You’re right that it’s hard on the caregiver as well. I went back to see my therapist after I was told that John’s immunotherapy trial did not work. I recognized that I needed someone to talk to and friends were not the best people to reach out to. They just could not understand the complexity of oral cancer and its treatments. John had a therapist that he saw too on a regular basis.
All through John’s treatment, it was important for me to get up early enough so I could have breakfast quietly on my own. That was the one time I really valued. I guess it’s a way of saying that I needed some “me time” during the day. I am a knitter so I ended up doing a lot of knitting both in the waiting room or when I went with John to his treatments. Knitting is also calming because I could focus on something else. I read too, but it was difficult to read because my mine would be so busy that I literally lost the plot. I knew from the very first that being diagnosed Stage 4, John’s chances were not good. I did not focus on the “what if’s”, instead I focused on the next step, like I would not worry about an upcoming scan until we were sitting in the doctor’s office waiting for the results. I kept meticulous notes on medication, intake and I could talk to the doctors and nurses knowledgeably about whatever they needed to know. It’s my way of contributing to his care — I did not just do what we were told to do, I actively managed the case. (One time, I had a hospital pharmacist asking me if I was a pharmacist as I was talking to her about serotonin syndrome and she couldn’t understand how I knew all that.) I actively advocated for John. If he was in Emergency, I would be making sure he was getting the help he needed in a timely manner. When he was in hospital, for example, I made sure his sheets were changed and if not, I would go talk to the nurse in charge.
Then, of course, I was on this forum everyday picking up pointers and cheering people on. I’m sure you’ve felt the camaraderie here. I learned a lot from here that I could use in caring for John and I got a lot of comfort too.
Going back to your first question, yes, the anxiety can be overwhelming. I honestly felt I suffered from PTSD and it took me two years after John’s passing to feel like my old self again. During John’s treatment, knowing where and how I could get help was the crutch I leaned on. John had a fantastic family doctor and he would ask to see John every month to check on him and if John was ever unwell, we knew we could get in to see him the same day. (John once had the hiccups for hours on end and the doctor gave us an appointment at the end of his day so he could get relief.). John had a nurse from CCAC visiting weekly and she’s a gem. The pharmacists at my Shoppers talked to me as a friend, explained stuff to me and even offered to deliver the medication when I couldn’t leave the house. Having the support network and being able to use it was so important. I am very grateful to all of them who gave me the help. Someone recently commented that that’s what these people were trained to do — that’s true to some extent, but I needed to want to accept their help and tell them I needed the help.
The most important thing is perhaps knowing that you are not alone in this. If you or your wife would like to send me a PM (private message), please feel free to do so. Tap on the little envelope on the top right hand side of the page next to your name.
Please under that we are a group,of,patients, ex-patients and caregivers who have gone through or are going through the oral cancer journey. We do not have any medical training. We are here to share what we have learned from our own experience. We cannot answer questions which are best answered by medical professionals, like an ENT. Anyway, you wouldn’t want us to diagnose your problems as it would be extremely irresponsible of us. I would strong,y advice that you seek out an ENT who has experience with oral cancer. That is the best way for you to get answers to your questions.
My mum has a recurrence of squamous cell buccal mucosa. She had surgery July 18 (flap/neck dissection) followed by 6 weeks radiotherapy.
In September 2019 she was diagnosed with a recurrence and has declined surgery, radiotherapy and chemotherapy as she doesn't want anything which will make her feel worse than she already does.
The tumour has now grown onto her lip, a hole is in her cheek and the pain is most in her chest now. Food needs to be pureed or mashed and frequent changes of dressings are required to absorb secretions.
She has a morphine patch and a Scopoderm patch to try to dry the discharge.
Anyone else living with this/observed this who has any advice on how to cope? Strategies that make life more comfortable/bearable? It would be nice to not feel so alone.
Your post did not say whether your partner has had any treatment at all. My husband had cancer in the base of tongue (oropharyngeal). He had radiation and two doses of cisplatan. There were various kinds of complications from treatments like DVT in both legs and his esophagus was closed by scarring.
