What patients say when they are on these drugs

A thread from a forum produced lots of information –                                                                                                                                              and a Warning about what can happen when you visit the USA!

One friend reported, “I was on 5FU combined with folinic acid.  A side effect of this chemo                               is rawness of the skin where it’s thin and membranous – such as in the mouth and nose.

Any extremities, such as fingers, toes – and the skin on the palms and soles of the feet – became  really shiny and very red – not red raw, and it did not hurt (but then I never had it on the soles of my feet).

I was given corsodyl mouthwash for the ulcers/rawness in my mouth.

But it wasn’t painful, and didn’t throb, and I didn’t notice anything until one day I saw a sales assistant’s expression when she saw my hands!!

I think if you are given 5FU for a long time then the redness is a more common side effect. I think 5FU causes the cells to renew really quickly, hence the shineness to the palms – but have to say – it made the skin on my face and my hair….fantastic – the one good thing!

They prescribed B6 for the redness – but I didn’t take it, as i felt I could cope with it ok. I’m looking at my fingers now, and I can see they’re slightly red – I can feel it a bit – it’s an odd thing in the fact that the fingers would be really red, you could see clearly where it started from the knuckles.

As the drug accumulated I became very intolerant of it – a good sign because it meant it was working if I had such bad effects from it! My having such profound side effects meant it was working.

Basically you read that soreness and redness of the palms of the hands and soles of the feet  (Sometimes known as palmar plantar or hand and foot syndrome), can happen when 5FU is given continuously or over a long time. It is temporary and improves when the treatment is finished. You may be prescribed vitamin B6 (pyridoxine), which may help to reduce this”.

Another Forum visitor says, “I was on Capecitabine, which I understand is a sort of oral version of 5FU.  I had hand and foot syndrome and was eventually put on vitamin B6.  There was a lot of redness and I lost quite a lot of skin from my feet, making walking (of which I do a lot) very painful and also lost the skin from the tips of my fingers.

However, my treatment finished in January and everything has now healed up and I still have fingerprints”.

Warning! However, others say they have ‘lost’ their fingerprints, so if you are visiting the States, or other countries with less-than-helpful Immigration officials, see the Travel and Insurance category.

Going Blonde can help you look better

Sitting in a Harley Street consulting room, I could tell that the doctor didn’t have good news.

No, he couldn’t tell me what to do about my dry, lifeless, ’straw hair’.  But – he had a fantastic tip.  Had I tried highlights?

He explained carefully that this could fake the shine, and when I went home and tried this out – he was right.

Highlights won’t restore good healthy shine, but if you use a good product it won’t dry out your hair, and the touches of highlighter will give the impression that your hair has regained its shine.

Then I was sent a bottle of BLONDE-ME BEAUTIFUL, made by a respected name in hair products:  Schwarzkopf.  Their  new BLONDME line is the first and only brand to offer colour, care and styling product in one range for a complete, blonde haircare regime where you can have more fun with your colour.

Each product contains Keratin Protein to reinforce the inner structure of more delicate, lightened hair for restored elasticity and strength, whilst the Silkpowder Complex deeply nourishes and smoothes for illuminating shine and true golden radiance.

You can even choose different products, according to how blonde you want to go.  Me, being a coward, just wanted a little highlighting – but have to restrain myself because it is so easy!  They make a full range, shampoo, Conditioner, Intense Treatment and Illumi Lights (haven’t tried that yet!)

So if you are fed up with the lifeless yuk colour our hair goes, try some highlights and have fun!

To find your nearest BLONDME stockist please contact Schwarzkopf Professional on 01296 314 000 or log on to www.schwarzkopf.co.uk

Restoring my hair

I think every cancer patient suffers from dry hair, thanks to the drugs we take.  The latest shampoo however might be the answer to dry hair problems that are one of the side effects of these drugs.

Clynol have come up with a Clynol Moisture+ range, designed to transform dull and brittle hair to become healthy, glossy and strong.

And Clynol uses natural bamboo milk:  one of nature’s ‘superfoods’, containing nutrients to rehydrate and strengthen, helping hair to absorb, rebalance and retain higher levels of moisture.

Clynol Moisture+ Hydrate Shampoo (£7.95) is gentle enough for daily use, and I have been using this for the past month, together with its matching Leave-In Conditioner (£8.95).  This you spray into freshly shampooed hair, comb through and leave in to do its work.

