Out & About – at least a little bit!!

It’s about two months since I finished my “first course” and we’ve been putting the “plan” from the last post into action and actually getting “OUT!” quite a bit although we are always rather circumspect lest we pick up some strands of Omicron (probably BA.2 at this stage)! We have been to a great ACO concert (everyone wore masks); seen more of the kids/grandkids(lots of RATs); Elaine has been back at Curves (masked) and we actually had a two week Road Trip to Albury, Vic High Country, Mornington Peninsula, Melbourne which was really just the tonic!! Simply to be in the car together with no rigid agenda and lots of lovely open country (and no rain!!) was an enormous fillip for us both. To actually catch up (FTF) with good friends and see some “country” was wonderful!!

On the treatment front, if I catch COVID I still have to head straight to Hospital but the news from the US that Sotrovimab is no longer supported as a treatment for BA.2 by the FDA is a worry! Our own TGA is looking urgently at using a 1000mg Infusion dose (up from the recommended 500 mg) for use in Australia. So it looks as if I need to be looking towards Pavloxid, Molnupirivir or Remdesivir!! Things keep changing!!

On the numbers front – here in NSW they are climbing again, albeit not as much as earlier in the year. I don’t know that I agree with the politicians who are pushing to remove “measures” and I am amazed at the way the numbers have just dropped off the public radar despite being “extraordinary” at any normal time in history! 1560 people have died in NSW since Omicron took off just before Christmas – they aren’t all aged over 95!!

“Opening Up” aka “Setting Sail in a Pandemic!!”

Last Friday, 18th Feb 2022, was a pretty significant day in this journey. After 2,190 tablets in just over 12 months (not counting paracetamol!) I have officially finished the first stage of my cancer treatment. This is the finish of the Venetoclax (and the antiviral and anti-urea sidekicks) after having finished the Obinutuzimab infusions last June. With everything within normal ranges the “bloods” are looking good so I’m embarking on the next, hopefully looooong journey in a small boat across the Sea of Remission! 

The Captain is well, if not particularly fit, and the First Mate, apart from her tendency to sometimes query the Cap’n’s commands seems to be happy to come along. The course is largely uncharted and we are not sure how long the trip will take or just where we’ll land to begin any future stage of treatment (if one is needed!). Possible headwinds, or at least unpredictable turbulence due to the Pandemic are, at this stage, the biggest concern so we need to build up some of the Captain’s immunity before we set out. Once the Harbour Master gives his OK, we’ll be off!

Stop Press!

The Harbour Master (aka my Haematologist) was pretty bullish today!! 

Banking on a little immunity already, he said to go for the 4th Booster (actually a full dose of Pfizer) which is allowed to CLL patients, like me, asap. We’ll do MRD (checking the amount of residual cancer – a pretty good guide via the bloods only!) at our three month catchup in May and I have to watch out for the dreaded Shingles and get Shingrix asap also.

But, apart from that, be careful and have fun!!

His observation was that his patients who have caught COVID “weren’t too bad” and no one had died and a couple of his mates who were Respiratory (and now COVID) specialists would “give me what I needed” should I have to go there RPAH – which is a comfort!! 

My initial guidelines:

  • I’ll wear a mask around people whose status I don’t know.
    • Probably no movies (out) for a while
    • Certainly the odd classical concert and/or play in an “airy” space and masked.
    • Shops like local supermarket/Bunnings early in the morning and masked. Still click’n collect and Home Delivery.
    • No public transport (perhaps in a quiet time).
      • My Opal card says I haven’t been on a train since June 23rd last year!!
    • No crowded restaurants! Places we know with open/outdoor areas
    • Driving trips away
    • Self-contained accom (where possible). No lifts or corridors for everyday access.
    • I need to get back to the Gym but have to research that
  • With people we know family/ friends
  • Mutual RATs almost de rigeur.
    • Limited kissing/hugging/sharing fluids etc.
  • Keep my eye on the Numbers!
  • My guide is 1 Dec 2021 (Pre Omicron) {the last time I felt “safe”!!}
    • Cases 251   Hospital 154    ICU 25  Deaths 0
  • Yesterday (eg) 18 Feb 2022
    • Cases 7615  Hospital 1297 ICU 81  Deaths 12
  • Watch the Hospital numbers mainly!!

https://docs.google.com/spreadsheets/d/e/2PACX-1vSxV3V9aFLmp7EjNIaExc836i092OjT04rEESVRQQyb7dxqoTeDKSmEpn9K260PwRZlGkTLx3M6s81Q/pubchart?oid=1981561305&format=interactive

  • Expect another wave sometime!!
  • Do a couple of trips soon!!

