Hello John,

l have been thinking exactly the same for the past year having finished chemo/radiotherapy ten years back.Left with neuropathy l blithely sailed along until this itching and heat rash started. It began inside the ear and continues to torment and is now spreading around the body, not all the time but certainly at times everyday.

l put this down to a compromised body from treatment that is tipping over the edge due to advancing age(74) as it increasingly struggles to maintain a sensible equilibrium.Having had major resection of my liver and losing my gallbladder in the process, this might not have helped, along with a lifelong allergy to watches,rings ect as well as penicillin and most drugs.

l am much of the opinion that l am stuck with this since creams, lotions and any potions do not help, but am grateful for an active drug free existence with no medicines whatsoever consumed by my body.l think l can take the itching which only affects me in my waking hours.Keeping busy definitely mitigates the effects, resting raises the effects,but thankfully sleeping is easy and quiet

l take it as just another signpost on my journey through my life,

David

Thank you David for sharing your experience, and like you I feel I can accept and live with the itching. Perhaps we should see it as a reward for surviving something much worse! I’m increasingly convinced that the positive mind-set accounts for sixty per cent of being able to live with the cards we have been dealt, whilst not minimising the wonderful support, scientifically and otherwise, we receive from medics, partners, spouses, family and friends. 
Thank you again, and good luck with now and what’s to come.

John

Hi All, 

Through various events and eliminations, it seems like histamines have been playing a major part in my Itchygate! 
A drink of 12% Merlot (a drink not even a glass!) results now in a red and itchy chest and neck. Over recent years I have been a Merlot drinker, and reading up on the effects such, even moderate drinking can eventually have regarding the creation of an unhealthy superabundance of histamine in the ageing body, I’m pretty convinced of its negative effect.

Hi John

Your continuing search seems to have uncovered a very  interesting connection between histamines, alcohol and itchy skin. I seldom drink red wine as more than one small glass gives me a headache and this apparently can be attributed to its high histamine content. I do drink real ale which contains lesser amounts. Apparently cheese contains high amounts too. An enzyme called diamine oxidase (DAO) breaks down the histamine and alcohol itself can interfere with that breakdown process plus trigger the release of more histamine. Thanks very much for posting this invaluable information. While I frequently have periods of abstinence and not noticed any reduction in itchyness. Im going to couple not drinking with not eating cheese and other high histamine containing foods. Will reply in a month to let you know if it makes a difference. I will also ask the oncologist if the immunotherapy drugs I receive are known to stimulate histamine production.

Ed

Thanks Ed for that very clear explanation of the breakdown process and triggering of more histamine.

I will now be taking things easy on the cheese front also. I like real ale too, though apparently Budweiser and Vodka, have least histamine of all!

Will swap notes again in a month, and hopefully others who itch, will find our conversation helpful. It’s bad enough being old and having cancer!! 

Dear Ed and others…

I am a little nervous about sharing what I have to say, just in case I hear back what I don’t want to hear.

Perhaps the severe itching, and more recently bleeding spots and scrapes ( caused by scratching) are a side effect of my regular herceptin treatment?

I have had 95 infusions over five and a half years. My ‘ kryptonite’ as I call it, due to the fact that it has kept the spread of cancerous cells at bay and has allowed me to live a fairly normal and active life.

Ive always thought that any ‘good’ or ‘ bad’ thing should not  be put down to any one event…”It’s never one thing”

and although the histamines, certainly for me, in red wine, can and do trigger an itching event, other things may also  play their part.

Closer ‘magnified’ research by my GP revealed what looks like folliculitis, where red spots surround hair follicles.
This has not yet been confirmed. I also am aware that some itching usually occurs around the area of my arm following where the cannula is inserted, prior to my infusion of herceptin every three weeks.

The itching started several months ago, around the time other things happened too, such as changes and increase in some medication.

I will speak with my oncology team, but am naturally worried that my infusions will be stopped, when the side effects of herceptin may not be the ( sole) cause of the problem at all.

I’d be most grateful to hear the thoughts of both professionals and lay folk, like myself, who may know about or may have had similar experience regarding this matter.

John

Ed and co,

A post script to my previous post. I think, and hope, I have discovered that it’s not Herceptin that brings on the itches. I had a friends reunion last evening when I over-indulged to the tune of two pints of real ale (4%) and three medium glasses of wine. I woke at 5am with the most ferocious whole body itching. I damped if down with a wet face cloth, but can still feel the effects. 
John 

John,

                      2 pints of real ale and 3 glasses of wine would see me falling over and most likely attending a fracture clinic, so l would take the iitching.But lets face it , theres no getting away from thesuggestion that you are just a good time guy---long may it last,

David

Ha! I’ll take that as a compliment David, even though it was a ‘one off’ spread over several hours! 

