Monthly Archives: September 2010

Expert says current cancer care is 'wasteful, ineffective' and not best for patients

Millions of people now survive cancer, thanks to better detection and treatment.

But in Britain this is placing an increasing demand on the NHS system that deals with aftercare, according to cancer expert Professor Jane Maher.

Writing in this week’s ‘Scrubbing Up’,  she says the current system “is wasteful, ineffective and not the best way to spot many recurrent cancers”.

Follow-up

At the moment, cancer patients who survive initial treatment enter what is called the “follow-up” system – regular appointments to check that the cancer has not returned.

Traditionally, follow-up involves out-patient department visits with a consultant, backed up with diagnostic tests.

But the tradional way of doing things is failing patients.

According to Prof. Maher there is  little evidence that this method is the best way to spot recurrences of cancer, or the other possible long-term health consequences of being treated for cancer.’

Case Study

Gigi would agree with the Professor.  Five years after her initial lumpectomy and course of hormone pills, she is feeling bewildered.  “I find when I go for my check-ups it seems to be a case of ticking boxes.  Right, that patient has been seen.  Next please. And there is no time to ask questions.

Last time I had vague fears.  One always imagines that any ache or pain might – just might – be cancer returning.  I finally maanaged to mention to my doctor that I had a painful arm, and could this be cancer had spread to my bones? He pooh poohed my worries;  but eventually, when I saw another doctor he found that I had a tear in my muscle, and he said that this must have been very painful.  It was, but my original Consultant had made me feel I was worrying over nothing.

Then I have problems ‘down below’.  I found out about a Bowel Cancer Test, but surely this should have been mentioned to me by my Consultant, or an automatic alert from the hospital?  Or even a ‘check sheet’ when I was discharged?  The test was very easy to do, so no problems there.  But – the results show I should go for further investigation.  I have a painful muscle condition which means I should have extra pain relief if anyone mucks about in this area, so I phone the hospital to ask how they treat my type of patient.

‘We treat you just the same as everyone else’ I was told.

This was NOT what I wanted to hear.  So, I start asking questions.

“Will I have a anaesthetic during the colonoscopy?”  This is normal in hospitals in Europe.  ‘No, in fact WE may not even give you a sedative’ says callous nurse.  Really, where do they find them?”

So Gigi is going privately, where she has been assured they know exactly what she requires, and will make sure she gets it.

D-I-Y

Recent work suggests that around 70% of recurrence of breast cancer could be detected either by patients noticing symptoms themselves, or by surveillance testing alone, with a face-to-face appointment if needed.

But this is only possible if patients are helped to understand their illness, can access regular tests and know how and when to contact specialists if problems arise.   Were YOU given any advice when you left hospital about self-testing?  This should be obligatory for everyone.

The current system is just not meeting cancer survivors’ needs.

One in five people living after treatment for cancer will develop long-term emotional, psychological and physical problems that seriously affect their quality of life.

Yet there are few, if any, NHS services specifically for cancer survivors, and the National Cancer Survivorship Initiative is way off reporting its final outcome.

.
Lack of suitable treatment and advice

This not only affects quality of life, but also leads to unnecessary illness that costs the NHS – and the UK – dearly.

It means people can’t get back to work and may need treatment for other conditions caused by cancer or its treatment, coming on months or even years later.  But as Prof. Maher says, “This cannot continue.  The NHS needs to radically transform the way it provides support for patients following hospital treatment”.

Doctors need to be able to assess the level of risk, identify which patients need regular face-to-face appointments and specialist support, and which patients could, given the right tools and skills, manage their own condition.

Fundamental changes in the way that aftercare is provided would be cost effective, both to the NHS and to the wider economy.

Macmillan’s own research shows 90% of survivors have both physical and emotional needs after treatment, with many unable to return to work as a result.

If patients are equipped with information, and understand when they need to see a health professional or when they may need a diagnostic test, this will reduce the need for unnecessary follow-up appointments.

This, in turn, will free up resources which can be reinvested in the new aftercare services for people with cancer. It costs much less to provide a person with the skills and knowledge to self-manage their condition, and provide support if needed from a nurse in the community, than it does to make patients travel to hospital for a follow-up appointment that doesn’t take into account all of the patient’s needs.

Give cancer patients the tools to self-manage, treat us like intelligent human beings, give us effective rehabilitation services that support us getting back to work, and this would mean:

  • fewer people claiming benefits
  • more people paying taxes
  • employers retaining experienced staff.

