I now have Covid 19. Been prescribed PAXLOVID.

Hi Folks. A quick update from my sickbed/desk. Ok, so now 6 days in from my first Covid symtoms and 5 days in from my first positive Lateral Flow Test (LFT). How is it going? Please excuse lack of smart format and presentation.....brain fog IS a thing!! Symptom: All over body ache Sore throat Headache Phlegm in throat Slight wheezing Cough Hoarse voice Lateral flow tested on Monday (4th), Wednesday and today...still positive

Scirocco 2 Morocco 10 years on. Scarlett Mk3...The new chapter begins :-)

Obviously anyone who has been following my blog over the last 10 years must be aware of the disaster which befell my Mk2 Scirocco Scala "Scarlett".

After my brilliant car was fatally damaged by a 42 ton lorry on the A17 in 2014 I was left, after a messy and financially crippling court case, with not only no car, but with a £2000 legal bill and permanent Tinnitus. The other driver had a much better legal team than me and on the day the judge decided to award fault to both parties....although the 3 versions of the other drivers statement should have made him question what ACTUALLY happened on that cold February morning !!

Anyway. I digress.

This post is to let you know that I AM BACK !

Gone is the Ford Focus ST which i owned for around 2 and a half years primarily due to my long term good friend David who, Observing my predicament and being a very kind fella, offered to sell me the ST for a bargain price......a very welcome and generous gesture being as i had spent the last 2 years feeling incredibly stressed and ultimately humiliated and financially ruined by a system that appears to hold such things as the truth as being incidental to the facts !.....i'm off   again aren't I lol :-)

So. Ladies and Gentlemen. Can i now then present to you Scarlett Mk3 (She's a Mk3 Scirocco so hence the label!)

This cracking motor is an October 2008 Scirocco 2.0ltr TSI GT which is finished in Salsa Red, which is not such a dissimilar colour to my previous Mk2 (Paprika Red)....which is a nod to the old girl of course :-)

Of course this year (September) marks 10 years since I and my excellent friend Glen Place set off on our Scirocco 2 Morocco adventure.....and on our return to the UK we were invited to attend the launch of the New Scirocco Mk3 at Heron VW in Newark upon Trent. If i remember correctly Glen was unable to make it up to my neck of the woods but myself and my son attended with Scarlett and her half Roc trailer.....so the fact i now own a Scirocco from that particular moment in time seems somehow fitting as a continuation of my love of these cars.


So....here she is.

Scarlett Mk3......

Of course the Registration is quite poignant as this is actually my 6th Scirocco (S6) (6 and a half if you count the trailer!) and its a Volks Wagen Scirocco (VWS)... nice :-)

So far the car has been fantastic, and i hope to be showing her at the Scirocco Register National Meeting in August 2018.....alongside Glens newly refurbished 1988 Scala.....should be EPIC :-)

So. How is MY Leukaemia doing these days ?

Well I am glad to report that so far it is behaving itself ! :-). August 15th  this year marks 11 years since my CLL diagnosis at Grantham Hospital during what i had believed to be a "routine" appointment!!

In the last 11 years I have gone from blood tests and prods every 3 moths to blood tests and check-ups every 12 months. As an added bonus I am now under the excellent care of Mr Tim Moorby,of the resident Haematology Consultants at the hospital I have worked at now for almost 21 years....so getting to my appointments is a relatively straight forward affair :-).

In the old days a decade or so ago I had to make my way to Grantham to see a random consultant {never quite sure who I would be seen by!) and the blood results would take between 7 to 10 days before they arrived at my GP surgery.....awaiting the results was a very stressful situation believe me !

So. I will be 51 in May, diagnosed in 2006 aged 40....now 11 years on...hopefully this little resume will give a bit of encouragement to anyone who is newly diagnosed.....i wish i could have read something like this early on in my journey because fear (and insomnia) had to be the worst aspects in the early years.

As my good friend (Sadly now departed ) Geoff Brocklebank told me in the dark weeks after my shock discovery..." You are more likely to die with CLL than from it".....that simple sentence was like an epiphany to me...and gave me the strength and drive to get my head in order...and to get involved in things such as this Blog. Thanks Geoff....you are sadly missed my friend, but you gave me the inspiration to get off my sorry ass and do something useful with my (new, post CLL) life  :-)

Until next time.