However, when the cancer metastasized, John was given a chance at immunotherapy. It was at that time a Phase 1 trial. When it did not work for him, he was given Taxol/Carboplatin. Following, he was enrolled in a Phase 2 trial of Selinexor, which weakened him and it was discontinued. John also had a new procedure done to open up his esophagus. As far as I know, up to 2019, he was still the only person who had had received this procedure. The procedure was successful and he was able to eat soft foods by mouth. Unfortunately, he then developed silent aspiration which caused him to be hospitalized for pneumonia. After he came home, he had a fall which resulted in a hairline crack in one of his ribs. It hurt but was not serious enough to put him in hospital. At that point, he was in palliative care at home. He was prescribed codein (if I remember correctly, it was 1/4 or 1/8 teaspoon only) for his pain. Then he developed pneumonia again and eventually, he passed from pneumonia.
John never gave up. He would take whatever treatment that was offered. He was never in a lot of pain except when he cracked his rib. As a caregiver, I could see he was becoming progressively weaker. It was like he was slowly slipping away. There was a lot of managing on my part — the daily injections for his dvt, the meals, the meds (whether they could be crushed to be put in his feeding tube) or if there was a liquid form of the prescription since he had difficulty with swallowing, the postural hypotension when he could pass out at the most inconvenient places like the parking lot, the medical emergencies when I had to take him to emergency. Like you, I was determined to keep him comfortable. However, he complained constantly about not being able to drink even a sip of water after he developed silent aspiration. Despite being quite sick, he was still an individual with his own mind and wishes. I felt it was important to respect that.
I don’t know if this is the kind of information you’re seeking. Whether your partner chooses treatment or not, it will be a bumpy road ahead, and it’s not just the pain. The body, I far as I could tell, slowly breaks down. There will be the loss of interest in even the basic things in life, like watching TV or reading the papers because the body is so weak.
I cannot tell you or your partner what choice to make, but not choosing treatment may not mean the end would be quiet and easy even if the pain’s under control.
I am 10 months out from my last treatment for base of tongue stage four and I am still on a liquid/soft diet. My radiologist mentioned HBOT for help with saliva production. I have read several posters comment that they have done many dives. I'm wondering if anyone has experienced increased saliva flow after oxygen therapy.
Hello, My name is Efrain Quintanilla, I was diagnosed in March of 2019 stage 4. I underwent 8 rounds of chemo and I showed I had good response to chemo so I then started my radiation therapy in July which ended my treatment In august. Its been a rough couple of months as I am trying recuperate from such a heavy treatment. Scans showed clear in November. I am not recovering from the flu which is no fun. I am having irritation with spicy food in the area where I had the tumor which freaks me out because it makes me worry. I also developed a Sore/Blister and im thinking its because of the fever i had but im going to see the doctor pretty soon. Hope and Pray for the best for all of us.
Thank you so much, Paul and Christine. I am very grateful for any tips and suggestions of any kind. My husband has a lidocaine rinse which he is using on the sores. We might be using it wrong as it doesn’t seem to help him much. He has tried swishing and spitting as well as dabbing it on the sores with a q tip. Because of dental alignment issues from his mandibulectomy last February, he is already on soft foods. He says his toothbrush hurts so we will shop for a new softer one today. He has gotten mixed messages from the dental team about using a water pik. So far, his appetite is still good but I am continually waiting for the other shoe to drop. He is being treated in NYC so for now we are walking to treatments. The hospital is actually moving his treatment to a facility closer to where we are staying just by coincidence. I am planning an afternoon off tomorrow when a friend of his comes to visit. This forum has been so helpful to me. Thank you for all of the work you do to keep it going.
OCF has a worldwide presence. At this moment, OCF may not have any members living around your area that are actively reading/posting and who also have the exact same special needs as you with requiring help from a speech therapist. When I read first your post, I thought to myself if you do not have any replies after a couple days you probably wont have much luck finding help here so I would respond.
