A quick update on my treatment. I'm now 2 weeks post radiotherapy and 13 weeks post surgery. I've also had 2 doses of cisplatin (and won't be having anymore). I'm still on ensure shakes that go through my RIG (G-tube in US), as does all liquids and medications, as my throat is still too sensitive to swallow anything. I can occasionally drink but most cause me to cough and splutter which then makes my throat sore. So a bit of a cycle I'm trying to break.
I have awful ringing in my ears. I'm still hopefull it'll die down. I have lost hearing and have been told it'll probably be a permanent loss.
I have mild mucositis. All the sticky mucus is at the back of my throat, so I'm gargling warm salty water to help clear it. I'm also filling my shower with hot water to generate steam to also help clear it out. I also get dry mouth at night. It's not too bad yet and I'm hoping it doesn't get any worse.
I'm sleeping on the sofa at night as it's the only place I can keep my head at the correct angle to get some sleep, but man! the tiredness is really kicking my butt. I'm nodding off as I type this up. My energy levels are low. I feel lazy as I spend so much time sitting/napping. Tomorrow my husband and I are off to a Christmas market for an hour or 2. It'll be nice to get out of the house and walk somewhere other than the grocery store. I also need to do a bit of walking around where I live, again just to get out of the house.
I miss eating. It was my birthday last week and I couldn't have anything, so we've put it on hold until I can eat. I'm hoping to be able to eat something for Christmas. I've started having cravings for things. I did try some food but my throat is too sore to swallow and I choked. Not fun. It made me realise I'm pushing myself too hard without listening to my body. So, when the sore throat and coughing goes, I'll start off with some soups and then some mashed potatoes/veggies with lots of gravy.
I get sweaty too, especially at night. I've had a couple of night where I've soaked the bed.
My speech is doing well. Not bad for someone with a sliver of tongue. I've noticed on correspondance from my medical team to my Dr that they're saying I've had a glossectomy rather than a sub-total glossectomy. I need to ask them why it's changed.
Monday I woke up with a strong pain on the side of my tongue, when I touched it I felt a strong pain and a lump, but in the mirror there were nothing visible Tuesday the area was covered with a small white patch, I went to the ENT thus day and he gave me anti fungal medication for 2 weeks
Today the pain and the white patch were almost gone, but I still have the lump, I fell it on the outside of the tongue but I can't see it
Do you think if the lump will go on its own? I'm hypochondriac and really afraid of cancer
None of my friends never had this issue and it's very frustrating to be the only one who face this
A hour isn't that far at all. I drive 45 minutes to work every day. Make a plan to go have dinner with him once a week. Bring him dinner and clean up afterwards. It will make a world of difference knowing that you're coming and that he can talk to you (or maybe not talk, but just be around someone who he doesn't have to explain stuff to). It's lonely, exhausting and stressful being a caregiver, and grieving the life you had before. Just sitting and eating might be what he needs. My mom is my dad's caregiver. Before he had cancer, she had a heart attack and triple bypass. She's the glue of our family. She makes him dinner every night. She makes him coffee every morning. They watch the news together. He was lost without her, and I came home from college to help him while she was recovering.
Anniesmom, A few OTC supplements I use for sleep aid are Melatonin and 5-HTP. I don't take them together, just one or the other. Also, I just wanted to mention to everyone to do your own research if you are combining anxiety meds with sleep meds. There is a combination that could cause serious side effects, which happened to my 89 year old father. He was on a sleep aid, I think Ambian, and was OK with it. He went on a anxiety medication due to being unruly at the assisted living place, and had these random fainting / seizure episodes. I'm not certain what the antidepressant was, so I don't want to mention a guess. But make certain to ask your doctor about what med combinations can cause seizures, including herbal supplements.
My Dad is 7 months out from his last radiation and chemo treatment. He is barely able to get his obturator in and out of his mouth (he has very limited motion in his jaw). This is supposed to be a temporary obturator. The thing keeps breaking and his dentist keeps repairing it. Its on its last leg... He has an amazing dentist, who really wants to help, but he can't get his mouth open to get an impression for a new opturator.
He goes in next Tuesday for surgery to drain an abcess in his mouth and to try to free up his jaw a little. Does anyone have any recommendations or help to offer? He has trouble eating or drinking without the obturator, he aspirates on his food/drinks.
Hello, I love this forum. Such amazing people and suggestions. My 91 year old mother had a recurrence of her oral cancer; along with tumor on her jaw. Qualified for an immunotherapy trial which she wanted to try. (In her mind, what have I got to lose?) Here we are 4 months later, tumor on her jaw pretty much gone and cancer dwindling. So here we are with this encouraging news, but the side effects? have been awful. She contracted C-diff in August which took about 6 weeks to recover. We had a feeding tube put in because she was having difficulty swallowing (lots of mucus and gagging). And now, she is sleeping almost all day and night and the diarrhea is chronic. Trying to figure out if this is end of life/stage stuff, needing a break from immuno treatment and/or??? Also trying to figure out the best place for her. My sister has mom living in her house and it's been really challenging for her. Thanks for letting me share this...hoping someone might have a similar story and how you handled this.
