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https://www.bbc.co.uk/news/uk-england-bristol-37542214

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A man with terminal leukaemia whose wife's online plea to fund his treatment in America went viral appears to be beating the disease.

Mike Brandon, 32, from Bristol, underwent treatment in Philadelphia after UK doctors were unable to help .

His wife Kate said his biopsy results were clear for the second time and doctors said they were delighted with his progress.

The couple have launched a campaign to help patients in a similar position.

Mrs Brandon said: "We have more tests ahead but, right now, we couldn't be happier.

"Prior to starting the trial, Mike's bone marrow was made up of 90% leukaemia cells and he was given weeks to live but thanks to the cutting edge CAR T-cell therapy he received in the US he is now cancer free. "

Prof David Marks, of Bristol Haematology and Oncology Centre, said: "We are delighted with his progress and remain optimistic about the longer term.

"Mike is doing very well some three and a half months after his CAR-T cell therapy in Philadelphia.

"Bone marrow tests at one and three months after the treatment showed no evidence of leukaemia using sensitive techniques."

But he said more follow-up checks will be needed.

'Humbled by generosity'

Mr Brandon was diagnosed with acute lymphoblastic leukaemia two years ago.

In May, his wife raised more than £450,000 using a social media campaign, to fund his participation in cancer trials at the University of Pennsylvania.

The couple have now started a new campaign called #Donate4TCells to help others who are facing a terminal diagnosis and have no other hope.

Mrs Brandon added: "We were so humbled by the incredible generosity of family, friends and strangers alike that we decided, now Mike is on the road to recovery, that we wanted to give something back.

"The funds raised will help support families whose loved ones are going through T-Cell Therapy like Mike."

CAR-T Cell Therapy

The CAR T Cells Trial uses genetically modified T cells to treat patients with B cell Chronic Lymphocytic Leukemia (CLL) and other B cell malignancies including Acute lymphoblastic leukaemia (ALL), which is what Mr Brandon suffers from.

Some of a patient's own immune cells (T cells) are removed from the blood and genetically modified in a laboratory to potentially target and kill their own cancer cells. The modified cells are then grown in the laboratory and re-infused into patients.

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Terminally ill patient 'now cancer free'

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A man with terminal leukaemia whose wife's online plea to fund his treatment in America went viral appears to be beating the disease. Mike Brandon, 32, from Bristol, underwent treatment in Philadelphia after UK doctors were unable to help .

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Really interesting article about the rise in crowdfunded cancer treatments abroad.

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When Gemma Nuttall developed cancer, her family raised thousands of pounds online, with the support of actress Kate Winslet, to send her to a German clinic. But there was no happy ending - and fears remain that crowdfunding puts new pressure on vulnerable families.

Doctors saw the first signs of Gemma Nuttall's tumour when she went for a pregnancy scan.

Everyone thought it was nothing at first - a cyst or a glitch in the monitor.

But a month later she was told it was ovarian cancer.

Gemma decided to delay chemotherapy until her daughter Penelope was born - and for a while life returned to normal.

Then the headaches started.

The cancer had spread to her brain and in spring 2017 she was offered palliative care and given months to live.

"I just thought, 'Well, that's not happening. I'm not losing her. She's 28 years old with a baby of her own. I need to do something,'" Gemma's mother, Helen Sproates, told the BBC's Victoria Derbyshire programme.

"That's when I started looking at alternative treatment abroad. I jumped on the internet and started searching."

Helen found a clinic in Germany, the Hallwang, that offers alternative therapies such as ozone treatment and vitamin infusions alongside drugs not available on the NHS.

The clinic does not publish survival rates but its website includes testimonies from former patients treated there with apparent success.

It was one of these testimonies that caught Helen's eye.

But the decision to take Gemma to the Hallwang brought a bigger pressure. The bill for just one trip was €108,000 (£93,000), with future visits needed for "top up" treatments.

"It was like getting hit by a sledgehammer," Helen said. And the process of deciding what to do and how to do it had been "horrendous".

Helen said: "You have to really sit down as a family and say, 'If we do this, if we end up destitute with nothing and it doesn't work, where are we going to be?'