Finishing the first Lap !!

After almost a full year I have started on the last bottle of Venetoclax (having finished with Obinutuzumab in June) and am headed towards the end of this course of treatment around Feb 20.

My blood tests are fine , on all measures, and with my Doc we will do a test for MRD (Minimal Residual Disease) to give my status a rating.

This, of course, brings up the real question: “How long will I stay well!!” As with all things in life the best answer is to “Travel hopefully and we’ll see!”

I am trying to get across the changing situation of the novel medicines for possible treatment if I should get COVID!! (it is changing rapidly as you know better than me!)

  • Prophylaxis (pre-COVID infection)
  • Evusheld
    • Is this a possibility for me instead of revaccination???
    • Is there any in Australia yet??

  • Post-COVID infection (hopefully never needed!!)
    • I realise there are different treatment protocols (some are tablets, others infusions, and that I would only get one of the following unless I was really crook in ICU.
  • Sotrovimab
    • Still my main hope! 
    • Not sure they still have a lot left in Australia??
  • Pavloxid
    • I like the look of this one!
    • Is there any in Australia yet?
  • Molnupirivir
    • Seems to be not as good as Pavloxid??
    • Still on my list of “desirables” should I have to go to Hospital??
  • Remdesivir
    • Still on my list of “desirables” should I have to go to Hospital?

It certainly is a New Year – let’s hope it goes OK!!

Some of you may remember my COVID plan (from a few months ago) which, apart from taking all possible steps to avoid contracting COVID, centered on getting Regeneron or Sotrovimab asap after being admitted to hospital. I was feeling pretty good about my chances with this regime but the recent Omicron flare up and the news that Regeneron doesn’t seem to be effective against this new strain has certainly “put the wind up me”!!

Couple this with the rampant contagion of Omicron, albeit apparently less virulent; the dropping of masks and QR codes; the “personal responsibility” mandate; the obvious “unconcern” for those “few” who will die; the pressure on hospitals …  again albeit with smaller percentages in ICU; the demise of the “close contact” and the indisputable fact that most people don’t get too sick with Omicron and I find myself in something of a quandary! 

So what is my best plan now?

  • I don’t go anywhere or see anyone outside a very small “bubble”.
  • No one comes “inside” here (or we don’t spend any time elsewhere) without mutual RATS being passed. (I was better prepared than the Govt and have plenty of RATS even if I am embarrassed when charities and more needy people are begging for them!).
  • How long will this go on?
  • If/when I get COVID will my hospital still have room?
  • Will I be able to get Sotrovimab and/or Molnuprivir?
  • Is there any chance to get these drugs and be allowed to “wait” at home?

What do you think my odds are?!! Any advice??

“One of our main shield generators is down!”

To paraphrase Star Wars (who would never know it is not an exact quote?) one of our main defences against COVID is “down”. This article in the NYT 21/12 gives the very disturbing news that two of the three monoclonal antibodies that have been the main defence of hospitalised, immunocompromised people appear to be NOT WORKING against the Omicron strain!!

Monoclonal antibodies have become a mainstay of Covid treatment, shown to be highly effective in keeping high-risk patients from being hospitalized. But even as infections surge and Omicron becomes the dominant form of new cases in the United States, some hospitals have begun scaling back the treatments, fearing they have become suddenly useless.

In New York, hospital administrators at NewYork-Presbyterian, N.Y.U. Langone and Mount Sinai all said in recent days that they would stop giving patients the two most commonly used antibody treatments, made by Eli Lilly and Regeneron, according to memos obtained by The Times and officials at the health systems.

Thankfully one mAb, is still working but this is a disturbing sign about our ability to counteract Omicron.

The one monoclonal antibody treatment that has performed well against Omicron in laboratory experiments is also the most recently authorized: sotrovimab, made by GlaxoSmithKline and Vir Biotechnology and cleared in May.

The availability of these very significant agents is a main plank in my personal COVID plan and quite frankly this report has well and truly “put the wind up me” about Omicron from the point of view of immunocompromised patients. Regeneron probably helped Donald Trump recover so easily and is a “first call” treatment for Americans (especially rich ones) who test positive for COVID.

