“Numbing the Pain of Peripheral Neuropathy” – how to deal with nerve pain naturally

One of the themes of this blog is pain and pain management. I’m also very interested in natural and complementary ways of treating the symptoms of different medical conditions.

So I was very interested when I saw this infographic which looks at a few ways of treating Peripheral Neuropathy. Or nerve pain in the extremities of the body.

We have run a very successful discussion blog on neuropathic pain when we started PatientTalk.Org which look at the various ways our readers dealt with nerve pain. It is well worth a read with over 100 people telling their stories about neuropathy.

This infographic is interesting. While it highlights diabetes, lupus and chemotherapy as causes of Peripheral Neuropathy it also suggests that using natural treatments might work.

See what you think. Is it in your view correct? It would be great if you would share your experiences with us in the comments box below.

Thanks very much in advance.

Numbing the Pain of Peripheral Neuropathy

From Visually.

Blood Care Awareness – What are leukaemia, lymphoma and myeloma? Get informed here!


Blood Cancer Awareness

Blood Cancer Awareness

Doctors to be offered online training to improve UK’s poor diagnosis rates for blood cancers

• A new training course has been developed by blood cancer support charity Leukaemia CARE, in collaboration with the Royal College of General Practitioners (RCGP), and launched to mark the start of Blood Cancer Awareness Month

• The course set to radically improve GP knowledge of blood cancer symptoms, potentially saving around 1,000 lives a year

• Blood cancer survival from GP referral stands at 83.6% – but falls to 53.1% if diagnosis is delayed until the emergency admissions route.

• However, blood cancer symptoms can be easily confused with the symptoms of other less serious illnesses like the flu, leading to 33% of blood cancers – more than 10,000 patients – only diagnosed via emergency admissions

• Blood cancers such as leukaemia, lymphoma and myeloma are statistically the nation’s fifth largest cancer threat with 34,000 people diagnosed each year, and are the third biggest cancer killer

A new online training course designed to raise awareness of the symptoms of blood cancer among GPs is set to radically improve the rate of early diagnosis, bringing the UK up to EU standards and potentially saving around 1,000 lives a year.

Blood cancer support charity Leukaemia CARE, in collaboration with the Royal College of General Practitioners (RCGP), has developed the course in a bid to deliver better outcomes for the 34,000 people diagnosed with blood cancers in the UK each year.


When combined, blood cancers like leukaemia, lymphoma and myeloma are statistically the nation’s fifth largest cancer threat and third biggest cancer killer. And yet because many of the symptoms of blood cancer experienced by patients, such as persistent fatigue, night sweats, joint pain, bruising and recurrent infections, may also be linked with a wide range of other less serious diseases, 33% of blood cancers – more than 10,000 patients – are only diagnosed via the emergency admissions route, including accident and emergency.

Research shows that early diagnosis has a major impact on survival rates. For instance, the one year survival rate for myeloma patients diagnosed following a GP referral stands at 83.6% – but falls to 53.1% if diagnosis is delayed until the emergency admissions route3.

While online courses for GPs are available for other major cancers, this is the first of its kind for all blood cancers. Free of charge, it combines information on how to recognise the symptoms with case studies and, like all RCGP training courses, carries Continuous Professional Development (CPD) points – which GPs must complete to demonstrate that they are meeting the standards set by the General Medical Council.

The news comes as the UK marks its third Blood Cancer Awareness Month (1-30 September).

We interview Tony Gavin the Director of Campaigning and Advocacy at Leukaemia CARE and Dr Ishani Patel who is a GP and the Royal College of General Practitioners (RCGP) Clinical Lead for Early Diagnosis of Cancer and Quality Improvement

Question – What is blood cancer?

Dr Ishani Patel

Dr Ishani Patel

Dr Ishani Patel – Blood cancer is an excessive growth of blood cells. For diseases such as lymphoma and leukaemia, this can be an excessive growth of white blood cells. The white blood cell is responsible for immunity and fighting off infection. However, when there is an overgrowth or an excessive amount of white cells, patients can often present with symptoms such as tiredness, excessive sweating, bone pains, bruising and bleeding. That’s a very brief overview of what a blood cancer is.

Question – How do leukaemia, lymphoma and myeloma differ from each other?

Tony Gavin – That is a huge question because within those disease areas there are also other disease types. There are 90 different leukaemias and 60 different lymphomas. There’s about 5 or 6 main types of myeloma, as well as other types, so we couldn’t really begin to describe the differences between them.