Which is a win, win, win situation for everyone.

Enhanced by Zemanta

Is this book on Inflammatory Breast Cancer any use? Or will it be useless?

If you are going to spend your hard-earned cash on

this book, will you like it?

Or find it useless – flippant – superficial?

Well, if you are a patient, I hope you will find helpful, useful information – with some humour, in this layman’s book on Inflammatory Breast Cancer.

And if you are one of my favourite nurses – you will have a wry smile at the way I talk, and thank heaven not all patients were like me!

This is written from a patient’s viewpoint.  So don’t be shocked by the nicknames I gave some of my medics.  Or the fact that I litter the book with names of commercial companies that made clinically-trialled products that helped me.  Delicate souls will be horrified by the use of company names, but doctors and nurses have no hesitation on giving out names of drugs, and those are made by companies who measure their profits in BILLIONS – not ordinary millions.  So why shouldn’t we be given names of products that can help with the awful side effects of these drugs?

If you are a doctor, and treated as a Higher Being,  I might not give you due deference you expect  – especially if you were ‘Dr. 30-second’ or ‘Pompous Professor’.

And if you like to blind us with science, you won’t like the 17 page Glossary.   I have just been reading a book ‘designed for patients’ which thinks it can get by with an eleven- yes, 11 – word Glossary.

If you are a nurse, this is NOT a medical text-book.  You will scream at the way I re-name medical procedures, and question the way You are taught to treat us.  And ask why a Multi-disciplanary Team NEVER includes the most important member: the patient.

Cancer is a frightening condition;  Inflammatory Breast Cancer more so than many.  So you must excuse us if we get stroppy, and use black humour to keep us going.

You and the Team are there to give us the facts – I tried to remember what I was feeling at the time – and the sometimes silly things that were bothering me, when I should have reacted differently according to text-books and nurses’ training.  But then we are human, so sometimes don’t behave the way we are told to.

And TLC is sometimes totally forgotten in medical training – but we respond to this far better than being told  “YOU are only a patient”.

I have NO medical training, but justify writing this book because I can call myself an ‘Expert Patient’.

Has this been endorsed by a British Hospital? Whew!  After comments about some hospital treatment I received, and after the things I have said about superior treatment in European hospitals –  not B  likely!

But if you like Christine Clifford Beckwith’s black humour and her take on situations cancer patients find themselves in (well, you’ve got to laugh or else you would cry), then I hope you will like this book.

http://www.amazon.co.uk/Inflammatory-Breast-Cancer-Explanation-Support/dp/184829039X/ref=sr_1_1?s=books&ie=UTF8&qid=1283185964&sr=1-1

Enhanced by Zemanta

Easy-to-read, compassionate guide to Inflammatory Breast Cancer

INFLAMMATORY BREAST CANCER.

VERITE REILY COLLINS

KEY SELLING POINTS
  • Compassionate guide for suffers of rare cancer.
  • First book on the subject.
  • Easy to read, serious issues treated with humour.
BOOK INFORMATION
ISBN: 9781848290396
Pub Date: August 2010
Format: paperback
Extent: 144 pages
Inflammatory Breast Cancer (IBC) is a highly aggressive and thankfully rare type of breast cancer, which is not yet widely recognised both by the public and the medical profession.

When a patient presents to her GP, there is often a misdiagnosis in the first instance. This is because the symptoms include swelling, redness and heat in the breast, but often no discernible lump. Consequently the condition may be only diagnosed as a less serious dermatological problem.

The author is herself a survivor of breast cancer and can therefore write with expert knowledge and experience. She discusses with compassion, insight and humour everything a person ought to know about IBC –

initial fearsdiagnosis – treatmentoperation – post-op care. She discusses the different forms of treatment, and also the side issues – where to find support from carers and friends, what to eat, how/where to go on holiday, etc.

A valuable resource of information both for the patient and the professionals involved.

Of course the book also tackles the scientific and medical issues and the various drugs used in the treatment, but Verite writes throughout in a clear, simple style that enables easy understanding of the more complex details.

There are many books on breast cancer, but this is the first to specifically discuss inflammatory breast cancer. It is a guide book that will be immensely valuable to IBC sufferers, their carers, family and friends, and to GPs and oncologists around the world.