I realise that we have to balance this by the initial indications that Omicron may have less severe symptoms and cause fewer deaths but it is still very early days for Omicron and there is almost no data yet on Omicron and the immunocompromised!!

We have both Sotrovimab and Regeneron in Australia  (more Regeneron than Sotrovimab) but obviously not all hospitals will have Sotrovimab (I’ll be checking!).

Dr. Bob Wachter, chairman of the Department of Medicine at University of California, San Francisco, warned that limited availability of antibody treatments might come as a shock to patients who assumed they would be a reliable, potent treatment.

If you have chosen to be less safe than you might have been, either because of your choice of vaccines or your choice of masking, it’s a riskier proposition than it would have been a couple weeks ago,” Dr. Wachter said. (my emphasis)

It comes as a shock to me!! I’m choosing to be “more safe” until we get more news!! Happy Christmas!!

(I held this over, not wanting to be the Grinch who stole Christmas but we are really keeping our heads down for some time now!! Keep safe everyone!)

Brian Koffman’s gentle, clear-sighted take on this is below.

Just a little bit stir crazy!!

I haven’t written anything for a while which is generally good news and all is going pretty well on the physical front. I have three months to go on Venetoclax and my bloods are “perfect” and my only ailment is tiredness but even that sounds wimpish coming from an alpha male like me!! 😉

– the gorgeous pic is pre mypost lockdown haircut (and shave)!

I just wanted to add a couple of reflections on living, as immunocomp, in this “awakening” stage of COVID with all its uncertainties:

  • while I am very much OK with still “maintaining my distance” I must confess to a certain “awkwardness” (for want of a better term) as I respond to invitations/ going somewhere new / catching up / celebrating etc. The “tough guy/nice guy” part of me can feel sort of silly or precious in hanging back and yet my rational self reckons three to four months isn’t long to wait before I can get vaccination that should work. I’m also rather sick of being effectively “grounded” even though my life has plenty of distractions. First world problems , I know, just sayin’ …..
    • I was very interested to read a pro-forma letter to family/friends made available by the CLL Society of USA that could be useful to “pass around” to nearest and dearest. It is well written (of course!) and made me think about how I communicate with my lot!
    • e.g: “This explains why I should be more cautious than most people.  Limiting the number of people I am with, wearing a mask, and social distancing are a few ways to do that.  Holiday celebrations, where larger groups gather to eat together, create risks that I may choose to avoid.”
  • I take great encouragement from the emerging stories of how CLL patients who have unfortunately caught COVID are having great responses to the mABS (monoclonal Antibodies – some use mAbs, MABS … some just say “magic“) upon being hospitalised.
    • Two from that wonderful support group the CLL Society in the USA
      • Teresa Burns, a CLL patient, wrote this moving essay about her reaction when learning she tested positive for COVID-19 despite being vaccinated and always wearing a mask. Being immunocompromised, she was able to receive Regen-Cov (casirivimab and imdevimab).
      • Jill Gollinger, also a CLL patient, wrote this article for her local community magazine about her push to get accepted into the Compassionate Use Program to prevent COVID-19 by receiving monthly infusions of Regen-Cov. She is hoping to avoid the same fearful news as Jill received. To learn more about Regeneron’s robust Compassionate Use Program, click here.

Here’s another from a patient in Adelaide – (remember we use slightly different mABS in Australia) – from Facebook – it is extremely encouraging to have actual “stories from the frontline”

Enough for now …

Roll up Your Sleeve (again!) and get ready for anything!!

I’m spurred on by NSW “re-opening” and being acutely aware of my presumed lack of vaccine protection and encouraged by the excellent CLL Society (from the US) to prepare I have made my plans!! To the left is my “label” which will hang around my neck when/if I actually go to hospital!!

Below is a copy of my personal COVID action plan which even causes me some amusement!! While not being a “panic merchant” I recognise that this stuff is very serious and that there is quite a good chance I will catch COVID at some time, even if I am very careful.

I just don’t want to end up carking it from COVID because of some event I could perhaps have anticipated (e.g. my preferred hospital being closed/full/quarantined etc.; no one realising that I need Sotrovimab straight away!!; possibly being unconscious)!! I have also realised that I will be “on my own” with no visitors or support people (beyond the health professionals) – so I need to take stuff with me!!

