Post Treatment Follow Up Trial PETNECK2

Research Question: Does PETCT-guided, patient-initiated follow-up result in similar overall survival compared to current post-treatment routine surveillance for head and neck cancer (HNC) patients? International guidelines recommend regular routine follow-up, aiming to detect recurrences early and enable successful re-treatment. This regimen is effective at detecting recurrences. However, because detection rates are low in asymptomatic patients attending routine consultations, this routine surveillance regimen is inefficient, resource-intensive and increasingly unsustainable. Patients also report that follow-up schedules are too frequent, and may exacerbate fear of recurrence. In contrast, detection rates increase dramatically when patients initiate earlier review because of developing new symptoms.

Aim and Objectives: With patients and clinicians, develop a patient-centred, evidenced-based and theoretically-informed complex intervention and information and support resource for PETCT-guided, patient-initiated follow-up for HNC. 

More info is here https://fundingawards.nihr.ac.uk/award/NIHR200861

I’m so proud to be a tiny small part of this trial and I’ve been involved in Zoom meetings to help draw up an App as part of this resource; an App to enable patients to self monitor and keep in touch with their hospital team. There are lots of other extras like links to support groups and living well tips.

I thought I might sneak in a few snaps of what this might look like on your phone.

I think this is very exciting and might well suit quite a few patients. Much as I like seeing my wonderful Oncologist and Surgeon (though I must admit both have been either a distant voice at the other end of the phone or hidden by an alarming amount of PPE paraphernalia for the last year) I guess seeing them less frequently wouldn’t impact much. My Oncologist has done his job…..I sorely hope my surgeon has….. so I feel my survival is now down to luck.

Ive left this on Twitter …….“Just been in a PetNeck2 Zoom call, So proud to be helping finesse an app for Head and Neck Cancer follow up. Do I want an App replacing my oncologist? Human intelligence or AI? Daddy or Chips? Seriously; done properly it makes sense and I would be happy with it. They have done a brilliant job with it.” 

Lymphoedema

I have been chatting to a friend on the Macmillan forum about coping with lymphoedema. This unpleasant swelling occurs when lymph drainage is damaged by either radiotherapy or surgery. It can vary between a mild inconvenience to a painful hard to put up with and hard to manage condition. The earlier you tackle it the less likely it is to become a real pain.

These simple Exercises can be carried out either sitting or standing and each exercise should be repeated 5 times.

Lymphoedema-1.png

Standing or sitting in front of a mirror, carry out exaggerated vowel sounds (A, E, I, O U)

Lymphoedema-2.png

Shrug shoulders up and down.

Rotate shoulders in circles forwards and backwards.

Lymphoedema-4.png

Facing forward, gently turn head to look over left shoulder, return to the centre before turning to look over right shoulder.

Lymphoedema-5.png
  1. Look downwards placing chin on chest and then gently stretch chin upwards.
Lymphoedema-6.png

When in bed sleep on at least 2 pillows.

MASSAGE

This isn’t like a deep muscle massage. It’s a combination of light, motions that stretch the skin and begin moving fluid to an area that has not been damaged and can drain more effectively.No oil or cream needed, simply dry hands and a light touch It’s not often that I post a picture of myself but I did this just to show how easy it is to move lymph to the lymph nodes behind your ears that often escape any damage.

So Ian (Rossi500) this is for you

Routine: Get into a routine.After treatment, when your long recovery starts one of the things you do is drink lots to get the mucous shifted and to keep your trashed mouth moist. So…….you do go to the loo a lot and I found this the ideal time to do my neck stroking. 50 strokes each side and in no time it was gone. Now and then my neck gets a bit puffy so a week of attention and it disappears.

The future of follow up

As I hadn’t had a nasoendoscopic exam for 8 months I asked that my next appointment wasn’t over the phone and was a F2F. I was looking for that reassurance even though I felt well. Dr Banner and I talked about follow up. I was keen to clarify a few things as my mate Hazel had been eased out of the cancer pathway for her checks and I was not happy that the same fate might befall me. (she wasn’t happy with her situation either….in fact she was furious and did something about it)

Bless him. He was keen to assure me that I would remain on his list and he would definitely be the one to “discharge” me at five years. His words, “I don’t just want to see sick people. I want to see that I can make them better, to see them well.” Hardly surprising that. Can you imagine how miserable it must be to see ill people in various stages of radiation decrepitude and not see them thriving? Another thing I learned was that it was his policy to not actually discharge his patients but to simply say he didn’t need to see them again and that if there was anything worrying us that we thought might be cancer we should bypass our GP and go straight to his secretary.

