This morning much better. I could feel last night like the pain switch was shutting off. Still some discomfort and I can see white patches around the biopsy. I,suspect those will go away once I’m fully healed.

Anyone else have a doctor that will not release results unless it’s in-person? It’s really annoying me and making me wait seems cruel to me.

Just over a week and my tongue still hurts. Mostly where he did not take the biopsy. If I press the side of my tongue on my jaw it really hurts. I can see it’s still swollen a bit. I’m so tired and exhausted from playing out scenarios in my head next Friday.

Thank you. I go from this will be nothing to the worst possible scenario. I've been tied up in knots for weeks.

Hi Vidpro,

Welcome to OCF. I am sorry for the anxiety and pain you are suffering. This process can be a real roller coaster. Thank you for reaching out and sharing your experience. It will certainly help others and we are here to support you. Please keep us up to date.

Stay safe, keep the faith,
Nels

Hi Julie,

Radiation treatment is cumulative and will normally get worse for 2-3 weeks after your last session. Then, you should see slow improvements. I had to learn to judge my improvement from radiation treatment in weeks/months rather than days. Eating and remaining relatively active was key to my recovery. I would pound whatever food I could using a Vitamix or similar helped. I would dump whatever in there I could stomach. I spent many hours eating every day for those months after rads. Add a 10-15 minute walk, light yoga or chair stretches, a nap, often 2 naps a day were common for me.

Most food tasted terrible for weeks/months. A couple items that never tasted horrible - eggs, green beans, avocados, vanilla ice cream, french toast. I can recall feeling like I was eating cardboard or dirt sometimes. I just keep slamming calories and searching for new flavors. I would measure my calories every day and reward myself if i hit my calorie targets (2,000 i think?) and exercise and mindfulness exercises. Sometimes, suddenly a flavor would come back. Suddenly a banana tasted normal again when last week I had to blend it with ice cream or avocado or ....

As for sleep...everyone is different...hard to say...depends on the other 6 hours. If those are active then maybe 18 is good. If you are not seeing improvement in food intake, activity, mood, etc., I suggest getting with your medical team soon.

Brian will have excellent feedback too so hope he chimes in here as well.

Stay safe and keep the faith - Nels

Biopsy done yesterday. Hurts Ike hell, but a bit better this morning. This doctor likes to have the patient come in when the results are in no matter what the results end up being. Can’t get to the office until the 18th so another two weeks of being on pins and needles. We will not be around next Friday so the doc said no concerns if we wait another week which makes me feel slightly better. Just happy to get this part done.

hi brian

my husband is also stage 4 tongue and floor of the mouth cancer he has had the operation and flap from arm to rebuild they could not remove all the cancer and get a clear margin

he has just finished radiotherapy 20/09 20 sessions 55gy for 15 mins per session

had spread to nerves and tissues he could not have the chemo as they did not think he was fit enough

he handled the radiotherapy quite well but seems to be deteriating now he is sleeping so much i would say 18 hours per day easily , is this normal

he is managing some fortisips but no food which i know is not helping

please advise if you felt this tired and its normal as they did say that all it would be rough when the treatment ended

thanks

julie

Hi,

I'm having a really tough time dealing with this...never been good with doctors. I'm just bundle of nerves and I'm terrified at the moment.

Around July I felt like I had a canker on the right side of of tongue and when I checked in the mirror I saw that the side of my tongue had a very large whit patch. I eventually went down the Google rabbit hole and learned about Leukoplakia. The mild discomfort pain seemingly got better over time, but never gone completely. I went to my dentist and he said give it a week and let's check it again. After a week it looked like it was fading and I was pretty happy about it, but it never quite disappeared. I finally made an appointment with an oral surgeon who told me it was Leukoplakia, but saw no problem in waiting six weeks to see if it goes away.