Andy

An interesting CLL blog by a US doctor

http://bkoffman.blogspot.co.uk/?m=1

BloodWise. The new name of Leukaemia and Lymphoma Research....and much easier to type ,share my story :-)

Just had a look at the new(ish) Bloodwise website and spotted a familiar contributor who has had his Leukaemia story published on there :-)

If you fancy a read just follow the link below......

https://bloodwise.org.uk/blog/my-battle-chronic-lymphocytic-leukaemia

Keep on fighting Folks :-)

Revolutionary new CLL drug developed in Leeds

25/09/2015

A revolutionary new cancer drug designed by researchers in Leeds could change the way the disease is treated.

What makes it different is this drug doesn't require chemotherapy - it's an oral drug which has today been licenced for the NHS by NICE - the National Institute for Health and Clinical Excellence

The treatment, for Leukaemia patients, could pave the way for a new methods of tackling the condition.

My Leukaemia story has been published on the LLR Website :-)

Hi Folks.Hope you are all well and 2013 is being good to you so far!.

Just a quick heads up that a story that I submitted to the Leukaemia and Lymphoma Research website has, much to my surprise!, been published :-0 !! lol.

If you haven't already seen it, here is the link:

http://leukaemialymphomaresearch.org.uk/people-personal-stories/patient-stories/andy-ward%E2%80%99s-story

Please tell me what you think. I appreciate the feedback :-)

Cheers.Andy

Could you donate Stem Cells to Anthony Nolan? It's FREE :-)

Preganant? considering starting a family? Have you considered donating your umbilical cord blood to Anthony Nolan?

You could help save a life :-)

Please follow this link:

http://www.anthonynolan.org/What-we-do/stem-cell-donation.aspx

The service is FREE and would utilise the life saving properties of tissue which would normally be disposed of after your babies birth......something for nothing..and then some!

Problems faced by CLL patients. (26/10/2012)

Watch "Problems faced by patients with chronic lymphocytic leukaemia (CLL)" on YouTube

Beating CLL

Watch "How we're beating chronic lymphocytic leukaemia (CLL)" on YouTube

RR856 - The burden of occupational cancer in Great Britain - Leukaemia

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A new study into the connection between occupations and the link with various forms of Leukaemia has been published by the HSE.

HSE About HSE HSE's work Science, engineering and research Resources Research report series Research reports 801-900 RR856 - The burden of occupational cancer in Great Britain - Leukaemia RR856 - The burden of occupational cancer in Great Britain - Leukaemia


The aim of this project was to produce an updated estimate of the current burden of cancer for Great Britain resulting from occupational exposure to carcinogenic agents or exposure circumstances. The primary measure of the burden of cancer was the attributable fraction (AF) being the proportion of cases that would not have occurred in the absence of exposure; and the AF was used to estimate the number of attributable deaths and registrations. The study involved obtaining data on the risk of the cancer due to the exposure of interest, taking into account confounding factors and overlapping exposures, as well as the proportion of the target population exposed over the relevant exposure period. Only carcinogenic agents, or exposure circumstances, classified by the International Agency for Research on Cancer (IARC) as definite (Group 1) or probable (Group 2A) human carcinogens were considered. Here, we present estimates for leukaemia that have been derived using incidence data for calendar year 2004, and mortality data for calendar year 2005.



The estimated total (male and female) AF, deaths and registrations for leukaemia related to overall occupational exposure is 0.74% (95% Confidence Interval (CI)= 0-3.86), which equates to 23 (95%CI= 5-120) attributable deaths and 38 (95%CI= 8-198) attributable registrations.



This report and the work it describes were funded by the Health and Safety Executive (HSE). Its contents, including any opinions and/or conclusions expressed, are those of the authors alone and do not necessarily reflect HSE policy.



Full report [1]

Assistance in the use of Adobe Acrobat PDF files is available on our FAQs[2] page

Origin of chronic lymphatic leukaemia

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Up until now the causes of the development of chronic lymphatic leukaemia, the most common form of cancer of the blood in Europe, have been unknown. At present a cure is not possible. A research group at the MedUni Vienna led by Christoph Steininger of the University Department of Internal Medicine I has now however discovered a lead on the origin of this disease. Says Steiniger: "This could influence the therapy approach taken in treating chronic lymphatic leukaemia."

For approximately 20 years it has been suspected that chronic lymphatic leukaemia occurs through the stimulation of B cells with other factors also playing a part. In the current research study, which has been published in the journal Blood, the scientists were looking for an antigen that attaches itself to the leukaemia cell receptors and they were able to identify the protein pUL32 of the human cytomegalovirus.