CONTENTS; 1. Introduction 2. What is Inflammatory Breast Cancer? 3. Diagnosis 4. Help – what should I ask doctors and nurses? 5. Where do I find sensible website info? 6. Operation 7. After your op – returning home 8. Treatment after the operation 9. How will I feel? 10. Chemotherapy 11. Radiotherapy 12. Hormonal drugs 13. Handling side effects from chemo and hormonal drugs 14. Complimentary and alternative therapies 15. Why have massage? 16. Now I want to know – where to find help 18. Carers and friends – how they can help 19. Food, weight gain/loss, what can I eat 20. Take a holiday – but where/how? 21. Doctors are humans – how to deal with them 22. Having fun – where to go for information on what’s good 23. The help minefield 24. Regaining my life – and handling change 25. Contacts, organisation, charities, international agencies and other helpful people 26. Index
This is what the publishers say – I say that this book should be issued with a health warning, as I AM NOT MEDICALLY QUALIFIED.

But I wrote the book from the heart, trying to tell readers what they MIGHT expect, so that treatment didn’t come as a shock.  But also, where I could, suggesting ideas and products that myself and others had employed, to try and make the treatment experience easier.

When I was treated, I found that the Internet was incredibly helpful – so I have tried to include as many approved web addresses as possible, to make it easier to find things out.  Readers can use the book as a ‘shopping list’ of contact information.

Enhanced by Zemanta

Going ski-ing? Take a day off to improve your health

Snowboarder in the halfpipe.
Image via Wikipedia

Taking advantage of a winter holiday

As you head off to the slopes, you are going into an area that David Cameron says has better health care than offered in Britain.  So why not take advantage of being on the spot to get a top-notch medical MOT whilst you are in the area?

From Finland to Italy, European hospitals are up-to-date, work with new techniques and equipment, and very often if you have to pay for a consultation, are cheaper than the UK.

And friends who have taken half a day out to find out if anything can be done about niggling problems, come back raving at the service.  Comments like “I’ve been up and down Harley Street, and had to go to France to find out what was wrong” (Michael C), and “my knee just wasn’t right after a knock on the playing field – but it took an Austrian doctor who deals with Olympic skiers just spent a few minutes to find out exactly what was wrong.  I discovered afterwards that UK football clubs fly in their players to see him”  (Barrie F-S).

And if you have anything wrong with your legs, almost certainly the highly-experienced medical teams in ski resorts will be streets ahead of what the NHS can offer.

So it makes sense to go to a local medical centre, hospital, rehabilitation centre, medical spa etc.  and book in for a consultation to sort out medical niggles – or even get post operation and medical drug side effects sorted out.

It won’t be expensive – unless you are going to the creme-de-la-creme, Clinique La Prairie in Switzerland.  But if you can afford this you probably already include a check-up every time you visit the country.  The medical team there, led by Dr. Walli, are some of the top experts in the world.

So how do I find a suitable venue/doctor?

  1. Ask your GP.  Some are becoming very knowledgeable about European medical care.
  2. Ask friends – more and more British are ‘using’ European doctors, or have friends who live in the country and can recommend doctors/treatments.
  3. Send an email to the Tourist Board of the resort where you are staying.  It is their job to advise all visitors about what’s available in their resort.  Russians are fast becoming the most sought-after visitors, and they frequently go abroad for a medical check-up and a holiday.
  4. Or contact the Government-funded tourist board of the country which will be in London.  Ask them.  Some boards have a special department dealing with medical tourism, and they will all be able to refer you to centres approved by their relevant Health Ministry.

Warning! Before you make an appointment, go on the Internet, Google the clinic / doctor’s name, print out the information and ask your doctor to check the credentials.

What will it cost?

You will be given a list of prices;  if one clinic is very much cheaper than another, then you know why to avoid this.  Otherwise costs are often lower, in some cases much lower, than in UK.

Do they speak English?

English is widely spoken.  Speaking English is the mark of an educated person, and many have done training in USA and Canada.   I even met an eminent Swiss surgeon who had gone to Glasgow General because stitching up noses, ears and limbs after Saturday night fights “gave me the best training in invisible stitching”;  which is now used in plastic surgery on Hollywood celebrities.

What happens at appointment?

The Clinic system is almost unheard of.  You will have time to talk (very often the first appointment will be an hour).

You will have already given details of what is your problem, so the doctor/specialist will have a good idea of what you will need.  If they then say you need tests, scans, or to see another specialist, an appointment will already have been pencilled in so you will probably walk straight down the corridor into another room.

