A blog by Ronny Allan

Living with Neuroendocrine Cancer – the 7 Year Itch

Living with Neuroendocrine Cancer – the 7 Year Itch

I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery.  It had taken 12 days for me to feel strong enough to venture onto social media with a simple message “I’m feeling perkier“.  For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed.  I guess I met some of these descriptors most of the time! I had gotten through the worst and the light at the end of the tunnel was now a faint glimmer.

I’ve recently had a ton of ‘7 years ago cancerversaries’ and there’s still a few to go! I’m currently being reminded of an issue that started just after my initial treatment and by coincidence (perhaps?) the commencement of my Lanreotide (Somatuline Autogel).  Itching!  However, for me, it’s mainly the right leg below the knee (go figure!). Much less frequently on my arms and sides.  I know many people have the same issue but no-one ever seems to find out why – I guess it’s that Neuroendocrine jigsaw thing again?

However, even NET patients can get regular itching!  

Itching, also known as pruritus, is an unpleasant sensation that compels a person to scratch the affected area. It can occur anywhere on the body and may be either:

  1. Generalized: When itching occurs over the whole body.
  2. Localized: When itching is limited to a specific area12.

Common causes of itching include:

To alleviate itching, consider the following self-care measures:

  • Pat or tap your skin instead of scratching it.
  • Apply something cool, like a damp towel, to your skin.
  • Take cool or lukewarm baths or showers.
  • Use an unperfumed moisturizer or emollient regularly.
  • Keep your nails clean, short, and smooth.
  • Opt for loose cotton or silk clothing.
  • Use laundry products designed for sensitive skin1.

If itching persists, consult a pharmacist who can recommend suitable products, such as antihistamines or cooling menthol creams. Seek medical attention if:

  • Itchy skin affects your daily life.
  • The itching is severe.
  • You develop a new rash or lump.
  • Itching occurs during pregnancy or after menopause.

Remember, while itching is usually harmless, it can sometimes be a sign of an underlying condition, so it’s essential to seek professional advice when needed14.

Initially, I put the issue down to Lanreotide, as this is mentioned in the side effect list on the drug instructions.  The initial connection was made because it seemed to be happening immediately after my monthly ‘dart’.  A really annoying itch mostly around my ankles and which had to be scratched!  An application of a general emollient cream for a few days seemed to do the trick and after a week it was gone (until the next injection …..). However, after a few years, I sensed the issue was drifting away from the injection cycle and adopting a different and more random pattern.  I’m also suspicious of a nutritional connection and checking my article Nutrition for NETs -Vitamins and Mineral Challenges, I can see Vit B3 (Niacin), Vitamin A, Vitamin D and Vit E are mentioned in regards skin/itching issues – note ADE are fat soluble, a known malabsorption issue in pancreatic NETs and those taking long term somatostatin analogue might also be impacted; as will those with small intestine surgery.  Many patients also present with B12 deficiency combined with iron deficiency anemia. Gastric NETs may also have this issue due to pernicious anemia.

I’d be confused if this was an issue today as I now take plenty supplements to offset GI malabsorption, and the vitamins above are checked annually.  However, I probably wasn’t taking sufficient between my first surgery in 2010 and 2013 as I lacked the knowledge to do so at the time.  So nutritional deficiency remains a possibility or at least an added complication.

I also seem to have had an eczema type issue in my right ear and mild rosacea for more than 7 years (pre diagnosis).  As you can imagine my ‘inner detective’ is working overtime!  One thing is clear – this itchy leg issue has plagued me for 7 years.

I know that many people have real issues with rashes and skin itching, I’ve seen this so many times with some people describing it as severe.  Clearly when this is the case, a doctor’s intervention is generally required – although working out the exact causes looks pretty difficult.

In addition to the observations above, I’ve seen the following connections to NETs and skin issues:

  • Glucagonoma – a type of functioning pNET can often come with dermatological issues – Necrolytic migratory erythema
  • Those with cancers of the pancreas may experience itching. The itch, however, isn’t necessary a direct symptom of the cancer. Jaundice may develop as the result of a tumour blocking the bile duct and chemicals in the bile can enter the skin and cause itching.
  • Malabsorption of vitamin B3 due to high levels of 5-HIAA causing pallegra in varying degrees of severity.
  • Allergies (including from foods)
  • Mastocytosis – potential misdiagnosis of Gastronomas (Zollinger-Ellison Syndrome), Carcinoid Syndrome and Pheochromocytoma
  • Oversecretion of Histamine – histamine more likely to come from foregut NETs (stomach, duodenum, pancreas and lung) but in a very recent document (2024), European specialists said there is limited data/science to suggest histamine is related to carcinoid syndrome.  That doesn’t mean it won’t cause you an issue but perhaps the issue is more ‘atypical’ rather than a causal effect of carcinoid syndrome.  Plus histamine release from regular sources is infinitely more common than in NETs.

Edit:  2019.  Winter in UK has made my itching seem worse, perhaps the cold weather plays a factor. Maybe I just currently have what many people have – dry flaky skin and the onset of winter probably isn’t helping?

Edit: 2020. I think my issue below the knee is almost certainly dry skin but I have no idea what’s causing it but I have bigger things to worry about!  I have a new cream called Dermol which sort it out. Seems to happen more in the winter.

Edit 2023.  I have heard a lot of patients talking about hives (urticaria) but not really experienced it myself since diagnosed in 2010 ………… until 2023!  After tracking this for 12 months, I can confirm it is normally a bigger problem in the winter, suggesting it might be related to temperature changes and some stress.  I also had a major breakout during my second bout of Covid-19 in Dec 2023 – read more about that by clicking here.  In addition to my Dermol cream mentioned above, I found that taking over the counter antihistamine made the hives disappear within 24-48 hours.

I should really rename this blog post from 7 years to 14 years! 

Edit 2024

Hives is the latest skin issue.  Read more by clicking here or on the picture below.

hives Ronny Allan

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I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.


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Ronny

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By Ronny AllanOn 5 Comments
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CategoriesDiet and Nutrition Living with Neuroendocrine Cancer Patient Advocacy Survivorship Treatment
By Ronny Allan

Ronny Allan is a 3 x award-winning accredited patient leader advocating internationally for Neuroendocrine Cancer and all other cancer patients generally. Check out his Social Media accounts including Facebook, BlueSky, WhatsApp, Instagram and and X.

5 thoughts on “Living with Neuroendocrine Cancer – the 7 Year Itch”

  • Bridget Mahoney

    I’ve had itching and little raised “bumps” on side of breast, waist and hip area since diagnosed in 2013 and starting lanreotide monthly. It’s come and gone but now, just after completion of 4 cycles of PRRT has returned with a vengeance! It’s also become a stinging/fizzy feeling in my left buttock and thigh…. really tender to touch and sometimes hot. anyone else have something like this (it’s now accompanied by excruciating lower back pain 🤬)?

    Reply
  • Mike

    Interesting one!
    I have suffered from Acne rosacea for many years and long before being diagnosed with a carcinoid tumor.
    If only we could tie all the strands together..skin, stomach, joint pains, back pains etc.
    It strikes me that Chinese medicine may have some lessons to teach in terms of treating the whole person and not just individual complaints.

    Reply
  • Deanna Vickery, Mrs

    I’ve got one, small patch of eczema on my face, which first appeared after gall-bladder removal in 2010. This was 9months before the gut problem which culminated in surgery and removal of GI-NET. It has calm periods and flare-ups which are extremely burning and itchy and seem to correspond to ‘bad-gut’ episodes.

    Reply

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