I also had a very large amalgam filling that was really a tooth built out of the stuff. He said get rid of that and cap it which I did two days later. After the filling was removed I noticed the burning sensation and metallic taste was gone and the white patch soon receded to very little. I thought I was in the clear, but the oral surgeon said it's still there and a biopsy is needed. He wouldn't even recognize how much it changed over the six weeks which was disappointing. When I first saw him I told him that it would be worse in the morning, but better at night and seemed to fade in those hours. I would actively keep my tongue away from that tooth/filling. He flippantly said it was wishful thinking. Whatever the results are, I will probably find another oral surgeon. He does not have a very good bedside manor. He said he doesn't think it's cancer and it might be mild to moderate Dysplasia according to him. It might even be frictional, which I heard under his breath.

I'm worried mostly because of this on off pain. It can feel like it's gone to mild discomfort and some burning. It's weird how it can shut off and come back. It has definitely changed over the past couple of months. It was worse then and I've had days were I think it's gone for good.

Anyway, I go in tomorrow for the biopsy and in my head I'm expecting the worst possible outcome.

Thanks for reading~

Hey mates!

While I have not personally consumed the cisplatin drug, however, I have read a lot about it. I can share some insightful information and would be glad if it could be of any help to you guys. Some points to ponder:

The chemo drug cisplatin is used to manage and treat solid tumours and hematologic malignancies.
It works really well for the treatment of advanced cancer of the bladder, ovaries, or testicles.
It interferes with the growth of cancer cells, which the body eventually destroys.
This medication comes in 2 dosage forms: powder for solution or solution.
Some common cisplatin side effects are blood in urine or stools, dizziness, change in frequency of urination or amount of urine, fever or chills, loss of appetite, weakness in the arms, hands, legs, or feet, and increased thirst.

Additionally, some side effects may occur that do not need medical attention. They go away during treatment as your body adjusts to the medicine. Also, if you feel unusual side effects that doesn’t go away, like indigestion, swelling or inflammation of the mouth and rash, consult a doctor rightaway.

I hope this information was helpful to you. Always remember that batting cancers and tumours can be challenging; however, I encourage my mates to keep fighting.

You’ll get well soon and surely, the sun will rise one day super soon!

Isaiah 40:29: "He giveth power to the faint; and to them that have no might he increaseth strength".

Hugs & Love!

https://www.thelotusbiotech.com/product/ciswel-50mg-cisplatin-injection/

Hi mate,



Glad to find out this forum and you guys...

Very much enjoyed reading you perspective. Very positive. I was on PEG diet for only a little over 3 months during and after IMRT to the head and neck.
Im 8 years out now but am having swallowing issues after ORN and jaw reconstruction.
I sometimes contemplate on what if i permanently loose the ability to swallow.
Thanks for your thoughts and the fine work you are doing.

Hello friends, 8 years out from IMRT to head and neck and i have to admit i have not done well with massaging the tissues regularly. Some muscles on my right side of neck are rather woody as is my esphosogus. Difficult to swallow. A few months back had it stretched for thr first time.
My question is, is it to late to do massages?
Will i regain any ground or will it help it not to worsening?
Would appreciate any help in this matter.

Hi friends. My first time here and on any kind of forum. So if I'm not doing it right please point it out, i have thick skin.
8 years ago diagnosed with SSC stage 5 in head and neck. Occult primary but PET scan showed 8 hot spots. Ran the Trifecta, surgery, chemo and over 30 days of maximum IMRT.
TOUGH, as many of you know. I lived. But at a cost. Many of you know the difficulty of recovery. Just when i thought life was returning to normal guess who showed up? ORN.
Was fortunate to have a very skilled surgeon for the Fibular Flap jaw reconstruction.
Life still far from perfect but i am alive and grateful.
Would be willing to share my experiences and what little knowledge i have with others and would appreciate your suggestions for my ongoing issues.
Wishing each and everyone of you the very best.

