This is so helpful to know! My husband is just 9 weeks out from ending chemo & rad treatment and just began. Ring able to swallow small amounts of liquid last week with little to no pain. He’s talking more, has facial hair again and we’re hoping these signs point to a very slow but gradual healing. We know it will be some time before he’s able to transition off the g-tube. What kinds of soft foods were successful for him and did the transition to all foods take all of that year?
I wouldn't let the internet make you crazy trying to diagnose yourself. The best thing to do is get a biopsy done so that they can determine what it is. I too am a worrier by nature and worry about my mom day and night. Please keep us updated on what you find out.
Jeesh, Paul - what you've been through and are STILL after all these years! It would certainly break a lesser man and I've always admired your guts. I hope you get some relief soon. Glad the father-daughter team is so great. All good thoughts your way.
The tongue twisters thing is a great idea. I plan to look into it when he feels more up to it. Only one more week to go....
Ohhh, Ok. I see. They did the same thing with him except they used skin/tissue from his thigh instead of his abdomen. I didn't even think of that... I knew you guys had a lot of the same things done during your surgeries so I kept thinking why would they have cut her there??. Duh... Don't know why that never even occurred to me.
Well, after the week is through, I'm not sure what the next steps will be. His burns on his neck are pretty red and he is having a lot of mucus/saliva but at least there haven't been any setbacks so once this week is done, hopefully we can begin working on getting close to a full recovery. I'm going to try to get in touch with his surgeon and find out when his next appointment will be, next steps, etc... I know he is just focused on getting through this radiation/chemo right now but I would like to at least have an idea of what to expect.
I hope you've still been able to get out and about as you like. Best wishes!
Welcome to OCF! Im sorry to read about what you currently are dealing with! Its never easy when you are worried something going on could be a very serious health condition. Hopefully what you have is nothing serious and can be easily treated.
Theres a general rule we have around here that fits your situation... Anyone who has a spot, lump, sore, etc in their mouth for 2 weeks or more should get it checked by a professional. By [i]"professional" I mean you should seek out an experienced ENT who specializes in OC. You do NOTY want to select an ENT who primarily puts tube in kids ears as they may not be fully versed in OC. [/i] Since OCF is comprised of members who are not medical professionals and we do not have any formal medical training/education. That means, we are people who have gotten thru diagnosis, treatments and recovery for OC. As a group of oral cancer (OC) patients/survivors and caregivers we are not qualified to weigh in with our opinions on what is best for your individual situation. Its never easy trying to figure out what your next step will be when you're in unknown territory. Unfortunately our opinions on what should happen next arent beneficial to anyone. Reading on the main OCF site where theres page after page of important articles that may be helpful with figuring out whats best.
Another option would be to go for a second opinion at another ENT's office. You need to be sure whatever ENT you select they specialize in treating OC patients. Hopefully what you have going on is nothing serious. Just in case if you are a smoker, or chewing tobacco user do yourself a huge favor and immediately stop using it! Also avoid mouthwashes that contain alcohol, that goes for drinking alcohol, even beer until you know what is going on with your mouth.. Drink lots of water and
I’m so sorry for all your mother has been through Danielle, but so happy that the radiation is working. We appreciate the detailed update on her as that’s how we stay in hope and keep fighting. Thank you so much and kudos to you for all you do for her. Please continue to keep us in the loop.
Thank you, gmcraft! Things are slowly moving along, My physical therapist get along, their all nice there, and he has me concentrating on walking, with assistance, on the parallel bars to help walk. With my left arm paralyzed another worker holds up my arm.
Nope, my tumor is/was not HPV based - squamous cell carncinoma - floor of mouth cancer that had spread to the mandible. My dentist sent me to Sunnybrook as if there was no other place I should/could be sent. In the early days I did a little research for ENT cancer treatment in Toronto, and you really only come back with Mt. Sinai and Sunnybrook. Now, that said, you can get radiation/chemo at a lot more hospitals and, I know my Surgeon is a professor at UofT and has credentials with UHN hospitals - he does surgeries elsewhere. So, from the outside looking in, who knows how this is all fit together.
I'm glad I had the surgery as all the 'visible' cancer is gone and the margin biopsies all showed me clear. Finally, biopsies of various cancer pieces showed none to be metastatic. Now, I was discharged from Sunnybrook on Sept. 10 and am just feeling better now. Having the radiation/chemo still in front of me is a little demoralizing as I know I feel better, but, alas, it's not to last. This is a journey that I'm getting used to - albeit slowly.
I lost 10 pounds through the surgery and am not sure what I will -or may- lost due to the radiation/chemo. I don't have a peg tube or a g-tube. the doctors gave me a tube down mouth - throat while I was in hospital. Really was useful while I had the trach. After the trach was gone I coughed it up. I have a secondary condition (unrelated) that messes up my blood vessels and I can get some nasty nose bleeds, so no tubes down my nose either. They might have to give me that tube if I start to lose too much; for now am eating - am aware also that this treatment affects everyone differently.
