Six years of living with blood cancer
Today marks the day when, six years ago, my life changed forever as I was diagnosed with blood cancer. That night I experienced the first of many sle…
Corona Hope
Lockdown has been particularly hard for patients with Blood Cancer. We are considered the highest risk group of all for complications from COVID19. So in the UK we have been strongly advised not to leave our homes at all to “shield” us. Blood Cancer experts in other countries have also advised extreme caution. In this series we aim to share some hope and joy, whilst recognising it has been really tough for many of us.
When Covid finally caught me
On April 21 the unthinkable and yet perhaps inevitable happened. I had worsening of my asthma and what felt like severe hay fever. After a spell in th…
Evusheld: UK parliament debates our petiton
In March 2022 I started a petition on the parliament website urging the rapid role out of this life saving medicine. This week the petiton was debated…
Compassion fatigue, the Saviour complex and Benevolent detachment
How to share one another's burdens without carrying them First posted on Adrian's Christian Blog. Whilst it does include some references to Christian…
UK: 1 in 22 COVID deaths are now in people with blood cancer despite shielding and antivirals. 1/63 of all Blood Cancer patients have died from COVID.
How many more deaths will it take before the government finally buys Evusheld to protect immune compromised patients, and makes it much easier to get …
Could YOU help explain the plight of blood cancer patients feeling unsafe and unable to get the treatments they want?
We want to hear your stories. Sadly we are even hearing of people who tried and failed to get preventative COVID19 treatments, or the antivirals for w…
Astra Zeneca blasts UK government’s “commercially sensitive” Evusheld excuses as 1 in 13 Brits have COVID19
Ministers continue make excuses on a regular basis that they cannot discuss any negotiations that may or may not be going on with the maker of EVUSHEL…
Sign our petition to fund Evusheld for blood cancer and other causes of immune compromise. These preventative antibodies massively reduce the risk of Covid19 hospitalisations and death
We were elated at the approval of a treatment which provides a similar preventative shield as vaccines for those who don't make their own antibodies. …
Astra Zeneca’s Evusheld preventative COVID19 Monoclonal Antibody injection licensed in UK. But so far the NHS refuses to pay for it!
Finally many months after the USA, the UK regulator has approved this product designed for patients like me with blood cancer and other causes of immu…
UK NHS sends out another batch of Covid19 treatment emails
Many of us have been waiting MONTHS for this and have sent countless emails informing everyone we can think of that we were somehow left off the list …
CLL Canada Update: Vaccines, masks, getting the balance right between avoiding risk and reclaiming our lives
We have a bumper pack article here full of goodies from our CLL Canada partners. Read and enjoy wherever you are from as one of the things we believe …
Thrown to the wolves by the UK: the end of all COVID protections and no more tests except for those on the new at greatest risk list #DoInotmatter #BloodCancer #immunocompromised
Today I feel betrayed. I understand the desire to save money and get back to normal life. But we, the 500,000 who are immune compromised due to blood …
International COVID-19 Blood Cancer Coalition (ICBCC). Patient Impact and Recommendations. Protecting immunocompromised blood cancer patients during the COVID-19 pandemic
Blood Cancer Uncensored was privileged to be a part of project to outline the impact of the pandemic on people with blood cancer and other immune comp…
On the end of COVID Restrictions: the CLL patient’s dilemma by Raymond Vles, CLL Canada Board Chair
With the steady progress of COVID vaccination, restrictions are being lifted and rules are being eased; gradually in some places, more rapidly in othe…
Blood Cancer Uncensored in the iNews
In the last few days it has been our honour to be quoted twice in the iNews site which also exists as a newspaper. Many thanks to Paul Gallagher for w…
UK: PCR requirement for COVID-19 monoclonal antibodies and antivirals to be dropped but patients now being refused treatment for not being sick enough yet
Government backs down after patient community complaints reported by Blood Cancer Uncensored and iNews.co.uk but new barrier to life saving treatment …
Video update on how to protect ourselves from omicron and get monoclonal antibodies
Video update on how to protect ourselves from omicron. If you are in the UK and havent got your priority PCR test at home yet call 119 and ask them to…
Navigating UK NHS chaos regarding COVID-19 monoclonal antibody treatments
The UK roll out of community COVID-19 treatment with monoclonal antibodies is failing some blood cancer and other immune compromised patients. NHS Eng…
Covid19 positive? How to get life saving treatments quickly. And how to avoid catching omicron in the first place.