Anyway I digress

The long and short of it is that follow up of head and neck patients is labour intensive, inefficient and unsustainable. Most recurrence is symptomatic and reported by the patient. Nasoendoscopy in particular is invasive time consuming and doesn’t pick much up. Clinicians are looking at changing the way head and neck cancer patients are monitored with a view to making the whole thing more patient led. One protocol being looked at is to have patients undergo a PET/CT at a year and those at low risk (ie no cancer) go on to a patient initiated appointments with guaranteed contact with their clinical nurse specialist and a two week emergency appointment with a clinician if needed.

This is the way patient surveillance is going and is the future

Below is information from Birmingham University exploring how this might be done. Anybody interested in this should have a go and we can shape the future of the folk who walk in our footsteps

,

The above link is not clickable so please copy/paste jbrett@brookes.ac.uk for further information

Online survey is at http://www.smartsurvey.co.uk/s/PETNECK2

A quick review of the year

A Snapshot

Light at the end of the tunnel? I’ve seen a few lights already. Some of them have been oncoming trains

BUT

After Lockdown we got away a few times. Still enjoying a beer 🙂

Then out of the blue came a message from Macmillan. Did I want to join the Community Champion Team?

Who are the Community champions? The Community Champions are a dedicated team of volunteers here in the Community. They are members who found the Community to be really helpful and wanted to give something back. Our Champions offer support and a listening ear. They help new members find their way around the site. Community champions also help the Community team to keep the site safe for everyone.  

I must admit I thought it was a huge challenge, a huge responsibility but I thought I could give it a go. My mate Hazel https://radioactiveraz.wordpress.com and I had already been running a WhatsApp group for people with head and neck cancer and I thought, yes….I can do this. It’s really strange. I was getting better but I couldn’t let this cancer go somehow, yet I wasn’t going to let it define me so I put it away in a drawer while I helped others along the way.

And then some months down the line we all got this…….so chuffed for everybody

Then summer came. We got more bees, some free

Swarm Arriving

Some quite expensive

Our new Queen Bee from Germany

Stan made a pond

And put up a new Barn Owl box

And even though the weather was bad and it rained most of the year our bees brought us some honey. We had enough to share and sell

Christmas time our Cambridge Fairy came out

And thanks to Covid-19 we spent a Christmas without the family and the children and the grandchildren BUT none of this I would have seen if it wasn’t for the brilliant NHS and my wonderful support teams at The Morriston and Singleton Hospitals

SO

Coping with Treatment

I was going to put a 2019 review up next but talking to somebody on the Macmillan forum https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum I think I’ll just put a few words up about treatment in general and how to be proactive. I’m not feeling brilliantly well organised just now so I’ll just jot a few things down in no particular order as they come to me. Lazy git that I am.

First, STAY OFF GOOGLE. I can’t comment really on chemotherapy so if you’re having Cisplatin along side RT drop Hazel a line here https://radioactiveraz.wordpress.com She is a mine of information.

Radiotherapy is not in itself painful but there is collateral damage to your mouth and throat and the side effects generally kick in around three weeks but by the end of week two you’ll probably have an itchy scratchy throat. Keeping your mouth in tip top condition can help reduce these side effects. There is research to show people with active gum and periodontal disease do much worse with RT so my advice would be theft if you have time get your mouth in the best of health. You get a dental exam as part of pre-treatment assessment in hospital but a visit to your own dentist to get a thorough clean is a good thing to do. Then work on it when you get home. Floss twice a day to get those gums nice and hard and make sure you get some high fluoride toothpaste from your nursing team so that you can start before treatment. The prescription toothpaste is Duraphat 5000.

There are protective mouthwashes and gels available OTC but they are expensive and available on prescription. Caphosol and Gelclair are the common ones. Some oncologists are wary of Caphosol as there isn’t any concrete evidence to support its efficacy but there is masses of anecdotal.

From Wiki and there are many other sources

Head and neck cancer

Caphosol has also been associated with low occurrence and severity of oral mucositis in a registry of cancer patients. The registry data provide further evidence to support the use of Caphosol to treat oral mucositis and suggest that Caphosol is associated with a low occurrence and severity of oral mucositis with high adherence to treatment as well as high levels of satisfaction from both patients and physicians.

The registry analysed the effects of Caphosol in head and neck cancer patients along with the frequency of patient dosing, adherence to treatment, and patient and physician global satisfaction assessments. Patients at risk of oral mucositis were given Caphosol and instructed to rinse 4-10 times daily depending on the severity of the mucositis. Patients and physicians completed questionnaires on the symptoms of oral mucositis, mucositis severity and satisfaction with the treatment.