I wish I could bike to Sunnybrook. Alas I'm downtown (Bloor/Ossington area) and am not biking to Bayview/Lawrence. And, with 3" of bone missing in my left leg I won't be golfing this year !! - but I do have a jawbone...
I'm so sorry to read of your diagnosis. You are in good company on this site though. We're a great family.
Everyone is unique and have had different experiences, so sharing what works well may or may not work for you. The best thing is time and patience.
I too had a stage 4 tumour in my tongue. I have had most of my tongue removed, had a radical free flap reconstruction (RFFR) which was taken from my left arm. My surgery was 8 weeks ago. I was in critical care for 3 days, and in hospital for a total of 9 days. I am currrently just over a third of the way through my 33 doses of radiotherapy (which will end on 31st Oct)
I suggest taking a small whiteboard and whiteboard pens with you so that you can communicate. It eased my frustration very quickly
When I had the tracheostomy in, I hated it, so as soon as I was given the go ahead by the speech therapist to practise speech, I would say the alphabet several times a day and name everything that was in my room. It was a lot harder than I was expecting it to be, but that was down to the swelling in my throat. It does get a little bit easier every day, just take each day at a time. I found that, at first, I was taking every hour at a time. The sudden fatigue is a thing.
Before your sugery, and this is very important, eat all your favourite foods. Eat and enjoy eating. Have your favourite pudding, have that extra helping. You won't be able to eat proper meals for a while and this really helps reduce cravings. My husband took me out to my favourite seafood restaurant where I had an entire seafood platter all to myself (oysters, lobster, crab, king prawns, crayfish, shrimp etc) It was beautiful. My sister took me out for amazing gelato.
A positive attitude does help. You're going to have major surgery, it's scary, but you've got a huge team of fantastic professionals helping you back to your new normal. Take your time and also listen to the team.
Wow it certainly sounds like you are cracking on really well. I completely understand about feeling emotional, you've been through the ringer. It's such a huge life changing event. Can you see if you are able to have counselling to help you manage your emotions?
Take your time with foods, you have plenty of time. Your wife sounds amazing, I hope you can experiment with your smoothies and shakes. I've been adding fruit and mixing the different flavours of ensure (chocolate and banana blended with frozen banana and some cocoa powder is very tasty, as is adding banana to the banana ensure and adding powdered peanut butter to help thicken it up)
Getting exercise, even on days when you want to curl up and hide, is really cruicial. Even gentle stretching will help. Massaging your scars will help too, I found it's helped me accept what I've been through, although I still have dark times (I'm seeing my Dr tomorrow to refer me for counselling)
You are doing so well though. I'm jealous of no feeding tube, but I know I might need it with my radiotherapy as mouth sores/ulcers are coming!
I'm in the UK, so some things are a bit different here, but not too much. Still same surgeries, similar treatments, just the meds have different names really.
I know this is different, but when my daughter was a baby and she was nursing, we treated her thrush with something we could swab in her mouth (and on mom, of course, so I wouldn't catch it and get infected too) ... I forget what the stuff was called, something violet, but is that an option? Something you can swab on the spots of thrush to keep them under control? If it works for babies and nursing mothers, it is definitely worth a try (because getting thrush as a nursing mom is no joke either).
After 2 major surgeries, radiation, and chemotherapy for my husbands buccal cancer.....he had his third reoccurrence. The doctor said huge strides have been made in treatment options..... with immunotherapy being very beneficial. So hubby is doing Opdivo every 2 weeks. After his 10th treatment, his CT scan was clear. He thought that meant he could stop treatments but the oncologist said he would be on it "a long time". With reoccurant oral cancer is the immunotherapy essentially "Palliative care"? Also, he is having a lot of trouble with the side effect joint/muscle pain. A rheumatologist would treat with steroids. But I have read that normal amounts are insufficient. Are there alternative treatments to high doses of prednisone? Any input is welcome. Diane
Thanks for the heads up! I saw several years ago Botox, and others being used for the head and neck, and vocal cords. I actually saw a top ENT for the vocal cords who did this with another agent, but I declined at that time due having other things going on.
what a tough story to read. I have been having an off day about 5 weeks out and read about your husband's inertia and resistance. It gave me the proper kick in the butt to get off my pity pot. I find that when I make a gratitiude list that helps me too, so I will be doing one of those right away. I also pray. for strength to meet each day, to be able to cope with any problems that come my way. Today I am wiped out and having trouble eating and my stomach is upset. But I have the love of my family, literally hundreds of people well wishing me whenevrer they see me, and some strong desire to get better every day. I hope YOU get an opportunity to continue to vent. Very important.