Virus "conceals" itself in cells

The cytomegalovirus, a member of the herpes family of viruses, is carried by approximately 60 to 70 percent of the Austrian population without them getting ill from it and without them even noticing that they are carrying the virus. In most cases people are infected with the virus during childhood. After being infected, the virus goes on to survive in the cells of the immune system their whole life long. The virus conceals itself within the cells and in addition it confuses the immune system with its own chemical messengers.

Only when the immune system in an infected person is weakened, for example by medical suppression as part of an organ transplant or in an HIV-illness, can the virus make someone ill. Whether this virus infection can trigger leukaemia, or whether the connection observed between leukaemia and the cytomegalovirus points to another mechanism, independent of the virus, in the origin of the cancer is now the subject of several follow-up studies.

One of the follow-up studies is looking at whether an antiviral treatmentagainst the cytomegalovirus can prevent the leukaemia cells from being stimulated and so prevent the further advance of the disease.

More information: „Recombinant antibodies encoded by IGHV1-69 react with pUL32, a phosphoprotein of cytomegalovirus an B-cell superantigen.” C. Steininger, et al. Kipps. Bloodjournal, doi: 10.1182/bllod-2011-08-374058

Provided by Medical University of Vienna

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Dr Terry Hamblin, champion of Leukaemia sufferers ,has died.

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The workd has lost a leading light in the fight against Leukaemia with the sad news that Terry Hamblin passed away on Sunday.


Terry's name is recognized  by a huge number of people around the world as an authority on the subject of CLL and like many many others I always found solace in his friendly and reassuring articles on his blog "Mutations of Mortality".


Click HERE to read the article posted in the Bournemouth Echo:

The world today is a much poorer place with his passing. RIP Terry, you where an inspiration and a champion for the many CLL sufferers around the Globe.

To read the many interesting posts covering a wide range of subjects, not only CLL, on his excellent Blog click HERE.

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Searching for the secrets behind the progression of CLL

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Scientists at Cardiff University have been awarded £216,500 by Leukaemia & Lymphoma Research to investigate mutations that cause the development of leukaemia.

Chronic lymphocytic leukaemia (CLL) is a cancer in which the bone marrow produces abnormal white blood cells, causing a range of problems with the immune system. It develops slowly, often over many years and while it is treatable, it remains incurable.

The Cardiff team, led by Dr Duncan Baird and Dr Chris Pepper, have discovered that testing for damage at the ends of chromosomes in CLL cells is an accurate predictor of the progression of the patient’s leukaemia.

The scientists hope that by studying the DNA damage within leukaemia cells further, they will be able to find ways to slow down the progression of CLL in patients. They have already discovered that ‘telomeres’, the caps on the end of chromosomes which protect them during cell division, are gradually shortened as the CLL progresses. When the telomeres become completely dysfunctional in the CLL cells, they can fuse together during cell division, making the cells even more malignant and accelerating the cancer in the blood. 

Dr Baird, of the University’s School of Medicine, said, “Using CLL cells and the latest technology which allows us to detect tiny amounts of DNA, we will map exactly the link between chromosome damage and each stage of the cancer. The ultimate goal is to find ways to interfere with the process and develop drugs to actually stop the leukaemia progressing.”

Around 3,300 people are diagnosed with CLL in the UK every year. It is predominantly a blood cancer of later life, with most people diagnosed with CLL over 65 years old.

Cardiff University was named a ‘Centre of Excellence’ by Leukaemia & Lymphoma Research. The charity is currently investing £2 million into vital blood cancer research at the University.

Article sourced via the Leukaemia and Lymphoma Research (UK) Website.

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An amazing breakthrough in Leukaemia treatment may be available in 5 years.

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A simple injection to cure Leukaemia could be produced within five years after a remarkable breakthrough by a British research team.

They believe they have found a way to trigger the body's immune system to beat a disease which kills 4,000 people a year in this country. The same techniques may eventually be advanced to treat other cancers, such as breast and lung, they say.

The breakthrough follows six years of research, funded by the Leukaemia Research Fund, at London's Hammersmith Hospital and Imperial College School of Medicine.

It involves two strands, firstly to 'label' the cancerous cells, and secondly to mass-produce immune cells outside the body which can then be injected to search and destroy the malignant ones. In the future, the researchers hope to use the technique to 'wake up' a patient's own immune system to destroy malignant cells without using donor cells.

Dr Hans Stauss, a tumour immunologist at Imperial, said: 'The possibilities for new treatments are enormous.' The first trial of the injection is about to begin on ten patients.