Asking other members for help in finding a specific medical professional doesnt usually work out as expected. Unfortunately, its just by pure chance the right person who has found and used a certain kind of specialist in the general area you reside in reads and responds to your post. OC has so many variables with tumor location, size, stage, treatments, area affected by treatments, age, general physical health, surgeries, plus in your situation a total glossectomy which far less than half or a quarter of OC patients have done. What one patient loves, another similar patient may find would never work for them with different personalities and needs. Here at OCF, we do NOT rate physicians, medical professionals, or treatment facilities for good reason! On our public forum, its best to avoid the entire notion of naming doctors, facilities (good or bad) as we can never allow anything disparaging or even overly positive about any person, facility, place or thing. OCF, its members, people behind the scenes, advisory board etc are NOT qualified to rate or judge any people, places, things by sharing our own personal opinions. One person may love their doctor (almost everyone here does) while another could think they're the very worst of the worst simply based on a weak handshake or lack of eye contact which does NOT impact their skill. Theres a great many websites (some free, some not and the same goes for being reputable...) that compare and/or rate medical professionals. Those sites each have their own set of criteria they judge by which may or may not work out for your situation and needs.
Whats worked in the past for others is to contact their treatment facility, treatment doctors, ask nurses, and or asking friends, relatives, co-workers who live in your area. Calling your insurance company to get a list of available specialists also has worked for many seeking the right fit for a specialist.
Hey Bob - I'm saying hello and welcome, though since my situation was so different from yours I don't unfortunately have anything concrete to offer. I'm sure someone with experience will come along soon and help you. This is a great place for support and assistance.
Hello, I dont know if I'm in the right sub Im 24 years old male, non smoker non drinker
2 years ago I had a strange lesion in the epithelial of my hard palate, it was a tiny lump with a red circle The lesion was very tiny : 2 mm
After a complete removal, it showed mild to moderate atypia, pathologist said he cannot definitly assert a dysplasia
3 month after the removal a big lump under the mucosa occurred but the epithelium was totally fine I was afraid so I get it removed : hyperplasia with inflammatory feature, the pathologist said the hyperplasia is probably from the inflammation (healing)
After the removal , again the exact same lump occurred (the same as the second), saw an ent that gave a scanner with contrast : everything normal
I have it for 1 year now
I saw an Ent specialized in tumor 2 month ago and he told me it's an osteoma and nothing to worry about, the mucosa was normal
Im afraid because I read many article about dysplasia that reoccur and transform into cancer Should I get this removed again?
Hello just some update about my case if anyone have ever been dealing with the same thing
- I will get my whole medical record from this cancer center and try to figure out if its a true dysplasia or a reactive lesion - i will get a genetic test to see if my tumor suppressor gene are working ( brca, tp53.,atm , xrp .. and fanconi anemia gene of course)
my father was a heavy smoker and drinker and never had a single tumor ! my mother died of breast cancer but it probably have nothing to do with oral cancer
i have 3 older brothers and sisters that are healthy
im still afraid of dysplasia recurrence but this was on palate , a site that dont have a big transformation rate, even in non smoker / non drinker
my ultimate goal is to get a whole genome sequencing and get some gene therapy to fix any damaged gene , but for the moment its just science fiction , it will probably possible in the next 30 years
actually i'm doing a lot of thing to decrease my cancer risk
this discovery changed my life forever
potential cause of this lesion :
- poor immune system : i got shingles and candida , disease that you can only get if your immun system is poor - bad oral hygiene : i didnt brush my teeth for decades ... not joking... - mechanical friction : mouth breather and gerd and acidic food
the lesion apparead after the death of my mother, maybe its linked, maybe not ...
It appears that you've already started. I suggest you read the book about a U.S. President, Grover Cleveland “The President Is a Sick Man,” by Matthew Algeo and his experience with this disease.
More important, be sure you are dealing with a cancer center (CCC). Oral cancer hits only a tiny percent of the population so you need people with lots of experience in oral cancer and not just cancer in general.
Quick question - has anyone ever had a nickel sized red, sore bump occur along an incision line following head and neck surgery? My operation was in late September 2019. The bump appeared last week. I am taking antibiotics and have an appointment to see my doctor January 30th. Hoping to hear from people who had a similar experience. I'm freaking out because I don't want the incision scar to open and I don't know what it is.
