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#200299 07-31-2020 08:38 PM
Joined: Aug 2019
Posts: 21
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Joined: Aug 2019
Posts: 21
Likes: 2
I am a year and 1/2 post radiation and I am still on a liquid diet. I mostly drink 530 calorie VHC Boost to maintain my weight. I found out just this past Wednesday that I no longer have both submandibular salivary glands (they produce approx. 70% of your saliva), both sublingual glands (they produce approx. 5%) and about half of my minor salivary glands (they also produce about 5%). All were removed during my bilateral neck dissection. So..........even if my two remaining glands, the parotids, were to heal at all from the radiation damage, I would still only have 20% saliva return. Needless to say, I was very devastated to hear that news. I was so hopeful that given time, my body might heal some of the radiation damage done to my glands and I might be able to eat some solid food again.

I hope anyone reading this that has had to have a neck dissection only had to have ONE submandibular gland removed, if any. They say if a person just has one removed they will not notice any lack of saliva. Xerostomia is a bitch, as I'm sure most of you know.

My relief products are pilocarpine and xylimelts. I can't chew gum or suck candy. If anyone has any ideas other than those I'd love to hear them.

I do want to say though, I am so thankful for what I have, which is a lot!! And I hope everyone is staying strong and think positive. It really does get better. Just make sure you know exactly what you still have in your body so you can have a realistic idea of what's going on and what to expect.




Thanks


Joined: Jun 2019
Posts: 237
"OCF across the pond"
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"OCF across the pond"
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Joined: Jun 2019
Posts: 237

I do have some saliva, but it's still compromised and my mouth still goes dry. I don't have a tongue, so manipulation of food is difficult. I find taking a tiny sip of water, then eat, then another sip of water, seems to help. Recently I've been having a cup of sauce/gravy/consomme to dip my food in, plus I can sip at it too.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients

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