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I have learnt that comparing head and neck cancers and treatments is like trying to compare hand prints. They are just far too individual. However, when I was doing my "plan and prepare" for my husbands treatment I found some very useful information on this site and lots of people were very generous sharing their tips. I thought I would share some of mine. Please remember though that they might not necessarily be of any benefit to you.
Just to recap. Hubby (58) was initially diagnosed with primary SCC on base of tongue & left tonsil. (which then spread to entire left side of tongue, so too big to operate) Secondaries in both sides of his neck lymph nodes - these were all removed with neck dissection. All of it was full on, high grade 3/4 so treatment was as grim as it can get. He has the added complication of having CLL too. Treatment finished twelve days ago ! Oh - he also had all but five teeth removed prior to RT!
After surgery, he had six weeks RT and three of the six planned sessions of Cetuximab (it had to be stopped as side effects were too extreme) He had such neck swelling from the neck dissection that he also had to have a second mask made but it didn't delay his treatment. He had a RIG feeding tube fitted, thank goodness and has not been able to eat for over six weeks now.
What I have learned is that despite my very very best efforts I was not able to stem the tide at all of side effects that overwhelmed him. I found that one of the hardest lessons to learn but have had to let that one go. Sometimes despite our very best endeavours, nature just has to take its course.The Oncologist said that Most people get Some side effects and only a very few get them all - hubby had them all to the extreme. However he is now in recovery stage and is coping well. He's not been a difficult man to look after and I still think he's the best guy in town!
Just to add, anyone who wishes to use anything other than products issued by the RT nurses to double check with them first.
Due to the number of products like face creams that contain metal (!) very few products can be used during RT. However, having said that nobody ever asked hubby if he was using anything else?
Shampoo and body wash - we only used an organic Aloe Vera product as wanted to clean but very gently. Green People served us well.
Mouthwash - Difflam & Corsodyl was ok to begin with, then had to dilute it. Week three it became far too harsh. Then used weak salt solutions but even that became far too much. Final weeks just plain boiled water every few hours, I left bottles in the bathroom. Room temperature was acceptable.
Toothpaste - Duraphat 2800 was given by dentist and served well for a few weeks but became far too harsh as the mouth ulcers developed. OraNurse which has no taste has been a success. Also I bought very small baby toothbrushes with very soft bristles. These were changed frequently.
Skin - the dryness of the skin was almost immediate, very flaky. Aqueous Cream plastered on every single day and at least three/four times. All over the face and neck. It doesn't prevent anything happening but keeps it moisturised. Aveeno cream from Boots was also used at weekends and I still use it now on his back and shoulders where it is very dry. Hands were very dry too due to the Cetuximab and the only thing he could tolerate was Udderly Smooth Hand Cream. Even the Aloe Vera and Clarins hand cream would burn through the cracks that appeared on his palms.
Lips - Aloe Vera lip balm was a real life saver. I have ended up buying about ten of these. They were used throughout the day and just prior to going in to RT. Very handy. Hubby's ulcers were all over his lips too from week four but he could tolerate this product well.
Mouth Ulcers - these popped up and developed very very quickly. Ulcer is really the wrong word for it. They were great big lesions that joined up together on his lips, gums, inside of his cheeks and the worst one was the roof of his mouth. That was about the size of a fifty pence piece. Absolutely nothing we tried could rid him of the pain these caused so his Morphine was increased to Slow Release tablets with Liquid Concentrate for breakthrough pain ( and he used that alot!)
Ulcers had the most impact on H's well being so I was deeply sad we could never really overcome this problem. It was also the reason for him to finally stop eating anything at all as the blandest of the blandest food was too much for him to cope with - and he ain't no wimp either!
We tried Orabase on the ulcers when they first showed up. This is a very heavy duty paste that coats the ulcer. H found it too clumpy and played havoc with the phlegm spitting in the morning. Gelclair had some use. H was given some by our RT nurse but I also emailed the company and they sent me a free sample (something that has proved quite a useful thing to do). First H used it as a dilute mouth rinse but that was too harsh, it was ok to put it directly onto the early ulcers though. Episil was a two minute wonder. At about £70 a go our GP was very good at letting us try it. The product seemed ok but the dispenser part was just not adequate for the job and we got into a terrible mess with it and wasted quite a bit. It gave some relief but as H put it "not £70's worth". Was also tough to get hold of too.
Xylocaine - this was prescribed by the Oncologist for the mouth ulcers when they were at their worst. Its an anaesthetic spray in a pump. However, we had such warnings about its use from her and also the Pharmacist that we both chickened out of trying it. There was concern that due to the total numbing effect of the spray he may possibly bite his tongue or the inside of his cheek. We decided it just wasn't worth it.