"You have to decide what you are going to do about it. And then you have to live with the consequences."

Raised hopes

Solid figures do not exist but, anecdotally, charities and doctors have no doubt that the number of cancer patients heading overseas is rising rapidly.

Information about options is now just a click away online, though it may not always be accurate or reliable.

Heavily publicised cases, such as those of Ashya King, have raised hopes and encouraged others.

Treatments are often very expensive but thanks to the internet and social media they have become affordable - for some.

More than £20m a year is now being raised on crowdfunding sites for cancer treatment not available on the NHS, new research from the Victoria Derbyshire programme suggests.

If a crowdfunding campaign takes off, it can raise tens of thousands of pounds in days.

Critics fear this could be exploited by clinics, some of which charge hundreds of thousands of pounds for treatment.

Gemma's family took out loans and sold a house to get to the Hallwang.

But it wasn't nearly enough. So they turned to the internet.

The Victoria Derbyshire programme's analysis of the three main websites used for crowdfunding cancer therapies shows more than £20m was raised in the year to February 2019 for treatment not available on the NHS.

This sum does not include millions donated directly into patients' bank accounts.

While some people are able to raise fortunes, countless others struggle to do so.

Success depends on many factors, including the fundraisers' personal connections, the physical appearance of the patient - young women and children tend to raise more than the middle-aged or elderly - and the amount of effort put into keeping donors informed and engaged.

Many families who have gone down this route say they found it onerous and invasive.

Helen's decision to go public and crowdfund led to "quite big rows" with her daughter.

"We are a private family. Gemma was quite shy and didn't want to get involved with any of it and nor did I to be honest," she said.

"But we needed a high profile to get more funds to get her to Germany."

Cancer charities say they are increasingly concerned about photographs and video clips of young children, often very sick in hospital, being posted online to solicit donations.

And at a time when a parent most wants to spend time with their child, they have to focus on fundraising instead.

Sarah Lindsell, head of the Brain Tumour Charity, told BBC News: "I really feel for families at that stage where they might just want to be sitting on the sofa cuddling or reading a story and at the same time they've got Facebook open because they've got 100 replies they've got to give.

"For some families, it's starting to feels like an obligation, 'If you haven't tried this, are you a good parent?'

"That's a very, very difficult position to be in."

Some relatives say their families have been ripped apart by the pressure of trying to meet rising bills.

The parents of one young child with terminal cancer told BBC News they had deliberately made the decision not to raise money for treatment overseas but to "make memories" with their daughter instead.

But they had been constantly harried by other family members to reverse the decision.

Celebrity involvement

Gemma's crowdfunding campaign raised £16,000 - a large sum but still nowhere near enough for a first round of treatment.

Then, out of the blue, an email arrived. Helen thought it was fake at first. It was from someone saying they worked for Kate Winslet.

The actress, who had read Gemma's story, wanted to help.

Winslet raised money herself and media coverage boosted the wider crowdfunding campaign.

"I'm so unbelievably grateful," Helen said. "We were very, very, very lucky."

Thanks to Winslet, Gemma was able to make seven trips to the Hallwang.

Germany has quietly emerged as the centre of Europe's private cancer industry, with dozens of clinics offering very different treatments.

The Hallwang is by far the most high profile, catering to British patients as well as others from the US, Australia and the Middle East.

From the outside, the clinic, in the Black Forest, looks more like a giant Alpine chalet, with gardens and its own restaurant.

The Hallwang's largest shareholder, Albert Schmierer, owns a chain of nearby pharmacies specialising in homeopathy, a controversial treatment that the NHS stopped funding in 2017.

Costs are high.

One father told BBC News he had been charged £600 per night for overnight stays with his sick child - on top of charges for his son's own bed.

Paracetamol tablets had been charged at 12 euros (£10) for two, he added.

The clinic claims it has a specialist cancer doctor for every two to three patients and a nurse to patient ratio of "nearly 1:1".

It offers patients alternative or "complementary" therapies, though it says this is a small part of its work, alongside medical treatments not always available on the NHS.

