I'm so sorry you both are going through that. Bleeding is so scary. It sounds oozing is fairly common, but my mom had significant and steady bleeding sometimes for 20 or 30 minutes, usually overnight. She used an oral solution called Aminocaproic acid 0.25 gm/ml and it really helped. Its prescription so maybe see if the Healthcare team would consider this as an option. I hope relief comes very soon.
Mandy

Has anyone else been diagnosed with Stercoral Colitis? My body has been put through the wringer for 21 years. System failure and organ damage. This is the latest and I’m afraid it will be the end of me.

Hello, my mom is a 67 y/o female with a rapidly growing left SCC tongue tumor that is pd-L1 + and > 4cm. From the PET, they see 1 likely node involved, but the tumor crosses the midline of her tongue so they would treat both sides. She also has other health issues including past significant arterial complete blockages that have been repaired at Cleveland Clinic 2 years ago. She has kidney disease that is moderate related to this.

We've had 2 major medical centers in Chicago, IL review her case. 1 is suggesting immunotherapy then surgery, then radiation and likely chemo. The second, University of Chicago, is suggesting chemotherapy and immunotherapy immediately, then likely surgery + radiation. I've been looking up the trials and there seems to be good support for immunotherapy prior to surgery, but the chemo before therapy seems to be reserved for inoperable tumors or recurrent cancer, neither of which is her case. U of C is a pioneer in tongue sparing approaches but I know its not the typical care. Im her advocate and ultimately she will look to me to help her decide. I'm so scared to make the wrong choice. Has anyone had chemo and immunotherapy as a neoadjuvant therapy, then a subtotal glossectomy and radiation? Or aware of any data to support it? Thank you.

First I want to say that I had a laryngectomy back in 2001. In late May I was diagnosed with cancer on my tongue and on Jun 17 I had surgery to remove 2/3 of my tongue, a skin graft from my left wrist, another skin graft from my right thigh, and an emergency fasciotomy on my right hand, forearms, and upper arm because the IV failed during surgery. I’m 75 years old and I spent 8 days in the Surgical ICU. I’ve been home for almost a month now but I still can’t talk or eat because of the swelling. Thank goodness the Dr had a Peg installed before surgery. Next week I’m going to meet with the Oncology folks to discuss possible radiation treatment or immunotherapy. I don’t think that I can go through the rigors of another radiation treatment. I went through radiation in 1997 and IMRT in 2003. I would like to hear experiences you may have had with immunotherapy. Thank you.

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Heather,
Thanks for the info. Dental Oncology is such a rare specialty, it was very a difficult search. I am treated by Dr. Ryan Lee, offices in NYC and Boston. He is doing excellent work on my restoration. He offers a 40% discount to oral cancer survivor, still a significant expense, at least for me. I've made two visits, one more scheduled in September.

His connections and relationships to academia and industry keeps him at the forefront of treatment techniques and technologies. This is how he can offer his cancer survivor program.

Hi SPM,

I just came across your post from May. Did anyone get back to you? I am sad to hear what your Mom is going through (and by default, you). You asked very good questions. Have they staged her cancer yet? If they have said she needs a mandible removed it sounds advanced? I can’t answer any of your questions from a professional standpoint but there are others here who can. Try reposting your original post to the main forum page and you should get a better response. I can tell you that if bone is irradiated they don’t hold implants well (from recent research for myself). Chewing and eating normally will never be the same for most of us, but that will depend on what is done and how she heals.

The only advice I can give you is that it is ultimately your Mom’s choice. She might benefit from seeing a therapist to discuss things with (an outside person might help her see things on a less emotional level). If she doesn’t want the surgery, it can’t be forced. However she should be made aware of exactly what living out her life with her current condition will mean. Know that whatever she chooses is HER choice and not a reflection of your love for her or your effort on her part.

Heather

Sadly, from what I am currently experiencing, oral surgeons are not keen to place implants in mouths that have been irradiated. I thought the same (and was griping about the potential expense) but they now prefer to extract if the tooth is infected and NOT replace unless it is in the form of a bridge (which impacts the healthy remaining teeth). Root canals are still used to preserve teeth, however I have had a 4 yr old root canal fail which now requires extraction.

I’m a 10 year survivor. You would think by now some brilliant professional would have developed a way to identify bone that will survive implants, and which will not. Instead, those who treat you in the acute phase don’t worry if your teeth survive or if you will be able to chew properly. Their sole focus is eradicating the cancer and keeping you alive. It’s a crucial job and we are all definitely thankful for their efforts on our behalf. This is about what comes AFTER. Research (which should be done by prothedontosists I believe) seems to be lacking and there should be more concern about the level of long term effects and care as survivors are getting younger and younger. It should not be a situation that is written off as, “You survived - you are lucky.”. Often there is a lot more involved (as you all know). So we accept, we adjust our expectations, we endure and we survive. Some of us are no longer lucky enough to have teeth, or tongues, or hard or soft palates, or mandibles in which to set implants or wear dentures on top of…therefore not even having the luxury of experiencing food in a ‘normal’ way. I am heavily reminded of this every time I come to this forum for information and advice. I have nothing but awe and admiration for those who have travelled a deeper path and overcome what to me seems insurmountable.

Apologies for the rant. I just feel that our ongoing care should be equal to the technical discoveries that are occurring at the acute levels of treatment.

