VIDEO: The truth about living with Myeloma, a type of Blood Cancer
Our friends at Blood Cancer UK (the leading British blood cancer charity) have produced a series of video discussions and made them available on YouTu…
myeloma
Plasma cells are the source of myeloma. You can read more about Myeloma on this site and also at Blood Cancer UK or LLS
You are NOT alone. Join 1000 others like you affected by blood cancer
Blood Cancer Uncensored is not just a global website. We are also a Facebook forum which has just reached its 1000th member! You are most welcome to …
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…
Lots of timely CLL and Myeloma information coming in later April
While we are still in "virtual" event mode (in-person events hopefully coming soon), Patient Power is offering three FREE online events before the end…
The Evusheld Fourth Vaccine Conundrum
When I got my first dose of Evusheld on February 15th here in Western New York State, the talk about the 2nd booster was a very quiet buzz around here…
iNews reports on Astra Zeneca’s criticism of the UK government for not negotiating to buy Evusheld
The staggering news that the UK government has not even bothered to open negotiations with Astra Zeneca about Evusheld is covered in the iNews this mo…
Andrew Schorr’s latest video update
We are delighted to welcome to Blood Cancer Uncensored our friends Andrew and Esther Schorr as our latest authors. Today we share Andrew's latest frie…
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. …
Myeloma Patient Survey from Patient Power
Our friends over at patient power want to hear from you if you have Myeloma. This short questionnaire will help other patients, and wont take you long…
Paid market research for UK patients who can reach London
Here is a new opportunity for those in the blood cancer community with a diagnosis of AML, CLL, DLBL, or multiple myeloma who would be willing to trav…
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…
Medical Market Research – love it or hate it? A bit like marmite or vegemite
Here in the UK in a masterpiece of marketing genius the makers of Marmite (similar to Vegemite) created the slogan "You either love it or hate it". In…
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…
UPDATE on UK Monoclonal antibody roll out – dangerous misinformation, denial and how to avoid deadly delay
I thought I would share an update on my previous post on navigating NHS chaos in regard to getting the monoclonal antibodies and antivirals. This is b…
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…
Vague symptoms – apparently unrelated and hard to diagnose: ThisIsBloodCancer
How do you know if YOU have blood cancer? On the last day of Blood Cancer Awareness month let's think about this question together. With many other ty…
Emotional distress and anxiety – how to get help #ThisIsBloodCancer
Whether you are in watch and wait, in the middle of aggressive treatment, or finished treatment and out the other side with a remission, then anxiety …
Acute or chronic which is worse? What does AML ALL CLL CML NHL DLBL mean?
When you walk out of that first diagnosis appointment all some people remember is the word "lymphoma", "leukemia" or "myeloma". But to understand what…
What Polio vaccines can teach us about COVID-19
In 1949, I contracted polio. I have lived with the after-effects all of my life. When I was in the 2nd grade, I got the polio vaccine because there wa…
USA representatives propose act to fund oral anticancer medicines the same way as IV chemotherapy
The USA currently has a funding system that treats IV cancer medications differently to oral ones. This can lead to huge differences in co-pays. In th…
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…
Just how bad is my immune system? How immunocompromised am I?
Blood tests which predict Immune System function and what they mean Individual medical advice is required to adapt these general comments to your clin…
How well do vaccines work in blood cancer patients? The evidence for Chronic Lymphocytic Leukemia (CLL)
How well do vaccines work in patients with blood cancer? This study looked at treated and untreated patients with CLL to assess vaccine response rates.
Top Blood Cancer Uncensored Posts of 2020
Blood Cancer Uncensored was born during the first lockdown. Many of these posts outline reliable information about COVID19 in an easy to understand style.
What can I do to live longer with blood cancer?
What can we do to improve our chances of living for many years after a blood cancer diagnosis? Covers accepting treatment, healthy living, and mental health.
How long will I live with blood cancer?
How long will I live with blood cancer? What is the survival rate? How can we handle such frightening questions? A hope filled approach.
Diagnosing and Understanding Cancer related fatigue
A while back I found a great article on fatigue aimed at doctors but understandable to I would expect most of us who read this site. It’s all about ca…
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.
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…
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 …
“I’m new here” – where to start, how to donate or get help, use our search engine
What is blood cancer? Why Uncensored? Can my blood save a life? Where can I find some hope?
Cell biology and blood cancer for dummies
In the interest of full disclosure, I have no science background. To the contrary, science was my worst subject in high school. So when I was diagnose…
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…
Fatigue – the crushing of energy
Fatigue. It’s a normal sounding word. And when we use it to describe the profound limitations sometimes caused by blood cancer people say things like …
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…
Introducing Blood Cancer for Dummies
I was invited to share my dummy posts here on Blood Cancer Uncensored so here goes. I am happy that some folks find the dummy posts helpful. I did not…
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
Daily Blood Cancer Uncensored News
The latest blood cancer news from across the Internet. Updated daily. Also includes some COVID19 updates.…
Join a Blood Cancer Support Group
You do not have to be alone with your blood cancer. There are ways you can connect with others and get their advice encouragement and support. Some op…
Multiple Myeloma Clinical update
ASCO had 300 Multiple Myeloma abstracts! Fortunately we have found some easily understandable video updates. This page includes entry level to advance…
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…
Super Survivor Andrew Schorr beat two blood cancers and is still fighting for patients
Grabbed some time with Andrew Schorr from Patient Power. Was great to hear about how he was one of the first cohort of patients to be treated with FCR…
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…
Why the struggle is what really counts
Sometimes when people ask me how I am I don't quite know what to say. The truthful answer might be one word "struggling". Or even "terrible". I often …
The tyranny of the positive
When I was struggling the most from an emotional perspective with my illness to be honest I found it hard to talk about how I was feeling. Nobody actu…
Why Uncensored?
Some people have asked how we came up with the title for this site. The first two words are obvious since we are talking about blood cancer it makes s…
Join the conversation
You can connect with us in a variety of ways. Our Twitter stream is in the sidebar Blood Cancer Uncensored on Facebook Email subscriptions…
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…
What is blood cancer?
Blood cancer is caused when something goes wrong with the development of your blood cells. It can affect your blood, bone marrow or lymph nodes. It should be considered a disease of the immune system since in the vast majority of cases the cells that are affected are the white blood cells which fight off infections.
Blood Cancer UK
The UK’s leading blood cancer charity. Since they were founded in 1960, Blood Cancer UK has spent £500 million on blood cancer research to improve tre…
Anxious Moments
What to do when you are in a moment of feeling totally overwhelmed. Interview with Naomi and Mark from the spiritual Soultime app. See the f…
Do you need some soul time?
Spiritual meditation will help you calm your heart. Adrian interviewed Naomi Trenier and Mark Wagner from the Soultime app. Both video and audio are a…
Write for us?
Blood Cancer Uncensored is produced by volunteers who are themselves patients or their families. We develop new material, and share fantastic content …