The 'labelling' was achieved by identifying a single gene which is over-active in leukaemia cells. It is referred to as WT-1. For the second strand, the researchers took white blood cells from healthy donors and isolated the few that mounted the fiercest response against tumour cells in the laboratory.

By cloning them, they were able to produce unlimited supplies of peak performance immune cells, called T-cells. In tests, the engineered immune cells specifically destroyed leukaemia cells and ignored normal cells of the same type.

'That's the beauty of the approach,' said Dr Stauss. 'It is so specific at destroying cancer cells.' He hopes to further develop the technique for after-care to ensure there is no recurrence of the cancer .The timescale is about five to six years before we see it widely used,' said Dr Stauss.

'The principle can be applied to almost all forms of leukaemia. What makes the work even more exciting is that our findings can also be applied to solid cancers, such as breast or lung cancer, where there is similar over-activity of WT-1.'

Lord Winston, director of research and development at the Hammersmith Hospitals NHS Trust, said: 'To the best of our knowledge this is the first time in the world that anyone has identified a target which allows T-cells to selectively destroy cells that cause leukaemia.

'Such a breakthrough underlines the vital importance of long-term academic research in the production of new and desperately needed treatments.'

Every year 5,000 cases of leukaemia are diagnosed in Britain and 4,000 victims die. It can be either acute, with rapid degeneration, or chronic, a slowly progressive form of the disease.

In both cases the bone marrow of the patient produces large numbers of abnormal, fast- dividing cells which inhibit the body's ability to produce blood. Chemotherapy is the recognised treatment. Sometimes bone marrow transplants are needed

Read more: http://www.dailymail.co.uk/news/article-15039/Breakthrough-leukaemia.html#ixzz1XSo8sx31


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Annual Blood test today...and all is well :-)

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Today was the day I popped along to the clinic at Kings Mill Hospital to see Mr Tim Moorbey (My consultant) who, after checking on my blood results, doing a weight check and a physical examination, informed me that my CLL is currently behaving itself (yeaahhh!). August 15th 2011 marks 5 years since my diagnosis.

Just wanted to share that bit of good news with you :-)

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Australian comedy legend and Journalist Clive James (71) has CLL Leukaemia.

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I was sorry to hear that Clive James has recently become a member of the CLL Club. It has been reported (widely and repetitively!) by the press that Clive has had the illness for some 15 months now and is currently battling a chest infection/complication related to his Leukaemia.

I have always been a great fan of Clive's and find his dead pan comedy deliveries highly amusing :-).

I hope that Clive is feeling a lot better soon, and that he continues to amuse his fans for many more years to come.

P.S. If you fancy posting a "guest blog" on this Leukaemia Issues site, please drop me a line and I would be very happy to share your thoughts with my readers.

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So. What do you know about the treatment of CLL?

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Well.If you are like me and currently still on "watch and wait" you probably haven't considered the labyrinth of treatment options that currently exist. But follow the link and take a look at this questionnaire which appears to be aimed more at the medical profession, but may be of interest if you want to get to "Know your enemy"!

http://www.tripdatabase.com/doc/1136752-Test-your-knowledge-on-chronic-leukaemia

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Exposure to benzene at work and the risk of leukaemia.

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"A substantial number of epidemiologic studies have provided estimates of the relation between exposure to benzene at work and the risk of leukemia, but the results have been heterogeneous. To bridge this gap in knowledge, we synthesized the existing epidemiologic evidence on the relation between occupational exposure to benzene and the risk of leukemia, including all types combined and the four main subgroups acute myeloid leukemia (AML), acute lymphocytic leukemia (ALL), chronic lymphocytic leukemia (CLL), and chronic myeloid leukemia (CML)."

I have just found this article on the web. The results it shows makes me wonder with renewed interest if my exposure to AVTUR (Aviation Fuel) during my 12 years in the RAF had any link to my diagnosis of CLL in 2006.

To read the full report click HERE.

Chronic lymphocytic leukaemia is a risk factor for venous thromboembolism

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Venous thromboembolism (VTE) is a major cause of morbidity and mortality in cancer patients. The literature is sparse on the incidence in the most common lymphoid malignancy, chronic lymphocytic leukaemia (CLL). We calculated the incidence rates for VTE in an unselected UK CLL clinic population at 1.45% per patient year. This represents a tenfold increase over previously published estimates of incidence in the general population and a twofold increase over that of the local hospital inpatient population. In our cohort, the risk of VTE was related to stage C disease. Clinicians should be aware that CLL patients are at risk of VTE.

Link for more details is HERE

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