Antivirals and monoclonal antibodies are life saving, game changing treatments, especially for those of us with blood cancer and hence a disordered im…
Regeneron COVID Monoclonal antibodies finally approved in the UK. AZ antibodies prevented ALL severe infections and deaths!
It only took a year after the USA's FDA, but the UK's MHRA has finally approved the Regeneron monoclonal antibody cocktail! There is also great news a…
How to persuade your British GP to give your teenagers COVID-19 vaccine to protect you
This is another crucial update to our “warn, test, protect and treat” four point plan to stay alive as this virus continues to rage around us and gove…
Four steps to save the lives of blood cancer patients from COVID-19: Warn, Test, Protect, Treat
I’m going to keep this post really simple. There’s a longer article that explains it in more detail. But I offer here a four step plan that can save o…
Lies about Vaccines and the Immune Deficient: Open Letter to UK Government, MHRA and APBI code of practice authority
The sad thing about this outrageous false Government communication scandal is that an opportunity was squandered to make the important point that immu…
THE most dangerous time for blood cancer patients as only 20% told vaccines may not work for them
The plight and high level of risk faced by the hundreds of thousands of people with blood cancer, and others who are immune compromised, has been scan…
Convalescent plasma improves survival in blood cancer patients with COVID-19
We learnt recently of data that shows a man made and hence purer and stronger antibody cocktail can save lives in patients who do not make antibodies …
It is NOW time to give monoclonal antibodies to ALL blood cancer patients who don’t respond to vaccines
This morning the RECOVERY trial reported crucial and encouraging results. It shows that the Regeneron man-made monoclonal antibodies against COVID19 s…
Why and how to get antibody tested after COVID19 vaccines
Don't tell me what percentage of blood cancer patients the vaccine works for. Tell me if it has worked for me! How do I get tested?
Which test do I need? What do the results mean?
Which test do I need? What do the results mean?
UK shielding not over yet for blood cancer patients
This is just a short article to make the point that although the headline is that shielding "ends" on March 31 the truth is we are far from safe yet a…
Two more vaccines successful in clinical trials – working in UK, South African, and South American variants. Some data in immune compromised
Yesterday we had some more great news on the vaccine front. Since all the current vaccines work in a similar way because they use the original COVID19…
Do Covid19 vaccines stop the disease spreading?
Vaccines work by preventing infections altogether or by reducing the severity of disease. But do the new COVID19 vaccines also prevent us from passing…
Are COVID-19 vaccines made from aborted babies? What is HEK293?
No babies were aborted in order to make COVID-19 vaccines. But a human cell line originating from an embryo was used (HEK293). This article briefly explains the science and ethical thinking about the vaccines.
COVID19 infection, antibodies and vaccination – video explanation
Right now 1 in 30 Londoners are infective for COVID19 and the NHS here is in crisis. What do we know about how the body fights this disease. Why do some people end up in hospital? How can a blood saturation monitor help you? What do we know about antibodies?
Why is the UK delaying the second dose of COVID19 vaccines – the evidence explained
The UK Government medical advisors have made a pragmatic decision to delay the second doses of COVID19 vaccines to up to twelve weeks. It is believed that this is better for the whole population. We examine why.
What is the evidence for the use of COVID19 vaccines?
Over the next few articles, I will answer questions about COVID19 vaccines based on their published clinical research. Today: "Do some people get COVID19 despite being vaccinated?"
Volunteering for a monoclonal antibody COVID19 clinical trial
It must be stressed that this is of course still an experimental treatment, although there is clearly a lot of emerging evidence that antibodies are important in fighting COVID19. So there is a reasonable hope that recipients of this treatment like this will most likely experience at least some degree of protection from the COVID19 virus which is not dependent on their own immune system.
Should Blood Cancer Patients take the COVD19 vaccine?
All I want for Christmas is a Covid19 Vaccine. Tomorrow the UK will become the first county to vaccinate members of its population with an authorised and fully-tested vaccine against Coronavirus. Considering most of us had not even heard of coronavirus a year ago this is a remarkable feat of modern science.