And I must say I am impressed.  My hair has lost its ’straw’ feel, and doesn’t catch on my fingers if I were to run my hands through my hair.  (I do this as a sneaky test, and Clynol has performed well!).

Available to buy from Clynol salons and online at www.hairsupermarket.com / www.beautybay.com – for further stockist information please contact 01296 314 000 or visit www.clynol.com.

Strength and Style

Macmillan have teemed up with Toni and Guy hair salons to help people with cancer affected by hair loss.

Together, they have developed a programme called Strength in Style, to give patients the chance to get expert support in their hair salons.

There, you will receive top tips on hair care, together with wig cutting, and styling from specially-trained consultants;  Macmilllan will have been involved in the training.

As Tony Mascolo, CEO of Toni and Guy says, “providing expert care for people undergoing cancer treatment is something the entire company is passionate about supporting”.

Their salons are spread around the world, from Aberdeen to Amman, in Jordan.

www.toniandguy.com

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.

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.

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 help.   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. Her Majesty, unlike certain Prime Minister’s wives, 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!

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 Mannning, 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.

Provided I remember to use their Hydration Therapy clear nail varnish every day, and their cuticle creams at night, my nails now have a white edge – before they were 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

TREATING ‘DRUG’ NAILS THE FRENCH WAY

When Dermatologist, Dr Geraldine Reynaert,  transferred to an oncology clinic in Marseille, she noticed that nail problems caused by cancer treatments, were similar to those suffered by the psoriasis patients she had treated previously. So decided to try out the Evaux Laboratories product she had been using.

Results were “outstanding”, so she contacted the Evaux Laboratoires research and development team who develop the Evolife range.  They began to work on a specifically adapted Totum Lithium formula, which eventually became EVONAIL, which she then “tested …successfully, on numerous patients.”

Speaking from the ASCO World Oncology Congress in Orlando where Evolife was being launched in the US, Charles Felgate, joint Managing Director of Feel Better Ltd, said: “Up until now cancer patients have had to suffer in silence with little relief from the distressing side effects of chemo and radiotherapy. Now Evonail brings real relief to people who find the simplest of tasks painful because of their brittle nails.”

Dr Reynaert isn’t the only doctor to use the product. Dr Radu Vanica, from the Medical Oncology Department of Argenteuil Hospital, Paris, is a firm supporter, as is Dr Sylvie Delanian from the Hospital Saint Louis in Paris.  One of the Oncologists I spoke to said that she had been so impressed she was now issuing the products to her patients as a preventative, before they start chemo or hormonal treatment – to see if she can prevent side effects.

Trials
Now, the search is on for fifty cancer patients undergoing chemo or radiotherapy to trial Evonail in Britain.

Cracked and brittle nails can be a painful and debilitating side-effect of cancer and radiotherapy treatment making simple tasks like turning the page of a magazine excruciating.

Anyone wanting to volunteer for the trial, or organise products for their patients, simply needs to send an email to contact@feelbetterduringchemo.com.

Range
Evolife has now expanded the range, and makes Evoskin for skin problems on face and body,  and my favourite male tester was given Evomucy spray to try (he had mouth cancer) and says it gives wonderful relief.

Speaking to one of the research team, I took him to task about using sprays.  They had thought this out, and as one of the products is specially formulated to sooth burning from radiotherapy, they had used a spray “as it can be painful to touch the skin”.

Contact These products are regularly used in France and in over 16 countries in the world, but they have only recently been launched in the UK through the website operated by Feel Better Ltd.

The trials are in their early stages – but watch this space.  As the products are available in the UK, perhaps – perhaps there is a hospital here that might think of us – and try the same trials.  Backing comes with scientific papers from the “Journal of Neuro-Oncology, which Evolife can send if you ask by email.  http://www.feelbetterduringchemo.com

FEET

Fiona Hughes is a very practical Practice Manager at my local GPs.  If you have cracked feet or hands, one of her tips is to get a bottle of baby oil, tip a couple of capfuls out and fill with Lavender Oil (the best quality one).  Shake – then get a bowl of warm water, tip a good splodge into the water, and sit with your feet in this for 20 minutes.  As she says, lavender will heal, is antiseptic and stops infection, the oil will continue the healing, and it smells lovely!

Another of her tips is to eat Manuka Honey (Rowse make a very pure one) – or you can do as they do in New Zealand and spread it on broken skin.  Ask advice first, but it is one of nature’s healers.

