I am well aware that I haven’t written anything here for a while but the truth is that I’m pretty boring …..! I am still, fortunately, having essentially no adverse reactions at all, I look well and, apart from some tiredness, I’m really OK!
I have my next infusion of obinutuzumab in a week or so and the venetoclax are being swallowed, religiously, every day.
I am always acutely aware that other people with my condition are having a much tougher road and I am always thankful for this “novel” regime and being eligible for it!
We actually went away for a couple of days to Wagga and even managed to spend one of our Government issued, COVID recovery vouchers during a roadside stop!!The cheapest coffee ever!!
Like shaking hands with someone famous whom you have been following for years!!
Not sure whether to open the tablets or the prawns first!!!
After a slight delay of a day we are into the next phase. (We forgot to order the Venetoclax ahead of time and, of course, the Chemist had to get some in!! We’ll remember next month!)
The packaging is little short of amazing (leaves even Apple for dead – I tried to find the photo of Deborah Mills with her first pills back in 2016 they didn’t look nearly as fancy!!) but certainly is very helpful in making sure that people don’t take the wrong dose or get mixed up – everyone is scared of TLS (Tumor Lysis Syndrome) at this point, of course, but it should be fine as the Obinutuzumab has done such a great job.
The blood test yesterday was still very good and my blood pressure is the best it has been for years and, apart from the odd bit of tiredness, I’m going really well.
I took the first two 10mg tablets today, will take the next two in the morning and go in for another blood test and to see the Doc while I’m there. Hopefully nothing will spook me and it will be good sailing. We will be very surprised if I don’t have some sort of reaction to Venetoclax sometime over the next twelve months but let’s hope that any reactions will be minor!
Back into Lifehouse at 10 for coffee before heading up to the Day Therapy where Catriona is waiting for the day. There was a bit of a wait while we discussed whether or not to have a blood test before we started – they rang the Doc and Christian said to have one but to go ahead with it anyway and not wait for the results as everything had gone well last week. I was also very keen to have a look at the blood to see what has been going on in dem bones!!
The infusion went very well with no reactions at all thank goodness! With the faster rate we belted along and were finished around 3:30 with no problems.
The bloods were great with everything within the normal range already!!! Specifically the WBC (white cell count) was 4.4 – down from over 100 recently!! Amazing stuff this targeted obinutuzumab!! As we all know this is more or less expected at this stage(the real interest is in a test 2-3 years down this track! – but it is good to get there with so few ill effects and it augurs well for the Venetoclax which we start next Monday. TLS shouldn’t be a worry if the obinutuzumab had enabled my immune system to knock a lot of bad guys down already!!
Following my emerging awareness of “how I feel in all this” I felt moved to write some reflections on “being ill”. I immediately recognise that other people have certainly written about this with much more skill, thought and depth that I can but, hey!, the role of this blog is just to chart my journey so let’s just go from there!
A few thoughts ….
“I’m not too bad….” – a quintessentially, Australian male response!. I haven’t actually had much of a reaction and apart from tingling in my legs and some fatigue. I’m OK.
This led me to wonder, in a back-handed fashion, this morning whether I might “feel better” if I was “crooker”! I feel a little bit, that if I was “really crook” I might be a bit more at ease with the care and concern that is swirling about me.
Other people, on precisely the same or other efficacious treatments for CLL do have different responses to the medication. It is very much an individual journey and while the fact that I have had a good start could augur well for the future Cycles there is certainly no guarantee.
Even Deb “Chuck” Sims’ body baulked at the last hurdle (Cycle 6) in 2016.
So, definitely no chickens being counted here.
It is good to lie down when I get tired but “am I really needing to lie down or just a bit wimpish”??!! The last time I was “really crook” was after an operation that left me with a 30cm wound around my kidneys, which still gives me a bit of gyp, but which meant I was obviously “crook”!! That was easier!!
The reality is of course that how I am now is far from the point. The proof of this pudding will be in 18-24 months (and hopefully many years on) when we see what the outcome is longer term. The reality is, of course, that a significant number of people die of CLL every year still. An email comment from a medically qualified, intelligent friend after describing a good CLL success story for another friend of his, first diagnosed in 2011, which finished: “I hope you will be one of the lucky ones!” sort of gives the perspective.
Lest you think I am worried let me assure you that “I’m good!” I am podcasting-listening walking again in the mornings which I find good for body and soul even if I need a bit of a kip later in the day. I am very positive about all this and genuinely expect a good outcome even if the need for “acceptance” and “patience” is growing in my consciousness!
Monday February 8th, 2021 – A typical infusion day “going forward” we hope!!
Day 3 was a typical “normal” day for the infusions from here on. The dosage is 1000 mg of Obinutuzumab but starting at 100 mg/hr so it doesn’t take as long if everything goes OK – this will be the pattern for future infusions, the next being next Monday Feb 15th.
We didn’t have to get to Lifehouse until 10:30, (parking wasn’t so easy then!) and after consultations with the Doc we had decided to change the steroid from Dexamethasone to Oxyhydrochlorine to try to avoid the dreaded hiccups as well as having some Pantoprazole around just in case of reflux (we didn’t need it but I had some at home which came in handy during the night later on).
Fortunately there were no real issues and everything went smoothly. I had the slightest “dead leg” in my left leg but not even as much as last week. We finished around 4:30 and were home by 5 feeling pretty good!! Very fortunate indeed!
I slept pretty well waking to take Pantoprazole once and then Panadol a couple of hours later rehydrating both times, of course. I’m awake and up by 5 ish but not nearly as amped up as last week and, as yet, no hiccups!! All good.