recovery after 35 radiation treatments

@dragonfire There is a mouthwash Biotene, supposed to help with dry mouth, there are mints also supposed to help produce saliva. Maybe prune juice for constipation? Natural remedies are probably safer. Stay strong.

@dragonfire yes it can very depressing but I am here to tell you it will get better!

@dragonfire
I just finished my 35 radiation treatments 6 weeks ago for stage 3 base of tongue cancer involving lymph nodes on both sides. I was in the same place that you are when I was done treatment, although I had a PEG tube and couldn’t eat anything.

It gets better, I am finally starting to get my appetite back and some things are tasting “normal” again. I would suggest using all of the Biotene products (mouth spray, toothpaste and mouthwash) to help with your dry mouth. The throat pain will get better, but you may need to manage it with analgesics. I am still on oral morphine that I use occasionally when the pain is irritating me. For constipation, try to get as much fluid as you can, exercise even in small amounts, and if necessary use a product like Restoralax every other day to maintain bowel movements.

I love all of the encouragement that this forum has given me. I am much more positive in the past few weeks, and I can feel myself getting better. Hang in there, the next few weeks will be really tough, but hopefully you will soon start to feel better.

@scottmcf1431

I appreciate your help I have been forced to understand this is baby steps and that is not part of my makeup which makes this harder. I use the Biotene a few times during the day and before bed. I have a couple mouth ulcers the doctor said would heal on their own. They have me on Oxycodone during the day for pain which is the contributor to the constipation. I am hoping by the end of the week I can finish taking all the pills I am not a pill person.

I am glad I found the forum since it has given me people to talk to going through the same hell. My family is tired of hearing my daily complaints about this. I am glad I can still work part of the day. I get too tired to commit to a complete day yet.

@sepdvm

appreciate your help I have been forced to understand this is baby steps and that is not part of my makeup which makes this harder. I use the Biotene a few times during the day and before bed. I have a couple mouth ulcers the doctor said would heal on their own. They have me on Oxycodone during the day for pain which is the contributor to the constipation. I am hoping by the end of the week I can finish taking all the pills I am not a pill person.

I am glad I found the forum since it has given me people to talk to going through the same hell. My family is tired of hearing my daily complaints about this. I am glad I can still work part of the day. I get too tired to commit to a complete day yet.

I am amazed by this forum how many people have experienced this same nightmare I had no idea. I am hoping the my commitment to better nutrition will help. I am started adding protein powder and milk shakes to my daily food intake.

I wish we had better ways of treating these cancers. With some including SSC it looks like we are on the cusp of new treatments which do not involve radiotherapy. But this all takes time. You had likely the best and the latest we know works.
I also wish our medical teams had a better or more realistic idea of what we as patients go through. However, perhaps if we knew in advance we might go screaming off into the woods, never to return to this battle we must face.
You are now in the recovery stage. Great for you. Although slow, it does get better. A year from now you will likely be so much better you will have a day you won’t think about it. Two years and you will be very much mended. You likely will never be exactly as you were pre-cancer. You will have what I call a “new normal”. And life goes on. It will be good. Courage.

I agree with William 100%. In two years you will be almost back to normal. I would say my peak pain or misery was about 2-3 weeks AFTER radiation stopped and then the slow climb back. Eating fairly well soft foods in 3 months. You need to be positive and glad you are alive and healing considering the alternative. God speed.

@dragonfire you had to make a decision on treatment and I believe you made the correct one. When surgical margins are not clear or lymphatic or vascular invasion is seen in histopath then this treatment would have been recommended on top of the surgery, as in my case. We also have learned the hard way that we don't know what questions to ask of our doctors regarding aftermath effects. It seems that not all of them give a complete list of adverse effects. I always suggest new patients question in detail all possible side effects and complications of treatments. But if we know how bad it can get, will we still choose what is likely the best treatment regimen being suggested for a cure?
I also use a humidifier beside the bed even now. I use Zylimelt tablets nightly to increase saliva production. Biotene rinse and gel are also helpful but I did not know about these when I had the mouth ulcers so I don't know if they would be uncomfortable with the ulceration. I have also found that a weak electrolyte drink is more hydrating than plain water and dehydration adds to our dry mouth at night.
When I finished my radiation and chemo and had a recheck at Mayo I was offered counseling for the depression that is frequently experienced at this stage of treatment. Perhaps your medical team can refer you to a therapist who specializes in cancer patients? There is an oral rinse called Magic Mouthwash that is mixed up by prescription that helps with pain and healing. so you can ask about that. It really takes a while to get past the fatigue though staying active can help. Just listen to your body and rest as needed. Do you have an animal shelter or humane society near you where you could volunteer to walk dogs a couple times a week? My new rescue dog who joined the family a month before my diagnosis was a huge help in keeping me active during healing. There was a lot of training to do and time spent outside with him was my best distraction. Be strong. Have hope. None of us chose this path but we can choose which one to take from here on. (Hope the Juven helps.)

It's a matter of perspective. I underwent treatment 19 years ago for cancer on the base of the tongue. They didn't prepare me for what was coming. Afterward, a nurse told me that none of that mattered. All I had to decide at the time was whether I wanted to live or die. Dying from throat cancer is not a pleasant way to go. Fast forward 19 years and I've adjusted to most of what has transpired. There are somethings, like baroreflex failure, that they weren't even aware of at the time. I'm learning to live with that.

As for perspective, my sister is going through her second treatment for throat cancer, and the standard treatment is no longer an option. I'm sure in 100 years, they will think medicine of today was barbaric, but it is all we have. Hang in there. Much will return to normal, and the rest you learn to deal with.

@dragonfire I'm a tongue cancer survivor. I used Xylimelts mints available at Wal-Mart and Amazon. They stick to your upper gum and trigger saliva. They'll stay on while you sleep and keep your mouth moist. Some folks wear them during waking hours, too.
Ask your oncologist for the pain relieving mouthwash or magic mouthwash they called it. No reason to be in pain!