Covid vaccine news – what it means for us
Yesterday the world was given great news. This was perhaps the most positive pieces of news since the pandemic began. Understandably government figure…
UK government advises all blood cancer patients to stop going out to work or shops
I got an email from the UK government advising a return to a limited form of shielding today. In particular there is strong advice to avoid visiting a…
OXFORD Vaccine Trial Resumes
Earlier in the week it was announced that following an unusual illness arising in one of 30,000 people who have so far taken the Oxford vaccine trial …
Which Medicines Treat COVID-19? – Dexamethasone? Hydroxychloroquine? Antivirals? Monoclonal Antibodies?
Cut through the controversy and find out which medicines have been proven to work in Covid19 in randomised control trials.
Staying safe from Covid19 as lockdown eases
"I do not think many of us will be going clubbing just yet" How to stay safe as COVID lockdowns ease.
No Second wave? Long-term COVID19 herd immunity already? Science suggests variable and long-lasting coronavirus protection.
Previously we discussed the leaked news that the Oxford vaccine is producing both an antibody response and a T-cell response. This we noted was …
Will the Oxford vaccine work? Initial results in context – the beginning of the end for COVID-19?
"Oxford vaccine causes double defence against COVID-19" was the overnight breaking news in the Telegraph. I cannot confirm or deny this leak. But this article aims to put it in context.
Revolutionary Plug and Play Vaccine Platform
There is a phenomenal amount of work going on right now to find a vaccine for COVID-19. No fewer than 200 vaccine candidates are being looked at. Sixt…
How a vaccine works
This is the next post in our Corona Hope series. If you have missed the previous articles you may want read them before continuing. The goal here is t…
Antibodies (immunoglobulins) for dummies
Wait, what do antibodies have to do with blood cancer? A lot as it turns out. Many blood cancers are of a type of lymphocyte called a b-cell. The prim…
A hospital admission in the COVID19 era
Just over three weeks ago I woke in the night with symptoms of severe asthma along with itchy skin and nose. For some reason health crises often seem …
COVID-19 and Blood Cancer an Expert’s View – with Prof Peter Hillmen
Watch this video if you need a bit of hope from one of the World's Leading Experts in CLL. Just how risky is catching COVID19 for blood cancer patient…
Covid for dummies – part deux
Virus for dummies part 1 was introductory in nature and talked a lot about viruses in general, less about covid-19 (covid) specifically . For those wh…
Matching Socks
I have many flaws. Perhaps some would call my problem a little touch of OCD. I spend a lot of time on something, trying to get it "just right", and th…
Viruses for dummies – corona edition
"Know yourself, know your enemy and you shall win a hundred battles without loss" was one of the tenets of Sun Tzu's Chinese military treatise, "The A…
What is Passive vaccination? Does Convalescent Plasma work? What is IVIG?
Passive Vaccination How can we help the immune system know how to fight the virus it has never seen before? You might have already read my post …
Could your blood save a life?
Three ways to save a life: 1. Donate blood. 2. Sign up to the Stem Cell Register. 3. Donate your Covid19 antibodies. #bloodcancer #kindnessofstrangers
Shielders advised they are safe to go out once a day
Our lockdown has been extreme. So the news that from tomorrow we might be OK to think about going out for a walk once a day is in many ways welcome. A…
Adrian’s First Walk in over Ten Weeks Shielding
So following yesterday’s change to the advice (and it was always only advice!) we decided to have a go at walking out. It was a bit scary. But we deci…
How the immune system works
Blood cancer is a disease of the immune system. The very cells in the body that are meant to protect us from invaders have turned against us. And the …
Corona Hope: Oxford Vaccine & things WE can do
$1 billion gamble? Or the miracle we are all waiting for? We are in a war more deadly than anything else in most of our lifetimes. Arguably the effect…
Blood cancer corona-crunch worsens?
Is self isolating getting harder for you as time goes by? Almost 12 weeks ago in a mammoth computer operation the UK government identified a big group…
High risk for Blood Cancer patients with COVID19
This post has the latest data which demonstrates the high risk for complications from COVID-19 of all patients with blood cancer. It is quite discoura…
Thankful for the UK government during Covid19
I have read one too many negative comment about the UK government and their attempts to handle this unprecedented crisis. It’s surely the biggest worl…
Over 1 in 1000 New Yorkers have died of COVID19 so far
What would it look like if this happened elsewhere? I am not trying to be alarmist here. But here are some facts. If you look at the entire popu…
How to work from home or self-isolate
Many people are suddenly being told they have to work from home or self-isolate thanks to coronavirus. Sometimes this is because they are sick i…