Collectively blood cancers are a huge problem in the UK and they are very poorly understood. At Leukaemia Care we think of them as a Cinderella disease, tucked away in the background with nobody fully aware of them, but blood cancers are the fourth largest notifiable cancer amongst men and women. Indeed if you look at the mortality rates and the people who die from blood cancer, more people die from blood cancer than die from breast cancer, more people die from blood cancer than die from prostate cancer. The sixth largest notifiable cancer in the UK is malignant melanoma (skin cancer). More people die from blood cancer than are actually diagnosed with skin cancer.
That’s how significant the problem is and that’s why we decided we needed to do something to help general practitioners recognise the signs and symptoms of the disease.

Question – What do the stages of different cancers mean?

Dr Ishani Patel – The different stages correspond with how much the disease has progressed.

For example in the context of blood cancers and the subset myeloma, if you present to the GP and are referred onto a specialist, your 1 year survival rate is 84% because you are diagnosed at an early stage, so stage 1.

However if you present as an emergency presentation, which is a third of all blood cancers, your 1 year survival rate drops to 55% so that’s a late stage diagnosis, which could be considered stage 3 or 4.

It’s difficult to drill into the detail of what each stage means because it’s obviously different depending on the type of blood cancer and as Tony’s just mentioned there are over 100 different types of blood cancers just within that terminology.

Question – What are the early signs and symptoms of blood cancers?

Dr Ishani Patel – Signs and symptoms to look out for include tiredness, excessive sweating, bone pain, bruising, bleeding, and recurrent infections. These can all present as individual signs or as a cluster of an early blood cancer. However if patients experience loss of appetite or weight loss, those are obviously signs of perhaps a cancer that has progressed.

Tony Gavin – With the lymphomas for instance you might have lumps in the neck or lumps in the armpit, or lumps in the groin. And the other thing to look out for is that quite a lot of the symptoms can be defined by something else. They could be just a common cold or flu or even menopause for the older patient. It’s when these signs and symptoms are persistent that you really need to take notice of them.

Question – Who treats these cancers and how?

Dr Ishani Patel – If we were to look at a classic patient journey, the GP who thinks there is a collection of symptoms that are causing concern would arrange for blood tests and perhaps a urine test or potentially even x-rays within primary care. They would arrange for what’s called a fast track cancer referral, which is a two-week-wait cancer referral where the patient can then be met by a haematologist. However, not all patients experience the same journey because of the varying ways that they present.

If a patient presents with, for example, a neck lump or a lump in their armpit or groin, they may go straight to a surgeon because they need to get a tissue sample or a biopsy to get a diagnosis.

However if a patient that presents with these symptoms then has a blood test and the blood test itself is abnormal, then they may be routed to a haematologist. Not everybody sees a haematologist straight away because it does very much depend on how they present in the first place.

Tony Gavin – The problem with bone pain is you would probably be referred to an orthopaedic surgeon before they realize it could be myeloma for instance. Within the blood cancer specialist community, within the haematology community, there are people that will specialise in leukaemias, lymphomas, and myelomas, and indeed within the leukaemias you may get people that specialise with chronic myeloid leukaemia, and those that specialize with acute myeloid leukaemia, so it varies. There are generalists and there are very, very specific specialists.

Question – How effective are the treatments?

Tony Gavin – That’s a really good question but a very difficult one to answer because you will find Tony Gavindifferent treatments for the whole range of different disease areas. I can quote one disease area where there is really, really good news. About 12 years ago survival rates for chronic myeloid leukaemia (CML) were poor. If you were diagnosed with CML in 2000 for instance then your survival prospects would be 3 – 5 years. In 2001 a new drug called Imatanib was developed – a tyrosine-kinase inhibitor. This class of drug has completely and utterly revolutionised the treatment of CML. Patients that respond to these drugs will not die from CML, they will not die from the leukaemia. This particular class of drugs is amazing, it’s one of the best good luck stories going around. It is a huge step change in the treatment of that particular disease.

Question – Please tell us about this new online tool, what it does and what its value will be.

Dr Ishani Patel – Leukaemia Care and the Royal College of General Practitioners have come together to develop a one hour learning course for not only GPs but all primary care health professionals. GPs are legally and professionally required to commit and evidence their own professional development i.e. the time they contribute to their own education. What Leukaemia Care has recognised is that the other cancers have a lot of attention both in the media and within GP education and we didn’t want blood cancers to be overlooked. So what this course does is provide case based scenarios almost like it is in real life. As a GP you’re sitting in your consultation room and a patient presents with a cluster of symptoms and it challenges the GP to think about what their next steps would be. For example if a patient presents with tiredness and with a lump in the neck what would they do next? And then once they have submitted their answers and evidenced their own reflection, it then takes them through to the gold standard and through the NICE guidelines on what they should do next, how to ensure rapid investigation and how to ensure that the patient’s route to diagnosis is as quick as possible.

