taste buds after radiation

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  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    Hello, pablo65, and welcome to the CSN H&N discussion forum.

    OK, I think I have this right your treatment finished in September of last year. Treatments were Radiation and chemo. You are approximately 10-11 months post-treatment.

    I would say most all of your issues are due to the radiation and possibly chemo depending on what type you had but that just requires looking up the side effects of the chemo you received. But generally, the big culprit here is the radiation.

    As I look at what you are going through here of not eating solid food, taste, saliva, no urge to eat, and no wonder if everything tastes lousy or no taste at all. My throat hurts after talking.

    Recovery from this treatment can take up to a year or more, but you are getting close to a year and I would think many of these things would have improved more for you by now. All these after-effects of treatment you are having will most likely not resolve 100% but you should see improvements in some of them. Such as taste, for example, you should have seen some improvement by now, or saliva, or swallowing, it is unusual to see all these with no improvement. But every case is different because of the cancer and the location, the extent, and the treatment.

    Have you contacted your care team about this? Have you been having regular checkups with your care team? Usually here in the USA the anchor of the care team is the ENT (Ear Nose & Throat doctor) During the first year you should be seeing an ENT or one of your care doctors at least every 3 or 6 months to monitor you for any problems and keep an eye on your progress. If this hasn't been done I recommend you get an appointment to get in and see the appropriate doctor for a complete evaluation of all your problems, and hopefully a solution to them or at least a way towards improvement of your situation. You should be actively pursuing answers to your problems. Please check with your care team to find out if any of your conditions is expected or expected permanently and find out from them where you should be at this point in time. They know the amount of radiation you got and where and they can evaluate your situation and go from there. I would just like to say that usually when we go through this treatment, and I had the chemo and 35 rads, none of us come away scot-free of after effects, it seems we are always left with something such as low saliva, reduced taste, etc. and itis usually in percentages such as I have about 30% saliva and 40 or 50 percent taste came back and some folks on here are very blessed with high percentages of everything coming back and they are very blessed to have this happen. But here again every cancer case, treatment, and outcome is different.

    As far as swallowing you may need dilations to open your esophagus a bit to help you swallow. But get with your care team and get a complete evaluation and see that they get you hooked up with a speech therapist, they are everything Head & Neck including saliva, taste, swallowing, breathing, etc…

    Swallowing and Speech Rehabilitation for Head and Neck Cancer

    You should probably have a swallowing test also to determine where your problems are that you can't swallow solid food and a swallow test shows your swallow in action as it happens…

    What happens during a swallow test?

    Also here is a video from Australia about the side effects of H&N treatment and it covers a lot and should be helpful to you…In fact it covers everything you mentioned you are dealing with…

    Nutrition, Swallowing and Managing Side Effects of Treatment for Head and Neck Cancer

    Head and neck cancer can make it hard to eat and drink. This may be because of the cancer itself or the side effects of treatment. This video talks about the most common side effects of head and neck cancer treatment that may impact on your ability to swallow and eat and drink normally. Your cancer care team may also call side effects barriers to eating and drinking. TOPICS COVERED-Top 5 side effects of head and neck cancer treatment- Why is swallowing important?- Difficulty swallowing - dysphagia- Swallowing tests- Tips on how to swallow safely when eating- Mouthcare routine- Pain on swallowing – odynophagia- Difficulty opening your mouth - trismus- Dry Mouth - xerostomia- Not feeling hungry- Nausea and vomiting- Nil by mouth for more information on nutrition for Head and Neck Cancer please visit: www.headandneckcancer.org.au

    Your speech therapist should set you up with swallowing exercises as per your particular case but here is a video on swallowing exercises to help you strengthen your swallow but this is not to override your speech therapist follow her directions…

    Swallowing Exercises | For Patients with Head and Neck Cancer Starting Radiation Treatment

    Swallowing Exercises and Postures (dysphagia treatment)

    And lastly, in my travels I have run across a support forum from Australia you may want to check it out, I think it is a forum similar to this…It is called Cancer Council Online Community. Here is the page I think you need to get started, click on forums upper left…

    Here is the original thread where I found it discussing head and neck treatment and effects of treatment…

    I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.

    Our motto here is NEGU (Never Ever Give Up)

    Wishing You The Best

    Take Care, God Bless

    Russ

  • tbret
    tbret Member Posts: 76 Member

    I am eight years out of treatments this Thanksgiving. Radiated 35 times, both sides, cisplatin… oh lordy. I really feel for people who are going through that now.

    I'm here just to give this perspective: I have 100% of 75% of my taste buds back. There are things I cannot taste and things I taste as well as I ever did. But imagine trying to remember exactly how to describe "green" after you haven't seen green in eight years. My take is that I don't really miss it as long as I've still got vivid blue and red.

    At first I hated spices. They were painful. Now, I like a blackened piece of fish, I do. All kinds of things hurt back then. Almost nothing hurts now.

    It's a new normal and I'll never earn my sommelier credentials but I'm very happy with what I have (except that eating salt and sugar piled on the pounds initially) (hated chocolate / love chocolate) It'll be what it will be and it's great that it can be whatever it is.

    Just one guy's opinion. Your bitterness may vary. Mine certainly did.