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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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,

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