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We’ve had a bad few days starting with Ken’s PEG Tube falling out and no one knowing how to put one in for 7 hours!! Anyway that crisis has now been resolved but Ken is really suffering with a dry mouth. The stringy mucous stuff that was choking him and making him gag has gone, only to be replaced by a mouth as dry as the desert!
Ive found an NHS Trust care leaflet for H&N cancer patients that suggests a nebuliser with saline solution. We’ve never been offered this. Should we ask for one? Who would give us one? Has anyone used one? And if so, does it work?
Also, while I’m here......how do we instigate acupuncture or are we trying to run before we can walk? Ken is just over 4 weeks post 30 radio treatments and 6 chemo sessions.
We have XyliMelts (but he can’t use them right now as there’s no saliva to make it stick) and Caphosol. We also have Glandosane synthetic saliva spray but we were told not to use it due to its acidity and effect on Ken’s remaining teeth. I’ve tested it and it’s PH 5.5. Should he use it? And what about Biotene mouthwash?
As ever, grateful for your thoughts and experiences. Apologies for so many questions. Xx
Sharon and Ken xx
You never know how strong you are until being strong is the only choice you have.
Hi Drivermason, I take it was the ballon type PEG that came out, i had one where the balloon deflated and its can out so i just put it back in, thankfully an Abbott nurse was on her way to see me so she changed it, I would have done it myself as i always have a spare one. I was shown by the same nurse how to do it in an emergency.
A nebuliser will loosen up the mucus and will give you more moisture in the mouth but its mainly used for the mucus, but it's worth a try. I got one on loan from my hospital so maybe ask if they have any for loan , you can also buy them , I don't think they are mega expensive. I'm afraid it's just good old water that I use and have been since 2008 as I never found anything that helped saliva wise. It's good to have one handy especially if he gets a cough, cold etc as it does help the lungs work better.
I think you should give it a few more weeks before going the acupuncture route as four weeks is still early in recovery terms, I have never gone down this route. I found Biotene products very good and did use them in my early stages as they are so mild, the Glandosane is not good for the teeth so I stopped using it.
Let's hope Kens PEG stays in this time, I have to change the water in mine tomorrow , that's if he does have this type. No need to apologise as we all had questions and queries at the start and during our journeys, I'm still learning 11 years down the line.
Thanks for your imput on this forum it's lovely to see, all the best with the dry mouth, take care.
Its sometimes not easy but its worth it ! Click here to find out more
Thanks for your speedy reply.
Yes it is a balloon PEG and now that you’ve said that I have no idea why we didn’t just put it back in and tape it on till we could get help. Think we just went into panic mode at 3am. Everything seems worse in the middle of the night. We now have some things that look like large golf tees in different sizes and you just insert the relevant one until you can get help. We were extremely surprised that a hospital as large as Darlington. Old not find anyone to help us for 7 hours.
We’ve got a Nutricia nurse coming out on Tuesday to bring us a clip for the new tube (it doesn’t have one and when the syringe is attached the stomach contents fill up the tube!) so I’ll ask her to give us a lesson in what to do if it falls out again.
He’d only had it in 2.5 months and the balloon had completely disintegrated. Not sure if we were unlucky or if we should have noticed some earlier signs. Someone mentioned too much stomach acid and we have had issues with finding a Lansoprazole that’s suitable for the PEG. We finally got one but only a couple of weeks ago. Prior to that I was crushing them rendering them ineffective.
Ill have a look to see how much the nebulisers cost and I’ll mention it to our GP to see what he can suggest.
Ill also put a request in now for some Biotene products and we’ll give up the Glandosane.
We knew the dryness was coming as we’d read about it on this forum. But I don’t think he was expecting it to be this bad.
I like to try and help people on here if I can share any of our experiences. We’ve had plenty of help and advice on here so it’s nice to reciprocate. I wish I had more time to help as sometimes just receiving a reply acknowledging the issue is helpful in itself. This whole H&N cancer business is a very scary process.
Hi the nebuliser I was given in hospital during treatment and used both saline and palin water as the saline solution series you out to be honest I only used not it during treatment as once mucus had gone it didn’t help has out was too dry bit like Ken is wasn’t .yes 18 month in dry mouth is still there no where near as bad but it’s there. Water water and more water I go everywhere with water ,try at night little sip of water and stick the xyimelts what I did in the start.
