My (37F) husband (44M) is starting his 3rd week of treatment (Cistplatin and daily rads) tomorrow and has developed mouth sores since last Friday. He is swishing with the salt and baking soda water mixture, he's using helios, OTC pain medicine and has the magic mouth wash but hates the flavor and that it causes his whole mouth to be numb. He's struggling on whether to ask for some stronger pain meds or if there is anything else OTC that would help until it gets worse. Also, any recommendations of meals besides smoothies and shakes. He's still eating regular meals but has switched to more pasta than anything else and that isnt high in protein.. hes picky, like our 3 year old which makes it more difficult. As always, thanks for your support!

My husband (SCC tongue, 6 wks radiation ended mid-May) is getting them again. He also had a recent bout of thrush that took two rounds of fluconazole to get rid of. I know sores are common during and for several weeks after radiation, but this late?

Should we go back on baking soda rinses or mucositis mouthwash?

Thanks in advance!

ETA: On closer inspection it looks like thrush again. Will check in with clinic on Tuesday.

Hi, I’m a 43M. Was recently diagnosed with left tonsil SCC HPV+. 7 days ago I had my tonsillectomy and 22 lymph nodes removed. All went well and the scar is healing nicely. I do have very sensitive skin above the scar all the way up the jaw. Like painfully sensitive. No sign of redness, barely noticeable expected swelling. Just wondering if this is normal, has it happen to you? Thanks in advance!

This post is a bit long because my situation is complicated, but I hope you’ll bear with me. I’m sharing because I don't know anyone who would relate, and I could really use some support and kindness.

In May I had a fine-needle aspiration biopsy of a preauricular tumor in my left parotid salivary gland. The results said I “demonstrate neoplasm of uncertain malignant potential with findings of a basaloid neoplasm.” because the differential diagnosis included both benign and malignant entities (adenoid cystic carcinoma, basal cell adenocarcinoma, and pleomorphic adenoma).

The doctor gave me this diagnosis in the first week of June, right before my child began summer vacation. I was informed that I need to have a superficial parotidectomy with layered closure and possible sternocleidomastoid muscle flap. Due to the gland’s proximity to the facial nerve and other vital structures, this surgery carries the highest risk of facial nerve palsy. Even if the surgeon has perfect technique, facial nerve injury can occur for unknown reasons.

Another high-risk complication is Frey’s syndrome (gustatory sweating), which can significantly affect quality of life afterwards. Other risks include flap necrosis, salivary fistula, and contour deformities. Since risks are lower when the tumor is smaller, and the tumor will only continue to increase in size over time, my doctor advised me to have the surgery sooner rather than later.

The mention of “metachromatic stroma” in the pathology points toward this being adenoid cystic carcinoma, but my doctor emphasized that removal of the tumor is the only way to concretely diagnose if I have a malignant cancer.

As a single mother to one child, and also the manager of my mother’s finances and property (plus part-time caregiver to her), I told my doctor I needed time to prepare. He understood and advised that I have the surgery by November. I scheduled surgery for September 24th so my child could enjoy summer, get back into the school routine with aftercare (making it easier for my ex to work around his job schedule), and to take place after my mom’s 83rd birthday.

I now regret waiting. The tumor has increased in size, and moved closer to my earlobe. I am now experiencing balance issues, pressure on my left ear causing regular headaches, intermittent aches in my left temporomandibular joint (with one shooting pain episode while eating), intermittent tingling in my gums and face on the tumor side, and recent changes in taste perception, which have decreased my interest in eating. I have also had an episode of rapid eyelid twitching for about 10 minutes… but that could have been just due to stress.

Due to these changes, my doctor scheduled another MRI with contrast (in two weeks) so we can review the tumor changes before surgery.

Regardless of the MRI, I am extremely nervous about the surgery and about what my life will be like afterwards.

On top of all the stress about this tumor and pending surgery, I have already had skin cancer three times. Each time, my mother (who is narcissistic, anxious, and now showing early dementia) made my illness about herself. She sought pity and attention from others, portraying herself as the victim because “her daughter has cancer,” but she never offered me any compassion or support.

During my last surgery, she promised to at least be present for me, but she didn’t show up.

When I chose not to talk to her for a month and a half afterward (to focus on my healing from both the surgery and her behavior), she threatened to remove me from her will and then spun some story that manipulated my stepbrother into calling me a bitch (and worse). As a result, it has now been almost two years since my stepbrother and I have spoken.

Because of this history, in my current situation I have only told my mom that I am having surgery at the end of this month, rather than share any of the details and gravity of it. I suspect she thinks it’s skin cancer again. The truth is, I don’t have the energy to deal with her attention-seeking and oversharing right now. Unfortunately, I still have to interact with her because of my role managing her finances and care. That constant stress, combined with preparing for surgery, is wearing me down to my limits.