Question – What one piece of advice would you give to someone who has just been diagnosed with a blood cancer?

Dr Ishani Patel – That’s a very tough question because there are different types of blood cancers. What I would say is that something that does get overlooked with all cancer treatments is nutrition. I would advise any patient going through or preparing to go through cancer treatments that could include steroids, chemotherapy, stem cell transplants and as Tony was saying tyrosine-kinase inhibitors that having a high protein diet and ensuring their nutrition is adequate will support them through their journey especially with managing the adverse effects of treatments. That would be my input from a GP perspective.

Tony Gavin – From my perspective, I would echo what Dr Patel has said but also say that they are not alone. They need to get in touch with a specialist organisation like Leukaemia Care, which can support them through their treatment. They can go online to leukaemiacare.org.uk and they can talk to our specialist nurse or talk to our care line experts. We have a care line that operates 24/7 so they can phone us at any time for help and advice and we can also put them in touch with patients who have been diagnosed with a similar disease so they can share their concerns and their worries. The other thing I have to say is there are breakthrough drugs coming through all the time in all the different disease areas and some of the new treatments coming through are superb. So first of all, don’t lose hope, get in touch with an organisation like Leukaemia Care and we’ll put you in touch with other groups too if you need to speak to somebody else.

We have a wealth of information online too and there’s lots that they can do to educate themselves on the disease.

Question – Where can people go for more information?

Dr Ishani Patel – Leukaemia Care provides robust information that is easy for patients to understand. From a GP perspective, I would encourage GPs to go to the Royal College of GPs website and do the online learning exercises to then be able to communicate that back to patients.

Tony Gavin – If patients do need more information once they have been in touch with Leukaemia Care, we can signpost them onto other areas.

Cancer Research. Prof Dean Fennell, leading cancer researcher, gets us up to date with the latest cancer and Mesothelioma research


Prof Dean Fennell

Prof Dean Fennell

We are very proud to publish our latest interview with a  leading clinician.  Today we are interviewing  Prof Dean Fennell one of the world’s leading cancer researchers.   Prof Dean Fennell is currently Chair of Thoracic Medical Oncology at the University of Leicester. Top find out more about Prof Fennel and his work please go to his web page – http://www2.le.ac.uk/departments/csmm/people/professor-dean-fennell

In this interview Prof Fennell tells us more about his current research into Mesothelioma.  You can read our previous article on the subject here https://patienttalk.org/calling-the-cancer-community-new-study-harnessing-ground-breaking-science-offers-hope-to-mesothelioma-patients/

PATIENTTALK.ORG What is Mesothelioma and how does it differ from other types of lung cancer?

PROF FENNELL Well Mesothelioma is a cancer that is unique and it is unique because it is one that we know is caused by a specific substance.  Just in the same way that people would associate tobacco with the majority of lung cancers.  Mesothelioma is almost invariably associated with the substance asbestos.  This is a mineral which was used for its phenomenal insulating properties dating back as far as the Romans actually but the problem has been that with the use of asbestos in the 20th Century those individuals that have come into contact with it have been exposed to essentially a carcinogen that causes this disease and it take around thirty years to form.  I suppose the main thing that defines it in terms of how it behaves compared with lung cancer is that this is not a cancer that flies around the body and spreads rapidly to distant parts of the body.  It tends to stay within the chest.  It tends to create a straightjacketing effect around the lung and really the symptoms of this disease are related in part to the fact that this is confined to the chest rather than spreading to say the bone or the brain or other parts of the body.

PATIENTTALK.ORG How common is it?

PROF FENNELL I think this is a problem that we are facing with Mesothelioma.  We are in the wake of an epidemic.  The epidemic is not just a national emergency it’s part of a worldwide problem that we are facing.  Particularly in Europe and this because of the timing I think of the exposure.  The maximum exposure was seen in the order of around thirty or so years ago and when just now we are able to see a dramatic rise in the incidence.  So we see around 200,000 patients a year at the moment.  We think the rate is going to increase over the next decade it may extend beyond that but certainly up until the middle of the 21st Century we anticipate that the numbers will be much higher than historically seen, certainly before the seventies.

PATIENTTALK.ORG What is the typical treatment for Mesothelioma and the typical prognosis?

PROF FENNELL Well there is only one, what we can define as NICE approved standard of care for Mesothelioma.  About ten years ago a trial was conducted and the result of that trial is today’s standard therapy.  This is combination chemotherapy.  Patients will receive usually four to six cycles of that chemotherapy and following that chemotherapy that’s really it as far as the HS goes for many centres because there is no standard of care in the second line we are really guessing at what treatments to offer patients and this is really why we need major advances in terms of new drug based treatments for this cancer.