Mick Prest – COVID19 Emergency Plan       Oct 13, 2021

with thanks to https://cllsociety.org/2021/09/cll-society-on-demand-covid-19-virtual-community-meeting-the-delta-variant-and-staying-protected/

As NSW begins to “open up” on Monday 11th I am making plans for my own journey. We all accept that the likelihood that I have any real protection from COVID due to vaccination is, probably, very low, due to my lack of B cells. I am double vaccinated with AstraZeneca (and waiting for my Booster).

In general, my plan is:

  •  to act as if I am not vaccinated 
    • I will get my booster shot asap! (DONE!)
    • I will avoid crowded places, always be masked and limit my circle of contacts.
    • I will always wear a mask in public,  and only an N95 mask indoors outside my home.
    • No plane travel. Only essential public transport travel  
    • I will get a COVID test if I have any symptoms or am judged even a “casual” contact.
    • I will investigate the use of rapid antigen tests for the use of both myself and visitors.
    • I will avoid contact with unvaccinated people.

Should/when I test positive for COVID

  • If I have mild or no symptoms
    • I will present immediately to RPAH emergency
    • I will show my RPAH Haematology card
    • I will insist on Sotrovimab or Regeneron!! – supported in writing
    • I will have written details of my contact details, medical details, current medicines
  • If I have a temperature and significant symptoms
    • I will ring an ambulance, explain my history and insist that I be taken to RPAH
    • I will show my RPAH Haematology card
    • I will insist on Sotrovimab or Regeneron!! – supported in writing
    • I will have written details of my contact details, medical details, current medicines
  • If I am unconscious
    • My family will ring an ambulance, explain my history and insist that I be taken to RPAH
    • I will have a sign around my neck explaining my RPAH Haematology status and insisting on Sotrovimab or Regeneron!! – in writing
    • Attached will be have written details of my contact details, medical details, current medicines

Other things in the “kit”:

  • My phone and charger
  • My medicines
  • Pen and Paper
  • Several days medication
  • Hearing aids, store box, batteries, leads x 2, partner mic, 

Antibody tests – Do the vaccines work for us? Should we get checked?

There was a terrific presentation a few days back which give some really good information around the concerns re Vaccine Efficacy and Antibody testing which I spoke about in the last post. Sponsored by the Leukaemia Foundation and available in full on Youtube COVID-19 Vaccinations: Fact and fiction this presentation was given by:

Associate Professor Nada Hamad, UNSW, St. Vincent’s, Sydney and Associate Professor Paul Griffin, Mater, Brisbane.

You really should watch the whole of it as Paul covers “Vaccinations” in great detail (and answers some questions at the end) while Nada is very clear about “Vaccine Efficacy” and “Antibody Testing”.

I have taken the liberty of clipping some of the transcript of some of the bits that spoke to me most strongly (the timestamps will easily let you find the actual dialogue). These two certainly allayed some of my worst fears but I’m still going to be bloody careful – which, I am sure both Paul and Nada would endorse!!

46:14    Nada Hamad   So from a practical point of view, I say, look, we’re going to vaccinate you but you’ve got to act like you’re unvaccinated because I don’t know if you’ve responded appropriately or not, or whether your immunity is going to be maintained or not. The question about: Can we check this with a test is quite a fraught question? We may be able to check with the test but most of the tests that we would use to check this response have not been validated. So there is usually an antibody that we can detect due to the vaccine but we’re not quite sure what level of antibody actually means immunity and, are we confident that the immunity that we check tomorrow is going to be maintained in someone with a blood cancer? So do we keep checking every day to check if it’s maintained or not? If it’s zero, well what do we do about it? If you haven’t achieved a response well what does that mean? Will you be more immune if we give you more of the vaccine? And the answer is we don’t know! So I’m a big believer in not doing a test if you’re not going to act on it and unless there is an action attached to that test then my recommendation is we don’t check. Now that can create a bit of anxiety either way. Not checking can make people anxious because they don’t know, but checking and finding out that you don’t have a response also will make you anxious. And, so you know, for all of the tests that we do we usually have to think very hard about the utility of the test and the validity of the results that we get in terms of studies that can help us figure out this issue.