Immunotherapy is a relatively new type of medicine that uses the body's own immune system to destroy tumour cells.

Results for skin and blood cancers have been encouraging in some, though by no means all, cases.

However, for many solid tumours - such as ovarian or brain cancer - the science is at an early stage, the benefits are even less clear and no treatment is close to approval for NHS use.

Testimonies from a number of patients suggest the Hallwang has exaggerated the likely effectiveness of these drugs, with one woman with stage-four pancreatic cancer apparently being told remission lasting five years was a possibility.

Pancreatic cancer experts in the UK told BBC News in their opinion the patient, who died within the average time predicted by the NHS, had been given false hope.

The Hallwang had also advised a patient with terminal brain cancer the treatment could prolong her life by up to 10 years, her husband said.

'Extraordinary' results

Alongside immunotherapy, patients like Gemma are sold a variety of poorly explained cancer vaccines, designed to train the body to better recognise tumour cells.

One family told BBC News they had been charged £45,000 for a series of five vaccine injections developed by analysing an individual tumour.

Patients and their NHS doctors said they had been told little more about the vaccines, apparently developed at the clinic itself, despite repeated inquiries.

The Hallwang did not answer the BBC's questions about the vaccines' content.

The clinic did say it is one of the "pioneers in the field of personalised and precision-based oncology" and has a "clear focus on evidence-based treatment" which has achieved, for some of its patients, "extraordinary long-term... results."

It said standard care often increases overall life expectancy in cancer patients by only a couple of months.

"If [our] patients survive with our treatment strategies one, two or three years longer, this is a real breakthrough," it said.

"Especially given the improved fitness and quality of life patients experience at our clinic."

The Hallwang can cite anecdotal evidence of patients who have survived longer than NHS prognoses, which are rough estimates based on average survival rates.

And the BBC has spoken to one British patient diagnosed with terminal skin cancer five years ago who is convinced the clinic saved his life.

But there is no way to tell whether the Hallwang extends or improves most of its patients' lives - because it does not publish outcome data.

BBC News repeatedly requested access to its results so that these could be compared with outcomes for patients on NHS palliative care but did not receive a response.

Instead, the clinic directed us to its Facebook page.

"Life-saving treatment"

Doctors at the Hallwang insist they are honest with patients and "always [have their] best interests at heart."

"We never talk about 'cure', nor do we use phrases like 'beat it', 'make it', 'kick it', et cetera. Our medical team consists of medical oncologists, not sports commentators," the clinic said in a statement.

However, in a marketing video on the front page of the clinic's own website, a patient can clearly be heard saying he had been told the medical team would "try and beat my cancer".

Other families told BBC News phrases such as "full remission" had been used.

Recalling conversations about her daughter's prognosis, Helen said: "100% we thought she was going to get cured and get in remission and there was going to be a miracle."

Gemma made seven visits to Germany in total, in 2017 and early 2018, paying on average about £60,000 for each round of treatment.

And for a while, it appeared to be working.

Scans at the Christie NHS cancer hospital, in Manchester, in June and October 2017 showed no sign of tumours in Gemma's body.

And in February 2018, she appeared on national television alongside Kate Winslet to thank the actress for "saving her life".

But by this time the strain of travelling abroad every three weeks was taking its toll and Gemma wanted a break.

The Hallwang advised her to keep returning for "maintenance" treatments, costing £20,000 less than she had been paying before. But the money was beginning to run out.

And Helen had to choose between paying for continuing treatment or saving the remaining money in case the cancer returned.

"It's like spinning plates," she said.

"If I stop doing it, are they going to smash to the ground or stay up there?

"I beat myself up now as to whether I made the right decision."

They decided to stop the treatment.

Gemma 'inspired' others

In May 2018, a year after her first round of immunotherapy, Gemma started complaining of back pain.

A scan confirmed the worst - the cancer was back and had spread to her spine.

Returning to Germany was never an option as she became too ill to travel. She died last October.

A video of Gemma on television talking about how her life had been saved by Kate Winslet's donation remains on the Hallwang's website.