Most countries, particularly France, Italy, etc. have more doctors per head of population than we do in UK, so often the doctor will have time to spend a few minutes on ‘pleasantries’ and getting to know you, before business.  Not always though;  I went to see a brilliant dermatologist at La Roche Posay who may have spoken English, but as all he did was grunt – frequently – as he examined all my numerous skin lesions, I wasn’t sure!  But his visit did the trick!

What if I decide to go on the spur of the moment?

I have often done this.  In Europe if you think you need a doctor, you are regarded as being intelligent enough to decide this yourself.  What you may have to do, if you haven’t given the Receptionist enough information, is to go to a ‘gatekeeper’ doctor, who will then refer you on to the appropriate person.  You will have to pay for their services, but generally this is minimal, and you will see someone within a short time.

And don’t worry if the hospital your friends take you to is private or part of the country’s national health service.  Having been taken to a local hospital in the tiny town of Klagenfurt, in Austria, I was so dazzled by the shining chrome, spotless atmosphere and fantastic equipment I kept on handing over my credit card.  Which was refused – it was all part of their health service.

What should I take?

1.  Referral letter from your doctor – if possible faxed or emailed beforehand.

2.  All X-rays – if these were taken in an NHS hospital you may have to pay for these.  Again if they are on disc you can send these in advance, or your doctor will do this.

3.  Results of any tests.

4.  List of medicines you are taking with amount, numbers of times a day/week and if possible the brand name and the ‘medical’ name  (prescribed, over-the-counter and herbal supplements)

Finding more information, and remember in Europe Medical Spas often specialise in top quality medical rehabilitation:

AUSTRIA

Österreichischer Kurorte- and Heilbäder Verband (Association Health Spas and Centres)  http://www.oehkv.at

FRANCE

Official French site for thermal spas:at the moment it is in French, but it is simple to browse   http://www.cneth.org

Information on Medical Spas in the Rhone-Alpes region www.balineae.fr

http://www.france-thermale.org/

GERMANY

These sites are all official German health service sites:

http://www.german-medical-online.com/Category/Hospitals/
http://www.germanmedicine.net/

*Cancer Information Service (part of German Cancer Research Centre)
krebsinformationsdienst@dkfz.de

www.dkfz.de/en

German Cancer Association
www.krebsgesellschaft.de

deutsche@krebshilfe.de
http://www.krebshilfe.de/english.html

ls/clinics/medical centres

And enjoy a new experience!

Enhanced by Zemanta

Latest information from Fred Hutchinson Cancer Research Center

Fred Hutchinson Cancer Research Center
Image by camknows via Flickr

Fred Hutchinson Survivorship Program

The Survivorship Clinic at SCCA offers treatment, education, and support in the years after cancer treatment is completed.

Their Survivor website offers interesting and useful articles on a variety of topics;  some of latest posted on their website

http://www.seattlecca.org/fred-hutchinson-cancer-research-center-survivorship-clinic.cfm

deal with the following topics:

Incidentally, I mention the research carried out at this centre in other posts on this website – it is one of world’s foremost research centres, and has produced a lot of helpful information for patients.

Enhanced by Zemanta

Top conference provides evidence backing exercise and yoga

Reverse Grip Cable Bicep Curl - Finish
Image by MyGymworkout.co.uk via Flickr

This year’s discussions at ASCO

came up with two easy-to-understand studies.

Eash year one of the top Cancer Conferences is run by ASCO (American Society of Clinical Oncology).  Oncologists from all over the world journey to Chicago to hear the latest research, and this year the  conference came up with two helpful studies – one on benefits of Exercise for cancer patients, and the other on Yoga.

1.  There was a report on how Exercise and  Diet May Benefit Patients Receiving Cancer Treatments, saying Patients who exercise daily and eat a proper diet while receiving treatments for breast and prostate cancer may improve their overall health.

A team of researchers enrolled a total of 50 participants into the trial, which included 30 female breast cancer patients and 20 male patients who have been diagnosed with prostate cancer. The participants were aged 35 to 80 years, and were either currently receiving cancer treatment or were treatment-free for one year.

Each patient was recommended a specific exercise and diet plan that was based on their weight, overall health as well as what type of cancer treatment they were receiving.

The results of the trial showed that patients who were receiving treatment and following appropriate diet and exercise habits were less fatigued and didn’t experience as many side effects caused by the cancer treatments.

Eleanor M. Walker, division director of breast services at Henry Ford Hospital, stated that “using exercise as an approach to cancer care has the potential to benefit patients both physically and psychologically, as well as mitigate treatment side effects.”

