It seems where I’m at is very rare - at the bottom is a timeline of my disease and treatment but I was just looking for any advice from anyone to maybe just improve my quality of life at the moment. To try and keep it simple, I had hpv tonsil cancer, had the usual chemo radiation, followed by a neck dissection and then parotid removal. Given the all clear but then a few months later it was back further down my throat In my larynx/epiglottis area. I don’t think they can pinpoint it exactly behind the swelling.
currently, I have no epiglottis. This ‘slothed off’ with some of the tumour after having been on 4 sessions of nivolumab. Initially they stopped this treatment telling me what they were seeing was true progression (at the time my throat was swelling and epiglottis closing my airway) amd put me on high dosage steroids over Xmas. As this happened my swallow deteriorated from what wasn’t a great one anyway until I was on liquids only. Liquid also started to get stuck around the back of my throat, I could drink as much as I wanted but the same amount would always remain, which I’d have to cough to clear every time. then I got a chest infection and my swallow was getting harder to clear. They suggested I was aspirating fluids and had possibly got aspiration pneumonia so wanted me nil by mouth, to feed, rest my chest and stop the infection.
yesterday I started nivolumab again after having to have my ng tube put back in (it burst at 5am this morning doing a flush) and tiday my throat feels so much tighter, drier and breathing is difficult. I can hardly get any secretions up because I’m so dry from no fluids and unless i either lay on my side or sit upright with my head resting forward, saliva collects around the back of my throat that I can neither swallow, or cough up properly. It’s very uncomfortable and I’m so thirsty all the time. I hope this makes sense and I’ll answer anything I’ve missed or that doesn’t make sense. Sorry it’s so long ! But any suggestions even for me to be able to just sit up so I can watch tv would help! Here’s the time line-
Timeline
Best remembered
Hi Stonecold, the only thing I can suggest is a using a nebuliser as it will help keep the mouth etc moist, I can only swallow thin liquids and had 2 long sessions where I was nil by mouth, once when I had a trachey fitted and then when I had a full laryngectomy. I now use my PEG feeding tube for food supplements. Maybe they suggested the tracheostomy so it made life easier as you would be breathing through your neck rather than the mouth and nose , this is how I cough up mucus nowadays and it comes out of my stoma in my neck, its not the end if they did have to do a laryngectomy but that would only be done as a last resort. I remembered you from when you had your first procedure and you certainly have had to put up with a lot of since then. Let's hope they manage to sort a better way of life for you, I just wish I could offer more sound advice. All the very best mate.
Chris.
Its sometimes not easy but its worth it !
