Head & neck radiation side effects continue, especially swelling

Thank you for reminding me to let me myself trust more in God.
Right now I am going through a real depression period. I can't hear out of my left ear so sounds are distorted which affects how I communicate and even though I have 3 different meds for depression from before I stopped taking them all during treatment. I don't see how starting them up again could help me now. One was to help me sleep, well I sleep ok. One was for anxiety Wellbutrin, I don't feel as anxious now as I used to it's almost like "oh come-on what else can you throw at me now". The other was prescribed for pain control "osteoarthritis , fibromyalgia". Well I am taking a small amount of pain meds so don't want to add to that either.
Thing is I don't have anyone to talk to about these kinds of things except for you good folks. My spouse is just waiting for me to "get well" and doesn't want to hear about anything cancer related at all.
One bright spot coming up for me is the docs will be removing the trache tube from my neck next week. I am so thankful for that. I understood the need but really dislike the thing. Next up once I can get myself to eat again, no appetite at all and still have lockjaw, will be the feeding tube. Small things granted but good things to look forward to.

But back to God, he's never far from my thoughts I try and stay thankful for the smallest of things sometimes it's more difficult but I see him in all Creation.
Thanks for listening

Hi there, I am five years out. Thank goodness no surgery but had 35 rounds of radiation and several rounds of aggressive chemotherapy. I still experience side effects and happy to say no swelling. But I have neuropathy, numb cold toes, lack of taste, and hearing /vision was affected, and teeth problems.
But things could be worse. It never goes away. Thankful for those good days.I wish you all success, patience and well wishes
You will see improvements. Takes time. Remember we went to hell and back. Take good care.

Hi, I had HPV P16 Positive Head and Neck cancer diagnosed on 10 Jan 2017 based on the radiologist
results after I had 31 lymph nodes removed. Two where positive and fortunately for me the cancer
remained in those nodes and didn't spread. That being said, I began my 30 day regiment of radiation
treatment on 27 Jan 2017 with the last 2 doses were given on the same day, 6hrs apart, 26 March, 2017.
Bottom line, everyday was an experience that I had been told COULD HAPPEN but my doctors would NEVER say this is WHAT WILL HAPPEN. I apologize for the bold bluntness of my wording BUT the medical experts
can only comment on what potentially could happen to organs/blood etc. I believe when it comes to how high the dosage of radiation that was applied and how it will affect each individual, they have no idea. I believe,
as a trained psychologist, the doctors always give positive feedback so that you don't give up.
From my research, it seems like EVERY TYPE of cancer has its own individual issues based on each person.
I never feel like I am "Cancer Free" nor a 100% "Cancer Survivor" after 5 plus yrs because the medical folks
are using scientific data and not my genetic data etc. All research is based on subjective input from patients
and KNOWN survivability rates. If we could talk to each individual used in collecting the data, we would be better informed of each specific experience they had but that is impossible. I truly hope and pray you find, with time, life will get better. I still deal with throat, voice issues, numbness/no feeling in my right cheek, loss 7 teeth on my lower right jaw and my taste buds have changed for everything I eat. On feeding tube for 5 months, it needed to be replaced twice because of infection. I wanted it out so they did it. Resulting in a loss of weight from 206 to 145 libs but have regained 12 libs since surgery. I hope I have helped you with your issues. For me , I turn to GOD both on the good and bad days. I know it will be a life long challenge but I am alive and that is all that matters. God Bless!

The recovery takes longer than you may think. Some issues never recover so we just learn to live with it. I had nerve issues for years, bugs crawling on my face and neck that were not there. Very annoying. Swallow, teeth, taste, issues. Constant runny nose issues. Neck, tongue, and jaw cramps. Lack of saliva. All fun stuff. But over time (months and years) these issues subsided. I think the last to go were the arm tingles about twelve years out.
But that's me. You are unique in your cancer and treatments so your recovery will be unique as well. Everything you said that is happening to you is actually rather normal. It will get better. I will say that again, it will get better. You will adjust. It is rare that you can expect to be just as you were before the cancer so when you accept that, life gets easier. Two years out you will say to yourself, "I will never go through that again!" But five years out you will have a different point of view most likely.
Ewe! The blisters on the tongue! Yuck. I hated that too. They eventually stop cropping up. And the taste takes perhaps a year or more to get back on track. You might discover foods you never liked before whilst other favorites are no longer that appealing. That might be an age thing as well, not sure.
Good luck and we are here for you.