In other news, I am officially beginning week 4 post radiation. I've gained a pound and am beginning to swallow again. I can swallow liquids and soft solids. I'm working on swallowing squash puree, cranberry juice, and soft bread dipped in melted butter. My energy is coming back and the mucus is much more manageable. I am taking it slow and haven't tried to bike, run, or practice yoga yet. I am hoping to try yoga/biking this week. Still using the peg for sustenance, meds, and water - hoping next week to increase the amount of liquid I am ingesting by mouth. Sending positive, healing vibes to you all. I check this website every day and draw so much comfort from this community.
About 5 months ago I had a biopsy of a lesion on the left side of my tongue done. The results showed no cancer! and I think the doctor said not any displasia either. However, the doctor wants to remove the lesion. I had a rough time after the biopsy so I really don't want to have it removed unless there is a significant chance of it becoming cancerous in the future. I am 71 years old, female. History of lots of skin cancers, squamos and basal but no other cancer in my history. I had a procedure scheduled for the end of this month to remove the rest of the lesion but canceled and scheduled a consult appointment with my oral surgeon. Feel I don't have a grip on what is really going on... or why the removal is needed. I am also very concerned about the recovery because I had so much difficulty after the biopsy (i.e. pain) The procedure to remove the lesion is supposed to be done by laser and may take 6 sessions. If anyone has any advice for me concerning my upcoming consult visit with the doctor, or the pros and cons of laser, info on non dysplasic lesions and chances of becoming cancer in the future I would appreciate your input. I am not so brave as some of you...and I assure you I will remember you in my thoughts and prayers. I do realize I am sooooo lucky not to have had cancer result with the biopsy. Thank you! Mag
Eileen, glad to hear your husband is getting seen today by a medical professional! It’s probably nothing serious but you just never know so it’s always best to err on your be side of caution and get checked out.
Since your husband finished chemo/rads last August he’s still actively recovering and has at least another year and half to go until he will hit his final post cancer capabilities. ArounAugust of 2021 he will probably notice a few remaining mild issues sevthat have not gone back to how they were in his pre-cancer life. This is 100% normal. It’s actually pretty rare for OC patients/survivors to return exactly to their former selves. A complete recovery takes 2 full years. Most will have a few setbacks during their recovery phase.
Your husband currently could be due to a minor setback on his road to recovery. It could be nothing serious but because of its location we all always fast forward to the worst case scenario. That’s also very common! After what we have all been thru surgeries, chemo, rads we all have no desire to go thru anything else so we all fear recurrences. For me, I was soooo freaked out by every lump/bump I avoided reading any post that had anything to do with recurrences. Of course that’s just silly but it’s a huge fear for almost every one of us.
Hopefully he just has the beginning of a cold or something minor which is causing a little swelling which you both are noticing. Most post rads minor issues now take a longer to heal when that area has been radiated. Even the surrounding mouth/throat tissue has picked up scatter rads affecting their ability to heal as well. If no improvement within 2 weeks or so another recheck should be done. Please let us know how your husband makes out at his appointment. Don’t e surprised if doing a biopsy gets mentioned. It’s all part of being on top of everything to ensure your husband is ok. I’ve had at least 15 biopsies over the past 12+ years with most being negative due to my doctors being so cautious.
I was diagnosed with PVL 8 years ago. I underwent yearly laser ablations and scalpel excisions of the affected sites. I never had any dysplasia from the mulifocal yearly biopsies. Everything seemed to be under control...But, I developed a periodontal infection near a tooth where the Leukoplakia was present. The tooth was pulled, but the infection never healed and I was eventually diagnosed with SCC.
PVL is an insidious disease that nearly always transforms into cancer. My advice is to be aggressive early on and remove the Leukoplakia lesions on some timeline - mine was annual.
There are several publications that I have seen online that focus on PVL, but you are mostly confined to the seeing only the abstract unless you pay for the paper.
Unfortunately, because it is so rare, there hasn't been much research into it.
