Salivary Gland Issue?

Salivary gland issues are common after RT, our mouths are a bit of a mess, ask your RT team for advice on the issue, I'm pretty sure they will have had a lot of asks concerning the issue.

I'm 12 weeks post RT treatment and have been experiencing a similar problem for about 14 weeks. Every time I attempt to eat, the roof and sides of my mouth break out in small painful blisters that eventually dissipate after I stop eating.  These were eventually diagnosed as superficial mucoceles caused by damage to the minor salivary glands.  My head and neck cancer team believe this is an unusual side effect of radiotherapy treatment which should right itself with time.  Meanwhile I've tried using an oral steroid mouth wash, which didn't help, and have now been prescribed pilocarpine to see if stimulating saliva production makes a difference. 

Not sure if this helps at all, I've been meaning to write a post about this in case it's useful for others, so I'll try and get round to doing that sooner rather than later. 

Thanks Bella, my Radiation Oncologist feels it’s a gland issue as well and should go away in time. I tried pink lady and it didn’t help. Thankfully it doesn’t last long. 

Hi I had water blisters about three weeks after finishing RT. They seemed to appear near times I was about to eat and burst a while after. They were so painful and at times caused me to not being able to eat. It's as if they knew my feeding times. I used the usual pain relief that was suggested with ulcers during RT. I took them July last year and they disappeared end of November thankfully. The oncologist and consultant said it was a rare side effect that only two other patients had taken . Haven't had them since and the salivary gland was also mentioned. Xx

That's good to know that this does disappear eventually, it's really debilitating. None of my cancer team (ENT surgeon, oncologist, head & neck nurses) had ever seen this side effect before, so it's definitely pretty rare. It was an oral medicine consultant who eventually diagnosed the condition in my case. 

Hi all - I am 8-weeks post-RT, and also have the salivary bubble/blister issue (I believe they are superficial mucoceles). The treated back corner of my mouth and soft palate are set off into a fury without much provocation - 8-9/10 pain that leaves my nose running and eyes watering - think hot nail being pounded through the mouth. Eruption of clear painful blisters. It all subsides over a few hours. Things that have set it off include a green smoothie with coconut water and spinach, Boost VHC drink; Orgain protein drink...to name a few.  Even talking for a long time sets them off, although not to quite that level of pain.

 Db1960 Bella_LMC , I am curious as to how you are getting along with this issue and whether the problem resolved?  Hoping to get an understanding of how far away the light at the end of the tunnel is.

@ranchroad, mine cleared up a couple of months ago. Like many “weird” side effects, they have started to fade away or become an accepted part of the overall experience. I too had my oncologist tell me that they hadn’t seen some of the side effects I was sharing with them. Thankfully the majority subsided. I know that at 8 weeks I was experiencing unending issues and thankfully there were some great people in this forum to remind me that I was still pretty early. I’m now 4 months post and can look back on some of the side effects with joy that they are gone or greatly subsided. In the meantime I still deal with loss of taste, sore tongue, dry mouth, swallowing issues, neck inflammation and occasionally nerve issues. My weight has now stabilized. I’m eating a little more than I was, so all good things. It’s all about time and patience

 Db1960 thank you for sharing that!  Sounds like they went away about 2 months post RT for you then?

Although I hate to hear you had unending issues at 8 weeks post-RT, I feel like I’m bobbing around in that same boat at this moment in time.  And happy to hear that many of your side effects have ceased or are now less intense.

Oh, and I was treated in the US with proton radiation for stage 1 tonsil cancer, which had spread to one node.  33fx, 70gy