Hi hnc67,
When the doctors give you a time frame on recovery, you should ask them how long it took them. The fact is in my experience as well as others whom I have talked with, your recovery will be a battle, but a battle you can (and must) win.
Two weeks after radiation has stopped is usually the lowest point you will be. The effects of radiation continue to compound after it ends. Just like a roast from the oven, it continues to cook for a while after it is removed. Usually after the two week point your recovery will be gradual, two steps forward and one step back. After two months you will wonder "When is this ever going to end?" Two years out and you will say " Wow, Ok, I'm not perfect but this is a lot better." A few years later you will be comfortable with your new normal.
Oh smack! What does that mean? For each of us it is different. For me, I can't eat rice without sauce or milk, white meat chicken without gravy, bread without butter, or swallow any pill larger than 1000mg among other eating issues. But that's all OK because I have adjusted my eating and was back to my normal weight within two years.
What I am saying is the recovery is slow and difficult. When you get your taste back it will probably make you cry as most of us have cried. When you get a day when your mind wasn't on your cancer you will cry. When you see a stranger in the grocery market with all the signs of cancer treatment you might walk up and hug her/him without words and cry again. And twenty years out when life has given you roses you never expected, when you can talk with someone from our world, when you can once again enjoy life and have an appreciation for the life you fought for, you will probably cry again.
We cannot help you with your suffering and recovery. We cannot hold your head or hand though we wish we could. But we can reassure you that there is life after cancer and it is a good life. And before I go, when you get your taste back and feel like eating again, buy or make your favorite pie (Cherry) and just get a fork and enjoy. No one gets to tell you "No."

Hi I am in my second week post 7 WK treatments. No one was very good at explaining that this was going to be so very difficult. My Radiation doc says 2 wks out I should be on the mend. Chemo doc just told me today it could be 3 months. I don't know what to believe. It's the thick phlegm that's plugging up my trach tube and fatigue. I had surgery first and think Ive lost hearing in my left ear from that. I'm a 67 otherwise healthy woman who has gone from 186lbs to 131lbs in a little over a year. I have severe trismus so bad I can't open my mouth. No appetite feeding through a tube, don't know anyone or where to find out what I can really expect now. Can you help me please

That makes a lot of sense. It's never been explained to me that way, but a month for each week is absolutely more realistic sounding than 6 to 8 weeks altogether. The immediate effects did start to clear up after a few weeks initially so maybe that is what he meant but that's not how he presented it. My original release for work said I'd be out for 6 to 8 weeks after treatment ended. But here we are almost 12 weeks out and I'm actually starting to have a recurrence of radiation side effects and I'm nowhere near physically ready to return to work. I have blisters on my tongue again, I'm constantly fatigued, my taste is all wacky again...I just don't understand why these things that had gone away are coming back as if I'm actively being treated and have brought all this swelling with them. The only radiation side effect that hasn't started happening again is hair loss. But it also hasn't started to grow back in some areas.

I was told a month for every week of treatment (in terms of going back to work) so for many that would be 6 months. However, the radiation is meant to go on working for a couple of weeks after the end of treatment so the 6 week measure could mean an end to the immediate effects? Solidarity again!

Solidarity alone is helpful. I also find it helpful to know that you were told it can take 6 to 7 months to recover from radiation. My oncologist likes to tell me it takes 6 to 8 weeks, but we're far beyond that now and I am still having issues. One of my surgeons told me that it definitely takes at the very least 6 months. Having those two varying opinions confused me, but I was more inclined to believe what my surgeon said. I'm especially more inclined to believe what he said now that you tell me you were given a similar timeline. It's so frustrating to be told vastly different things about the same topic by different medical professionals. I don't know if you've had that issue as well. Hopefully not.

Thank you!