Proof of the pudding etc. comes with the fact that many medical insurance companies will actively encourage clients to include a specialised exercise recovery programme after surgery and treatment – and if those tight-fisted accountants will pay out for this – it must work!

2.  The largest, randomized controlled study ever to examine the value of Yoga specially designed for cancer survivors, known as YOCAS, was unveiled at the ASCO 2010 annual meeting.

Fatigue and poor sleep are two of the most common side effects of surviving cancer, seriously affecting quality of life for cancer patients, about 65% of whom report having problems sleeping after treatment is over.

Lead investigator Dr Karen Mustian, assistant professor in the departments of radiation oncology and community and preventive medicine at the University of Rochester Medical Center in New York, told the press that:

“Very few, if any, treatments for the sleep problems and fatigue that cancer survivors experience work well for very long, if at all.”

So  the study looked at simple ideas to help patients, and focussed on National Cancer Institute funded randomized, nationwide, multicenter trials.  They assessed the impact of a yoga program in 410 survivors of early-stage cancer. The patients reported having sleeping problems between 2 and 24 months after finishing their cancer treatment.

Patients were randomly assigned to one of two groups: one group had only the usual post-treatment care (the control group) and the other group had the usual care plus participation in a specially designed 75-minute yoga class twice a week for four weeks.

The University of Rochester designed YOCAS (Yoga for Cancer Survivors) program taught the participants a series of mindfulness exercises that covered breathing (pranayama), meditation, visualization, and 18 different poses or asanas where the body is seated, standing or lying down.

Researcher Mustian said YOCAS was a blend of two forms of low-intensity types of yoga: Hatha and restorative yoga. She described the exercises as “gentle …. not some kind of power Vinyasa yoga class,” according to a CNN report.

Results were excellent – for more information go to American Society of Clinical Oncology site.

So get out the Yoga mat, or dust down your running shoes, and get active!  www.asco.org

Enhanced by Zemanta

Picker Institute evaluation of Survivorship pilot surveys

This is really aimed at medics – might send you to sleep!


The Picker Institute say they are a not-for-profit organisation that makes patients’ views count.

Last year they issued a survey on the test sites for the NCSI Test projects.

It produced some positive responses, but one wonders how this might have been                                                                         influenced by the fact that the hospitals where they were treated obviously care                                                                             about their long-term survival – so encourage patients and take an interest in them.

It would be interesting to see what the responses would be, if patients from other hospitals who tend treat patients on  ‘production lines’  might respond.

Evaluation of National Cancer Survivorship Initiative Test Projects  www.improvement.nhs.uk/cancer

Enhanced by Zemanta

Survivorship programme addresses

Some helpful web addresses for Survivorship issues


UK

Are you a young adult and a cancer survivor ?

The Christie Hospitals says following completion of your treatment for cancer we recognise that you may still face many challenges: education or career?  staying fit and keeping well?  getting insurance or a mortgage?

To help The Christie runs a  Survivorship Course!  The course is free of charge, although places are limited.

It covers

  • Coping after cancer (social and psychological issues)
  • Late effects of treatment and fertility issues
  • Financial issues, such as how to obtain mortgages, benefits and insurance
  • How to get back into education and on the employment ladder
  • How to help yourself keep fit and healthy

Next course  Sept 16th – Nov 4th Manchester   Time: 18:30 – 21:00 (including refreshments)

For further information, or to register for the course, please talk to either;

The National Cancer Survivorship Initiative was launched in September 2008 and is a key initiative of the Cancer Reform Strategy (2007).  www.ncsi.org.uk

USA

Dana-Farber  –  Perini Family Survivors’ Center

Kenneth Miller, MD, and Lisa Diller, MD

Kenneth Miller, MD, and Lisa Diller, MD

Advances in our ability to detect and treat cancer have led to greater survival rates. But we have learned that for some, cancer survival comes with a price and life is never quite the same. The Perini Family Survivors’ Center was established to advance clinical care and conduct research on cancer survivorship. The Center provides care and conducts patient-oriented research in the Lance Armstrong Foundation Adult Survivorship Clinic and, for children, the David B. Perini, Jr. Quality of Life Clinic. The Center also disseminates information on the medical, emotional, and psychological challenges facing today’s population of cancer survivors.                                                                                                                              http://www.dana-farber.org/res/integrative-research-centers/perini-family-survivors-center/default.html

Fred Hutchinson Cancer Research Center’s Survivorship Program provides clinical care, patient education and research opportunities to patients who have survived cancer and are not in active cancer treatment or are in long-term therapy to prevent recurrence. Our services are provided through the Hutchinson Center and Seattle Cancer Care Alliance (SCCA) and supported by the Lance Armstrong Foundation.                                                                              http://www.fhcrc.org/patient/support/survivorship/

MD Anderson’s Survivorship Clinics. You are finished with your active cancer treatment and moving to the next phase of your life and next phase of your care. You may find your life returns to what you knew before you had cancer. On the other hand, you may find that physical, psychosocial or financial concerns continue because of earlier treatments. Patients often call this the “new” normal.