Helen wants it taken down, along with testimonies from other patients who have died.

"They are not here anymore, so to use them to get more people to go is absolutely wrong," she said.

The person who initially inspired her to take Gemma to the Hallwang "is not turning out well", she said.

"And that's what happened with Gemma. She's inspired a lot of people. But Gemma hasn't turned out well," Helen said.

Helen believes the Hallwang did extend Gemma's life - but she cannot say with certainty that going there was the right decision.

"You do not do anything else except get on the plane, go have treatment, come back on the plane," she said.

"That's it. That's your life - no holidays, no family time, barbecues, no happy times."

Gemma's daughter, Penelope, is now living with her father.

"I ask myself should we have done the bucket list and spent the last few months of Gemma's life with her daughter, trying to be happy and make memories?

"But it is what it is, it's done now."

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Cancer crowdfunding 'couldn't save my daughter'

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When Gemma Nuttall developed cancer, her family raised thousands of pounds online, with the support of actress Kate Winslet, to send her to a German clinic. But there was no happy ending - and fears remain that crowdfunding puts new pressure on vulnerable families.

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Syringe driver meds

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A:autoimmune
B:blood disorders
C:chronic fatigue/cancer
D:depression
E:endocrine/ ED
F: fibromyalgia
Generalized infection
H:heart disease
I:immune deficiency

pregnancy, sleep disorders, uremia

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C: cancer
H: hematological malignancy
I:infection/inflammation
C:congestion
A:autoimmune
G: glycogen disorder disease
O: other

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Nils
https://www.health24.com/Lifestyle/Your-Blood/Anaemia-20130216-2

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Dais

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Daisy

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Daisy

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Nils

https://patient.info/doctor/non-hodgkins-lymphoma-pro

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Octavi

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The full blood count (FBC) is one of the most commonly requested tests and provides important information about the kinds and numbers of cells in the blood: red blood cells, white blood cells and platelets. Abnormalities in any of these types of cells can indicate the presence of important medical disorders.

Blood is composed of a variety of living cells that circulate through the heart, arteries and veins carrying nourishment, hormones, vitamins, antibodies, heat and oxygen to the body's tissues. Blood contains three main components - red blood cells, white blood cells, and platelets - suspended in fluid, called plasma. Red blood cells contain haemoglobin, a protein that carries oxygen to all the tissues of the body. Among other functions, white blood cells are responsible for protecting the body from invasion by foreign substances such as bacteria, fungi and viruses. White blood cells also control the immune process. Platelets help the blood clotting process by plugging holes in broken blood vessels.

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Learn how the full blood count (FBC) test is used as a broad screening test to check for such disorders as anaemia, infection, and to determine an individual’s general health status, or to diagnose certain conditions. Understand what to expect from the test and how to interpret results.

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Daisy

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Octavi

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The NICE Clinical Knowledge Summary (CKS) site is only available to users in the UK, Crown Dependencies and British Overseas Territories

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JOSH
good advice on patient rights to treatment/ choosing their own treatment

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Thomas

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In patients in remission after treatment with curative intent for non-Hodgkin's lymphoma (NHL), the purpose of follow-up during the first 2-3 years is early detection of relapse for timely re-treatment to improve survival prospects. Follow-up visits usually include a review of symptoms, physical examination, full blood count and biochemical profile including serum LDH.

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Thomas

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Thomas

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Thyroid function tests (TFTs) are a commonly requested investigation in clinical practice. This guide aims to provide you with the knowledge needed to interpret TFTs and consider underlying pathology.

Thyroid hormonal axis

The ability to interpret thyroid function tests (TFTs) first requires an understanding of the thyroid hormonal axis. Each of the thyroid function tests assesses a different aspect of this axis and understanding the relationship between the results is key to being able to reach a diagnosis.

Thyroid hormonal axis overview

1. The paraventricular nuclei in the hypothalamus release thyroid-releasing hormone (TRH).

2. This causes thyrotrope cells in the anterior pituitary to release thyroid-stimulating hormone (TSH).

3. The thyroid responds to the TSH by releasing T4 and T3.

4. T4 inhibits the pituitary and hypothalamus in a negative feedback loop. This is the 'brake system' which aims to maintain a state of homeostasis.

