D-Day: Defying Definition by Diagnoses Seven Years On
Seven years ago today, I was diagnosed with a form of Blood Cancer that has tried to destroy my identity and define who I am. Today, on my personal D…
lymphoma
Lymph nodes are where lymphoma arrises. You can read more about Lymphoma on this site and also at Blood Cancer UK or LLS
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…
Results of LLS Study re: T Cell Response to Covid Vaccines & Antibody Response to 3rd Shot Among Blood Cancer Patients
The Leukemia & Lymphoma Society (LLS) has published the results of its Patient Registry study measuring (i) T cell responses to the Covid mRNA vac…
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 …
Five years of living with blood cancer uncertainty: No longer desolate. The battle between hope and reality
Another year has passed. Today is the anniversary, not of my actual diagnosis with blood cancer (that came 22 long days later), but rather the day I b…
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…
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…
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. …
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…
Is COVID19 risk to blood cancer patients now at all time high?
Blood cancer patients made up 1 in 20 of all deaths caused by COVID19 between October and December 2021. This was twice as high a proportion of COVID1…
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…
UK NHS admits priority PCR error. Some kits sent out to CLL patients missed off. Hundreds have missed out on treatment referrals
Until very recently the NHS was denying that there had been any problems with identifying those at highest risk of COVID19 in order to offer them prio…
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 …
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…
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…
The dreaded cancer diagnosis. My Non Hodgkins Lymphoma story
When I was diagnosed in 2013, I was devastated beyond anything I could’ve imagined. My future just disappeared. I didn’t feel well, I was losing weigh…
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 …
The New Big Picture: #thisisbloodcancer
Piecing your life back together after a cancer diagnosis. Blood Cancer Uncensored is pleased to support the international #thisisbloodcancer campaign.…
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…
How do you recover from an acute and aggressive blood cancer?
Let’s see how this goes then! Hi, welcome, thanks for coming, I’m El and I’m here to share my cancer story, my recovery and all the bits in betw…
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…
Can Intravenous Vitamin C cure my blood cancer? An approach to supplements and healthy eating
I was recently asked what I thought of high dose vitamin C infusions. The lady who asked explained how frustrating it was to just watch and wait rathe…
How to make sense of your blood test results – a CLL Society Webinar
Our friends and partners at the CLL Society has put on this excellent webinar to help you decode your blood results. Although it is targeted at CLL pa…
Starting on SCIG (the subcutaneous form of IVIG)
After over a year without my IvIG because it was deemed too risky for me to go into clinic (due to COVID19) finally it’s been possible to get on a hom…
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…
Leukemia, lymphoma or both? The curious case of CLL and SLL
One type of blood cancer that seems to cause a lot of confusion has two names. For more than twenty years what was once thought to be two different diseases has been considered as one. And to make matters worse this disease is both a leukemia and a type of non Hodgkins lymphoma (NHL). No wonder it gets confusing! Some people even think the doctor told them they have four different diseases (Leukemia, Lymphoma, CLL and SLL).
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.
FCR Diary – Cycle 4 to 6 and my reflections
This post concludes my FCR chemotherapy treatment diary from two years ago. It is a warts and all story, and if you decide to read it please re…
FCR Diary – Home at last and Cycle Three
This is a continuation of my FCR diary from two years ago. If you haven't read the previous articles here they are: The Day Leukaemia Changed My Lif…
FCR diary – Cycle 2 as an Inpatient
Today we continue publishing my two year old treatment diary. Please remember these posts come with a health warning. My experience will not be your e…
FCR Treatment Diary – an unexpected hospital admission
This is a continuation of a warts and all diary of my FCR treatment which happened two years ago and is now being published on the open web for the fi…
FCR Treatment Diary – Gratefulness during Cycle One
Two years ago this week I started chemotherapy as part of the FLAIR trial. Here I share my diary from that time. Please turn away if you are the sort …
FCR Chemotherapy diary – Treatment Looms
A friendly warning message As I explained yesterday, I am two years out this week from starting FCR chemotherapy. Spoiler alert: the treatment worked …
Two years ago I started FCR Chemotherapy
This week marks the two year anniversary of me starting FCR chemotherapy. The FCR stands for Fludarabine, Cyclophosphamide and Rituximab. This is stil…
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…
Interview with Non-Hodgkin’s Lymphoma Surivor Sharon Edwards
Told by doctors she was going to die, Sharon Edwards has survived ten years following a diagnosis of high grade Non-Hodgkin's Lymphoma. Her type of DLBL was aggressive, and needed aggressive treatment. Sharon shares her experiences with us in this interview.
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.
Clonal evolution for dummies
In this Blood Cancer for Dummies article the focus is on clonal evolution which is the process by which cancer cells can acquire resistance to treatme…
Dealing with the threefold tyranny of a damaged immune system (Infections, Inflammation, Fatigue)
What can we do when cancer and chemo have led to a trail of destruction in our immune systems?
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…
Monoclonal antibodies for dummies
We recently did an antibodies for dummies post. You might well ask why "monoclonal" antibodies gets its own dummy feature write up. That would be like…
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…
Ibrutinib and BTK inhibitors for dummies
Ibrutinib is a relatively new and revolutionary drug that has changed the landscape for treating CLL . For many people, it might be the only leukemia …
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 …
Mutated and unmutated CLL for dummies
When told I had chronic lymphocytic leukemia (CLL) four years ago, all I heard was "leukemia". Google soon became my best friend and worst enemy. I ju…
FISH testing and chromosomes for dummies
I am betting most of us had a blood cancer tabula rasa at diagnosis, that is, our knowledge of blood cancer was a blank slate. When told I had CLL, al…
“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…
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…
Lymphoma Clinical Update
ASCO had 853 Lymphoma abstracts! We do have a link to all of them but here you will find some key highlights. This page also contains entry level, int…
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…
Chronic Lymphocytic Leukemia (CLL) clinical update
Welcome to this list of videos and helpful documents that you may want to work through if you would like an update on what is new in the world of trea…
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 …