Heather

Hello Gamjagirl,

Welcome to OCF and I am so sorry to read of your father's cancer. You should be able to find tons of good info by searching on different key words under treatment. I went through surgery, somewhat similar to your father but simpler, and radiation about five years ago. Regarding radiation - eat as much as you can to keep your weight up. The first 2-3 weeks should be relatively normal regarding food flavors. But, once they change, it won't start to get better until a few weeks after your last dose of radiation due to the cumulative effect of the treatment. Get a vitamix (think discount is still available if purchased through our link) or similar to blend foods to make it easier to get calories. The list of foods that tasted normal or at least not terrible got really short for me - scrambled eggs, green beans, french toast, pancakes, vanilla pudding, vanilla ice cream, avocados, vanilla protein drinks, simple soups...but everyone seems different. You keep trying different stuff. I used to blend high calorie protein drinks with ice cream and avocados and whatever else was around. Best to track your calories and shoot for 2500 cal/day or whatever the doctor recommends. I had a hard time hitting that number every day and i focused hard on it. My starting radiation treatment weight was 160 and low a week or so after was 145. I am 5'11' so not much meat on me to start.

I also recommend keeping active such as walking, biking, light yoga, light exercise and making a schedule of daily touches with loved ones. It really helped my mood and kept me motivated. Journaling was powerful for me. I often got hard on myself wondering why I wasn't improving. I would back up in my journal and realize I had come a lot farther than I thought. Recovery from radiation is much slower than from surgery. I would see improvement every day or two after surgery. After radiation, it was multiple weeks to see it. Now, five years out, I have almost all flavors back. Some took 3-4 months to come back but others, the spicier stuff, took years. And, I still have be much lower on the spice scale than before. Best wishes for a smooth treatment and keep us updated.

Stay safe and keep the faith,
Nels

Hello everyone,
Ive joined this forum on behalf of 66 yo my father who was diagnosed with stage 4 floor of mouth cancer. He doesn’t speak fluent english but i wanted to join to ease both his and my mind by reading other people’s testimonies.
He went through a 12 hour surgery that consisted of removing a small part of his jaw bone and putting a titanium plate across the bottom for support. He also had about two third of his tongue removed and replaced with a graft from his left thigh muscle. He then had to have lymph nodes on either side of his neck removed and also his left thyroid removed (benign tumor in the thyroid).
It’s been almost 8 weeks post op and we are finally starting radiation today. The doctor did not mention chemotherapy being needed so i am assuming that only radiation is the plan as of now. He and I are quite anxious about starting radiation as we haven’t heard the best things. Very worried about the side effects that seem to last a very long time. Is there anything we should know or any helpful advice that we can keep in mind as we dive into the next 6 weeks of treatment? Would love to hear experiences, success stories, precautions, and any updates on post-radiation life.


thanks so much, you are all so incredibly strong and resilient,

Hello Danbert, steve1 and JamesD,

I find it hard sometimes to discern between survivor guilt, which I have recognized it, and living life to its fullest given my daily side effects since caner free from HPV p16 positive in the spring of 2024. Lots of radiation to cure the cancer however since that ended in August/2024 I have terrible side effects of a dry mouth or xeorstomia and absolutely no appetite. I am currently going daily for two hours for hyperbaric oxygen Rx after reading it was successful for a patient with the same cancer and side effects from the US and the Mayo Clinic. I am slowly regaining my saliva after just over 30 sessions and going for 50. In all this survival band "beating" cancer or it going into remission and rejoicing where does quality of life come in. To me it isn't just not dying that counts but what is your QUALITY of life after surviving it. Any thoughts.

I'm not new, formerly poster Ray1971 but unable to get into my account. So here I am...still kicking at 54!

I'm sure members have come and gone over the years--but hope everyone is doing well!

For those that are just going through these times, stay strong. I've been clean for 17 years.

Ray

New here and realizing I should have put my previous message in this forum column, so please forgive the redundancy:

Reaching out to say hello and share a little optimism.
In 2021, I was diagnosed with SCC stage 3. I had my entire oral tongue and part of my base tongue removed. I was on a feeding tube for a full year with limited speech and saliva, and aspiration challenges. I thought I would only be able to eat pureed foods for the rest of my life, and was seriously considering looking into disability because of my inability to verbally communicate effectively. It was bad. Almost 4 years later, I’m happy to say my speech has improved dramatically, I work and communicate full time, and I can now eat all foods with the aid of an assistive eating tool. The assistive eating tool allowed me to move food off of my tongue and towards my teeth for chewing and towards my throat for swallowing, which in turn caused what remaining tongue muscle I had left to become strong. Same for swallowing, the more I ate, the stronger my throat muscles became. By eating, I was basically exercising the tongue and throat muscles and keeping them from atrophy. I invented the tool so I could eat, and because I couldn't find anything out there for us. If you want more info, feel free to connect with me. There is hope-- we are resilient, and the body is wondrous.
Sending hugs to those who need them.
Angilee

Hello!
Reaching out to say hello and share a little optimism.
In 2021, I was diagnosed with SCC stage 3. I had my entire oral tongue and part of my base tongue removed. I was on a feeding tube for a full year with limited speech and saliva, and aspiration challenges. I thought I would only be able to eat pureed foods for the rest of my life, and was seriously considering looking into disability because of my inability to verbally communicate effectively. It was bad. Almost 4 years later, I’m happy to say my speech has improved dramatically, I work and communicate full time, and I can now eat all foods with the aid of an assistive eating tool. The assistive eating tool allowed me to move food off of my tongue and towards my teeth for chewing and towards my throat for swallowing, which in turn caused what remaining tongue muscle I had left to become strong. Same for swallowing, the more I ate, the stronger my throat muscles became. By eating, I was basically exercising the tongue and throat muscles and keeping them from atrophy. I invented the tool so I could eat, and because I couldn't find anything out there for us. If you want more info, feel free to connect with me. There is hope-- we are resilient, and the body is wondrous.
Sending hugs to those who need them.
Angilee