Hello John

So its back to possible histamine as a cause of your itching skin. Due to a lot of socialising recently I have not yet started the 4 week abstinence I was planning to see if alcohol is involved in itchy skin. I had a liver function test recently and all is normal so its not a liver problem causing the itching. 

Ed

Good morning all.

I think it is time that I too had a month away from ‘posting’, for several reasons.

in the scheme of things, with many oncology folk having much, much worse side-effects, treatments, prognoses etc.. to endure…, itching and subsequent scarring and  bleeding comes way down the pecking order. My apologies if I have offended anyone with what could be rightly regarded by some, as pettiness.

I had just hoped that someone else who had been there too with these issues, could provide me with a little information and help. And you have.

I’m now going to try to not searching for answers but just to accept my situation and get on with life. The human body and mind are far more clever and complex than I can understand. So for now thanks for all the help and support you have given, and good luck with your issues in life.

John

Hello John

I doubt you could offend anyone either online or in real life, you are far too considerate. Having been through oesophageal cancer and lung cancer and its brutal treatments and ongoing side effects for the past 8 years your situation is hardly trivial.

You opened a very valuable thread on Pruritus which very many of us with cancer suffer from. Not sleeping properly for months on end, repeatedly scratching and rubbing skin 24 hours a day is disconcerting to both the sufferer and anyone witnessing it. It is a miserable condition.  It appears that 1220 people have viewed your thread, if only a small number have taken something away from it then it has been worthwhile. Take a break and visit again in the New Year and I'll post on whether not drinking alcohol makes a difference to itchy skin.

Ed

Hello John

I doubt you could offend anyone either online or in real life, you are far too considerate. Having been through oesophageal cancer and lung cancer and its brutal treatments and ongoing side effects for the past 8 years your situation is hardly trivial.

You opened a very valuable thread on Pruritus which very many of us with cancer suffer from. Not sleeping properly for months on end, repeatedly scratching and rubbing skin 24 hours a day is disconcerting to both the sufferer and anyone witnessing it. It is a miserable condition.  It appears that 1220 people have viewed your thread, if only a small number have taken something away from it then it has been worthwhile. Take a break and visit again in the New Year and I'll post on whether not drinking alcohol makes a difference to itchy skin.

Ed

CALLING ALL FELLOW ‘ITCHERS’ AND ‘SCRATCHERS’…THE TIME HAS COME TO TAKE ACTION!

Yes, I said I was going to give up posting for a while…but then instead of “ “itching the night away” , my thoughts became focused on what I and we could possibly do about the curse that is this strange and debilitating phenomenon.

FACTS

Scratching and rubbing our skin are frequently almost involuntary pleasures that often have ‘ bleeding’ and unsightly consequences.

Itching is often, if nor always, the result of internal or external bodily stimuli, which is not always fully  known or understood.

Those of us whose bodies have absorbed many forms of powerful drugs and other medicinal treatments, must have accumulated a plethora of toxicity as a by-product, thus providing fuel for itching.

A CHANGE OF ‘HABITS OF THE MIND AND BODY’ ARE REQUIRED

If you are anything like me, and the old familiar regime has taken over…

not so much “ I THINK THEREFORE I AM’’

                         but ‘I ITCH THEREFORE I SCRATCH’.

I suggest current habits of mind and body would do well to  change  from this to…

’I ITCH, THEREFORE I SPRAY AND DAB’

PRACTICAL ACTIONS I HAVE BEEN, AND WILL CONTINUE TO TRY, TO FOLLOW

1. When indoors and relaxing, always have a,clean, damp, facecloth, and soft headed, long handled, bathroom brush to hand
2. Wrap a large, bath towel around your main pillow or pillows, if like me, nighttime involuntary itching can result in head bleeds, and towels are ( I’m told) easier to wash than pillow cases
3. A damp facecloth and brush ( as in 1. above) should also be kept by the bedside at night
4. When outdoors and in public, always carry a clean folded handkerchief (or other ‘dabbing’ agent) and a water-filled, small atomiser…an unobtrusive ‘SPRAY AND DAB’ is an effective and practical way of subduing an itch! 
   
   I will be trying very hard to follow my own suggestions, not that they are all original, of course. In fact it was someone’s post about the embarrassment, among other things, of ruining pillowcases, that has I feel, prompted my four am thoughts, to write the above! 
   
   John