Mucous & Dry Mouth - Good old Caphosol has been brilliant. It is very expensive which can cause some issues with the prescription but we were fortunate to get some from the hospital and some from our GP. We also bought some of our own stock online as H uses it ten times a day which is the maximum dose. It is essential though that the minute x 2 rinse is done - so if you have a timer in the bathroom, even better.
I also bought some Kitchen roll - Plenty The Strong One. This has been invaluable in the home and car. It is quite soft and doesn't disintegrate. I also bought a large number of non-sterile non-woven swabs. These were great for mouth wiping and sore spots. Plenty of disinfectant in the bathroom too. The mucous has the appearance of "snot" (sorry!) and when it's spat into the sink area it is a pig to remove. It's not unlike glue really plus of course there is often blood too. As this process happens frequently throughout the day I felt it important to keep everything clean so also bought a lot of antiseptic floor wipes too.
Disposable plastic cups have been great too. The yuk stuff from H's lips meant that the cups for mouth washes etc would often be coated and grimey so this was the best solution for us
Olbas Oil has helped a little too. We have a nebuliser here which was great but a few drops in warm water would be just as good. It's just helped with the sensations going on in the mouth - both the mucositis and the dryness.
Evian Spring Water Spray or Avene Eau Thermale - we weren't able to get this on prescription and it is expensive but it has been an absolute godsend for H. The Evian is in a small bottle so he carries it around all the time and helps in those moments when talking is tough. The Avene is a larger bottle kept at home. The speech therapist was very interested in this and she is going to look into being able to get some for future patients. It's just a fine mist of water sprayed into the mouth. I had planned to try buying an atomiser and seeing if that would work. An ordinary household spray was too harsh and dispensed far too much. More a soak than a mist!
Artificial saliva - there are three products recommended for dry mouth following RT so of course we tried all three. Gels, mouth sprays and tablets all played their part and none was better than the other. A S Saliva, Biotene & BioXtra. All can be bought online. We are waiting for the Acupuncture appointment to come through now so hopefully that will help massively.
Water bottle - this small bottle with a screw lid never leaves H's side as it's so important to keep the mouth hydrated at all times.
Miscellaneous - there were several things that helped over the many weeks we attended RT.
***First was H's blanket! The first day he mentioned how cold it was in the RT room so I retrieved "the children's sick blanket" from the drawer which was just perfect. We dated it over 50 years old ! My mum had given it to us when our first was born to use on his cot, it's a cotton one with air holes in it. It was used by my mum when I was small and we used it for all our children when they were poorly. It measures about 3 ft by 3 ft. but is very light. H felt a bit of a numpty going in with it but I asked if it was ok and they were more than happy to accommodate him. That blanket went in with him every day and it was a comfort to me to know he was warm. He said it was worth its weight in gold. He had quite a few jokes with the nurses about it too!
***Secondly there was the little silver plastic bucket which travelled everywhere with us. It came in very useful on journeys especially as H was being sick so often.
***THE BAG - I used our old beach bag for travelling. I kept one of everything I could in the bag including his pain relief. We just never knew how long we would be away from home so I made sure if we ever got delayed he would always have what was needed with us. One day we were caught up in a road incident which kept us stuck for over three hours. I was very glad I was well prepared. It coincided with the time he had a runny tummy too so it was even more appreciated than normal.
***Feeling the cold is normal. I popped an extra blanket in the car and a comfy cushion so H was warm and could always sleep on the long journeys comfortably. He still feels the cold a great deal now. I bought an old fashioned candlewick bedspread from Ebay and it's been a real bonus for H. I'd forgotten how warm they are! He also has his "rainbow blanket" for the sitting room!
***Keeping hydrated is essential during RT. H was advised 3 litres a day. With a sore mouth and feeling so sleepy all the time we had some scary moments when he was clearly dehydrated. I bought a really good water bottle to keep in the car and just kept nagging him to drink, drink, drink. It was one of the hardest things to enforce though. In the end we borrowed a drip pump from the dietician at the hospital and just plugged him in every night through into his feeding tube. I wish I had asked for it sooner looking back but can't spend too much time thinking about it. As a guide your urine should "look like champagne not cider". If it looks dark - crank up the fluids at once. I can't overstate what a difference it made to H.
***Neck protection is essential. As the RT kicked in H's neck became rather sore so I bought him a mans silk scarf which kept out the cold and protected his neck a little. Sun and wind are the necks enemy during this time.
