COVID: Protected 7 ways!

I’m just on my way home after a visit to a UCLH research lab, having been injected earlier today with two doses of lab-grown COVID antibodies (two – one for each buttock). It’s been an extended visit: first, almost an hour with a doctor, explaining the study and asking screennin questions. Then followed a lateral flow test. When that came back negative, but not before, they were able to order the antibodies from the hospital pharmacy. With an expected hour delay waiting for it to arrive, I had time to get out for some lunch. After the injections, I was still not allowed to leave. I’m now being kept here a further hour under observation, to check for any adverse reaction. 

This is for a sub-study of the PROVENT clinical trial I joined in January last year. The point of both studies, is to test the effectiveness of laboratory grown antibodies as a possible alternative to vaccines for people with compromised immune systems, or for whom vaccination may for any other reason not be suitable. Early in the vaccine development process, it was felt that it was not known to what extent COVID vaccines would be effective, so Astra Zeneca (and other companies) developed this alternative approach. To be clear, this was not because the vaccine would not be effective, but just that it was not known how effective it would be. Also, it was not clear if GIST patients really are more at risk than other groups (some GIST specialists believed it to be so, other disagreed).  Either way, the combination of imatinib use and loss of spleen together with my stomach when I had my GIST taken out, qualified me in terms of government guidelines, so I was very happy to join the original trial last January. 

That involved an initial visit and injections at the first visit, followed by several more physical monitoring visits to UCLH during the next twelve months, ad weekly telephone or email monitoring checks, culminating in what should have been the last one last month. However, at that visit they told me that the trial has been extended a further three months, so they want me back again in April. I thought that was that – but no. Two weeks ago, they wrote to me to say that AZ are now doing a sub-study, to check the value of a second dose on antibodies, and would I be happy to participate? Of course I said yes, and so here I am. (For the record, I know that in the initial trial I was given the antibodies, not the placebo. They told me that when I was unblinded, after being offered the standard vaccine. The terms of the sub-study are such that everybody who was on the antibodies first time, gets antibodies again). 

That leaves me excessively well protected. I’ve now had two lots of antibodies, as well as three standard COVID vaccinations. In addition, the NHS wrote to me in December to warn that because I’m classed as extremely vulnerable, I should do a PCR test at the first sign of any symptoms – no matter how mild. To make that possible, they sent me in the post a PCR test kit (marked “priority” test kit) to keep always on hand. (After I did in fact use that test last month – which gave a negative result- they sent me a replacement). Finally – if all these protections fail and I somehow get COVID after all, as an extremely vulnerable person, I am guaranteed fast track access to new COVID treatments still in trial but not yet approved for general use. So, on paper I may be vulnerable – but I have abundant compensating protections. Looking ahead, iI will need to return for a further six monitoring visits over the next year, and will answere weekly email questions to check progress, If I do show or report any suspicious symptoms, they wiill send a nurse out to my home, for a thorough examination. (They did that last March, all the way from central London to the south of Surrey when there was something of concern in a blood test. AT 8:30 on a Saturday morning, I had a nurse at my door).

So, I’m fine. What does it mean for everyone else. especially for other GIST patients? Well, I think it’s extremely good news. While it’s still not entirely clear to me whether all GIST patients are necessarily more vulnerable to GIST, there will certainly be some who are – and there will be some people who for one reason or another are not suitable for vaccinations. For such people, the antibody approach could be a useful alternative strategy. Also, in parallel with the PROVENT trial I was one, there was a second trial with the same product, for use in cases where people who had not been vaccinated, believed they had been in contact with someone with COVID. In such cases, where it is too late for vaccination, direct injection of the antibodies could produce rapid protection. We still wait for the final results of both trials, but preliminary analysis done at the half way stage was extremely encouraging: for PROVENT (the arm I was on), there was found to be 83% risk reduction compared to the placebo group, no serious disease and no deaths. 

It’s also worth noting that Astra Zeneca are not the only company testing this approach. On the BBC News at 10 last night, there was an item taken inside a hospital of a patient being treated with what was described as “monoclocal COVID antibodies” – exactly analagous to the product I’ve been given. It’s not the same though – that was being delivered by infusion, mine was done by injection. When I discussed this witht the doctor administering the trial this morning, he confirmed that other companies are indeed developing similar products. 
Overall, this has to be considered a good news story – yet more weaponry in the fight against COVID, for all those who for any reason may be, or feel themselves to be, especially vulnerable.

Three Years With No Stomach.

Three years ago today, I was in the Royal Free Hospital for surgery to remove a massive GIST (“GastroIntestinal Stromal Tumour”), and with it, all of my stomach and spleen.  So – how has life been, with no stomach?