Acupuncture I paid privately for mine and yes it’s made a difference from day one I didn’t find an acupuncturist until I was 12 month out l You can see if your trust will pay but mine wouldn’t .My sessions cos pt £35 at time and I had 6 spaced over 4 month period .its never too early to start and wish I had found one earlier but I live in the middle of nowhere well not many acupuncture places near me .You have to have a believe it will work and go with an open mind any negatives like she said it won’t work for everyone .Most people feel energised after it I was in the samall percentage that felt worse so bear that in mind if you do find one. don’t know if Ken has lost his uvulva the dangly thing at back of throat mine melted through treatment and I didn’t finding out until nearly a year after ! That makes a huge difference to saliva and swallow as when u have one you don’t really know what it does but when it’s gone it makes a difference ,one if it’s main functions is when we are talking it shoots saliva down the Throat plus it helps move food along. Our saliva glands do get fried along the way and takes a lot of time to regenerate Any consolation now 18 month in I don’t get my tongue sticking to roof of mouth any more , I use 1/2 an xyimelts at night and now get 8 hour sleep regular sleep ,it really isn’t the worst side affect now I would say I am about 85% normal saliva during the daytime but always always have water and I can’t deink tap water as too chlorinated .re the biotene mouth wash the p h is 6.5 .my dentist recommended bio xtra dry on prescription so have used that but I still clean and use interdentals after everytime food goes in my mouth My dentist says considering what I’ve gone through teeth are in excellent condition although I had little filling in over 20 years in December .hope this helps.
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz,wordpress.com.
i give a honest account of my experiences with tonsil cancer
Hi Sharon just adding to my post ,think like Chris 4 weeks could be a little early for acupuncture when I thunk about it ,he won’t be feeling brill and like I said it made me feel worse for a few days wouldn’t hurt to try and finding one for a bit later down the line .Yes dry mouth is really the Pits you can’t even begin to describe it apart from imagine your worst ever teenage hangover and that’s what Ken will be feeling every waking minute of the day was the best way I could describe it to my hubby.The only peace I got from it was the brief periods of sleep I got. In fact u said that to John this morning when I am asleep I don’t think about my mouth anyone else know what I mean ?
Hazel sorry for ranting lolxx
Hi Sharon and Ken
My father in law had a nebuliser which was lent to him by the hospital but that was to help with the mucous. Luckily I didn't suffer with bad mucuos so didn't require one.
The dry mouth is awful. I was prescribed Biotene mouthwash by the hospital dentist and the hygienist, 6.5ph. I used it all through my treatment and still do. I found that when my mouth was very dry at its worst the Biotene was pleasant to use as it helped freshen my mouth from the horrid taste and although it also helped to moisturise my mouth I wouldn't say it actually helped keep it moist. Nothing I used worked in that way so I just sipped water incessantly. It's such an odd sensation as I found it doesn't matter how much I sipped water it just gets wicked away immediately.
Now that I have some saliva sometimes I find the Biotene is still useful for freshening my mouth and it also helps keep it moist for a little time. But then I also find that chewing gum helps a little now whereas I just couldn't use it earlier on with no saliva.
I can't comment on the efficacy of acupuncture as I havn't tried it for dry mouth but I do know some hospitals will fund 6 appointments of alternative treatments.
And never apologise for asking questions Sharon!
And no need for apologies re any rants required.
You guys on this forum are all amazing with what you have been / are going through and the advice you give out.
I have to say Ken's side effects are pretty much text book and he's experiencing everything the literature and this forum said he would.
I've just tried to have a look and it seems his uvula might still be there. Difficult to see really as he won't let me press down on his tongue. If it was going to disappear would it have gone by now?
I've been doing some research and established that all the Bioxtra products are PH Neutral. I found the attached paper and have just requested all the products apart from the toothpaste (as we have Duraphat now) from the GP.
Watch this space...….I'll keep you posted.....
As an aside.....we asked for Polymem dressings once and the GP nearly had heart failure at the cost! £50 for a box of 4. We got a phone call to say we were allowed them once!!!
Hi Sharon oh yes my g o changed my 48 bottles of Ensure to 12 bottles of something Aymes at 12 bottles 500 mil giving 125 calories umm no way could I swallow that much Ensure 125 mil equals 300 call he-really didn’t have a clue ! How difficult it was to drink 125 mil but it was all budgets.the bio xtra I find early good so get yiur dentist to prescribes it as well as dr as yiu will go through the mouthwashes .i also use boots dry mouth spray which I buy £2.50 always have that in my bag it may be a bit harsh for Ken at the min but worth getting for later .
my uvulva no one can give me an answer as to when it went I didn’t notice it until 12 month after treatment, when I could finally open everything wide enough to see !!! I then mentioned it to 3 others who also were similar stages to me and 2 of them looked and there’s as gone .i did ask my oncologist if he could tell me hi s reply was radiotherapy works well after treatment finished so could have been anytime in that year I then asked did my tonsils come out said umm will read notes said no nit taken out but looked and proclaimed they had melted , so am I a Cannibal who has eaten her own body lol you have got to laugh sometimes .