Thank you gmCraft. I appreciate your information! We are going to try to decrease stress, get sleep, take D3 (which most of us Floridians are deficient in), eat good food and whatever else we need to do to increase his immune system.
It has been15 months since my last radiation treatment. As I posted before, I had tongue cancer went through all the weeks of chemo and 49 hits of radiation. I am thankful that my cancer is gone, but the radiation has trashed my voice. I did try voice therapy, it doesn’t help and wanted to reach out to the forum to see if anyone has ideas to help treat the scar pain, and help my voice from sounding like I am 90 years old. I know that the thick saliva doesn’t help my voice too
Hey gmcraft. Thank you for the advice. I contacted the nutritionist at the hospital. She thought it might have been a little early in the healing process to reintroduce solid food (like a few on here have also suggested), and that the toast might have been my downfall. She encouraged me to continue to experiment with small servings of soft foods to find the ones that are the least irritating to my unsealed digestive system.
I had Proton therapy 35 treatments plus weekly Cisplatin back in April-May 2018. It was a rough go and I'm not sure my side effects were any less than regular IMRT. What was the main concern for me was the hope of less future damage from Proton and time will tell if that is a benefit or not.
18 months later, I feel like my old self with dry mouth only at night. Hoping thats the worst of the damage done.
Hi GR, I have never had a PEG tube, and so I can't directly address your question about how to deal with the depression that comes with that specifically and the feeling that you will never eat normally again, BUT, I have felt extreme depression from the changes in my ability to eat from taste bud alterations and mouth sores. Unless they have gone through it themselves, I think it's hard for people to understand how devastating it is to lose the ability to enjoy food, be comforted by it, share meals with others, especially as we move into the season of Thanksgiving, winter and comfort food.
I had 35 treatments of RT, 7 weeks, during which food began to taste like dish soap or poison. I understand that taste changes are individual and that taste buds may not come back for months or even up to 2 years, and that vibrancy will be reduced at best. To have an appetite, I have learned, requires working taste buds! And when I had mouth sores, there were times when the pain from eating was so bad that I felt I had developed an eating disorder overnight and wished for a feeding tube.
Hang in there. As my therapist would say, "what evidence do you have to support the thought [that you will be eating through the tube forever?]" If it will NOT be the case, and I hope it won't be, then is there someone you can talk with, a therapist, to help you through this tough bout? I am fortunate to have access to a free therapist through the Dempsey Center in South Portland, Maine. She has been wonderful and has introduced me to cognitive behavioral therapy to help me with some of my distorted thoughts (google David Burns if you don't have access to a therapist.)
I hope someone will reply who has more direct experience with what you are going through. Remember, you are not alone out there! People like me are rooting for you and here to encourage you not to give up!
Hope today is a bit better for you than yesterday!
Of course! Dad's stay in the hospital for the first surgery (the fibular reconstruction) was 7 days. I think it was 9 days the second time (scapular reconstruction), after rads. They told us to plan for a 7-10 day stay each time. Dad was actually sitting in a chair and having tube-fed meals two days after surgery with his fibular reconstruction. He was walking to the bathroom with assistance and a walker four days out? And he was making laps around the hospital before we went home. We came home with just a cane. He had a visiting home nurse come check his wounds and do strengthening exercises with him for about a month. He used the cane for several months if we had to go shopping, or back to Boston for follow up, or any place that required more than a few minutes of continuous walking. Now he doesn't use a cane. I think his ability to press his foot down isn't quite as strong as it was before as he's only occasionally driven his beloved standard-shift street rod since. He gets around really well these days, though. Likes to tinker on his cars and walk down behind our house to where the parts cars are a few times a day.
They told my dad before his second procedure that the fibula is the most painful of the places to take the tissues for reconstruction, but Dad said he wasn't really in pain after the first surgery, and having an injured arm was more difficult, painful and inconvenient.
Hi Christine, I was going to ask the oral Surgeon that question but he refuses to even pull one bad tooth because of my current year old health problem. He is saying that it will just fall out eventually, meanwhile I have a infection going on and have bone loss, also tingling and pain. I am scared to death of ORN. I a very thin and have a histamine problem with a lot of foods and severe stomach pains. Take care Michele
my husband tried something called miracle fruit. He googled it. He said it is truly helping with things tasting a little better. the only taste issue he has really complained about is how nothing tastes sweet though he eats entire pies in a day or so....maybe he just likes the idea of it and they are cream pies so they are smooth and go down easy? He is going to tell the ENT at his appointment this week about this miracle fruit.