Thyroid function tests (TFTs)

The term ' thyroid function tests' refers to the following investigations:

TSH (0.4 - 4 mU/L)

Free T4 (9 - 25 pmol/L)

Free T3 (3.5 - 7.8 nmol/L)

There are separate reference ranges for children and pregnant women.

Reference ranges for TFTs often vary between labs, so always refer to your local guidelines.

Important points

Whilst free T3 (fT3) is measured, it is less relevant than free T4 (ft4). This is because the thyroid releases T4 and T3 at a ratio of about 20:1 respectively, with T3 mainly being produced by peripheral conversion of T4. As a result, T4 is a much better marker of thyroid function.

Free T4 (fT4) is roughly 1% of the total T4, with the rest being bound to thyroid-binding globulin.

T4 has a half-life of about one week, therefore, to monitor the impact of an intervention (e.g. increasing a patient's levothyroxine dose) you need to wait several weeks before repeating TFTs.

Hypothyroidism

Primary hypothyroidism

Primary hypothyroidism involves reduced secretion of thyroid hormone from the thyroid gland itself.

Pathology which decreases the thyroid's ability to release T4 and T3 or respond to TSH can, therefore, cause primary hypothyroidism.

Primary hypothyroidism is the most common cause of hypothyroidism, accounting for 99% of all cases.

Pathophysiology

1. Less T4 and T3 are produced due to the thyroid's reduced capacity to produce hormone or respond to TSH.

2. As a result, there is reduced negative feedback on the pituitary and hypothalamus.

3. The reduction in negative feedback results in increased production of TRH (which we don't typically measure) and TSH.

4. The end result is low T4 and T3 and a raised TSH.

Diagnosis

The typical findings that would indicate a diagnosis of primary hypothyroidism are as follows:

Raised TSH: due to the absence of negative feedback.

Low T4: due to the thyroid's inability to produce enough T4.

A normal T4 in the context of a raised TSH may suggest subclinical hypothyroidism (most commonly caused by underlying autoimmune disease).

Aetiology

Causes of primary hypothyroidism include:

Autoimmune thyroiditis (50%)

Iodine deficiency or excess

Thyroidectomy

Therapy with radioactive iodine - a treatment for hyperthyroidism

External radiotherapy

Drugs

Thyroid agenesis or dysgenesis

Secondary hypothyroidism

Secondary hypothyroidism involves a reduction in the hormones that stimulate the thyroid to produce thyroxine.

Pathology which affects the pituitary and hypothalamic glands can result in decreased production of TRH and TSH, causing secondary hypothyroidism.

Secondary hypothyroidism is a rare cause of hypothyroidism, accounting for 1% of all cases.

Pathophysiology

1. Decreased production or secretion of TRH and TSH results in decreased stimulation of the thyroid gland.

2. The thyroid gland, therefore, produces less T3 and T4.

3. The low T3 and T4 would normally stimulate the pituitary and hypothalamic glands to increase TRH and TSH production, however, they are unable to increase production.

4. The end result is low T4 and T3 and a normal/low TSH.

Diagnosis

The typical findings that would indicate a diagnosis of secondary hypothyroidism are as follows:

Normal/low TSH: due to a lack of production.

Low T4: due to the absence of any positive feedback from TSH.

Aetiology

Causes of secondary hypothyroidism can be either pituitary or hypothalamic in origin.
Pituitary causes:

Pituitary adenoma: the most common cause.

Pituitary surgery or radiotherapy which damages the pituitary tissue.

Hypothalamic causes:

Hypothalamic or suprasellar tumour.

Surgery or radiotherapy which damages the hypothalamic tissue.

TRH is not measured as part of thyroid function tests, as it is only released locally between the hypothalamus and pituitary (so it is not present in representative quantities within the peripheral circulation). Both structures are commonly grouped together into 'secondary' because an issue with TRH gives the same blood test results as an issue with TSH, however, some literature may refer to the hypothalamus as a 'tertiary' cause.