***Vinyl disposable gloves. These have been wonderful. My obsession with keeping every thing clean means that I've used lots of these. I wanted to do everything I could to prevent H picking up an infection so this was part of the strategy. Ideal for putting on creams etc.
***Extra cotton pillow cases. The burns left a great deal of debris on the pillow cases overnight so I made sure I had some extras as well as the top sheet which was often covered in yukky stuff.
***Liquid vitamins. Due to H's frequent vomiting i decided to give him daily liquid vitamins as I didn't want him being undernourished. The dietician at the hospital said that was fine so I used Alvitayl. It was harder than I thought to source a multi vitamin in liquid form that could go straight into his feeding tube. When he was able to swallow pills I just used a multi vit from Boots. I don't anticipate using them for long but whilst in recovery I am happy to continue.
***Clothes. Due to the terrible soreness around H's neck it was a challenge to use the right clothing. I had bought lots of t shirts with a low neck when he had his neck dissection so i've carried on using these plus some with long sleeves. However, with these I've just got the scissors and cut off around the neck area so he has a good wide margin without touching the burn areas. I also put them inside out too so that no seams irritate him. Going outside is a difficult matter especially with the cold. To date we have just wrapped a folded cotton pillow case around his neck to protect it from his coat collar. It also stops frightening young children.
***Digital thermometer. Easy to buy on Amazon but this was a very useful thing, especially on days when H was feeling under the weather. At least being able to check he had a normal temperature went some way to making us feel a bit calmer and that things were "normal".
Radiotherapy Burns - I've got to say these were one of our biggest challenges. They were horrendous. The speed with which they arrived was breath taking. Initially we used Hydrogel Wound dressing but didn't help. Then for a couple of weeks we used Intrasite Gel. The burns produce thick layered blobs of skin which I refer to as "The snot avalanche" coz that's just what it looks like. The Intrasite Gel is brilliant at eating the snotty bits and there is no limit to how often it can be put on. When it truly flared up we tried the Actiform Cool but H didn't like the feeling of it and it was almost impossible to keep stable on his already very sore neck. We only tried that twice. To clean the burned skin I used Debrisoft pads but once again very expensive. The non-woven swabs are a real help here with plain water. The main product which has been of benefit is Flamezine. It contains silver so can't be used during RT but it has antibacterial properties so it has been great post RT. I put it on H twice a day after he has showered. It is sensitive to light so it must be kept in the dark at all times. Prescription only.
Touch - this probably sounds a bit cranky but it helped us. Because of H's feeding tube, sore mouth and sore neck and generally feeling rubbish it was difficult for us to maintain our warm relationship we share. So pretty much every day I've given him a back massage or a foot massage. I use creams like Aloe Vera or the Aqeous cream or Bio Oil. He said it's really helped as it relaxes him and it's nice for him to think about his back instead of his mouth and neck. It gives us a chance to be together in a quiet and calm way and a nice way to end the day. However, he does owe me a MAJOR back massage now!
xx I wish anyone about to embark on the treatment journey all the very best. You will find your own way of coping and remember you are never alone. This forum has great support for both sufferers and carers too. The likelihood is that you won't experience half of these symptoms, my darling H was just unfortunate. Whatever happens though, I hope this list proves useful to you. xx
Don't forget to keep eating, keep drinking and never tell anyone you are fine !
Really really helpful post/thread summerleaze.....thank you!
Really useful and informative, particularly for those embarking on treatment. John still uses the Aqueous cream all over his body as since radiotherapy in 2011 his skin remains dry and sensitive.
Hello Summerleaze. A brilliant and helpful post ! I wish that I had known about some of these products when I was going through my radiotherapy ... it may have saved me from some of the distressing side effects, sigh !
Well done ... just a shame we can't ' pin ' this one permanently to the top of the discussions, keep up with the great job.
Thank you for your post. Very helpful and written in such a compassionate way, it made me well up as the love for your OH shines through. He is a lucky man to have someone so dedicated to his care, and believe me as an ex Professional Community Carer..many are not so lucky.
My OH is having Palliative RT (Week 1 just completed) for SCC of the tongue with secondaries in Lymph nodes. He was non surgically viable due to already having severe COPD issues. Chemo & Radical RT was originally planned but cancelled on Xmas Eve when 2 further metastesese tumours were discovered in his right lung.
He reacted very badly to his first RT sessions with major swelling, pain & sore mouth so we will be adopting quite a few of your tips. Because the mask did not fit until the swelling reduced its taken us 10 days to get through the 1st 5 treatments, so I really cannot imagine what your OH has had to bear. i hope all goes well for you both.
