Advice please

Unfortunately excess mucus seems to be part and parcel of the treatment ,I was given caphosol,soluble tablets to use a a mouthwash, they did help.

Is your partner pump fed during the night? This can impact on sleeping patterns.

Excess mucus and associated nausea lessened when my Chemoradiotherapy finished, it does cause quite a bit of distress, my GP prescribed short courses of Zopiclone sleeping tablets when it was safe to do so, helpful in restoring sleeping patterns.

Hello there, Just as Micky said, these are unfortunately common side effects. My husband was struggling with all these and it was just as painful having to watch him to go through this. I guess persevering us the only way forward. Some days is a two step forward, one step back kind of journey. As hard as it is, stay positive and persevere. Keep doing what you are doing, you will get there. I thought this won't get any easier,now 6+ months live is looking some kind of normal. All the best for you guys. Hugs fellow wife Mel x

Hi Micky,

He's not pump fed, he uses a syringe. He's been advised not to take any sleeping tablets, but I'll ask about caphosol. I've not heard of it before, so this is really helpful.

Thank you for your input.

Doris

DorisGrylls said:

My question is, has anyone got any suggestions on how to help clear it please?

Your poor chap....so sorry he is in such a state. 

I'll add to the other's suggestions. There is a drug called Carbocysteine that is sometimes used off label. It's used in COPD and other diseases to thin mucous making it more easy to clear it. I wasn't offered it as my stickiness wasn't too bad but other folk here found it helpful.

Hugs 

Hi there! My husband is 3 months post 6 weeks chemoradiotherapy for T2N1MO P16-positive SCC of the left oropharynx (tonsil & base of tongue). The worst side effect for him is the thick mucus. It started at week 3 & is just dissipating now 15 weeks later. The amount of thick mucus was unbelievable. He was literally drowning in it & sounded like he had an internal engine just constantly generating it. It was 24/7 & really affected his sleep. He constantly had a spitoon / spit bowl in his hand & not to be gross but we would fill bin bags with it along with tissues! After a month of suffering he was prescribed Carbocisteine (mucodyne syrup) which did help in thinning it somewhat but it continued for another 8 weeks or so. We counted 12 weeks in total of the mucus when it finally started to lessen. He also used a nebuliser. No swallowing for 6 weeks at the height if it all & everything through his PEG so he couldn't gargle salt water to help. I just kept telling him this is temporary. He is now hardly coughing anything up & is much more comfortable. Best to your partner. 

Good morning, I feel for you, this sounds all so familiar, my husband went through this just as bad as describe it. It was so hard to watch. I am afraid this will last for a few weeks. My husband had a 'spit bowl next to the bed,( I won't forget the look of that picture any time soon) and the amount of tissue paper. The constant caughing to go with that kept my husband up for most of the night, so he slept for most of the day, missing feeding times,ment he lost a lot of weight.. He needs to persevere,as hard as it is, keep doing what you are doing,listen to the medical team, most of all he needs to trust that ot will get better. It should be g getting better more and more from now on, my husband was around 12wks when the spit bowl was no longer needed. Hope this gives some comfort. Big hugs. Fellow wife Mel x

Hi there, yes my husband suffered really badly as well. He had a bucket beside his bed that he emptied twice daily as it was so horrid.

We found carbocisteine really helped and he took it 4 times a day for nearly 16 weeks, We got this on prescription.. I’m not sure if it’s available over the counter.

It does get better, honestly. Hang in there.

Fellow wife and carer xxx

Morning, it's comforting to hear that my husband wasn't the only one suffering this bad, at times I thought,will this ever get better. Now nearly 7months later, he is doing so much better,still got a dry mouth,but he's got something to help with that. Finding food he can eat without irritating his throat,it's challenging at the moment, but that is getting better. He's already gone back to work . So grateful he is still here with us, so proud he's come so far. Hope your husband is doing well and well done yourself ,I know it was challenging for myself, looking forward to our "new" future now. All the best, big hugs fellow wife Mel x

Everything that everyone has said is pretty normal I was having all the same symptoms but he will get over it speak with the Salt team.

Thanks Mel. Our eldest daughter Graduated this week & my husband made the ceremony - Yay! (he was hospitalised for a month during & post treatment he got so poorly & so I never thought he'd make Graduation).  Also no spit bowl in tow which was amazing as finally disappearing & what does come up now if we're out he just swallows. He even made the celebratory meal in a restaurant afterwards - ok he had to have the chef make an off menu bland dish of pasta,olive oil & parmesan for him but he ate out for the first time since Christmas!! All massive steps after swallowing nothing for 6 weeks & being PEG fed, medicated & fluids. He had his 3 month scans yesterday & we meet his Oncologist on 24th July to find out the results & if the treatment has worked. It's a tough journey for us Spouses too isn't it but I feel like we are coming through it now. Best to you & your husband & everyone on here. Sarah x