PATIENTTALK.ORG Can you explain what exactly is a clinical trial?  What the objectives of this study are and the risks involved?

PROF FENNELL In general a clinical trial is the formalised assessment of a new agent and the assessment is very often conducted particularly when wanting to establish how effective the drug is by randomising the drug compared to either the existing standard of care or if there isn’t one to a placebo which matches the experimental medication almost exactly.  So it is impossible for either the investigator or for the patient to know which is which.  It’s only when the analysis of the trial is done that one can work out, de-convolute the data and establish whether the drug was superior to nothing at all.  This is a very important mechanism for validating new drugs and what is considered to be the best standard of care but clinical trials are changing and particularly because our understanding of the cancer is changing dramatically we are now looking at the possibility or certain drugs and we have seen examples of this in lung cancer, examples of drugs that are so effective that a randomised trial simply isn’t necessary.  There is more than enough historical data out there to tell us that a new drug may be far superior to existing standards and therefore eastern US, this is not the case in Europe at the moment but within the US it was possible recently with lung cancer to approve a trial on a very, very small number of patients who were treated with very dramatic effects.

PATIENTTALK.ORG And what is the objective of this particular study?

PROF FENNELL Aside from chemotherapy, maybe four to six treatments of the standard chemotherapy, is the standard of care and when you stop the treatment the cancer comes back.  So the main purpose of this trial is to evaluate a new type of approach for treating Mesothelioma. It’s sort of a two hit approach­.  You have the chemotherapy first of all that gets initial control of the cancer and then you stop the cell that normally causes the cancer coming back, these are the cancer stem cells, you stop them from growing by using a specific stem cell targetting drug and one of the drugs that we are looking at here seems to have that property, that it can target stem cells. In the process of doing this, what you’re doing is targeting a minority of cells within the cancer with low toxicity. As a consequence this drug can be administered and administered until such time as the drug has to stop because the cancer’s grown again but the main objective is to try and see if the cancer can be suppressed for longer. Where this type of approach that’s been looked at in other cancer’s such as lung cancer the results have been very impressive. This has led to a change in practice where maintenance therapy this continuation second hit as it were has been shown to extend benefit for patients.

PATIENTTALK.ORG What would be the risks involved?


PROF FENNELL Well I think risk of any drug trial must always be balanced against the benefits. The risks by and large are always associated with side effects.  Of course many people will be aware that chemotherapy has an associated well recognise constellation of side effects, nausea for example or other unpleasant side effects.  We can do a lot to control those sufficient that patients even in some cases can get back to work or travel that sort of thing whilst they are on chemotherapy.  With a new drug, I think the trend that we are seeing is a very encouraging one that a lot of the new agents seem to be much less toxic, much more tolerable and orally available.  They can be taken as a tablet and as an injection.  So I think the first and most important risk for a patient is what will the drug do to me in terms of harm, in terms of side effects and I think with the drugs that we are looking at in this particular trial I think that’s actually a relatively low risk.  The other risk of course do I get the drug and if I don’t what happens?  This is an inherent part of any randomised study and certainly something patients will always need to consider when entering a randomised controlled trial.

PATIENTTALK.ORG You mentioned the risks are quite low with this one but how are patients, participants protected from harm?

PROF FENNELL With clinical trials of any sort now because of the very significant legislation that’s based around what was termed the EU directive of the trials there is an extremely vigilant monitoring process that takes place to look for side effects, to look for any adverse effects that could arise very early on in the study.  What I think is extremely important is that a drug which is the one that we are evaluating for Mesothelioma or any drug that is going forward into what we would describe as a more advanced trial, randomised trial has been explored extensively in safety testing and so we have a fair understanding of the tolerance of this drug and the safety of the drug before we even enter a trial like this.  Nevertheless as you expand the number of patients who receive the drug there are potentially rare side effects that you are to look for and so the pharmacovigilance process is a very efficient one at detecting and reporting these.

PATIENTTALK.ORG And why should people participate in this study?

PROF FENNELL Well I think the first thing I have to say actually is that I don’t think any patient must participate just to use that term. All clinical trials, all forms of clinical research are really there I think to offer patients an option and the option is whether or not to receive the drug that may or may not, I say may not have an additional clinical advantage over and above the standard of care. Many patients will consider this very carefully and based on what we have mentioned which is the toxicity vs safely issue, the possibility and rational behind whether this is a drug that could work. I think patients will make that choice and patients are always very often given time to make these decisions. What I think is really critical for patients is that they need to be made aware that these options exist in the first place and so providing information about clinical trials – whether it is the one that we are currently involved with or other trials which are ongoing in the UK. I think patients need to know that these exist so that they can get access to what could be life enhancing treatment.