Prior to surgery, I had been warned that I would have to make substantial adjustments to how I ate (and drank). I was told, on all the websites I checked and on-line support forums. that I would be able to eat adequately, provided that I took only small meals at a time – preferably, six small meals instead of the usual three a day, I was also advised that it would be helpful to have a steady supply of something like nuts to nibble on between meals. Two different nutritionists suggested I should avoid drinking anything at all at the same time as taking my meals, and not to drink anything fizzy – no  carbonated drinks (eg, coke, or mixers), and no beer.  I was also warned that initially at least, there would have to be a gradual adjustment to eating at all – starting with liquid foods, going on to semi-liquids like smoothies, progressing slowly to soft foods, and taking time to get to the full range of conventional solids.

In addition, the standard advice is that after a gastrectomy, there is a real risk of something called the dreaded “dumping” syndrome if ever I ate too much, or too quickly.

In practice, it’s been much easier than that.

The first surprise was that the first week after surgery was even harsher tha expected. Instead of starting on a liquid diet, I was on nothing at all – “nil by mouth”. I was allowed not even water: the closest I could get, was a wet sponge to dampen my lips. Later, earnest entreaties got me permission to take some water into my mouth, provided that I spat it out without swallowing.  However, once I was allowed to start drinking from the eighth day, to my surprise I was told that I could immediately begin eating “soft” foods – and that did not mean semi-liquids, but included things like pasta, a bean and tuna casserole, mashed potatoes and scrambled eggs.

After returning home on the tenth day following surgery, I initially avoided things like toast and roast potatoes, but  it didn’t take long before I was eating the full range of foods.  I started out trying scrupulously to stick to the recommended six small meals a day, but soon found this to be impractical. Instead, on the basis that my usual breakfast and supper are in any case small meals, all I did was adjust my midday lunch, eating half at lunch time, and the rest at mid-afternoon.

I started out avoiding all drinks together with meals, and avoiding fizzy drinks completely. In time however, I found that this precaution was unnecessary. As long as I drink slowly and not too much at a time, I now find that I can easily take any fizzy drinks I like, and also enjoy a drink with meals.  With time, I have even found that on occasion I can eat quite a substantial meal at a time. Although when at home I divide my usual meal into two portions, when away from home and this is not feasible, I can eat something close to a conventional full portion (but still avoid having three courses).

I have also been fortunate in never having experienced anything like the dreaded “dumping” syndrome.  The only problem I’ve yet experienced on the rare occasions when I’ve eaten more than I can cope with, has been a lttle mild discomfort. All I’ve needed to at those times, has been to lie down  and rest for just a few minutes (no more) and that has invariably cleared it.

Other than the small adjustment I’ve made to eating, I have continued with daily imatinib tablets (a form of oral chemotherapy, taken with my breakfast) to guard against a recurrence. Because of the sheer size of my tumour (26cm x 19cm), I’ve been told I will likely remain on the medication for life, Here too, I’ve been fortunate. Some people have difficulty just tolerating the drug, others experience some nasty side -effects. I’ve never had any difficulty taking it, and although I do have a range of side-effects, these are fairly mild and do not particularly interfere with my daily routine.

So, my experience has been quite different to the warnings given in the relevant websites (GIST SupportUK and others). Does this imply that the standard information is flawed – or am I just an “anomaly”, as one respected GIST colleague has said to me? I don’t know – but I do suggest that for anyone else awaiting a gastrectomy, take note of the standard advice, make all the preparations and adjustments recommended.  Understand though, that we all respond differently to surgery and to medicaion. Your experience may turn out to be a pleasant surprise, as it has been to me,.


The Myth of “Cancer”: Big Fleas, and Littler Fleas.

Big fleas have little fleas
upon their backs to bite ’em.
And little fleas have littler fleas
… and so, ad infinitum

-Ogden Nash

This is not to suggest that “cancer” does not exist – obviously it does, as I know very well from personal experience. However, it is a myth that “cancer” exists as a single syndrome.  A few weeks ago, I read a newspaper opinion piece by Simon Jenkins, arguing precisely this point: we should stop talking about “cancer” as a generic, and instead speak of a particular cancer.

The more I learn about cancer, with particular reference to my own variant, a GIST (GastroIintestinal Stromal Tumour), the more I am reminded of the above verse by Ogden Nash. Just as “big fleas” have “little fleas”, so “cancer” is an umbrella term for a range of sub-types: carcinomas, lymphomas, and more. Then just as “little fleas” have “littler fleas”, so these divisions in turn have smaller sub-divisions: sarcomas for instance, which I know best, include GISTs, but also bone sarcomas and other soft-tissue sarcomas.  As for “ad infinitum”, GISTs too have a range of variants, based on the specific mutations, such as the c-kit mutations Exon 11 (mine), Exon 9, Exon 13, Exon 17.  In addition, there are a range of mutations to the PDGFRA gene, collectively known as “wild type”, because they are not so easily classified, But this term is itself misleading, because “wild type” is not a single GIST type, but an umbrella term of its own.

“…… and so, ad infinitum”.

Can we now stop thinking in terms of “cancer”, and be more specific with our language?