Mets to mouth/salivary glands

[ferntreegully]

Hello all, just wondering if anyone has experience of mouth or salivary gland mets, diagnosis and prognosis?

[dflem94268]

I was on Tarceva for about 17 months then had mets to my lower left jaw bone Sept 2017. I had 5 radiation treatments then was put on Tagrisso.

[ferntreegully in reply to dflem94268]

Thanks for your kind reply. Would you be able to tell me how the radiation treatments went and the side effects if any? and how you are now? Grateful thanks.

[dflem94268 in reply to ferntreegully]

I just started Tagrisso on 12/7/2017 and had the treatments 12/11/2017-12/15/2017 I ended up with a mouth full of mouth sores. It looked like the inside of my mouth was sunburned the one nurse said. The radiologist said that should not have happened with only low dose radiation and only 5 treatments but the fact I had just started Tagrisso that's why it happened. I was told my saliva glands may be effected and I may get dry mouth cause of it. It may or may not be temporary. I did experience fatigue for about three weeks after. Today I only have some mouth dryness when I'm sleeping and my jaw bone is a little bigger but not noticeable now as it was before the radiation.

[ferntreegully in reply to dflem94268]

Thank you. That may have been a little upsetting for you to recall. You appear to have overcome the symptoms well. I am grateful for your reply.

[dflem94268 in reply to ferntreegully]

The worse of the mouth sores for me was Christmas Day so yes it was not a joyful time that's for sure. Yet I got through it, since it was over holiday I didn't miss a whole lot of work just between Christmas and New Years. The side effects didn't start till 10/22/17 with the first mouth sore appearing. The fatigue started around that time too. I went back to work on 1/2/18 with some mouth sores and they were all finally gone by say middle of January. I lost 18 lbs, my son and his gf were making me smoothies, soft eggs and Ensure to drink. Since no one knew I was going to have those side effects not even the Radiation doctor I was not prepared. If you are getting any kind of radiation to that area make sure you have Ensure drink or something like it and yogurt etc soft to eat. Also there's a mouthwash called Magic Mouthwash that was a life saver. I would gargle with that before brushing my teeth and before eating. It was a heaven sent because it has lidocaine in it and numbing effects for a bit. I also used Ulcer Ease or just plain salt/baking soda helped too. All the best to you!

[dflem94268 in reply to dflem94268]

Magic Mouthwash is prescription only

[ferntreegully in reply to dflem94268]

Thank you so much for your helpful information and for your good wishes and I hope that you won't mind if I come back to you at some point? All the best to you too!

[dflem94268 in reply to ferntreegully]

Don't mind at all, unfortunately we are in this terrible disease together Thank you for your well wishes as well!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi,

When brushing teeth use a soft children's toothbrush. Also, if you have mouth ulcers use a detergent free toothpaste as normal toothpaste contains sodium laurel sulphate which is a detergent and can aggravate the ulcer. For a dry mouth your GP can prescribe a saliva substitute or gel. Biotene Oralbalance can be prescribed by your GP bnf.nice.org.uk/clinical-me...

Regards,

All the team at the RoyCastle |Helpline