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…
Reflections of Safety and Fear
This last week has been the most traumatic since forever. My husband had a cardiac ablation. He developed a pseudo aneurysm of the femoral artery whic…
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 …
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…
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…
Follow up to my first post and the situation in Ukraine
After writing my first post for the Blood Cancer Uncensored website group, I just had to decompress and get out of the house and get fresh air- I am s…
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…
The Hawaiian Prayer for Forgiveness – Ho’oponopono
Many thanks to this powerful and profound community, and especially to Adrian Warnock, for allowing me to be a member and share my thoughts. Adrian re…
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…
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 …
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…
Treatement Diary Part 3 (Obinutuzumab and Venetoclax) – The Good, The Bad and the Unexpected!
It's safe to say that 2022 didn't start in the way that I'd expected, nor did it have the optimism often associated with the coming of a new year. The…
Interview with our newest author, Daniel Junkins, diagnosed with AML in 2017
Adrian Warnock was delighted to interview our latest author. Daniel's life interrupted by a call from the hospital to come immediately to A and E foll…
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…
Brian Koffman pays tribute to Tom Henry as the family set up a memorial fund to continue his legacy of work for blood cancer patients
Today we share another tribute to Tom Henry, the CLL Pharmacist. This one comes from the founder of a USA blood cancer charity which Tom was involved …
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…
Rest in Peace. Tom Henry, The CLL Pharmacist and Patient
I am sorry to report the loss of one of our beloved authors here at blood cancer uncensored, and a regular attender of our weekly zoom call. Tom was a…
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…
UK: CLL paid research opportunity
Evolve Fieldwork have a research project running on Chronic Lymphocytic Leukaemia (CLL). They are specifically looking for patients that are on or hav…
US: paid reseach for ALL patients
We gave been asked to pass on this opportunity for American patients with acute lymoblastic leukeamia. These kinds of surveys help organisations inclu…
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…
Patient Advocate Foundation: Help is on the way for Cancer Patients in the United States
The information in this article was current as of the time of publication I had the opportunity to meet with Anita Reynolds, the Relationship Manager …
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…
Staying Healthy this Winter and Keeping the Immune System in Shape
We can never know too much about the way our bodies behave. Here are some good resources for understanding the human body and the immune system. Also …
Information for our Providers to prove why Blood Cancer Patients with compromised immunity need Monoclonal Antibodies (United States patients)
This information was current as of its publication date. On Blood Cancer Uncensored Saturday, January 1, 2022 weekly meeting, we discussed the frustra…
Christmas Pistachio Pudding Pie
Here's a simple Christmas pie you might even be able to put together today to eat tomorrow. My favorite store Aldi usually has a pie that reminds me o…
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…
Asciminib (Scemblix) STAMP Inhibitor for Certain Chronic Myeloid Leukemia Patients Approved by FDA
This information is current as of the publication date. This news is a result of individuals like you and I participating in a medical drug trial. Thi…
Persistence during a health pandemic and an unexpected blood cancer diagnosis–we are our best advocates when not feeling well!
Introducing blood cancer friend Tamsin Wheatcroft as she shares with us on this video how she learned of her CLL diagnosis. Join the blood cancer supp…
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…
How to process and avoid anxiety with severe illness
Many patients report that they develop anxiety due to a very severe disease. But is this the only cause? In order to reflect on this, I have to go bac…
Compensated Study for a United States male only patient with acute myeloid leukemia for patient experience research-continue reading for specifics of study!
This information is current as of time of publication. Ancora.ai is looking for a male person of color (POC) diagnosed with acute myeloid leukemia to …
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…
Clinical trial opportunity for Myelodysplastic Syndrome (MDS) patients receiving blood transfusions
From time to time Blood Cancer Uncensored is asked to highlight clinical research studies or surveys. Today we are highlighting a survey which might u…
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…
Before and After with Blood Cancer–Lisa McKenna’s story #ThisIsBloodCancer
Who was I before the CLL diagnosis? A fierce Scientist/businesswoman. I owned and operated an Environmental, Health and Safety (EHS) consulting firm i…
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…
Will Regeneron Become More Available in the USA as a Result of the Feds Stepping in on Distribution? #ThisIsBloodCancer
This information was current and correct as of the publish date. A friend sent me this article this morning about Florida and the other states who wer…
Not everything natural is good for you. Don’t reject modern medicines and hope supplements will heal you instead
Supplements vs Medicines Some people believe supplements are “natural” and therefore feel comfortable to take them whilst some of the same peoole are …
What it is like to live with an MPN: MYELOPROLIFERATIVE NEOPLASM #ThisIsBloodCancer
At first when you find out it’s 🔹SHOCKING and 🔹OVERWHELMING.There is 🔹NO CURE as of today. It’s a 🔹CHRONIC slow progre…
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…
Jenni talks about her AML diagnosis, treatment and recovery: #ThisIsBloodCancer Interview
In this video I'm interviewed by Adrian Warnock. We talk about my experience of being diagnosed with Acute Myeloid Leukaemia at age 33, including my t…
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…
Regeneron monoclonal antibodies to the rescue? My Florida experience! #ThisIsBloodCancer
Lisa Wiest explains how having blood cancer made her eager to get injected with COVID19 monoclonal antibodies. Blood Cancer Uncensored is pleased to s…
How My ‘Half-Matched’ Sister Saved My Life: #ThisIsBloodCancer
Receiving a haplo-identical stem cell transplant for leukaemia Blood Cancer Uncensored is pleased to support the international #thisisbloodcancer camp…
Wear Red or Your favorite blood cancer shirt for BCAM!
This is the third event for the month. The challenge is to post a pic of you, or you with your family or friends all wearing a red shirt OR a blood ca…
Meet the Blood Cancer Uncensored Leadership Team: #ThisIsBloodCancer
Who are we? What are we trying to accomplish with the website, Facebook group and Zoom call? Blood Cancer Uncensored is pleased to support the interna…
Radiotherapy – How it works and an unusual case in SLL #ThisIsBloodCancer
Blood Cancer Uncensored is pleased to support the international #thisisbloodcancer campaign. Please consider sharing your story of what blood cancer m…
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…
Remdesivir or Regeneron–What is the Difference and can WE get these life saving Covid 19 treatments?
This is a simple post to explain the difference between these two drugs being used to combat Covid. Gilead Sciences' REMDESIVIR Anti-viral drug used i…
Diets and Cancer – What should/shouldn’t I eat?
A frequent question from blood cancer, and other cancer, patients is about diet and whether there are specific foods they should try to eat or that th…
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…
Survey opportunity for UK Blood Cancer patients.
From time to time we will share survey and research requests from organisations conducting research into blood cancer, where our members may be able t…
Supplements and diets, blood tests showing high lymph count, safe sunscreen, what Coronavirus mutations mean, and best cell photo yet
#1 Get vitamins through what you eat! Here is a video that explains supplements and diet further:Patient Power - Diet and Supplements: What Do CLL Pat…
Out with the Old in with the New
Finding a way through new seasons I'm in a reflective mood. As I write it is a year to the day since we packed up our lives and relocated to the north…
Booster Shot Approved by FDA for Immunocompromised and Organ Transplant Americans…United Kingdom to begin boosters next month!
Here it is folks! I suggest you email or call your oncologist or hematologist to get a letter to prove why you need this booster and schedule the appo…