The results showed that 88% of patients receiving chemotherapy and/or radiotherapy for head and neck cancer who had used Caphosol experienced no or low grade (mild-moderate) oral mucositis, and 44% experienced mild or no oral pain. Furthermore, the vast majority of head and neck cancer patients (79%) and physicians (78%) were satisfied with Caphosol as a treatment for mucositis.

I was given both once my mouth was ulcerated which is a tad too late. Ask for it as soon as treatment commences and use prophylactically

There might come a time when you find it difficult to keep brushing. I managed with my electric toothbrush and a sensitive head right the way through but there are softer options like Curaprox. Amazon have them.

Drink lots…… 3 litres a day. Heaven knows why this helps but it really seems to.

Some dieticians say to bulk up before you start treatment but I’m not convinced this helps. Being fit is a definite advantage but being fat on purpose seems daft. Yes, you can lose weight if you’re not eating but it makes more sense to make sure you can keep eating. Despite getting myself into a fix at around three weeks ( inadequate pain control) I lost only about 5 lbs. So we come round to adequate pain relief. Pain is better managed preemptively…..very important word, that. Not reactively. Take your meds on a rote basis and make yourself a list of when everything is due. You can take a heck of a lot of morphine if you need it. I managed 100mg a day plus 40mg of long acting without problems…….just remember the LAXIDO ( morphine has to be taken with laxatives or you get really badly constipated)

Food replacement drink. These are horridly thick and sickly sweet but one they come in at 2Cals per ml and you need 2500 Calories a day so you can see they are invaluable. Don’t stint. Dilute them if you need to. Rinse your mouth out afterwards. We are quite prone to oral thrush and the yeast thrives in the very sweet stuff that’s keeping you alive and well.

You’ll be given neck and jaw exercises. Do them. Do them before you start.Neck exercises here https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Prevent_and_reduce_stiffness_caused_by_radiation_treatment.pdf and Jaw and throat exercises here https://www.royalberkshire.nhs.uk/patient-information-leaflets/cancer%20information%20head%20and%20neck%20swallowing%20exercises%20head%20and%20neck You can miss the lip ones out.

All this seems really onerous and you might think what’s the point? But really, you might feel crap but if you can spend a little time doing some of them you’ll really benefit.

Moisturise your neck which will “burn” with RT. I used Cetraben through the day and Aloe Vera gel applied liberally as soon as each session was over. My neck got red and flaky but nothing to write home about

Finally I’d like to touch on damage to salivary glands. This can be quite severe and although my saliva has recovered maybe to 75% of what it was it will never be perfect and it’s taken two years to get here. You need to protect your teeth which rely on normal saliva to keep them safe. Artificial saliva can keep your mouth moist but keeping your salivary glands actually functioning must surely be a better thing. Stimulating them with sugar free chewing gum is key and if you throw xylitol into the equation you’re quids in; food for thought.

There is a separate post here on acupuncture. Have a look. It’s made a huge difference to me.

Really finally……. Do as you’re told by your support team. Don’t be brave trying to struggle through when there are ways and means of making the passage to cure so much easier and do use your daily contact with your radiographers to bring up concerns.

Really really finally. A positive attitude helps you cope with being miserable but there’s nothing wrong with having miserable horrid desperate days. Miserable people get cured too, they just feel worse so don’t be brave just be you because the rotten trampled frightened you is merely hiding the real you that will emerge in the end.

Happy New Year 2021

It just occurred to me that I haven’t posted here for months so the start of a new year seems to be a propitious time. Time to reflect and the mirror for these reflections is deep this year. Not a year to simply reflect on my recovery and marvel how life goes better than I ever hoped but to marvel equally at the ridiculous circumstances so many of us have found ourselves in.

Brexit…….such a passé dinner party subject…….Oh wait a minute! No dinner parties allowed.

Covid 19 is the new Brexit. I’m an avid listener to Radio 4 in the mornings. I’m a creature of habit; rise at 7 and spend an hour and a half in the quiet of the morning catching up on some computer work, checking in with friends on Facebook ,Twitter and WhatsApp and a cup of tea back to bed with Stan to listen to the radio. ALL we have heard for the last 9 months is about Covid.

Much has been reported about the impact on cancer services by the Virus and some figures have a 75% drop in referrals. It’s a tragic situation. It’s also a horrible thing to be grateful I was ill and treated before this year.