This cancer can be converting cells outside of a clean margin that are not showing up today as cancer but will in the future in many people. It’s called field cancerization. The lower dose radiation is the best current path with few long term implications of normal high dose radiation. With it you will be sure they got everything. While this is a relatively new protocol it in clinical trials had a high degree of success and is the current thought today. It was pioneered at Mayo Clinic which has the longest term data on its success rates if you want to research it.

Once this has happened you are where you are. I am in the same situation. I’ve been on a permanent PEG feeding for five years. There is no treatment for this situation. Accepting things and ultimately getting the right low profile PEG, and then learning to blend your own real foods to bolus syringe put into the peg is the best long term idea. You don’t want to live on pharma company junk that isn’t ideal nutrition . I miss eating normally and the pleasure derived from it. But if this is the situation, finding acceptance and learning to do this well you can get on with an otherwise normal life. I’m eating healthier than I have in my whole life. It’s improving other aspects of my health. You have to become a student of nutrition for a while but once you have a system down this is fast and simple. There are people here that can help you get started when you are ready. You will have one type of peg first that dangles in front of your stomach. But in a couple months after the stoma has healed properly, you can swap that out to an inconspicuous button called a mic key, and life gets simpler.

Trying to continue drinking and eating normally will ultimately lead to silent aspiration of liquids and foods into your lungs. This will cause pneumonia. While that can be treated with antibiotics, if it happens repeatedly it will become antibiotic resistant and can kill you. You need to accept the cards you’ve been dealt and learn to do this in an intelligent way.

This area while it can be treated surgically, could have long term consequences when vital portions of it are removed. It could impact swallow ability, speech, and much more. Anatomical details of where this is are likely pushing the doctors to this choice of treatment. You need to question them on the factors that are driving their choice and feel comfortable with the idea.

On another note history and the past are just that. They occurred, they are not changeable, and you need to focus on today. Don’t beat yourselves up over decisions in lifestyle or choices that you can’t change. It detracts from your mental well being, and you need to focus on today and what is possible.

The option would be radiation treatments. Probably with concurrent chemo. While a 6 hour surgery doesn’t sound conservative, compared to 6-7 weeks of radiation it may be. There’s not a lot of detail in your post about the surgery and what structures and parts of the anatomy will be impacted. What long term functional or esthetic concerns it may cause.

Personally I would want to understand all that in detail, and the doctors are obligated to discuss that with you. You also do not say if his treatment plan was decided on and developed by a tumor board composed of doctors from different disciplines and training. If that is being determined by the ent only, who is only trained in surgery, this choice is obvious. A tumor board would have both a radiation doctor in its group, and a chemo doc to weigh in on options. The best plans are developed this way, not by a doctor trained in only one treatment modality. I would explore this to end up with the best idea developed and agreed to by a multidisciplinary group of doctors.

My partner has been cancer free for 10 years.
He had radiation for Stage 1 throat cancer. He had gone to his ENT for this and he took a watch and wait attitude.
My partner had been a 3 pack a day Camel smoker and severely alcoholic for 20+ years. With his life style he insisted on a biopsy. It was cancer caught very early.
Had radiation treatment’s and was cancer free for ten years until now. He noted a small lump on the right side on base of tongue. The Ent sent us to a head and neck specialist in Miami where he had CT scan and Biopsy which revealed a squamous cell carcinoma. The tumor is the length of a quarter, oval in shape and 4-5 quarters thick. Stage 1 , large T1-2 N-0. Surgery is to be major. 6-8 hours, with graphs and reconstruction of the tongue with tracheotomy (temporary), feeding tube and 6 days in hospital. Does this sound normal to anyone? Lexie

I don't even know what questions to ask at this point. His lesion is in the supraglottic area of his throat and he has 1 node involved, we don't know of distant mets yet. So far the surgeon is stating chemo and radiation and not surgery because of the stage and significant side effects. Since we haven't met with the surgeon yet, I can only surmise that the significant SEs are loss of voice box and all that that entails. Anyone out there with a similar diagnosis that has any food for thought? Questions we should as the surgeon maybe?

