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!
(The prawns are for tonight, as it is Elaine’s semisesquicentennial birthday today!!)
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!!
Locked and Loaded
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.
I decided not to write anything yesterday as I felt it was best to let the steroids work their way out of my system lest, in my exuberance, I say things I later regretted!! Things have gone really well, thank goodness, and I have much to be grateful for.
Day 1: Monday Feb 1st
We started at the clinic at RPAH, just after 8 am, for bloods and a consult with Christian Bryant, my doc. We headed over to Chris O’Brien Lifehouse for coffee and admission to the Day Therapy around 10:15.Today’s regime was just a “taster” of 100 mg of Obinutuzumab along with paracetamol, Dexamethasone (a steroid to stop vomiting) and an antihistamine. After some flushing out etc. the Obinutuzumab headed in at 20mg/hr at 12:10 pm … we’re off!!
Things went pretty well with no adverse reactions and no need to stop with the dosage rate being increased every half hour. (You can download detailed info for the whole procedure & protocols and other treatment regimes from the NSW Health eviQ site, So you can know exactly what they are going to do to you!! When I was checking her calculations, Jeeranat, the nurse, said: “Are you a doctor??” .. Perhaps it was a compliment! ). My only problem was some “tingling” in my legs and hips which I can best describe as the sort of warning feeling you get when you are getting the flu or a UTI in a couple of days time. I thought the reclining chair was giving my back gyp and walked around a lot but it all subsided. I was reminded of the reactive pain Deborah felt in her “big bones” (the legs, hips and sternum which are the repositories of most of our bone marrow). It wasn’t bad at all and no interruptions were needed.
Finished about 4:45 and home by 5:20!!
Day 2: Tuesday Feb 2nd
Woke at 4:30 am feeling good with a slight headache and the steroid kicking in. Wrote some emails and had coffee. Had a slight case of hiccups – more on that later!
8:20 into the Day Therapy for the real deal today with the remaining 900 mg of Obinutuzumab to go in, (the standard daily is 1000 mg) with the other stuff. Fortunately this was a breeze of a day which we wrapped at 2:30 ish and home for arvo tea!! (I know how lucky I am to live so close to a large metropolitan hospital and have real empathy for any of you from remote parts for the associated isolation and travel this adds on top. And I just shake my head at Deborah doing it, almost alone, when it was still just a trial in London 17,000 km from home and her little kids!!).
Day 3: Wednesday Feb 3rd
The hiccups had been there slightly in the morning and didn’t affect the treatment but they really took off in the evening and wouldn’t let me get to sleep. I took a mild sleeping tablet but was awake several times through the night. I did all the “home hiccup tricks” but they kept at me. I know it sounds funny but, as I am a touch vulnerable, I would have been spooked by anything. Dr. Google says the Dexamethasone might be the culprit so I am going to ask the doc if there is an alternative.
Otherwise I’m pretty good and are those steroids good fun, I ticked a lot of things off my list today!!
I go back for the next 1000mg dose next Monday. I’m a lucky boy!!
I thought I was going to the airport to start my journey!!
The virgin’s arm awaits the first blood test
Well, Day 1 went pretty well. A few little reactions but none of them even rated Level 1 and, while they lingered, more water and some walking around sorted it!! I give a bit more detailed report probably on Day 3 as we get 900 mg tomorrow – only a 100 mg “taster” today.
Thanks for all the positive reinforcements!!
Who’s the Patient here??
My carer having a short “Nanna Nap” – I actually found the visitors’ chair to be better as my “bigger bones” had a few niggles! Lucky people!
Resting up @BeautifulLakeMacquarie getting ready for the “march”!!
As I reflect on how I feel and on the experiences shared by other CLL people about their symptoms I have come to the realisation that I am a very slow learner!! A couple of the commonest symptoms are “night sweats” and “fatigue” so when people, including the Doc have asked do I have any symptoms I have always said: “Not really. There are a few things but I think they’re just old age!”.
While packing my kitbag I have had cause to remember really bad night sweats that I had several years ago, around the time I was diagnosed. You know, having to change my pj tops (even in winter) etc but, to be honest, I genuinely thought it was an anxiety symptom due to a, completely unrelated to CLL, very stressful period of my life. I don’t get them much now (just little ones sometimes) but typically sleep without a sheet or blanket every night – so I think I now realise just what was going on then!! (Just an aside – Deb Sims reckons a bout of pneumonia kicked off her CLL way back and I am wondering if studying a causal link between significant stress and the onset of CLL symptoms might make a good PhD!).
The other thing is this stuff called “fatigue”. Sure, I get tired generally after a broken sleep, but if I have a kip I’m generally OK. I’m almost 72 and have just thought that the need to rest a bit is just getting old. Recently, however, I have had a few days when I am just knackered, without being sleepy at all. After sitting for a while I’m generally good to go again. I have realised that this is what you other guys and gals call “fatigue” – it is different to just being tired!!
As I said, I’m a slow learner and I look forward to maybe not feeling these after the obinutuzumab kicks in next week! I’ll let you know!
Well I start my CLL treatment on Monday, February 1st and, following the leadership of Deborah Sims, I have decided to keep my journal in the form of this blog. While I appreciate the support that we all find in the various Facebook groups, in many ways I am a little more comfortable with this medium. In the past we have used blogs to record our overseas trips so it seemed a good thing to use the same approach for this journey too.
Before I even start, I want to express my deep admiration for and my personal -gratitude to Deborah Sims, whom I very much see as the Australian Chuck Yeager of CLL – don’t miss the point that Chuck died, in his own bed, at 97 which is how I hope Deborah goes out!!. You can read about Deborah’s journeys in her own blog which has several stages beginning with Diagnosis in 2011 (at the age of 38!!); Chemo in 2012; Obinutuzumab & Venetoclax in 2015; Ibrutinab in 2017 and CAR-T in 2020!! (I may not have all the dates quite right but you can read for yourself!) Anyone with CLL in Australia knows how extraordinary she has been in the face of real fear; how courageous and determined, yet warmly human she is; what a great lobbyist she is and how much she has given back.(if you are new to blogs, or a bit non-tecchie, and want to read a summary of Deborah’s early years with CLL – this has been very helpful for people like me just starting out – you’ll find it easier to go straight here which is a post from February 2016 which covers the early years in one go!). There are other courageous people to acknowledge, of course, but I don’t “know” them so well. A special mention, of course, to Dr. Brian Hoffmann and Randy Shirley. It’s hopefully unnecessary but in case you have never seen the Leukaemia Foundation or Lymphoma Australia or the CLL Society of the US – these are wonderful sources of help, information, support and good stories!!
I just wanted to put you in the picture about Mick’s illness for which he is starting specific and direct treatment on February 1st.
I have CLL (Chronic Lymphocytic Leukaemia) a blood cancer which affects a reasonable number of people. The most common case is a “codger” aged around 70 – as always, I am a classic example of the genre! It was diagnosed several years ago and following a few years of “watch & wait” (regular full-blood tests and examination 4 times a year) has to be treated now due to a significant increase in my white blood cell count.
Consequently, at Chris O’Brien Lifehouse at RPAH, in Sydney, Mick will have six, 28 day cycles involving infusions of Obinutuzumab (a monoclonal antibody – this helps Mick’s immune system attack the cancer cells) combined with a strong course of Venetoclax tablets (a very modern specific protein inhibitor – this helps the cancer cells remember that they can die naturally, just like healthy hair and skin cells, something the cancer cells have “forgotten” how to do) which will continue on for six months beyond the infusions.
Mick in the final quarter 