How are you Sharon ?
ive Just has my 3 monthly check up so for all of you out there I am now 18 month post radiotherapy and all is looking good ,old fashioned consultant doesn’t need camera just gauze round the tongue and a quick yank ! She can see what she needs to and proclaimed everything looking good, not seen her since diagnosis day either !proclaimed your uvulva is a mere stump poor you cheers !
just thought I’d drop in thoughts about acupuncture
it’s not just any acupuncture. Google Auricular Acupuncture. There’s lots on the internet about it as it is a recognised treatment for xerostomia where the major salivary glands are not working and you are trying to get the minor ones to kick in. I posted an update on my blog yesterday with pictures. Basically it’s three needles in each ear and one in each index finger. The important thing is that the points are easily taught and you don’t have to have five years at acupuncture school. For me the results have been spectacular. I was told that no treatment should be started till at least three months past the end of treatment but I have found a research paper suggesting that acupuncture during radiotherapy might have a protective effect that might be so as different salivary glands are being targeted
I am 13months out of radio
I have had five weekly sessions and my mouth fills up with saliva now within five minutes of treatment. My mouth remains moist till the evening when I resort to chewing gum I no longer bother taking water out with me
Hope this helps.
Hi agree with beesuit when I had the needles in ear and index fingers get a much better response, than just in web of hands and along face .ive just done an hour or more in garden weeding got to be done ! No water with me just hope it gives hope to all the newbies .
Hi Drivermason, yes that does surprise me that it took 7 hours, i was just sitting on my bed and the tube just came out, mine was a dodgy one. The nurse will do a ph test before they change the tube so it could have well-been acid that disintegrated your husband's balloon, im not sure what they do if the acid is high so it will be interesting if this is the case. Most tubes are changed every 6 months so 2.5 months is a very short life . I know what you mean with the clip as many a time mine leaked all over my clothes or bedding as some do not have caps on the end although the new one they are using does have a cap on it so if the clip fails nothing will leak out. Its good that the nurse is going to show you, hopefully, she will get you or your husband to inflate the balloon. Let's hope you manage to get a nebuliser and the dryness improves with time. All the best .
Thank you for asking about me. My breast cancer very much takes a back seat to Ken’s tonsil cancer. I’m still off work, so that’s coming up to 5 months now. Pay reduces to half pay soon so will try to get back on a phased return maybe in a month or so.
I’m just exhausted all the time and think that’s partly due to my surgery and treatment and partly to the interrupted sleep I get due to Ken getting up and down all night etc.
I want to be off work as long as poss as I like to be here to make sure Ken does what he needs to.
I’ll keep you posted about Ken’s uvula and I’ll keep trying to look down his throat.
Great news your 3 month check up was all good. I imagine each check up is a worrying time. Never heard of the gauze around the tongue and yank method! Ken has been told he’ll have a camera at the end of this month.
The GP didn’t get back to us yesterday so we don’t know if we can have the BioXtra products yet so we’ll just keep our fingers crossed.
I hope Storm Dennis has not been too rough on you. We’ve not had it yet!
So I’m thinking BioXtra and Biotene are similar products? Think I’ll try to get some stuff today whilst we wait for the GP to decide if we can have my of them on prescription. I often wonder about the benefits of the free prescriptions for cancer patients when the GP won’t let you have what you need!
I’ll ask about the acupuncture at our first appointment at the end of this month.
I’ll get him to try some sugar free chewing gum today too and I’m going to put him on mineral water instead of tap water.
Thanks for the reply and hope you have a lovely weekend.
just constant hard rain at min no winds we are no where near any rivers so that’s a good thing , but the Calder valley area Hebden bridge is braced for a deluge! Roll on Spain although our resort got two gota fria 48 hour deluges last year !
Eventually Ken will sleep through honest doesn’t feel like it now but all of a sudden a light switch moment happens ,it’s unfortunately early days.Just wish the hospitals would explain the recovery phase a but better ok there’s spa few that sail through it but many more take longer ,which seems to be more and more of us.
just gently phase work in that’s only advise I’ve heard from people who are still working is what’s worked for the majority of them.
My cancer was tonsil area and in consultant s words why do I need a camera up yiur upnise to look at Throat if I say it’s not sore why irritate it. But if I get a locum dr they love any opportunity for camera so I then end up with irritated nose and throat for weeks .But as we all know we are all different !!
Try your dentist as well mines brill she gives me everything she can as like she says she has an invested interest in helping me keep my teeth .So yiu have the curaprox toothbrushes for ken they are very soft and gentle from amazon .
keep in touch stay safe we aren’t moving anywhere this weekend got plenty if good books .Ps I lost my passions for reading for 5 months just had no concentration watch out for that.
Thanks for the info about acupuncture. I’ll have a look at the latest entry on your blog. I was already familiar with it and with RadioactiveRaz’s one too but need to keep checkin* for updates.
I’ll have a look on google too which I seem to spend my days doing lately.
Ken is desperate to try anything that might work and I feel the GP and the staff at the practice never understand the urgency of things.
Hope you have a lovely weekend and are not too affected by Storm Dennis. We have the torrential rain here now.
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