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Joined: Jul 2020
Posts: 11
OP Offline

Joined: Jul 2020
Posts: 11
I am coming up on my 6 month mark after radiation on September 4th. My sense of smell is still very off. I can taste some foods but the taste does not last very long.

I’m still on a soft diet due to ten Bottom teeth missIng.

Hopefully they will be replaced at the end of the year.

The only thing that tastes the same and lasts seems to be Milk products. Love my milkshakes!

How long can it take for taste and smell to come back?

What’s a reasonable amount of time to assume this is it.

Joined: Jun 2019
Posts: 237
"OCF across the pond"
Gold Member (200+ posts)
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 237
Hi Andy,
Well done for getting through rads!
I finished mine on Halloween last year, so 9 months ago. My taste is pretty good, but I'm still finding things are taking their sweet time. The return of taste does depend on each person, so there is no set time frame in which it happens. I find there are some days I can't taste what I could before, and other days the taste is a lot stronger than the day before.

Your best bet is to give yourself a break and then try again. Milkshakes do rock! Are you using Ensure at all? I would pour some coffee (or cold brew coffee overnight in the fridge) and add it to vanilla Ensure to give me a different taste. I was also on Ensure Juice Plus and discovered that if I mixed different flavours together, I could create new flavours ( Vanilla Ensure Plus + Lime Ensure Juice Plus blended with a couple of ginger biscuits, some milk and some ice made Key lime pie. Chocolate Ensure + Orange Ensure Juice blended with Hershey's syrup, milk and ice gave me choc orange)

If you like cheese, you can make a quick cheese sauce by melting down soft cheese, milk, half a teaspoon of Dijon or wholegrain mustard, salt and pepper together. You can add grated cheese of your choice, but if you're struggling with flavour then I suggest going for a mature or extra mature/strong cheddar cheese or blue cheese to boost that flavour.

With gravy or meaty sauces, I discovered adding in some pate and a yeast extract into them works really well in boosting flavours. I've also started growing my own herbs. I currently have mint and chives growing in pots in my garden. Those finely chopped up and added to sauces, gravies, butters and vegetables are a game changer. Plus you have control over how much or how little you put.

I hope these help you.

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
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
Joined: Jun 2007
Posts: 10,506
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,506
Likes: 2
Hi Andy! Congrats on being 6 months post rads!!! The worst of everything is well behind you already.

Recovery can seem to last forever!!! No patient can ever get better as quickly as what their own mental timeline says which can be very frustrating. The recovery phase is full of ups and downs with some setbacks here and there. Rads sure was NOT an easy process and those setbacks are like a kick to the butt to let you know you still are a bit fragile and have more recovering to do.

Im sorry you still have a ways to go before you are considered completely recovered. OC is a difficult cancer to get thru!!! A total recovery for OC takes 2 years, sometimes even a month or so past the 2 years post rads. Thats why intake of at least 2500 calories and 48-64 oz of water needs to be continued for at least another 6 months, preferably til you hit your 2 year post rads mark. Ask your doc about adding high protein whey powder to your milkshakes or diet to boost your protein intake which will help with healing. By the time most patients hit the 1 years or so mark they're doing great, almost back to their normal self. The dry mouth/lack of saliva and ability to taste will be the 2 things that take the longest to recover. Many patients struggle with their sense of taste. Foods lose flavor after taking only a bite or 2 but it will improve in time. After patients are 2 years post rads, they're almost completely recovered. Some patients will notice small improvements up thru around 22/24 months post rads with their sense of taste and dry mouth issues. Sense of smell fluctuates on and off thru around the same timetable (up to about 2 years post rads).

Just remember... "everybodys different!!!". Diz was one of the rare 10%-ers of super lucky speedy patients who bounce back very quickly. She also was excellent adhering to her daily intake calories and hydration minimums. Patients who can do that will almost always fare significantly better than the patients who get into the playing catch up game. If you can meet your daily minimums of 2500 calories and 48-64 oz of water every single day (NO skipping either!!!) you should notice recovery will become quicker and easier. If you lose weight on those daily minimums then you need to bump your intake up to 3000 or 3500 daily calories. You shouldnt have any concerns about gaining weight even with taking in higher than normal calories. During my recovery many days in a row I would take in 6-7000 calories by drinking a few of my favorite chocolate peanut butter shakes and never gained an ounce but it did stop my weight loss. With being so busy rebuilding itself, your body is burning up calories at a much higher than normal rate.

Hang in there!!! The worst is behind you. Best wishes with continued improvements with taste and dry mouth!!!

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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