1:12:30      Paul Griffin    The trouble is we don’t really have great tests readily available to show that the vaccines have worked. In the clinical trials we do all sorts of really fancy testing that’s very specialized and and while a lot of people will talk about antibody levels that really only tells a a part of the story. The really good thing about these vaccines is they’ve all been very specifically designed to generate just the right kind of immune response that we need to get the best protection and that includes a lot of activity from even things like T cells, some very specialized parts of the immune system. So sometimes the antibody levels might be relatively low but if we’ve got that response from those T cells people are still really well protected. So if we do antibody tests it can be a bit misleading. Some of those have suggested that maybe 20% of healthy people, that don’t have immune system problems, might not have detectable antibodies afterwards but are actually very well protected!

53.50     Nada Hamad       So the practical thing for patients in this position is to get vaccinated as recommended by GPs and Hematologists and then act as if you are not vaccinated.

Well, I’ve had the Jabs but ……..

I had my blood test and the follow-up Telehealth on Monday (yesterday) and the good news is that the blood test is pretty much perfect which is a nice way to be!!

Now believe me when I say that I know I am very lucky to have had such a good treatment and such a good run. To be doing really well after eight months augurs well for the longer term … (are you waiting for the but?) …. there’s this thing called COVID!!

There is quite a bit of research and information from places like Israel and the US questioning the longer-term efficacy of the various vaccines and it appears that for people receiving treatment like me the vaccines simply do not work!! The Venetaclax on top of the Obinutuzumab is wiping out most of my “B cells” and those little beauties are what make the antibodies with the vaccine. In the US they have  recommended a third “booster” vaccine but the medics don’t really think that will do much. It means that I have to keep dodging bullets until my treatment finishes (February), wait a couple more weeks and get re-vaccinated. This should work then and give me the same suit of armour that (I hope) you are all wearing already!!

e.g. From the CLL Society US

  • CLL patients should not assume that because they are vaccinated that they are protected.
    • Vaccines leave too many of the immuno-compromised unprotected based on lack of antibody response. This is especially true for CLL patients.
    • The fully vaccinated immune compromised are at much higher risk for breakthrough infections and are at especially higher risk for hospitalization and death compared to the general population who have been vaccinated.
    • In CLL, we are waiting for more data, but I would be happily surprised if we found out that a booster could help more than half of those with blood cancers. Still, that would be a significant “boost”.

Given the above it behooves one to at least have a bit of a plan just in case COVID slips through my defences and I test positive!! (I’m not particularly worried about this but it would be foolish not to plan ahead especially if the pollies “open up” as planned – which I think will be interesting to say the least!). Amongst the very interesting news filtering down the wires is possible treatments with more of those magical monoclonal antibodies. I have written about them in some early posts (Venetaclax & obinutuzumab are both in this stable) but there is now one called Sotrovimab which CLL patients who get COVID need to be given as first-line treatment in hospital before the symptoms develop further!!

My COVID Plan is to get to RPAH (it’s an infusion so I can’t just get a jab), with a sign round my neck saying: “There is a phial of Sotrovimab here with my name on it please put it into me NOW!!”

The best laid plans …………………………

Lockdown in Sydney

Well we are now about two months into the BIG Sydney lockdown and it might go till Christmas!!

It’s just as well that I have finished the hospital infusions as it is a bit creepy to have to go out now as there is so much COVID around Sydney.

Fortunately I have been able to get my blood tests done locally – you just pick a quite time and wear your mask. These go direct to the Doc and we meet up on Telehealth which works pretty well when things are going well! (which they are!)

The neutrophils were a bit too down a few weeks back but today’s results show “a pretty normal blood test”, to quote my Haemo! So it is steady as she goes and I start quaffing my second set of repeat prescriptions for Venetoclax which will carry me through until Feb 2022 before this little ship heads out onto the Sea of Remission for hopefully a long journey!

I haven’t written a post for a while because not much has been happening (I only have about three new pics in my Google photos and two of them are of my own navel!). I just wanted to let you know that I am going well, occasionally a little tired, but truly in good shape!!

I never take anything for granted but I know when I’m lucky and remember that I’m not counting the chickens for a good few years yet!! One possible cloud on the horizon is some recent research shows that immuno-compromised people on magic drugs like I am taking don’t seem to produce antibodies in response to the vaccinations very well. So if any of you are or know anyone who is “vaccine hesitant” tell them to get it for me!! The vaccines will give me protection mainly by removing the stuff from the general community!! I’m still being very careful!