PATIENTTALK.ORG What are the exact criteria you require for the study?

PROF FENNELL Well patients who are being treated with chemotherapy who are in the process of being treated with chemotherapy and who are benefitting from it. What I mean by that is there are maybe a fifth of patients who will have the chemotherapy in whom the cancer is programmed not to respond. These are primary chemo-resistant cancers. Patients who have chemo-sensitive tumours actually have either a response or shrinkage of the cancer or a stable disease. These are the patients who would be eligible for any for any form of maintenance treatment such as the one we are exploring currently. So if a patient is on treatment and feels that things are going well and their doctor feels that things are going well, this is definitely a trial to at least consider.

PATIENTTALK.ORG And what would a participant need to do to take part?

PROF FENNELL I think we are doing our best to communicate with all doctors throughout the country who treat Mesothelioma so that they are aware of the option to enter a maintenance therapy trial but patients should be empowered with the knowledge that these trials exist and if they are keen to know more, certainly find out more. And that can be done through the information resources that are present through Cancer Research UK and in particular Mesothelioma UK. There are people that one can speak to actually through Mesothelioma UK who are more than happy to provide information about for example where the trial is taking place locally.

PATIENTTALK.ORG What one piece of advice would you give to somebody who has been diagnosed with Mesothelioma?

PROF FENNELL I think that this is a devastating diagnosis to receive and although the initial news the patient may receive may be extremely nihilistic; I think it is important to be aware that we do have new trials which are coming, new trials which are presently active.  It is quite clear I think, and the Government supports this notion, that clinical trials associate with better outcomes for patients whether it is through closer monitoring or the actual implementation of new agents and as such patients should not feel that they are not entitled to get access to these. It is something that a patient should really enquire about and that it something that can only be for the greater good. If these trials are positive then the faster we can enrol them, the faster we can get the data, the faster we can get the results and if positive hopefully make these medicines for everybody.

PATIENTTALK.ORG So what is the typical prognosis?

PROF FENNELL Patients are often told that survival following diagnosis of Mesothelioma is about a year. Now that of course will vary between many patients – some may have a much better prognosis than that. We are very interested in trying to understand the genetics behind those sub groups of Mesotheliomas – some can be really quite explosive and grow very very quickly indeed and those are associated with prognosis maybe in the order of several months, maybe even weeks.

Kidney Cancer: Talking about Kidney Cancer – share your journey or find out more!


The purpose of this blog post is to provide a forum for people living with kidney cancer, also known

kidney cancer

kidney cancer


as renal cell carcinoma or RCC. We also hope to provide information for caregivers and family members as well as to help us raise awareness of kidney cancer.

Firstly what is kidney cancer?  It is, in fact, the eighth most common cancer.  Nearly 10,000 people are diagnosed with kidney cancer in the UK each year.

According to the UK’s NHS web site the signs and symptoms of kidney cancer can include:

  • Blood in your urine
  • A constant pain below your ribs
  • Lump/s in your stomach area

However, they suggest that around 50% of people with kidney cancer do not present symptoms at an early stage and the disease is diagnosed via tests for other things.  But during my career as a researcher I was told that, in fact, the figure is closer to 80% but I’ve not been able to get confirmation of this.  If you have any information could you share it in the comments box please?

As always if you are in any way concerned about these symptoms it is vital that you see a healthcare professional as soon as possible.

Like many other cancers, kidney cancer is treated with chemotherapy, radiotherapy and surgery.  Obviously various other medications can be used as well.  MacMillan has a good overview which you can see here http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Kidney/Treatingkidneycancer/Treatingkidneycancer.aspx

But, as we said, our main objective with this blog is to provide you with a forum to share your experience of kidney cancer.  Either as a patient, a caregiver or family member.

Anything you have to say is of interest but you might wish to think about the following questions.

a)         Can you tell us the story of your diagnosis. Who provided the diagnosis and when?

b)         How did you and your family learn about the disease generally after the diagnosis?

c)          What symptoms or events prompted your diagnosis of kidney cancer, if any?

d)         What physicians/specialists have you seen in connection with your kidney cancer? Who do you see on an on-going basis?

e)         How do you manage the disease on a daily basis?

Have you had to change your diet or lifestyle to cope with the disease?

f)           What advice would you give to somebody who has just been diagnosed?

 

Please feel free to use the comments box below to share your kidney cancer journey.

Many thanks in advance.