MD Anderson’s Survivorship Clinics are here to help you develop a plan for your ongoing health care. Each clinic focuses on a specific cancer type, tumor location or treatment:                                                                                                     http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/survivorship/survivorship-clinics/index.html

Cancer patients face unexpected obstacles long after treatment

pink ribbon
Image via Wikipedia

Two major obstacles face cancer patients after treatment

1.  Friends assuming you are completely cured

2.  Doctors ‘abandoning’ cancer patients

Until recently, the tendency was for the medical profession to sign one off after surgery, chemo and radiotherapy – and you felt they washed their hands of you.  However positive you wanted to feel, side effects from the drugs you have to take, and after-effects of treatment cast up problems – and it seems it is no-one’s responsibility to deal with these, or help you.

Are you the only one who keeps on forgetting things – develops joint pain – keeps on being sick – suffer fatigue – or produces a host of other problems cropping up just when you want to get with life?

Now at last the medics are beginning to realise that, however much WE want to get on with life, residual problems will be around, and they must help us to handle these.

This is a fairly new development.  Until recently, anyone diagnosed with cancer was extremely lucky to survive for long.  However, if they did survive long hospital stays and basic care, they often made a good recovery.  But there were no ‘miracle’ drugs to help them.

Drugs

Today, thanks to ‘new’ drugs, we are likely to live much, much longer.  However, what no-one realised was that these drugs have long-term side effects, and at a Macmillan conference one of their doctor speakers said that ten years after diagnosis, 60% of patients will be presenting at the GP’s with long-term side effects.

The Oncologists have latched on to these drugs that have produced brilliant results in clinical trials.  What very few of them have taken on board is the fact that these drugs have many very serious long-term side effects.  Yes, we will now live a lot longer.  But no-one has bothered to set up any assistance or training in how to deal with the results of subjecting our bodies to powerful ‘mini-chemo’ on such a prolonged regime.

What’s happening in the States

There are 12 million fellow cancer survivors there , according to Livestrong, the nonprofit group founded by renowned seven-times Tour de France winner, cyclist Lance Armstrong.

“Cancer treatments are (increasingly) more successful,” says Dr. Catherine Alfano, program director of the National Cancer Institute’s Office of Cancer Survivorship. ” But, she points out, “Even while we have more diverse types and more successful treatments, they all still exact a toll on the body.”

As a result, long-term survivors are now the subjects of considerable medical attention and research.

Last year Livestrong surveyed more than 2000 cancer survivors about their concerns.  Here are some of the major health issues reported:

Fatigue

Many people know that chemotherapy treatments can cause profound tiredness, but they may not realize that fatigue can persist in some survivors for years. “We’re not entirely sure, but it may be due to unchecked inflammation in the body,” says Dr. Patricia Ganz, a professor at UCLA School of Medicine. Treatment could possibly push the immune system into overdrive, and in certain patients, the resulting inflammation could increase fatigue “as if the body were constantly fighting off a bad flu,” Dr. Alfano adds.


Pain
Kenechi Udeze was four seasons into playing for the NFL’s Minnesota Vikings when searing migraines sent him to his physician in 2008. The headaches turned out to be a symptom of acute lymphoblastic leukemia. Udeze underwent a bone-marrow transplant the same year and was declared cancer-free. But the nerve damage, or neuropathy, from the aggressive treatment he underwent ended his pro-football career. “Nerves regenerate very slowly, and my feet, my grasp, they just weren’t what they were,” explains Udeze, now 27 and living in Seattle. The former defensive end has also been left with severe chronic pain. “In the middle of the night, my toes and ankles contract so hard, it’s like a cramp times 10,” he says. Neuropathic pain can be caused by some forms of chemotherapy. Radiation and surgery may also leave the patient with scar tissue, leading to painful tightening of the skin’s surface or internal adhesions. “Many cancer survivors need pain control,” Dr. Ganz says. “They need palliative care like you get at the end of life. Only here, they’re not dying and suffering–they’re living and suffering.”