I couldn't respond immediately, because your post brought back too many memories and I didn't want to start crying and writing rubbish.
But it is a brilliant summary which I think should be "pinned" somewhere and kept for everyone on this Forum to refer to.
The other thing I wanted to say is what a wonderful, caring organiser you are. The thing that made me want to cry was that I wished I had had someone like you there for me when I was ill. Not that my husband didn't do his absolute best, he was marvellous, but it's all those little things that you have thought about so carefully.
The thing that finished me off was when you said about having bottled water in the bathroom, so that your husband didn't have to rinse his mouth with cold water..... I never thought of it - I didn't know whether I was coming or going by the middle of my treatment, I was just trying to survive. I suddenly remembered the misery of being in the bathroom in the middle of this night, rinsing my mouth with dilute Difflam and trying not to cry out loud enough to wake anyone, then how unbearable the cold water from the tap would be.... at the time I only thought of leaving a glassful of water out when I went to bed, so it would get to room temperature, but it would have been so EASY to have had a bottle up there....
With much love and best wishes to you both,
Thank you so much everyone for your really wonderful positive comments.
I've had such a lot of help from all the lovely people on this site that I thought I would try and give a little something back.
I know they are making changes to the site so maybe there will be a facility to "pin" this or make it a "sticky" in the future.
If it's ok, I will bump it up from time to time.
Bron and Joycee you have my heartfelt admiration for getting through this ordeal. So so brave.
Mike and Jilly, I wish you both well over the coming weeks. xx
Sorry but do all of these products come recomended or do I have to ask for them as the radiation and chemo intensity increases
Do hospitals always offer these product as standard.
Many thanks Nik
Hi Nik...my husband started RT recently at Derriford hospital, Plymouth and so far they do not supply all the products recommended and our GP is in their words 'reluctants to interfere' whilst OH is still in treatment there..so I think the answer is..every hospital/GP's practise have their own ideas and approved products. We are seeing the team again tomorrow and as I'm not happy with the limited products we have so far been supplied I'm going to press for alternatives. I can give as an example..Derriford give Biotene & Difflam mouthwashes & not the better more expensive Caphosol..so far that it, I'm giving it another try Monday if not succesful I'm going to ask if they will approve its use and then I'll press for GP to prescribe it.
Hello Nik and Jilly. Unfortunately not every hospital will supply some of these recommended products for head and neck cancer patients due to costs ... for example, Caphosol is rather expensive even though many patients have found it beneficial during / after radiotherapy.
I had my RT at Manchester's The Christie ( a superb cancer hospital ) but all they offered was Oramorph and Difflam once the unpleasant side effects started. Sadly I didn't know about all these various products at the time so would recommend that you ask for them one way or another. They can be bought directly from the supplier, but very expensive ... so do ask for a prescription.
PS Here is the link for Caphosol UK ...
I was treated at the cancer centre at the new Queen Elizabeth hospital in Birmingham, and they are excellent.
They gave me as much Caphosol as I wanted -- it really does help -- and also gelclair, which is very helpful except you're not supposed to eat or drink for an hour after using it. For pain relief once the side effects became a problem, they gave me soluble co-codomol to take four times a day, fentanyl patches">Durogesic fentanyl patches, and Oramorph for when the breakthrough pain got too much. Together, that certainly made the pain bearable.
One thing I would certainly recommend, though I understand not all hospitals and health districts use it because of the cost, is PolyMem dressings. I ended up with a radiation burn about 3 or 4 inches from top to bottom, running nearly all the way round my throat, and those were so soothing and easy to apply and adjust..
My husband is being treat at the Freeman Newcastle upon Tyne , he was given as much as he wanted of everything he needed ,Caphasol , several different saliva sprays, a spray that anesthetize his throat ,lollys that anesthetised his mouth , biotex ,codiene, oramorph, MST . Our GP wouldnt prescribe Caphasol as it was not in the BNF , they also wouldnt prescribe the saliva sprays only by private prescription,however I challenged this and it was the computer that refused to issue a prescription so the GP wrote a prescription .
So much for equality across the NHS , noone should be denied medications that will help ,maybe this is an area which Macmillan could address.
Caphasol was not around six years ago the first time my husband was treat .
Hope this is helpful .
Guys, any suggestions for dry mouth/lips? I am 6 months finished RT & dry mouth is killing me!! Especially when talking, so difficult. Ive tried bioxtra spray & gel and havent found it of any great use. Would appreciate to hear from anyone who has a "magic cure"! ha ha.
Possibly not a "magic cure" and I'm still in the early stages of this but Biotene is working well for me....have you tried that? It was the first thing my team gave me.
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