Taste change.
Hello. I’m new here. About 1/2 way through chemo/radiation for Oropharyngeal Squamous Cell Carcinoma. AKA, tonsil cancer. Recently had the tastebud “change”. Everything taste super nasty right now. So far I’ve only lost 1 pound but this feels like a game changer. Two or three bites and I gotta stop. Super discussing. I’ve been trying everything. Nothing yet. Today I’m not trying anything. Going to have a 7 Boost plus diet today. It takes a half hour of swishing, gargling, brushing, to ease the nastiness out. Any ideas, tips or tricks will be appreciated. 🤮
Thanks in advance.
Papabukk
Comments
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Hello and welcome to the forum. I don't have any particular tricks to share on this subject. It can be tough and like you are doing you just have to force food or high-calorie drinks through so you get enough calories to hold your weight. When the treatment progresses farthur you probably get like many of us were where we had no taste. No taste is just as bad because without taste you don't feel like eating either. You don't mention a feeding tube so I assume you don't have any, but that would be an option if you can't eat.
Take Care God Bless-Russ
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I had twice daily radiation for my treatment plan and after the 8th treatment my taste began to change and by the 10th it was gone. Keep in mind that was over 4-5 days so your taste changes will likely be different (almost all are different truly). The loss of taste bothered me until the pain of swallowing food got too bad. Then I was almost thankful I had to just choke down boosts as any texture would have sent me through the roof pain wise.
When you are through treatment the taste comes back for most of us but to varying degrees. I am 14 months post treatment and I got about 75% of my taste back between 3-5 months and then I got to my new normal of about 95% taste back probably around the 9th month. I know some were much faster than me and some slower/never so keep that in mind.
I read on here that lemonade helped some spur on taste when you are done with treatment/recovery. I tried that but not sure it helped or not......... but I wanted to taste so badly that I tried and researched anything to help jumpstart my body.
Good luck. This forum helped me so much by the communication so if you feel down, remember you have friends here!
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Papa,
Yeah - taste loss is something that is almost impossible to describe. If you can't taste what you're chewing, you instinctively don't want to swallow it. It's really a challenge.
I personally got through without using my feeding tube, by chugging high protein/nutrition smoothies - that my girlfriend made for me. They worked great for me!
All I can tell you, is that most people (including me) get their sense of taste back ... it just takes time.
It's so tough going through this, and I feel for you! Keep trying new foods and continue to ingest food by mouth, if you can.
Hang tough ... you'll get through it!
MG
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papa,
I've been out of treatment for 3 years, now - and I have some distinct memories of taste loss.
A lady made me a Key Lime pie, and it tasted SO good, I had to get a second piece! (It was the last thing I can remember that tasted incredible, for probably 6 months or more....)
The next day, I got out of radiation treatment, and got a piece of chicken. I couldn't taste it - seemed just like chewing on a piece of meaty cardboard....
It was about 4 months out of treatment, before I was shocked to find I could drink a Canadian beer (I was working up in Manitoba then) - and eat some chicken wings!!
I've been ok, ever since. I "found" about 30 of the 45 pounds I lost during and after treatment. I don't eat as much as I used to ... but at least the taste is back!
So - like I say, you're in a very tough place with the taste loss .... and I feel for you, but it will come back in time!
mg
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I did ice cream milk shakes to keep the weight up until dairy started to taste awful. Dairy was the worst for me.
Seems like shrimp was ok. Especially when my throat got sore. It wasn't as grainy as chicken somehow.
I do remember going out for an Italian dinner. Got lasagna. I can't describe the taste. Something like metallic fireplace ash. Such a waste.
I'm nine years out. Getting a little vague on the experience, fortunately.
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As of today, 7-24-22, my last radiation treatment was 3 weeks ago. The lack of taste is a weirdly challenging side effect. I describe it as "no matter what I try to eat, it tastes like a salty, metallic paste in my mouth". And I've had zero appetite since my first chemo treatment and hardly any saliva. So at 9 weeks since my first week of radiation, I've lost about 20 pounds. I try to taste something each day but 95% of my calories come from Ensure and Boost VHC. This is the most challenging side effect I've had. Throat got mildly sore at the end was all...never had a need for a feeding tube. Swallowing never became an issue. Every time I asked about when I could expect taste bud and saliva recovery, I was always told "everyone's recovery is different",
Good Luck with your treatments and recovery...I feel your pain when it comes to eating.
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Mark hang in there it will come back at least to some extent. Folks on here have varying degrees of recovery of taste, anywhere from near zero all the way up the scale to 100%. Keep trying many different things in little bites and you will tell when things are getting better. I agree it is challenging having no flavor, it is like losing the incentive to eat. For a period of time, I just tried not to think about it too much while eating what I could and forcing the calories I needed through each day.
You have a great attitude and that goes a long way.
Take care, God Bless-Russ
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Hi Papa,
My husband is going through the same thing. He says everything taste like dirt and he has a nasty taste in his mouth. He says swishing multiple times a day helps. He probably does it atleast 6 times per day, plus brushing twice. On my end, I just keep exploring foods to see what taste less bad. We found he can taste sweet stuff the most, so I try to focus on that.
One day at a time!
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I wish I could offer some advice but basically I was just lucky and blessed to not have any swallowing problems and painfully sore throat. Cancer location and stage surely had an impact too.
They had me meet with a speech therapist several times and she had me do different swallowing exercises. She said this helps you from developing scar tissue on your swallowing muscles that impede your ability to swallow. I was really worried about the potential of losing my ability to swallow...almost gave me a claustrophobia type of dread....but it never turned into a problem. As for sore throat, everyone is different. They gave me some type of oral medication that had the word "magic" in the name. This did create some relief on the mouth sores and throat pain. You could actually swallow it so it coated your throat. They also gave me a medicine that you only could get at a compounding pharmacy. It had lidocaine for pain relief, a steroid and couple of other things. This, BY FAR, was the best thing for my oral and throat pain.
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Thanks Mark! The information you offered is great. We met with a speech therapist once so far. I will have him start doing the exercises daily and be sure we follow up with the therapist. I will also keep in mind the prescription meds for as time goes on.
Thanks again!!!!
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Hi Tawanda.
Definitely want to swish as much as he can. I’ve swished like a maniac from day one. I’ve also done swallowing and tongue exercises from day one. I’m at week 6 of 7 and have had very little pain until recently. Still mild by comparison it seems.
Thank goodness for the boost plus as I haven’t eaten in 3 weeks now and have lost less than 2 pounds. I drink 6 to 8 every day. No change in taste yet so I’m hoping and praying it becomes normal again one day. Very boring and hard not eating but it’s doable.
Hopes and prayers from California.
Papa
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Taste Change
I was told when my taste buds go to hell do not force yourself to eat your favorites because you may lose your taste for it after treatments and recovery is complete. I drank a lot of smoothies, milk toast, soft scrambled eggs and soup made in a blender that also heated while blending. Two weeks into radiation I could no longer drink coffee, I would almost get sick just smelling it brewing. I never regained my taste for coffee for about three months after I completed radiation. Basically you have to become a scientist and experiment to see what works for you but by all means keep trying. I had a feeding tube for a month or so after a full neck disection but the removed it before I started radiation. I did end up losing 92 pounds and they threatened to put another tube in if I kept losing weight but I lied and said I am fine.
Hope this helps
Jeff
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