As far as my cancer goes all seems to be well. I’m still in remission and the magic 2 year anniversary is just round the corner.It’s reckoned that if you get to 2 years cancer free your chances are pretty good. I have had fewer face to face check ups this year as hospitals have to face extra Corona Virus precautions. My usual care is shared between Maxillofacial and Oncology. My MaxFax consultant has been shielding himself so I have had telephone consultations with him. I have been scoped at oncology twice this year and I’m now on three month check ups. Recovery has been largely uneventful with the odd glitch. In August I developed a swollen painful cheek that was diagnosed as a parotid duct stone and I was sent for a fluoroscopy. It was an infectioun. I’m a surgeon. I knew it was an infection….but I’m still at the stage that I knew it was cancer. I ended up at A&E while waiting for the scan and being put on antibiotics. I got better. Better ……… but a plea to my consultant fell on deaf ears and I had to get scanned……even though I was better. I told him I was better. I was mighty grumpy about that…..I was better and I had to have even more X-rays on top of the ten lifetime’s worth I’d already had. X-rays give you cancer!

Generally my saliva has improved to such an extent that I rarely think about a dry mouth through the day though I must admit I do have a tingling mouth irritation most of the time but I’ve got used to it. I still chew xylitol gum and that keeps my mouth moist and more importantly keeps the pH up to protect my teeth. I still have a battery of mouth care products and three monthly visits for a fluoride varnish at the dentist.

BioXtra is a mild mouthwash that’s excellent for dry mouth and you should be able to get it on prescription from your dentist or GP though it is available OTC

I can’t use Duraphat all the time as my mouth gets sore so every now and then I take a break and use Oranurse for a week or so. The GCMI paste plus is a calcium and fluoride based paste that replace lost calcium from your teeth and I use that last thing before bedtime to coat my teeth, then pop in a xylimelt and Zzzzzzzzz

Eating is practically back to normal with just a tiny sip of water needed at times. Dry meat like chicken breast is still a challenge but eating with plenty of gravy it’s a doddle. I enjoy a real ale occasionally and Prosecco went down nicely this Christmas so things are looking up.

More tomorrow. Lost concentration for now.

Surviving Covid-19

Well we are still here.

Matt Hancock the government’s poster boy

Time I put some more work into this blog.

I have been terribly lazy and not visited here for some weeks so I should get off my backside…or rather on it… back at the computer keyboard. In my defence Stan and I have been busy in the garden and poly tunnel and the bees have demanded more of our attention as the weather has warmed up.

Revisiting old problems

I thought I might remind anybody reading this about the problems that they might find once they start radiotherapy.The following is stolen from The Memorial Sloane Kettering Cancer site which is American, of course, so I make no apologies for the spelling. I will return here tomorrow with my take on a few refinements and some tips I’ve picked up along my journey and that of others.

The whole site is fairly comprehensive and you can visit this particular page here https://www.mskcc.org/cancer-care/patient-education/radiation-therapy-head-and-neck-swallowing

Radiation Therapy to the Head and Neck: What You Need to Know About Swallowing

Many muscles and nerves work together to help you swallow (see Figure 1). When you eat and drink, food and liquids mix with your saliva. Your saliva makes the food soft and moist.

Figure 1. Structures involved in swallowing

Chewing your food breaks it down. As you chew, the food and saliva form a ball called a bolus.

The bolus gets pushed to the back of your mouth with your tongue. Then, a reflex takes over and the back of your tongue pushes the food down. Your larynx (voice box) closes to prevent the food or liquid from entering your airway (trachea). The bolus then enters your esophagus (food pipe) and moves through to your stomach.

If the muscles you use to swallow or protect your airway are weak, food or liquid could enter your airway or lungs. This is called aspiration. Aspiration can lead to complications including pneumonia or respiratory infections (infection that affects your nose, throat, and airways).

Effects of Cancer and Treatment on Swallowing

Depending on the size and location of the tumor, your muscles and structures that support normal swallowing may weaken. They may not work as well as they did before you started radiation therapy. The side effects of treatment can also affect these structures.

Radiation therapy can cause:

  • Pain when swallowing
  • Sores (mucositis) in your mouth and throat
  • Dry mouth
  • Thicker saliva
  • Swelling
  • Taste changes

These symptoms begin 1 to 2 weeks after you start radiation therapy and may get worse during treatment. Most symptoms will start to improve about 2 to 4 weeks after treatment has ended.

Radiation therapy can also cause permanent tissue scarring. The effects of this scarring depend on the area that was treated. Below are some effects of scarring.

