Grief is not just because someone has died. Grief also encompasses non-death losses.
When we are diagnosed with a chronic disease such as many of the blood cancers the emotions we have can be very mixed. The word cancer is not often r…
blood cancer
Happy Birthday! Happy Anniversary!
A year ago I was celebrating my birthday totally oblivious of a ticking time bomb. Yes I had an enlarged spleen and my haematologist sent me for a CT …
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…
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…
“HOW LONG DO I HAVE TO LIVE?” Searching for a prognosis
I was so very ill when I was diagnosed with cancer in November 2022. At the first hospital, I was diagnosed with colon cancer along with some sort of …
When therapy is not enough.
In 2006 after a year in India I was diagnosed with CLL. Probably had it since1999 when I started with tooth abscesses and recurrent UTI s. Told I wou…
This is blood cancer awareness month. How to get diagnosed.
Be your own patient advocate! I was “too busy” with work and “too busy” being a caregiver to find another Primary. I kept going back to the same docto…
Market Research on Car T Therapy–a paid study for USA residents from Health Union
This opportunity was sent to us by our friends at Social Health Network Blood-Cancer.com is conducting a market research study on behalf of a sponsor,…
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…
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…
Covid Realities – was it real??
Was it real? Three years on after the beginning of the pandemic and I am still living in what seems to be a surreal nightmare. I seem to have lost thr…
A New Survey From Our Partners at Health Union for USA Blood Cancer Patients
Health Union is conducting the in America survey to better understand the impact and management of chronic health conditions. Survey responses also he…
Ask the Doc 2023 event with Doctor Mustafa Allergy/Immunology from Rochester Regional Health System
We were blessed to have Dr. Shahzad Mustafa again from Rochester Regional Head of Allergy and Immunology in Rochester, NY with us on January 21st. Alw…
Raising the Voices of Patients
Andrew and I are still active in the work that Patient Power (patientpower.info) does to help educate and empower cancer patients and their families a…
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 …
Paid Research Opportunity for United Kingdom Residents from Evolve Fieldwork for Non-Hodgkin’s lymphoma patients
This time we have an opportunity from Evolve Fieldwork Limited Ltd. for a short (30-minute) survey for United Kingdom folks for 35 GBP compensation fo…
Paid Survey Offer from Global Patients for CLL/SLL Patients in USA
Thank you to Miryam González of Global Patients for sharing this paid research opportunity! Please click this link for this particular study (and send…
A Personal Account of Massage and CLL
Please note: this is an opinion piece, not an endorsement for any particular type of activity (see editor's note, below). After two years of lethargy …
Blood Cancer Approved Summer Activities
As summer is here now and for some of us, this is the only time we can get out and enjoy better weather, I have compiled a list of safe activities for…
You Have Three Brains!
Yes, it's true! I had the wonderful opportunity to speak, with Jana my partner and wife, with the Dream Factory Community, founded and lead by Nancy C…
A Complicated Web
Thoughts on what is and what isn’t CLL related. After 12 years of watch and wait I started treatment in 2017. I had Ibrutinib first and transferred to…
What to Look for After “Watch and Wait” for CLL Patients
Andrew and I have been through "watch and wait together" and he's got a few words of experience for those who want to know what the potential signs to…
On World Blood Cancer Day – ITN video “This is Blood Cancer”
Simon Thomas is a TV sports presenter who's wife sadly died three days after a diagnosis of blood cancer. He presents this informative and engaging pr…
VIDEO: Learning to LIVE safely with COVID – including an outdoor wedding
Catch up with Andrew Schorr's latest videos on how he and Esther are managing to enjoy life whilst still being cautious because of his two blood cance…
CML: I am the world’s longest living Gleevec, TKI, and Kinase Inhibitor survivor
April 12 2022 was my 65th Birthday! I Really Did Beat Those 1995 Terminal Cancer Odds! I celebrate a milestone 65th birthday, after being diagnosed wi…
The Passion Behind Heal Mary: A group that is taking cancer and treatment seriously and making medical trial options accessible worldwide
As spring is slowly spreading across the land, I always have hope that flowers and leaves will appear again after a long, dry winter. And it is emergi…
A Heartfelt Tribute to Blood Cancer Champion John Soper by Grandson Preston Norman
This post was shared by Christine Soper and Preston Norman. On January 19th, my grandad, "Poppy", John Wayne Soper, departed this life. He was an unbe…
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…
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…
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…
Andrew & Esther Talk About Advocacy, ASCO, and Humanitarian Efforts
There's great need among cancer patients to self-advocate for the right and best treatment, and there are great organizations out there to support you…
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…
Reflections on Bactine and Skin Care from our friend Seymour Brown
One of the great benefits of our Blood Cancer Group and specifically the weekly Zoom chat is seeing members' personalities come out after getting to k…
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. …
Highlights on Multiple myeloma
This information was up to date at time of publishing. Encapsulated in this article are some good resources to which you can subscribe to get latest i…
Q and A with Immunologist Dr S. Shahzad Mustafa at the Blood Cancer Uncensored weekly Zoom Call
This is a Q and A with Immunologist Dr S. Shahzad Mustafa at our weekly Zoom Call. We explore issues related to our risk of infections including COVD-…
What does it mean to beat blood cancer? New charity vision statement
One of our favourite charities here at Blood Cancer Uncensoered is Blood Cancer UK. They recently set a group to work on what it means to beat blood c…
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 …
UK: Watch and Wait Research Opportunity
Please let Katie know if you are willing to participate in her research. Limited space! Details below. My name is Katie, and I am doctorate student at…
Had Evusheld? You need a top up dose asap to increase protection against new variants
The FDA has a sensible approach about monoclonal antibodies. There is a recognition that if you can get to a plasma level of antibodies which in a lab…
My Evusheld Experience — I’m just an ordinary person!