Cognitive impairment
Last year in the Journal of Cancer Survivorship, 74 women were interviewed at least one year after the completion of their breast-cancer treatments. One of their most common complaints was what patients and doctors call “chemo brain,” a loss of memory and an inability to concentrate. No one is sure why it occurs, Dr. Alfano says. “Survivors are telling us they’re having cognitive problems, but when we give them standard neuropsychological tests, we can’t detect impairment. It may be the tests’ fault, so we’re using brain MRIs and PET scans to measure brain function.” According to Dr. Alfano, one current theory is that people who carry a certain gene associated with Alzheimer’s may be more vulnerable to chemo brain than people without the gene.

Infertility and sexual dysfunction

Cancer treatment can leave many patients–men and women–infertile. Even when it doesn’t, it can impair a woman’s fertility by reducing her total number of eggs. Some survivors also report suffering sexual dysfunction after they’ve been pronounced cancer-free, which could possibly result from a combination of physical, hormonal, and psychological factors.

As research on cancer survivors proceeds, solutions to their problems will likely be discovered or devised. For now, Dr. Alfano says, “physicians shouldn’t talk about patients going back to normal after treatment. We want to help people find the best ‘new normal.'”

Enhanced by Zemanta

Pay attention to Hands and Nails in Winter

An example of a French Manicure, acrylic nails...
Image via Wikipedia

HANDS

If your nails keep catching in your clothes, and you find it is painful to get dressed, shake hands, etc. you are not alone. And winter winds just leach moisture out of your hands.

After Chemo or radiotherapy, or when you start on hormonal drugs, you might suddenly find your hands and feet develop horrid horny nails, and / or splitting skin, and you can almost see your fingernails disintegrating as you use them.

You may even develop Carpal Tunnel Syndrome (CTS), a side effect of the Anastrazole drug, Aramidex.

When I developed CTS doctors told me this was caused by RSI (repetitive strain injury) and to stop using my computer.  I couldn’t work for three months, but it was still as bad.  So I had a procedure which sounds horrible – they inject you in your wrist with a long needle – but was actually genuinely painless for me.

This cleared it up, but it wasn’t until a year later I discovered that CTS was a side effect of Aramidex, and got the makers to include this information in the information sheet.  I was also very annoyed that I missed out on three month’s work, all because the doctors hadn’t know that the drug they had put me on could cause CTS.

We can feel stupid asking for help;  we see nail problems as minor, and believe doctors will think we are vain if we ask for assistance.   Well don’t.  Nails are an  important part of our body, are there to protect our hands, and wouldn’t be there if they were just for decoration.

Of course you WILL use rubber glovers – won’t you? !!! That is probably the single most important facet of hand care.  Having said that, you will find that drugs make your hands incredibly rough – but products that are really helpful are:

Clarins Hand Cream – There is a lovely story about their hand cream.  After her last visit to Australia, H. M. The Queen insisted she had to get off the plane at Singapore as one of her Ladies in Waiting had told her to buy this wonderful hand cream made by Clarins.

At the Duty Free Shop, Her Majesty, unlike a certain ex-Prime Minister’s wife, believes it is sensible to save money where you can, and bought her own.  The shop assistant was very happy to give it to her, but she insisted that it was paid for – by her Lady in Waiting (The Queen never carries money).  So even The Queen agrees that Clarins hand cream is one of the best on the market!

After radiotherapy I noticed that age spots on my hands were much more noticeable, so recently I have been using Clinique’s Dark Spot Corrector.  It hasn’t got rid of them, but they are much less noticeable – on one hand they have almost disappeared, and on the other hand some of the bigger spots have faded away.

Nails You may find your nails have split down to the bed, and you are having to file them three times a day; this is because the hormonal drugs have removed the top layer of your nail. Cancer drugs often cause the top layer of nails to flake off, which can be painful as nails catch in clothes.

The Royal Marsden Hospital used to have a manicurist, Francesca Manning, who was very helpful and supportive, and made me realise that many others suffer – usually in silence. One thing Francesca recommended was NailTek products, made in the States for cancer patients. They have Crystal Glass Files, soft and gentle and so good I have one by the bed, in my handbag and on my desk – all places where the horrid little hangnails catch. They are also coming into shops, so look out for them at chemists.

