Meet others living with Head & Neck Cancer: Introduce yourself

@roblem thank you very much for this information. I read all the articles with interest. It turns out one of the authors is actually on staff at one of the locations that I’m about to have treatment at. I can talk to his colleagues about the article and try to get a sense for if any of it is applicable to me. My concern is primarily hearing, but all the other side effects are certainly daunting. I really appreciate you spending the time to send a note to me and I’ll update the group as I move forward in my quest to be well. Again, I really appreciate this.

Yes thanks roblem for helping get the word out on the de-escalation movement.
I was told by one of my my oncologist that 5 years from now they will probably be doing things different at that facility in regards to head and neck cancer treatments.
5 years ?
That's a whole lot of unnecessarily maimed patients giving the current knowledge that reduced treatments are working.
When I asked about reduced treatments citing decades of former and current trials it was downplayed as not proven , boring studies . Standard of care protocol is all we can offer, but, YOU can stop the treatments.
The lesson I took away from all of this is you really need to watch out for yourself so as to not be duped into unnecessary treatments . NavDx blood test is available now , use it
This pressure to get 7 chemo days and 35 radiation treatments caused a fair amount of anxiety beyond having the cancer knowing what I already knew about the deescalation movement.

@hrhwilliam thank you . Given the fact that that recovery from radiation to the throat, can take one to two years are there any medications that can help a person to at least feel better each day . Doctors seem to “hold their cards close to their chest”when it comes to helping with these nasty side effects . Tylenol is always mentioned but does little help if any . I admit after a year of side effects the discomfort is getting to me . Any ideas ?

@ernierogersquamus123 I agree that there has to be a better road to recovery. OTC meds help but they can damage the kidneys when taken long term. I know from experience with a relative that this does happen.
You can address one thing at a time. Raw throat for example can often be relieved by a warm salt water gargle twice a day. Some add baking soda to that mix. Taste is not pleasant but it does help most people.
Neck pain can be exercised out in many cases. I stretched my jaw for mouth opening daily for two months to get that back to normal.
Doctors simply don’t have experience with side effects of radiation. Your symptoms are often baffling to a doctor. You might need to pry a little, encourage your PC to experiment a little. Pills usually won’t do much for repair or recovery other than to temporarily relieve pain or infection. Time and exercise seem to be the best medicine.

@cgoins1031, I think you were right to seek the advice of a neurologist. The syncope, vision and tremor symptoms may not be related to cancer and its treatments.

Can you help me understand the timeline? You said the neurological-type symptoms started about 5 years ago. When did you have treatment for cancer?

@cgoins1031 with the syncope and blurry vision may indicate your blood pressure is low. Baroreflex failure is a common problem among people who were treated with radiation and/or surgery. Many doctors are unfamiliar with this. Mine showed up 12 years later, and after 8 years, I've finally got some control on its effects, though there is no cure. It requires constant monitoring. I've discussed this elsewhere, along with the protocols I've tried. You can learn more about it by using Google Scholar. Hopefully, there is an answer out there for you.

@hrhwilliam
Afternoon , along with all the common side effects that come w radiation to the throat and neck, phlegm , dry mouth , sore throat , no taste / bad taste , not being able to eat , One year after the completion of 35 treatments I feel sick to my stomach every day for the past year . Does anyone else have the same symptom and if so any remedies? I can’t even stomach the thought of food .

@ernierogersquamus123 That all sounds excessive being a year out. Maybe you should ask for a blood workup, particularly the thyroid levels. Not being able to eat was never an issue for me after a few weeks out. I couldn't eat everything but I ate what I could having lost over forty pounds. My thyroid on the other hand went crazy a few months out and that really messed up everything health wise. I'm not a doctor, just a patient. Courage and keep seeking help.

Morning . Good advice . I did have a thyroid test and it came back negative/normal .
I’m beginning to think that something went wrong with the radiation treatments . (Just a guess).

Hello @simplygrand and welcome to H&N Connect. To address your hearing situation, My SCC was in my ear canal so initial surgery removed the ear canal and left me with unilateral hearing. My hero medical oncologist at Mayo addressed this saying cisplatin and carboplatin were both off the table due to limited hearing. She recommended a targeted therapy along with radiation which was Cetuximab (Erbitux). Now my cancer is considered skin origin, not mucous membrane like oral cancers, so there may be different options for these different types. In any case, 14 years later and there has been no recurrence at the initial site, I was fitted with a bone anchored hearing aid at Mayo and now hear from both sides again, but also have metastatic disease which has been controlled with both surgery and immunotherapy. My husband was also treated at Mayo for bladder cancer and due to his hearing loss he was given carboplatin instead of cisplatin. That was 5 years ago and his hearing was not damaged much by that treatment. Another family member just completed that same cisplatin/radiation regimen and has had no hearing loss up to this point but he is only 44 and 4 months out from treatment. Definitely have this discussion with your medical team so you can have the least risk possible to your hearing without sacrificing efficacy against the cancer.