I am also very much blaming myself. He has had obvious symptoms for over 6mos now and I didn't take them seriously enough. I should have forced him to go to the MD so much sooner than I did.

Jenni
Husband 56yo
Long time smoker of 35yrs, sober for 4yrs but history of alcoholism

Welcome to our group read as many posts as you can that's what I did and ask any questions you might have we will try to help.

Hi - my husband was just diagnosed with stage 3 throat cancer. We have been waiting to meet with the surgeon for almost 10 days now. All I can do is think about the worst but I just found this thread and I am grateful for the opportunity to at least see what might be in store for us.

Hello! First post on here. Here is a summary of my background:

Carl completed chemoradiation therapy for a T3, N1 right base of tongue squamous cell carcinoma on 08/25/2014. He was treated with HD cisplatin and XRT.

SLP:
When muscles in our throat have radiation, the radiation causes scarring (also called fibrosis) to build in the muscles over time. This continues to happen for the rest of a person's life, long after their radiation treatment is done. The more scarring that occurs, the weaker the muscles get. This is why swallowing gets worse over time for someone who has had head and neck radiation.

Your swallowing muscles are very, very weak and stiff so when you try to swallow they can't push the food into the esophagus. It gets stuck in your throat and then goes down the airway. The airway is essentially "the path of least resistance".

Current prognosis:
Your problem is with the muscles above in your throat. Your issue is with the muscles at the back of your tongue and the muscles in your throat. They do not move well and do not have much strength due to radiation induced fibrosis. Unfortunately, there is not a surgery or a medication to fix these muscles as we talked about when we saw each other in person.

I am stuck on a g tube now 100%. Was told to avoid food and drinks by mouth due to aspiration risk.

Does anyone else have this condition and has anyone had any luck with a procedure to fix this?

Hi Mike

Welcome to OCF! I am so sorry to read of your cancer and your recovery problems. I have some similarities to your experience and will offer some insights. I was diagnosed stage 4 tongue SCC in March 2020. Surgery April 1, 2020 and finished radiation July 8, 2020. Found cancer in one lymph node but it was still inside the node so no chemo only radiation. All check-ups and scans clear since then.

Surgery consisted of removing the right half of my tongue and all nodes on the right side of my neck. Recovery was rough but I could see improvement every couple days or so. Radiation was much slower. It was slower to impact me and slower to recover. I learned to judge my recovery from that in weeks/months. I would journal daily to track my recovery, food, exercise, practice speech by calling family and friends every day, meditation, prayer, etc. Occasionally, I would go back and read from a couple weeks ago and realize I had come further than I thought.

I was eventually able to eat most foods again (avoid the spicier stuff) and speak without much of a lisp. Food took years. Some foods came back in a couple months such as the softer/wetter foods/less flavorful. I had to be very patient with saliva. This has never returned fully and I was told never will. But, I can now eat crackers and other relatively dry items with water or just patience. I probably have about half my normal saliva. Total guess, not sure how to even measure that!

My work is not as physical as yours so that was easier for me to do part time from home and eventually come back to the shop full time. I did get active again soon as possible. I was walking around the hospital halls and dancing in my hospital room alone after surgery. Soon as I got home, walks were 1-2x per day. Eventually, feeding tube removed, I was able to jog about a mile. We just kept adding a little more. Today, I am as physical as ever. Did a marathon a couple years ago with one of my sons!

Happy to offer insights to anything else and hope this helps.

Stay safe and keep the faith,
Nels

Hi Kirks,

Welcome and thanks for reaching out. Please come back to the site occasionally as I am sure you can offer support and help to others based on your experience.

Best,
Nels

Hello GD,

Welcome to OCF. I am so sorry to hear of your cancer and recovery troubles. Feel free to offer some details in this forum as we have plenty of active members that may be able to offer some ideas to help. At a minimum, we can offer hope and encouragement.

Stay safe and keep the faith,
Nels