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…
CLL
This is the abbreviated name for Chronic Lymphocytic Lukaemia. This type of blood cancer is the most common adult form of Leukaemia. But it is also a type of non-Hodgkins lymphoma and if found only in lymph nodes it has another name – small lymphocytic lymphoma (SLL). For more information see the links below or Blood Cancer UK, Patient Power and CLL Society pages.
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…
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…
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…
I Live Here Now
For thirty-four years I lived on the south coast of England, about half a mile from the sea, with my husband Nick. It was where we brought up our thre…
Remembering Tom Henry: Pharmacist, CLL Patient, Advocate, Spouse, Father, and Friend one year later
February 9th, 2022 is a day many of us involved in the friendly supportive weekly Zoom meetings will recall. The day we learned our CLL advocate champ…
Diary of a Covid Test
Thursday Dec 15th - Freezing cold through to the bone, couldn’t get warm went to bed dressed for the Arctic. Negative Monday 19th - Hubby felt ill wi…
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…
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…
CLL / SLL Treatment Side Effects Roundtable Discussion with Friends
This is an excellent video presentation produced by fellow CLL patient Michele Nadeem-Baker of Patient Power for The Patient Story and also group expe…
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 …
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…
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…
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…
My Covid Journey
Many people with blood cancer talk about belonging to a club they never wanted to join. Last week I joined another unwanted club when I tested positiv…
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…
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 …
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 …
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…
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…
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…
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…
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…
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…
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…
What is MRD and what significance does it have for me–CLL treatment reflections
Minimal Residual Disease or MRD is a common term used in CLL treatment and it can be tested from bone marrow and/or blood. It is often determined by a…
Treatment Diary Part 2 Encouraging Signs: Obinutuzumab and Venetoclax
Spoiler alert - it's working!! This is an unashamedly encouraging post, because that's my reality. In the third month of this year long treatment regi…
Treatment Diary Part 1 ….. and so it begins: Venetoclax and Obinituzimab
"So it looks like it's treatment time" was the message I sent to family and close friends following my video consultation with my consultant at the en…
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).
The Art of Being
Finding a way through Anxiety I have a Being Chair, also known as a reading/praying/napping/eating breakfast, watching-the-world-go-by chair. It's a g…
Ibrutinib and Venetoclax Together in CLL
Blood Cancer Uncensored is honoured to have been selected as a partner site to the CLL Pharmacist, and is delighted to welcome their founder Tom Henry…
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.
Venetoclax and obinutuzumab funded in England by NICE, acalabrutinib licensed- the end of FCR chemotherapy for CLL?
Today NICE announced that they have agreed to fund Venetocolax plus obinutuzamab for all first line patients with CLL who want to take it in England. …
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…
The future of CLL treatment – time limited combination treatments?
What is your goal for treatment? Getting rid of as much CLL as possible and having a long remission? Or containing the CLL and putting it into reverse for a long time?
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.
What is Duvelisib?
Tom Henry is the CLL Parmacist, and one of our authors. Join him as he introduces us to Duvelisib.
Introducing Tom Henry the CLL Pharmacist
It is our great honour to welcome the seventh member of the writing team here at Blood Cancer Uncensored: Tom Henry who is a specialist pharmacist, a …
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…
Where would we be without family and friends?
This article was originally published in late September 2019 As I sit here in a little slice of paradise thanks to the largesse of a much loved friend…
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?
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…
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.…
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…
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…
Brian Koffman’s spiritual and scientific journey through an aggressive blood cancer
Dr Brian Koffman is a modern day pioneer, married to Patty who is the co-founder with him of perhaps one of the most remarkable patient groups around …
A blood cancer tsunami hit me three years ago today
I wake this morning feeling very sober. But also very glad to be alive. Mixed motions for sure. You could even say that I was "sorrowful yet always re…
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…
CLL Society (Chronic Lymphocytic Leukaemia)
The CLL Society was founded by doctor turned patient, Dr Brian Koffman and his wife Patricia Koffman. He has dedicated himself to teaching and helping…