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Updated: 1 hour 14 min ago

ASH 2018: A Guide to the Latest for Blood-Borne Cancers and More

28 November 2018
The American Society of Hematology (ASH) annual meeting is being held December 1-4, 2018 in San Diego, CA. There is a guide at:

How I Deal With Fatigue

19 November 2018
Short story:
Baking soda works for me.
Back story:
I was diagnosed with CLL in 2006. A few years later the fatigue, which for me included mental fog, kicked in. It was at its worst during my months in treatment. Even in remission I would fold at about 4:00 in the afternoon, after which I was down for the count, making exceptions only for early dinners out. Fatigue seemed to be what was normal for me. I lived that way for a full year after treatment.
Last summer I saw a study from the...

IBRUTINIB - enlarged lymph nodes in neck

15 November 2018
Is there anyone else who has had enlarged lymph nodes in the neck - or elsewhere - when taking Ibrutinib?
My blood tests show Ibrutinib is doing what it is supposed to do, except for the enlarged lymph nodes on my neck. Treatment was interrupted -- I received heavy doses of anti-biotics and corticoids -- and one lymph node removed. After a month my oncologist had me resume Ibrutinib again, this time diminishing the dose from 3 to only one pill. Everything was progressing without problems so I...

Cortisol and CLL

08 November 2018
I just came across a paper "The Response of Leukemic Lymphocytes - A Suggested Role of Transcortin" from the early 70s, and wondered if there'd been any further research - I can't find any from an initial search.
My interest is partially due to the fact that I've experienced a long period of chronic stress, and relatively stable bloods for a couple of years at around 100 FBC, although I'm not expecting the two to be related, I can't help wondering if there's any connection generally, given the...

NCRI - The UK Top living with and beyond cancer research priorities

06 November 2018
By 2030 four million people in the UK will be living with the long-term consequences of cancer, but currently there is very little research on the problems they face and how these can be tackled. To help them live better lives, more focused research is needed.
To determine priorities for research that will help people live better with and beyond cancer, NCRI partnered with the James Lind Alliance on a Priority Setting Partnership. The two-year project involved two UK-wide surveys which attracted...

U-MRD6 is the new MRD-

02 November 2018
U-MRD6 = Undetectable-Minimal Residual Disease (U-MRD6) (10-6 sensitivity)


The majority of pts with BM U-MRD4 after first-line FCR were MRD6+ and these patients had shorter PFS; MRD analysis with a more sensitive assay may therefore more accurately assign prognosis. Not accounting for sensitivity, a higher proportion of BM than PBMC samples were MRD+. Plasma analysis was uninformative as all pts MRD+ in plasma were MRD+ in simultaneous BM or PBMC samples.


EUPATI Guidance for Patient Involvement in Medicines Research and Development (R&D); Guidance for Pharmaceutical Industry-Led Medicines R&D

10 October 2018
The importance and merits of greater patient involvement in medicines research and development (R&D) are commonly acknowledged and are thought to offer benefits for all involved parties. It helps to improve discovery, development, and evaluation of new effective medicines, based on the collaborative identification and understanding of unmet needs, research priorities, optimization of clinical study design, outcome measures, and endpoint development. It can result in increased transparency, trust...

How two 1990s discoveries have led to (some) cured cancers, and a Nobel Prize

06 October 2018
"This year?s award of the Nobel Prize for Physiology and Medicine to James P. Allison and Tasuku Honjo, for their work in the early 1990s on immune checkpoint proteins CTLA4 and PD1, is a fitting recognition of how their work has led to a seismic shift in the way we treat cancer.

In a remarkably short time, drugs that inhibit these immune checkpoints (or immune brakes) have transformed the practice of clinical oncology."

More on checkpoint inhibitors by Craig Gedye, Oncologist and Senior...

Flu and Aspergillosis link in 1/3 health patients?

05 October 2018
This was looking at heakthy people with flu, obviously the risk is far higher in immunocompromised patients... more reasons to get your flu vaccine.
In the study, Mitsuru Toda, MS, PhD, from the US Centers for Disease Control and Prevention (CDC) Mycotic Diseases Branch, along with her team, shared documented evidence that more than one-third of patients with invasive aspergillosis lacked documented immunosuppressive conditions.

?We would like clinicians to be aware that invasive...

Antibiotic resistance - some recent news

27 September 2018
Wonder why some bacterial infections remain stubbornly persistent through repeated antibiotic treatments? "One strategy pathogenic bacteria use to avoid antibiotics is to slow growth temporarily when antibiotics are present.
This process tends to explain why some people suffer from persistent recurring infections. Courses of antibiotics can stifle the growth of certain bacterial pathogens but some bacteria can enter this hibernation phase and avoid destruction." :...

Survey reveals patient perceptions of ITP

27 September 2018
Presented at the 23rd Congress of the European Hematology Association (EHA), "a new survey has revealed patients? perceptions of immune thrombocytopenia (ITP) and how the condition impacts their quality of life (QOL).

Patients reported delays in diagnosis, lack of support, severe fatigue, and impacts on both emotional well-being and their ability to work."
Full report of ITP poster here:...

Bloodwise Birmingham Impact Day 15 Sep 2018 - not CLL specific

16 September 2018
Recording of Bloodwise Birmingham Impact Day - starts about 20min-1:41 resumes about 2:36

Interesting presentations including one about speeding up drug development

Is Fenbendazole useful in treating CLL?

10 September 2018
I'm relatively new to CLL, having been diagnosed a little over a year ago. I'm currently in a Wait and Watch status, but I've been curious about how we are progressing with treatments. In doing a little research unrelated to CLL I ran across an article from a man that had Stage 4 lung cancer and was given only three months to live...Willing to try anything, he took the advice of a friend and tried a drug called Fenbendazole which is normally used by veterinarians to treat dogs for worms....

Probiotics are mostly useless and can actually hurt you

09 September 2018
This is the outcome of a study into the effects of probiotics on healthy people, not those immunocompromised!
?Relying on faecal samples as an indicator of what goes on inside the gut is inaccurate and wrong? says immunologist Elinav Eran Elinav of the Weizmann Institute of Science in Israel after he and colleagues studied the microbiome of healthy volunteers directly using endoscopies and colonoscopies. The study "found that the probiotic colonisation patterns were highly dependent...