NailTek make special base coats; best one for splitting and hang nails is Hydration Therapy II (a nail varnish). If you have horrid thick, horny nails (rather like horses) then their Hydration Therapy III is the right product. They also make a cuticle cream and an oil:  products which feed the nails, and really help them grow again.  Use the oil or cream every day on the nail bed and around the edge, then every day re-apply another coat of the Hydration Therapy, taking it off once a week.

Use their Hydration Therapy clear nail varnish every day, and their cuticle creams at night, and this will help nails develop a white edge – before they become like a serrated saw.

In France they take nail care seriously, and at a recent conference for Oncologists I heard a brilliant dermatologist discuss how effective Evonail was at treating cancer patients’ nail problems.  If you go to article on How the French treat nail problems, this gives more details.  You can order in UK from contact@feelbetterduringchemo.com

You may find that due to a low immune system, you develop a fungal infection under your nails. SkinSure Plus is recommended for this; put a large drop into the palm of your hand, rub palms together then scrape nails across the palms so the lotion gets under the nails. 0800 107 1053. However, my fungal infection was so gross that the only thing that finally worked was Loceryl. This costs around £40 a tiny bottle, but thanks to Dr. Nerys Roberts at my local hospital, I managed to get this on the NHS.

And you are not alone.  In the USA they take these nail problems seriously, and an article in Supportive Oncology March/April 2009 issue on Dermatotoxicity linked to targeted Biological Agents tells you lots more – and proves you are not making a fuss.  See rest of article

http://www.lindiskin.com/v/vspfiles/pdf/SupportiveOncology_Dermatotocicity.pdf

Now I am on Omeprazole (don’t ask – it is to treat after effects from one of the drugs).  However, side effects – split nails, blood blisters, chalky surface, etc. are so painful I am off to see Prof. Johnston to get it changed.  I had almost given up, and was resigned to having split, flaking nails for ever – but had Wahanda MobDeal at Saasha Hair and Beauty Clinic, 59b Crawford Street, London W1.   020 7723 1985.  I bought this for the massage, which was brilliant, but included in the deal was a manicure – so thought I might as well take advantage.

At Saasha, Nishta took my hands in hers, filed the nails right down, and pampered them and painted the nails carefuly so that they looked really glam.

Then she sat me down under a special table lamp, and made me sit there for 15 minutes drying the nails.  I don’t know what was in the lamp’s rays, but my nails stayed ‘put’ for seven days – no flaking – no bits coming off – no nail polish peeling.  They were really brilliant.  I shall definitely be back when I need glam nails for a special occasion.

Now, I feel confident enough to actually give myself a weekly manicure, and a kind friend has given me a box of gorgeous nail colours.  Looking round in waiting rooms, blue, black and dark burgundy colours seem a no-no.  They look gloomy, and when it’s cold make your hands look really ‘grey’.  This friends said what I needed was Flame, coral and bright pink and red colours – and up came a box filled with gorgeous colours such as Orange Squash (a zingy coral), Hot Pink (does what is says on label), etc., made by GLEE and Famous Nails.                                                                                      ..
I like  their colours because they are bright and happy – just the boost we need.  And don’t forget to paint your toe-nails to match – it is a tremendous morale booster! Even the nurses have commented, and although my nails are still short, having such lovely colours with a bright gloss top coat makes me feel so much more glam!

Famous by Sue Moxley Nail Varnishes, £4.50 at superdrugs nationwide

Glee Diva’s Free Your Glee Nail Set is £4.99 at Sainsbury’s

More Tips

QVC, the shopping TVchannel, invited me along one day to view their winter promotions, and incidentally, “would I like a manicure?”  Lovely people!  And Sue gave me a lovely manicure, using OPI products.  Five days, later, even with my horrible flaking nails, only one nail has a tiny chip.

Sue gave me a tip – WAIT and let your nails dry.  At the QVC day they had a clever set-up;  Sue gave one a superb manicure, then passed you over immediately to Louise from Elemis, who sat me down in an Elemis massage chair, and gave me a lovely long facial.  So I lay there with my nails drying harder and harder – and made a vow that I would really make sure I let my nails dry next time I gave myself a manicure – no ‘fiddling’ around!

OPI produces gorgeous cheerful colours that make your hands look so much better, and it has been lovely having bright coral fingertips to cheer me up!  Incidentally, I know many people can’t face going out shopping when having treatment, or when fatigue rears its ugly head, so I will ask QVC to let us know when they have special promotions of suitable things.