FEET ARE SO IMPORTANT – and whilst undergoing treatment, you may find your feet get horrid thick skin, and even what are described as ‘horse nails’ (very thick, calloused nails on your toes).  These come as yet another side effect from drugs.

So you need to have a podiatrist to sort these out – but the NHS tends to have massive waiting lists for them, so you may be better off going privately to somewhere like Shuropody.  They have around 60 salons around the UK, from Aberdeen to Plymouth, so there is bound to be one near by.

Cassie Armstrong from their Coventry branch took me under her wing, and knew all about the problems drugs cause us.  Starting with a lovely foot bath, dead skin was exfoliated off, and we got down to gentle TLC.  Rubbing in special cream, then getting rid of corns that had developed because of the way I was walking after being in bed, she said I should use special cream on my feet after a bath or shower, and before getting in to bed – even better if you wear bed socks to lock in moisture ! She explained that if we get ‘horse nails’, they can even do something about this.

Cassie knows how the NHS works, and is in touch with a nurse treating lymphoedema.  We talked about ‘post code’ lottery, as near where she works there are two PCTs – one providing lymphoedema treatment, the other says patients CAN’T obtain this on the NHS.  If your PCT says the same, look up under Lymphoedema elsewhere in this website, for details of how to sort them out!

If you have cracked, painful skin on your feet, Shuropody have a special Intensive Repair Cream, and gadgets to get rid of ‘build-up’ of skin, corns etc.  The salons offer reflexology too, so you can really have a pampering session, before floating out into the world!  And a lovely tip for summer – blast hot feet with the cold air setting on your hairdryer!

www.shuropody.com 02476-545 545.

Once you have gorgeous feet – keep them that way! After any bath or shower, pat feedt dry and rub in cream. Clinique have a Water Treatment cream which is wonderful and my NHS podiatrist wanted to know what I used! She was also impressed with the lovely citrus-smelling Foot Balm made by Barefoot Botanicals.

But I have found that Flexitol (on NHS prescription) is also very good, and as most people can get this free on prescription in England and Wales, worth asking for. For some reason it is only included on one NHS approval list, but just tell doctors to keep looking: they’ll find it eventually.

Cold feet were a real problem, until Charnos came up with Cotton Modal Tights – modal being a lovely, soft fibre made out of reconstituted cellulose from beech trees (so that’s eco-friendly then!), and 50% more absorbent than cotton.  They have lovely opaque tights in different colours, and – something I would never dare wear ordinarily – ribbed tights.  With swollen ankles etc. I try to keep them hidden, but a friend persuaded me to wear a pair of these, and because they are made of a modal mixture, they aren’t as bulky as wool, but are just as warm.

And if you find it almost painful to walk,or if your feet are cold, or if you just feel like walking on air (and who doesn’t?!) Then I have been trying out Carnation’s Cushion Comfort Insoles (good name).  Not only do they make walking supremely comfortable, but cutting them to size is incredibly easy – you just use a pair of scissors and follow guidelines for each foot size printed on the soles.  If your feet are in a really bad state after chemo, then use the Pressure Relief Insoles – which not only cushion your feet – but have an anti-fungal protection with a lovely smell.

Spa Paradisa (see under Hands) also make a treatment and sell socks to go with this.  Sit on the bed (don’t try to walk in creamed feet!, slather it on, and put the socks on top.  Next morning you should be able to feel a difference. www.spaparadisa.com

Pampering – you deserve it

One of life’s lovely treats is to go to Fortnum and Mason and have manicures and pedicures given by Sophy Robson. Beauty Editors go to here when they need ’special feet’, and now she gives a gorgeous Medi-Pedi treatment for hands and feet. It takes an hour; all dry skin is removed, nails shaped and repaired, Legs and feet exfoliated using a warm sugar scrub then soaked. Then comes a delicious soothing and relaxing massage, and after that the nails are painted.

Sophy doesn’t mind if you bring your own base coat (I took NailTek) but usually uses Sally Hanson products. I am typing this up after one of her treatments, and three days later there isn’t a chip to be seen; I keep on having to stop and admire my nails. You can book her on the new health and wellness website www.wahanda.com.

These are rescue remedies for our extremeties!

HAIR

Whoever called this our crowning glory hadn’t had radiotherapy. Or chemo. Or been put on drugs.

You escape one treatment and think your hair is OK, only to find there are tricks up someone’s sleeve and the next round of drugs  gives you grief.

