Meet others living with Head & Neck Cancer: Introduce yourself

Hi @svac1 and welcome to this group. I'm actually surprised you didn't lose your voice. The effects of the radiation will take many months to heal (stop changing your internal structures) and even when that is all set to a new normal I think you will find your voice won't be the same. I myself was no longer able to project my voice while trying to conduct training seminars or functions which required a stage voice. It took a bit of adjustment to accept that.
Keep your port for a while if you can and avoid being around any sick folks this winter while you build your systems back up. This is going to take a while, with some issues literally years.
I wish you the best and speed in recovery. If you have questions or need to be pealed off the wall please don't hesitate to reach out.

Oh Yes. Your taste is going to change for quite some time. You will have to try anything and everything that you can tolerate. Your taste will probably go away completely soon or like many of us, just be left with a metal taste for a while.
I hope a feeding tube or port has been offered. Feeding tube can be a bit annoying but is far less invasive that a port. With tongue radiation your days of eating might be limited. No worries however, taste does return ten to thirty days after radiation ends in most cases.
Milkshakes with protein powder mixed in might be something to try. Don't worry about a balanced diet at this point. Calories and protein are priority now. Not medical advice, just my opinion.
Sorry you are going through this during the holidays.

Yes tube has been offered thanks for the advice I will keep trying different items

William,
Thanks for your comments and advice. Today marks 2 weeks since my last radiation treatment and my swallowing is better and less painful and I can now eat certain things that I hadn't been able to for a while and I can actually taste and enjoy my coffee again. I do Ensures and Boost drinks and the gargle with baking soda & salt water and also a mouthwash that my radiologist gave me.
The mucous is driving me crazy, I have a humidifier in my living room and 1 in my bedroom but the mucous just keeps on coming. I don't know how to get rid of that. I am hoping to hear from my radiologist soon for a follow up appointment to see if he has any suggestions.
Once agin, thank you for yourcomments

Good morning to all,
Today is my one year Whippleversary as I have Pancreatic cancer. I am celebrating but yesterday my husband went to an ENT only to find out he most likely has tonsil cancer. They are doing a CT scan next week and then more decisions will be coming. I had my surgery done at Mayo in Rochester, Minnesota and that is where I think my husband should go as well, but we live at our house in Arizona in the winter so perhaps Mayo here. I would love to hear more about tonsil cancer, honestly, I did not even know he had tonsils anymore. I do know they plan to take his tonsils out but because he is on Cumiden and is considered a “bleeder”, they said it will be a tricky surgery as there is a lot of bleeding with this surgery in adults anyway. As you can imagine, I have tons of questions and I am not sure he has the right surgeon. Any comments or suggestions would be much appreciated. I am on the Mayo Whipple Warrior survivor site and I know how helpful that has been for my cancer and as my husband’s caretaker I need all the help I can get. Thank you all.

Hi William
I finished 2 weeks ago with the same scenario of chemo and radiation but just my left side of neck. My biggest side affect has been taste. Not the loss of but the incredibly bad taste that requires a huuge effort to ingest anything. I have lost 35 lbs which puts me back to normal but do not want to lose any more. Lemon in the water helps to drink. The blander the better. Orange juice and coffee seem to be somewhat tolerable. I have resorted to chugging Ensure and Boost to get my protein and calories. Tapioca and some puddings have been acceptable. Looking for the day when taste buds come back. Hope this helps

I also had SCC at the base of my tongue, and was treated with chemo and radiation, completing treatment in December 2020. In most cases, the lack of taste buds is temporary in nature. When I was being treated Mayo's dietician kept me focused on protein (120 grams per day) and calories ( 2500 per day).

I understand how hard it is but I am not sure recipes are the issue. I believe you just need to grind through these few weeks and wait for your taste to return. Keep focused on the protein and calories and most importantly, getting rid of the cancer. For me, my taste never returned and I have come to realize that while food has a huge social aspect, but eating, at it's basic level, it is really to sustain life. The good news is I can eat anything I can swallow!

Good luck in your treatment.

Hi @dgoinvestments Probably a good thing he has his tonsils as the cancer becomes contained there rather than spreading too much. I agree the Coumadin will cause issues but I would think the doctors will take him off of this for a few days prior to surgery. They look at what is vs what may be and decide that what is, is cancer that will result in death if not treated. However, if they can get a biopsy and find it is HPV16+ type and get themselves acquainted with chemo treatments, perhaps there may be a different route.
As for me, I would return to MN this winter and get this addressed. If he needs radiation then perhaps return to AZ for that. But that's just me as I look at things from an engineering logic perspective.
See what the doctors say and find out the route which works best. Tonsil cancer most likely is SSC or Squamous Cell Carcinoma and is today rather successful in treatment and full recovery. The side effects of the treatment can be a rough road for anyone primarily because of all that happens in life with the mouth and throat.
What with your health situation and now your husband's, this is not the sort of living anyone looks forward to. Prayers to both of you.
Is there a follow-up appointment soon? Can you keep me posted?

Hi @svac1, I add my welcome. You may wish to read and join this related discussion:
- How long after radiation did it take to get your voice back?
https://connect.mayoclinic.org/discussion/how-long-after-radiation-did-it-take-to-get-your-voice-back/
Has your cancer team suggested a referral to a speech language therapist?

Hi! Jon here. I was diagnosed with tongue cancer, lower right mid-July 2023. I had surgery on July 31st to remove the tumor. The surgeon also removed my right toncil. The surgery was quite successful and I was givin the option to simply go home, as the surgeon felt very confident that he got it all with good margins. Of course, then I got the "insurance" discussion and did opt for 2 weeks (2x/day) of low intensity radiation with one low dose Chemo/week.
My last treatment was on September 8th 2023. I could never have imagined how difficult the first 3 weeks of recovery would be. I was so sick and in so much pain that I just wanted the end, however that was to come. Week 4 started with a little bit of hope. Weeks 5 and 6 were getting better and i started to feel physically better. Then, was the worst emotional and mental crash/attack. Anxiety way off the charts with panic every single day for about a month. I found myself in another very dark version of hell again. Thankfully, Mayo came through and prescribed some medications that has taken a huge edge off. My very 1st 3-month check-up in 3 days!