  • The muscles attached to your jaw may tighten and make it difficult to open your mouth and chew your food. This is called trismus.
  • Your salivary glands may not make enough saliva. This can make swallowing difficult because your mouth is too dry.
  • The muscles in your tongue and the back of your throat may not be able to move as well. This can make it harder to push the bolus down your throat and open up your esophagus.
  • The muscles that help you to protect your airway when swallowing may get weaker. They may not be strong enough to prevent foods or liquids from going down your airway.
  • Your esophagus may narrow, which can cause food to get stuck in the back of your throat.

Not everyone will have all of these problems. Your treatment will be planned to decrease your chances of developing them. Your healthcare team will also teach you things that you can do to help decrease these problems.

Other treatments can also affect swallowing. Surgery can affect parts of your mouth and throat, which could make swallowing more difficult. Some chemotherapy medications can cause sores in the mouth and throat. This can make swallowing painful.

Painful swallowing

If you have painful swallowing during your treatment, you will get pain medication to manage it. Take the medication as instructed by your doctor. If it doesn’t help, tell your doctor or nurse. There are many different medications that could be used to help manage your pain.

Swallowing therapy

You will see a swallowing specialist before, during, and after your treatment. They will:

  • Explain how treatment can affect your swallowing.
  • Teach you exercises to stretch and strengthen the muscles involved in swallowing.
  • Look for any changes in your ability to swallow as you go through radiation therapy.
  • Help you keep your ability to swallow after your treatment is done.

Exercises

Your swallowing specialist will tell you when you should start these exercises. These exercises will help to prevent changes in your swallow function during your radiation therapy and help you keep your ability swallow over time.

For each exercise, do one of the following, as directed by your swallowing specialist:

  • 5 repetitions, 5 times a day
  • 10 repetitions, 3 times a day

Swallowing exercises

Tongue hold exercise (Masako exercise)

  1. Put the tip of your tongue in between your front teeth.
  2. Hold your tongue between your front teeth and swallow.

Between each swallow, you can relax and move your tongue back to its normal position.

Effortful swallow exercise

  • Swallow normally, but squeeze hard with your throat and tongue muscles.

To squeeze hard, you can pretend you’re swallowing something large, like a spoonful of peanut butter.

Mendelsohn swallow maneuver exercise

  • Swallow normally, but pause for 2 seconds in the middle of the swallow before you relax at the end of the swallow.

To pause during the swallow, you can pretend that you’re holding your breath in the middle of the swallow for 2 seconds before relaxing.

Supraglottic swallow exercise

  1. Breathe in (inhale) and hold your breath.
  2. While holding your breath, swallow.
  3. Breathe out (exhale) forcefully.

Shaker exercise

  1. Lay flat on the floor or a bed.
  2. Lift your head as if you’re looking at your toes.
  3. Lay your head back down.
  4. Repeat this movement 30 times.
  5. Next, lift your head. Hold it in this position for up to 60 seconds or for as long as you can. Then, relax.

Jaw exercises

Active range of motion and stretching exercises

Sit or stand. Hold your head still while doing these exercises.

  1. Open your mouth as wide as you can, until you can feel a good stretch but no pain (see Figure 2). Hold this stretch for ______ seconds.
  2. Move your jaw to the left (see Figure 3). Hold this stretch for 3 seconds.
  3. Move your jaw to the right (see Figure 4). Hold this stretch for 3 seconds.
  4. Move your jaw in a circle. Make 5 circles in each direction.Figure 2. Opening mouthFigure 2. Opening your mouth Figure 3. Moving jaw to leftFigure 3. Moving your jaw to the left Figure 4. Moving jaw to rightFigure 4. Moving your jaw to the right

Passive stretching exercise

Figure 5. Passive stretching exercise
Figure 5. Passive stretching exercise
  1. Place your thumb under your top front teeth.
  2. Place the pointer (index) finger of your other hand on your bottom front teeth (see Figure 5).
  3. Open your mouth with your fingers. Don’t bite down or resist. Let your fingers do all of the work.
  4. Hold this stretch for _____ seconds.

Managing dry mouth or thick saliva

Try the following suggestions if dry mouth or thick saliva is a problem for you:

  • Drink 8 to 10 cups of liquids a day. Being well-hydrated will help loosen thick saliva.
  • Keep a bottle of water or other liquid with you when you’re away from home. Sip from it frequently throughout the day.
  • Chew sugarless gum or suck on sugarless candy. This can cause more saliva to flow.
  • Add sauces, gravies, or other liquids to your foods.
  • Use a humidifier at home to help loosen thick saliva and secretions.