I suppose you are wondering what I mean by that title. Well, I'll tell you! Two years ago I cannot even begin to describe how I was spending my time. …
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…
Reflections on the loss of Tom Henry, everyone’s friend
I am really saddened by our loss of Tom. I think of him as "every-man's friend." He was so personable. With so many treatments today for CLL/SLL, I fi…
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 …
The effects of Covid on our life
Rewind to Mid March 2020- we were alerted to this pandemic emerging and actually chose to shield before all the myriad of letters, texts and leaflets …
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…
Rowing My Boat with Grace
As I reflect on another year gone by and my second year working with Blood Cancer Uncensored, I want to draw some conclusions that for me, are persona…
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…
Introducing Blood Cancer Hero Jessica Kuhns and her remarkable son Jaden!
On October 13th, Blood Cancer Uncensored had the opportunity of interviewing Jessica, a positive, energizing lady and her accomplished son Jaden. Jess…
Car T therapy approved by FDA for adults with relapsed or refractory B-cell precursor acute lymphoblastic leukemia (ALL)
This information was current at the time of publishing. The advancement of Car T therapy for the blood cancers is definitely something to keep watchin…
How are myeloproliferative neoplasms (MPNs) made from stem cells? What drives transformation into more aggressive blood cancers?
Today Joy introduces us to a fascinating paper about the way different mutations are involved in the formation of MPNs and their risk of transformatio…
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…
My Journey with CLL – from Sue Marshall #ThisIsBloodCancer
Blood Cancer Uncensored is pleased to support the international #thisisbloodcancer campaign. Please consider sharing your story of what blood cancer m…
Journey to Peace–Cara McLaughlin, a Polycythemia Vera Patient’s Point of View #ThisIsBloodCancer
Meet Cara "Bear" McLaughlin, a mother of four whose life changed completely over five years ago when she was diagnosed with PV, which is one of the MP…
Finding myself and becoming friends with my blood despite Essential Thrombocythemia (ET) and Myelofibrosis (MF) #ThisIsBloodCancer
Here is Debra Kay Patella’s story. She started out with Essential Thrombocythemia (ET) and recently morphed into Myelofibrosis (MF) both…
Diagnosed after looking at my own blood down a microscope – #ThisIsBloodCancer
My cancer story begins in the year 2000 on a sunny day in May. I was in nursing school, in a blood module, looking deep into a slide of my own blood c…
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 …
Cancer free after 107 days of aggressive treatment for AML Nathaniel Nabena rang the bell: #ThisIsBloodCancer
Thank you to all of our readers who supported the campaign to raise the funding needed for Nathaniel. Blood cancer can be very brutal at times. But th…
Blood Cancer Uncensored Wants YOUR Blood Cancer Video or Written Story!
Blood Cancer Uncensored is pleased to support the International #thisisbloodcancer campaign. Please consider sharing your story of what blood cancer m…
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.…
September is Blood Cancer Awareness Month!
Who on this group does not know they have blood cancer? Or that their loved one has it? I realize there are folks on our group who are trying to get i…
Being treated for Acute Myeloid Leukemia during the COVID19 pandemic
Today Blood Cancer Uncensored is delighted to introduce our newest author, writer and "blood cancer recoverer", Jenni Elbourne. Today we share some sa…
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…