reunion at Heathrow on Saturday – I can’t tell you how wonderful it was to be able to kiss them, hug them and snuggle into their skin. I think the photo of my daughter and I on the way home in the taxi says it all.
They’ve been incredibly jet lagged and it’s only fair that I’ve joined in with Abbvie’s ABT sleep deprivation protocol kicking in well and truly since Monday night. It’s now lunchtime on Wednesday and, if my morning bloods still show no sign of TLS, then I’m allowed to go home and the exciting thing is, all going well, this will be my last hospital admission as all further dose escalations will be done on the day unit.
Professor Gribben yesterday gave me a copy of all my results since treatment began. My lymphocyte count (which reflects the amount of cancer in my blood) was actually much higher than I realised as treatment commenced. It had jumped in the 2 weeks immediately prior and shows that I was rapidly becoming unwell and treatment came at just the right time. This graph of that tells a story in itself. The little spikes are the lymphocytes coming back immediately prior to each obinutuzimab treatment and you can see that the ABT-199 has stopped that happening over the past week. I’m now in the normal range.
This is an incredible treatment. To achieve this result on relapsed and refractory disease with no side effects other than the tiredness associated with the monitoring itself is astonishing. My remaining little lymph nodes are already feeling softer and I now have these in my clutches…
As you can see “Ven” is now bigger and a different colour – these are 31 50mg tablets – I’ll be taking one a day until next Tuesday when I return to be monitored as I move to two a day. I can only imagine how much these tablets will cost when they are approved and I am so so lucky to be able to access them via this clinical trial. I’m on a ward where patients are having aggressive chemotherapy treatments, they’re shuffling around attached to iv pumps, hairless with that gaunt look gifted by chemo. Don’t get me wrong chemo did save my life almost 3 years ago and I’m very grateful for it but it’s targeted therapy such as this which will make the carpet bombing approach obsolete. Chemo kills rapidly dividing cells, which includes cancer cells, but also includes skin, gastric lining and hair which is why the side effects are so debilitating and, in my case, it couldn’t kill every last cell. Looking at my fellow patients I feel guilty that I am having such an easy time of it, especially when they are older and more frail than me. I will be making it my mission to help make these treatments available to everyone who needs them at the end of all this. I feel quite emotional about it – this is a very exciting treatment, thanks to those wonderful scientists the future is here…I have not felt so hopeful for a long time.
abtandmedotcom 
I’m very glad you’re doing so well and feeling so positive. Being reunited with your children must have given you a huge psychological lift.
I saw Prof Gribben at a CLLSA conference at Barts earlier this week. He seems a remarkable chap. You are fortunate to have him.
All the best for your future health.
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Thanks for the comment Graham – I wanted to come but went ice skating with the children instead! I’ll come to the next one. Hope you’re still in watch and wait and doing well. Best wishes Deborah
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I see the race is on, with you at 50mg, and me at 100mg, your closing the gap. I have notice with the 100mg dosage, a slight headache with in a hour of taking the dose. Sometimes it last a couple of hours other times it starts in the evening. Hows the potassium numbers, any slight tick up in count. Looking forward to your video.
Dave
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No they went from 3.9 which is pretty low to 4.0 and that was it – I had a 4.4 last week which caused a little excitement but still well within safe range. I hadn’t realised that the reason they worry about potassium and TLS is that it’s the potassium that stops your heart dead – in fact it’s what they use in death penalty executions in some states in the US. Will stop complaining about the heavy monitoring!
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Great to hear you so positive Deb. It all sounds fabulously encouraging.
Looking at your lymphocyte count graph it seems like your timing was perfect.
No side effects, last hospital admission and reunited with your children…..seems like Father Christmas arrived big time for you. There again, I think you are well and truly owed.
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Thanks Arthur! Enjoy all that sunshine, not sure why I had to have 18 months of winter instead of 18 months of Summer.
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The heavy lifting is done, all down hill from here. Hows the neuts holding up? That is one of the main numbers they comment on. Please keep me informed on your progress, I personally fell that 100mg is not enough for the trial, but only time will tell, OSU needs the results of the other two cohorts(200mg, 400mg), before they will raise my dosage. I’m getting minor side effects at 100mg dosage(read cll forum). Hope these side effects don’t show up with you. Again, “May the Force be with you”
Dave
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Hi Dave, lowest neuts have fallen to is 1.4 – they’re in the 2s at the moment. I hope you get to up the dose soon. I’m not getting any side effects at 100mg but then I’m not on inbrutinib with it (I’d like to be though!). If I don’t get to MRD I’m wondering if I might be able to find a way to add that into the mix – they have something called the Trials Acceleration Program in the UK – I will talk to the Prof about it down the track. Yours really is the most exciting trial at the moment.
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