But despair not. There are understanding and helpful people out there who have good ideas to help our hair.

If you lose your hair totally – Charles Worthington is a wonderful person, and a stalwart of Look Good Feel Better. His salons have dedicated stylists who just love to get their fingers into an NHS wig and transform it – until you have seen what magic they work with their scissors you wouldn’t believe what can be done.

If you decide you need a zinging new colour to show the world how you feel, or if you just think your awful thatch could do with a lift, Karine Jackson is one of those really helpful people who understands us.  Scroll down to the Colour section at the end.

Otherwise, you may have dry hair caused by side effects of hormonal drugs : There is

• Dry, dry hair
• Straw hair
• Fish hooks hair

Dry, dry hair

I asked PD (pompous dermatologist) what could I do about ’straw hair?’ ”

“Use a conditioner” was PD’s patronising reply.

Really, what century do they live in?  Any teenager knows to use a conditioner!  So another ‘expert’ was deleted from my book, and I went looking.

And I was lucky to meet up with bubbly Tara Smith.  When people talk about ”hairdresser to the Stars’  Tara is the genuine article, At her launch party for her hair products, there was a real red carpet, and masses of photographers to sidle past.  Next thing I see I am surrounded by famous faces;  stars from Sex and the City, Demi Moore’s films, Normandie Keith and others had all come to wish her well with the launch of her new hair product range, “tested on film stars, not animals” as Tara says.

Tara Smith Hair shampoos and conditioners are being sold in Tesco from October, and everything has been ethically designed, from re-cyclable bottles to the swing tags are impregnated with wild flowers – so don’t throw them away, plant them in the garden.

Straw hair

Tim Wainwright was ‘Artist in Residence’ at the Royal Marsden hospital for over a year, taking thoughtful photos about how we felt about our cancer journey. Two patients out of the 24 mentioned ’straw hair’, and you can see their photos on display in the hospital staircase.

Schwarzkopf make a GLISS range which is excellent. There is the usual shampoo and conditioner, but their secret weapon is a spray on shine – brilliant.  They have just come up with Blonde Me – see below as I try it out.

For this hair, there is a new product range called Biolustré.  They have an Exfoliating Shampoo, which you use at first to strip away old shampoo residue, and any ‘nasties’ that might be leaching from the drugs.  Then use the Treatment Shampoo, and after the Daily Conditioning Sealant;  all made EMS Products.  This range gets top marks from all who have tried the range.

Another excellent hair range is the Dead Sea Spa Magik range, made by Finders (they also make the Dead Sea Scrub, which is one of my favourite products).  Their range includes a Mineral Shampoo (which also helps if you have dandruff), a Conditioning Scalp Mud which helps with itchy scalp, and the brilliant Hair Magic Serum – which you can use like a conditioner – or if your hair is really bad comb it through before you dry your hair, and leave on.  www.findershealth.com

Fish Hooks hair

Worst case scenario of all is when it is actually painful to drag a brush or comb through your hair. Under a miscroscope you can see that the hair has split all along the shaft, leaving ‘bits’ that catch in everything.

Fish hooks hair arrived for me – and I was seething; nasty combination! I had just been to see PD, full of hope as I had managed to get an appointment on the NHS to see this famed Harley Street dermatologist. Ten minutes after entering the great man’s room, I was told to use a conditioner. Trying to tell him that I had tried every one I could, he said he couldn’t help – and I was dismissed.

Seething as I stumped along Wigmore Street, I came across a “Free Advice – Trichology Clinic” sign in the window of the chemists John Bell and Croyden. They couldn’t possibly help – but what had I got to lose? Well, Vanessa soon showed she was made of more intelligent stuff than PD. Said I was clear case of damage from Tamoxifen, and gave me three products; treatment cream, shampoo and conditioner. They cost around £100 for about three month’s supply – worth every penny as the fish hooks disappeared.  020 7935 5555.

Now I ‘mix and match’, and use Spiezia’s fantastic Head and Hair Oil to give my hair shine.  About an hour before I am going to shampoo, or the night before, I rub this oil into my hair and scalp.  Then shampoo as normally, and can’t resist constant peaks into the mirror as the oil has restored my hair shine. Marvellous!

If I go out into hot sun then I pour a little oil into the palms of my hand, rub them together and spread the oil onto the top of my hair.  This acts as a barrier, and the hot sun makes it soak in, which does my hair more good.