Hyperthyroidism

Primary hyperthyroidism

Primary hyperthyroidism involves an excessive production of T3 and T4 by the thyroid gland as a result of pathology within the thyroid gland itself.

Pathophysiology

1. The thyroid produces excessive amounts of T4 and T3.

2. The excessive T4 and T3 cause negative feedback on the pituitary and hypothalamus, resulting in decreased production of TRH and TSH.

3. The end result is a raised T3 and T4 and a low TSH.

Diagnosis

The typical findings that would indicate a diagnosis of primary hyperthyroidism are as follows:

Raised T3/T4: due to excessive production.

Low TSH: due to negative feedback on the pituitary/hypothalamus.

Aetiology

Causes of primary hyperthyroidism include:

Graves' disease (75% of all cases)

Toxic multinodular goitre

Toxic adenoma

Iodine-induced (rare)

Trophoblastic tumour (very rare)

Secondary hyperthyroidism

Secondary hyperthyroidism involves stimulation of the thyroid gland by excessive thyroid-stimulating hormone (TSH).

Pathophysiology

1. TSH production is increased by either the pituitary/hypothalamus or another source (known as ectopic production).

2. The excess TSH causes overstimulation of the thyroid gland, resulting in high levels of T3 and T4 production.

3. Normally a raised T3 and T4 level would cause negative feedback, decreasing TSH production, however, in this instance, the TSH production is not responsive to any negative feedback, resulting in continued excess production.

Diagnosis

The typical findings that would indicate a diagnosis of secondary hyperthyroidism are as follows:

Raised T3/T4: due to excess production that is driven by a raised TSH level.

Raised TSH: due to excess production.

Aetiology

Causes of secondary hyperthyroidism include:

TSH-secreting tumour

Chorionic-gonadotropin secreting tumours (hCG secreting)

Thyroid hormone resistance (usually euthyroid): TSH is resistant to T3/T4 negative feedback.

Summary

Below is a flowchart that summarises the key points discussed in this article.

Reviewer

Professor Levy
Consultant Endocrinologist
References

1. The endocrine system at a glance, 3rd edition; B.Greenstein D.Wood; Wiley-Blackwell; ISBN 978-1-4443-3215-5; 2011

2. Comprehensive Clinical Endocrinology 3rd ed., G.Besser, M. Thorner; 2002; 0-7234-3185-X; Elsevier science limited

3. Willims Textbook of Endocrinology 10th ed.; Larsen, Kronenberg, Melmed, Polonsky; 0-7216-9184-6; 2003

4. De Leo, Lee, Braverman; Hyperthyroidism; Lancet. 2016 Aug 27; 388(10047): 906-918; available from: [LINK].

5. Kostoglou-Athanassiou, Ntalles; Hypothyroidism - new aspects of an old disease; Hippokratia, 2010 Apr-Jun; 14(2): 82-87

6. Dr Lousie Newson;Thyroid Function Tests. Patient.info. Published in 2015. Available from: [LINK].

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Thyroid Function Test (TFT) Interpretation

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Thyroid function tests (TFTs) are a commonly requested investigation in clinical practice. This guide aims to provide you with the knowledge needed to interpret TFTs and consider underlying pathology. The ability to interpret thyroid function tests (TFTs) first requires an understanding of the thyroid hormonal axis.

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Daisy

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Just in Case Bags (JICB) formalise anticipatory prescribing towards the end of life when a clinical deterioration is anticipated but the patient does not yet need as required subcutaneous injections or a syringe pump for current symptom control.

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Julia

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Julia

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Info leaflet for PATIENTS by Kings College Hospital
https://www.kch.nhs.uk/Doc/pl%20-%20330.3%20-%20bone%20marrow%20aspiration%20and%20thephine%20biopsy.pdf

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Daisy

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Julia

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Julia

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Splenomegaly and Hypersplenism Information Page

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Learn more about Splenomegaly and Hypersplenism. Read our proffesional online reference for Splenomegaly and Hypersplenism.

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Daisy

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Daisy