There are few words to say at this point that can ease your own anxiety and pain DanielleO, but just know that the strength you’ve shown in assisting with the decision making in her care has been the greatest gift you could have given her. That in itself is emotionally exhausting. Rest assured now that the Hospice Nurses will make sure she is comfortable and will meet her every need. Hugs to you and your Mom.
Hi,I have 7 radiation to go,my question is what is usual wait time after radiation,before the dentist can make my partial dentures ,they removed 15 teeth in all during surgery I would appreciate any feedback.
My mucus has decreased a lot, but I get a bit stuck in my throat that makes me vomit when my mouth goes dry. Yup I get the dry mouth, it suddenly comes on. I carry water with me wherever I go so that I can hydrate. Oh and dry mouth at night! WOW!! I'm waking up every hour, sometimes before the hour, to have a sip of water. I've tried biotene and Xylimelt, but because I can move my reconstructed tongue, the stuff just pools in my mouth or trickles to the back of my throat and makes me cough. When I'm trying to cough to clear my throat it makes my stomach lurch and I end up being sick again. So I wanted the medication to clear the last little bit. A suction machine wouldn't work as the mucus is in my throat. Sometimes it makes my throat feel tight and that's when I gag.
With my sleeping, I'm on the sofa as I kept disturbing my husband with getting up for a drink, or coughing etc, so I tend to start off in bed with him, then move downstairs. I can keep myself propped up too, which has helped.
I gargle with warm salty water many times a day, I use my waterpik to clear my mouth, I'm hitting my 2 ltrs a day, although it is a struggle when I've been sick as my stomach gets very sensitive. I'm not hitting my calorie intake though as I keep being sick. I'm on about half of what I need. I've tried little and often, but I was sick. I tried to space breakfast, lunch and dinner out with 5 hours in between..my stomach didn't like that either. I did speak to my team and they didn't seem massively concerned, but I am seeing my SLT next week so we'll see what they say. Today I am feeling a bit better. My stomach isn't bloated and I didn't feel uncomfortable after my breakfast shake, so I'll try some chocolate milk later on.
Christine, ((huuggss) back to you. Thank you for your compliments. You've given me a much needed boost! I've just finished 2 months post rads, so hopefully by the end of January I'll be passed the rest and will keep noticing the recovery bits.
Right , I can feel a nap about to happen. Have a great day everyone.
Hi,last chemo was yesterday and 9 more radiation to go so far only side effects I had was dry itching skin around my neck and lymphedema on neck but after my last chemo I am experiencing sore throat I hope it dont get worse weight is steady with help of feeding tube thankyou you for all your support.will update soon
I'm writing today to seek information about oral cancer, as my GP has referred me urgently for a biopsy with an oral surgeon. My symptoms began only 3 days ago, when I woke up in the morning with what felt like a canker sore on the floor of the mouth, specifically in the area of the floor of the mouth adjacent to the lower portion of the inner gums. The pain is in a spot that is difficult to see unless you specifically pull my tongue to the side and look with a flashlight, and it seems to radiate a bit to my ear. Anyway, on the day that the pain first began there was really not much of anything to see. That is, the tissue looked pretty unremarkable to me, with no obvious cause of the pain in sight. That all changed over the course of the past 48 hours, however, and in the intervening time the area has become increasingly swollen, red, painful and it now has has very obvious streaks of white tissue that I initially thought might be thrush. My GP said it wasn't thrush though, as the tissue itself appears white, rather than having white growths on it that can be brushed away. I can say without hesitation that my mouth did not look like this prior to 48 hours ago, and actually I had an appointment with an oral surgeon less than a month ago due to a different issue (12/9/19), with no abnormalities noted. Based on all of this, and I know online diagnosis is impossible, does it seem likely to those of you in-the-know about oral cancer that this could be malignant? My GP's concern has me very worried, but at the same time this seems to have had a very acute and rapid onset and the change in appearance of the tissue has been so incredibly rapid that it makes me wonder if cancer could possibly evolve that quickly? Thanks in advance for reading, and any information would be appreciated!