Colour

I very nearly ended up with pink hair – then I thought that wearing the ‘breast cancer’ colour was a bit too Zandra Rhodes – so settled for glorious highlights.

A friend ended up with grey hair after chemo, even though she is much too young, but didn’t dare colour it as she knew that in the past some hair colouring products were very suspect.  But when a friend recommended Karine Jackson’s Hair and Beauty salon in the centre of London, I had to try it out on her behalf, of course!

Karine is one of those lovely bubbly enthusiasts whom you want to hug and trust immediately.  She has studied the effects of cancer drugs on our hair, and is working with other hairdressers to try and develop a network of hairdressers across Britain, who understand our hair, and how it needs help to combat drug side effects.

Elected London Hairdresser of the Year last year, not only does she give clients confidence, but other hairdressers respect her.  Now well-known amongst cancer patients in London, it was another patient who recommended her, as do nurses at Guys and St. Thomas’ Hospital.

Flashing a colour chart under my chin, she mused at what colours did to my skin – then got down to mixing highlights.  Becoming interested in what was actually in hair colours,  she found that many contained Ammonia – not good.  So looked around for someone who made gentler colourings, and teamed up with Organic Colour Systems – who do exactly what it says on the label. Now she can give you colouring or highlights, and days later my hair still looks glossy – as it did BC (before cancer).

Then came a cut;  “best solution to get rid of fish-hooks”, and lots more advice – such as giving your head a gentle massage once a day helps keep hair in condition.

End result was me skipping out of the Karine’s salon, for once able to glance at myself in shop windows and not cringe.

Karine Jackson is in Litchfield Street, just off Covent Garden.  If you go to www.karinejackson.co.uk the site gives prices – which are incredibly low, especially when you take into account the quality and fun of the experience.

And watch her website to see when she rolls out helpful salons across Britain.

The Oncology Site has a useful Nail and Skin Care Tip Sheet. It is a bit ‘talking down’ to us, but at least they are trying! http://www.oncolink.com/coping/article.cfm?c=5&s=75&ss=186&id=991

WIGS – at the One Stop Wig Service For Patients At Guy’s And St Thomas’
Well done the first hospital in Britain to copy the US idea of having specialist shops supplying what we need.  It is tiring enough having treatmen: so who wants to trail round shops talking to dis-interested assistants?

Guy’s and St Thomas’ patients suffering from cancer or permanent hair loss can now buy all the accessories and products needed to maintain their wigs at lower than retail prices during their wig fitting appointment.

The Trust’s wig service currently fits around 500 new wigs a year to patients, many of which are provided on prescription.

This new scheme, provided by the Trust’s Patient Appliances team, will mean that following a wig fitting patients no longer have to go elsewhere to buy shampoos, conditioners, styling sprays, hairbrushes or wig caps, turbans and head scarves. All will be provided at below the retail price. A selection of swimwear and bras will also be available for breast cancer patients to purchase.

Venise Spence, a patient appliance officer at Guy’s and St Thomas’, said: “We want our wig service to be convenient and easy for patients to use, and work to ensure they can choose a wig when they come to hospital for a clinical appointment.

“Now, not only can patients go home with a wig they’re happy with, but also with the other bits and pieces they need. Our enhanced range saves them a trip elsewhere when they may be extremely tired and unwell.”

Blonde Me is a new product they call a Blonde enhancing sun screen.  It helps protect your hair from sun damage, and also gives us light highlights which do wonders for morale!

I have just tried out Schwarzkopf’s Blonde Me (they are one of top companies for hair care).  My hair, although blonde when I was young, got very dark after cancer treatment.  But when I was a kid, the sun always gave me natural highlights – and Blonde Me has given these back to me, so I love using it.  Be warned, though,  At first I used it every day, and friends did remark  ‘have you changed your colour?’

Apparently we should use protection (whatever colour our hair has become) as blondes have fewer melanin pigments in our hair.  These act as protection against UV rays.  So drugs were drying out my hair from inside, and the sun doing the same outside – you can’t win!

Apparently it’s not only Europeans that are blonde, but this hair colour occurs naturally in Indians and Chinese (wonder if this was a legacy from Alexander the Great?)  Apparently blondes have more hair than most, but it is thinner – so prone to problems from drugs.   Anyway, this is a fun product that has given me back the colour I had before treatment, and a lot of fun.