Bad salty taste

Hi weefrank 

The salty mucous is due to the damage the radiation is going to your salivary glands. All you can do is to try to mitigate the effects. Yes try to drink lots. They say 3 litres a day. I never managed that much and you are not far off that anyway. The sip snd swallow  bit is to keep your swallowing muscles going. You can do that with exercises. You would have been given some by speech and language nurses. I did mine religiously. 
A nebuliser might help. I managed just by steaming my head over hot water twice a day for a week or so. Sometimes all you can do is get your fingers in to your mouth and pull it out. Yuk! But needs must. I spat a lot. It does go. I promise. But it is normal. 

hi As Dani says hydration is the key jm The mucus does go as quickly as it came . I used nebuliser at least 6 times a day during the night as well. I was also prescribed carbusistine to help thin the mucus it’s worth asking if you can have it prescribed. I too also did a lot of spitting not nice but necessary. I also dipped flat Diet Coke and soda water when u could. Also did the swallow exercises regularly 
hazel 

I had two surgeries for my base of tongue cancer and haven't needed chemotherapy or radiation. The second surgery to get a clear margin at the back of the tumour led to a problem with mucous. I was surprised because everything I've read here suggests it's a possible outcome of radiotherapy. For about a month I was having to clear it from my mouth with my fingers or tissues and now 7 weeks after the 2nd surgery this horrible salty mucous is a constant irritation. I find myself clearing my throat of it all day long and it's infinitely worse when I eat or drink.

Video fluoroscopy showed that there's nothing wrong with my swallow and food isn't going down the wrong way anymore but I really hope this horrible over production of salty mucous goes away eventually. If I keep swallowing it I get nauseous so spitting it out has become part of my day with a jam jar in my bag when I'm out and about!

I've got an appointment next week at last to treat the lynphadema in my neck around the neck dissection scar which has got steadily worse since surgery in mid December despite regular Physiotherapy and doing the exercises. The swelling seems to constrict my throat and is horribly uncomfortable and although I only had the dissection on one side he swelling and strangle feeling is now spreading to both sides.  

The nerve damage from the neck dissection continues to be an unwelcome adventure in the slightly surreal world of neuropathic pain. After several weeks of an intense sunburn pain I now have a really sensitive ear lobe which if touched causes excruciating pain that is unpleasant it's made me vomit! I'm taking ibuprofen & paracetamol which do relieve it somewhat (I know this from the times I forget to take any) but not nearly enough. My GP has suggested amiltryptaline - does  anyone have experience of this drug? 

it's a blessing to be cancer free but I feel very bashed about - I guess it's early days still. 

exactly the same with the neck-strangled feeling and the mucus.  it's so vile isn't it.  when it fills the mouth.  remedy?  maybe.  i had forgotten all about the various mouthwashes i'd brought home from hospital.  they do help, especially benzydamine, which seems to fix just about everything.  have mouthwashes on rising, before bed, after eating (ahem), whenever you need.  food exacerbates mucus production, i noticed, so i'm with you there.  mucus is either getting worse as in more of it or i'm now totally fed up with it.  anyway your GP would readily supply you with a script for various types of mouthwashes.  

Thanks for replying. Difflam was good when my mouth was still sore but now the numbing is unpleasant like the dentist. I do salt and bicarbonate mouthwashes and I have a nebuliser. It all comes down to time I think - giving it time and just living with it in the meantime! 

Sorry Wryneck I'd missed your post...  Two neck dissections, tonsils gone and various attempts at my tongue.  No radio or chemo.  So not too dissimilar to you.

Surgery does have similar effects to radio.  However in the case of surgery what's done is done, but radio gives a chance to heal and restore service - at least that is what my surgeon told me when discussing the differing side effects.  Having said that surgeons do their best to avoid/minimise damage.

I have a dry and sticky mouth/throat.  I don't have a physical problem in swallow (aside from the dryness). They have tried various tablets and even herbal tea, but it is what it is.  Some days are better than others.  Fortunately mine is not as bad as yours and copious amounts of water to drink does help.  I do think it has got slightly better over the 2 years since my last dissection which did remove some saliva glands.

I was fortunate not to get lymphedema.

The dissections do leave some interesting nerve artefacts!  After around 18 months I realised that the movement restricted by my accessory nerve damage had returned.  Physio and time did that. I found that my front right chest wall suffered the "sunburn" pain.  That has subsided and it is now an irritant but I still don't like to touch it.  Most clothing is OK to wear now.  If I scratch mu neck it feels like I am scratching the top of my ear!!

All I can offer is the hope that over the course of time your symptoms become normalised and you can live with them.  Mine was very gradual, but is now acceptable to me.

Wryneck said:

The second surgery to get a clear margin at the back of the tumour led to a problem with mucous. I was surprised because everything I've read here suggests it's a possible outcome of radiotherapy

I had neck dissection and mouth surgery and it has affected the saliva production in my mouth so it is thicker and less plentiful, which can be unpleasant. These effects from surgery aren’t nearly as great as what I read about resulting from radiotherapy, but surgery alone does appear to slightly affect saliva in my experience.

Wryneck said:

I've got an appointment next week at last to treat the lynphadema in my neck around the neck dissection scar which has got steadily worse since surgery in mid December despite regular Physiotherapy and doing the exercises

I had lymphoedema after my neck dissection. It very gradually subsided, but still affects one cheek making it a bit puffy at times.

Like you, I’m grateful the cancer is gone, but a stiff and painful neck is a constant reminder.

Thanks for replying. How long did it take for your lynphadema to settle down? I was supposed to go and see a specialist for lymphadema today but it was cancelled this morning. I was gutted./ I realise how much of meant to try and resolve some of the issues and it's taken a long time to get the appointment . I was told it won't be possible now for a long time. I cried and went back to bed for the day - I think I've started getting a bit down over the last week. Maybe just part of the recovery process but for sure the discomfort from my neck & the neuropathic pain in my ear, jaw, face, neck & shoulder sure doesn't help! I feel a bit worn down with it. A plan has been hatched for me to see an MLD - manual lymphatic drainage practitioner - also privately - it appears there is no NHS provision for head & neck lymphadema (nothing in Guys & St Thomas's Trust & local lymphadema services not allowed to treat head & neck!' 

Anyway feeling down in the dumps & thinking I might have to throw the towel in with my business as I can't get myself moving again & after two years closed by the pandemic without any government support I'm pretty much wiped out for savings & business reserve Unfortunately my cancer arrived in the autumn just as I was trying to relaunch & the treatment & not being able to talk on the phone etc has wiped me out for the sales season for 2022. It now all seems too overwhelming. 

My lymphoedema took around 5 months to settle post op, but I still have it in my face. Apparently not everyone gets the persistent swelling after a neck dissection but it has been a problem for me. My physiotherapist referred me to someone on the NHS for the lymphoedema but warned me it would be a long wait and I’ve heard nothing more about it (it’s nearly a year now since my surgery).

I find the pain in the neck (literally - it’s an apt saying) seems to fluctuate, and just when I think it has improved it becomes a problem again. It does nag away and become demoralising. I still wear a neck scarf all the time, both for cosmetic reasons and as a sort of comforter to keep my neck protected against either cold or sun.

I’ve had ENT appointments cancelled and remade for a later date more than once. Obviously they are under huge pressure, but it is frustrating as there is almost always something I want checked, so I sympathise with how upsetting a cancelled appointment can be.

I’m so sorry you feel down, but when everything piles up it is wearing, and add Covid related business problems into the mix post treatment and you have a lot to handle. I just hope this year brings improvements for you all round.

Cathyxx