I am scared. Scared about the surgery, scared about possible complications afterwards, scared about what treatments I'll need if it is a malignant cancer, and scared about how I will hold things together for my child while also being responsible for my mom.

If anyone here has been through parotid surgery, or has faced the double weight of caring for yourself while also managing a difficult parent, I would be grateful for your experiences, coping tips, or just some encouragement.

The universe hates me.

Then I shit myself at the er trying to run down the hall to bathroom. Nurse is running behind me keeping gown closed and telling me to "Clench! You'll make it!" I didn’t make it.

Now I’m on day 6 in the hospital trying to get infection under control so I don’t have to have surgery and have to have a shit bag. At some points I just wish I would get sepsis and die. Fuck my life.😔

Hi everyone! For anyone diagnosed, were you previously vaccinated? Gardasil 4 for eg

Hello everyone. I am here to seek advice. My mom was diagnosed with head and neck cancer (squamous cell carcinoma). She had her surgery done, it was a free flap surgery where they removed the hard and soft palate and also few of her lymph nodes. It’s been a month since the surgery, and half of the flap has died off and she’s only left with the other half. There’s a hole that can be seen, which makes whatever she eats and drink come out of her nose.

This is irritating and we spoke to her surgeon and he said she has to go through a second surgery to fill that hole. My mom is scared because she already went through a lot and she doesn’t want to do it again. It requires for them to take some tissue from her forearm to fill that hole. It hurts to see her suffer like this, because the way she eats and speak has been compromised. I would like any advice on what I should do next. Any help is appreciated. Thank you.

IMPRESSION: 1. No hypermetabolic activity in the right tongue at the location of the previously seen lesion. There is no mild diffuse hypermetabolic activity in the left mid to posterior tongue. No obvious CT correlate and nonspecific. May represent muscular activity in the tongue versus posttreatment changes. Recommend direct observation. 2. A few cervical lymph nodes with mild hypermetabolic activity overall decreased compared to prior. No evidence of new nodal metastasis. 3. No evidence of distant metastases.

***

Husband had a PEG line inserted today. Next Tuesday, surgery to remove the tumor and lymph nodes, followed by surgery on Wednesday to reconstruct the tongue. Followup with oncologist - who is quite happy with how much improvement chemo brought - on 9/18.

Good news to be appreciated!

My father (52M) has been diagnosed with stage 4 (pT2N3b) oral cancer. He had undergone surgery (right marginal mandibulectomy, partial maxillectomy, neck dissection, free flap)

Margins were clear, but 2 lymph nodes were positive with ENE & PNI. Doctors suggest radiation + chemotherapy next

I’d like advice from people with similar experience:

• What worked well during/after treatment (nutrition, wound care, side effects, mental health)?
• Any new/alternative lines of treatment I should read about?
• Supplements or exercise that may support recovery/survival?
• Things you wish you had known earlier as a caregiver?
• How to best prepare for radiation side effects (especially oral issues like mucositis, swallowing, speech)?

Any guidance, resources, or personal experiences would mean a lot 🙏

My dad is two weeks post-chemoradiation for HPV+ squamous cell carcinoma of the throat and lymph nodes. He has been doing very poorly over the past two months. He cannot speak and hasn’t spoken in over a month, so we communicate by text. He hasn’t swallowed food in two months and is solely dependent on a PEG tube.

Despite repeated guidance from his medical team, he is not following instructions. He refuses to do mouth rinses, saying he “can’t,” and has ignored multiple reminders from our family. Instead, he is taking amoxicillin that was not prescribed to him. He is not being honest with his doctors.

To complicate matters further, he is seeing a naturopath and receiving mistletoe injections, which I believe are unsafe given his severely compromised immune system, and he has not disclosed this to his medical team either.

I am extremely frustrated and worried for his safety. I recently hid the antibiotics to protect him, but I don’t know what else I can do. I feel overwhelmed and unsure of the right steps to take. He is sleeping right now and I plan to speak to him this morning and let him know that I took the pills.

Ordeal started in January this year, SCC skin origin, metastatic head and neck. Otherwise "healthy", oldish (I get to start Medicare next month, goals?). H&N surgery neck flap/temple of head down to chest, under chin and out shoulder. 27 nodes removed, two stage II, two stage I. 31 RT 66gy. Chemo and immuno doesn't tip the scales either way so it was dropped out of treatment.

Got through all the surgeries and RT with pretty low side effects all things considered and 7 weeks out, was feeling really good, saw my doctor 2 days ago and everything looked great except my pancreas. Something is up and now causing anemia which may be it isn't functioning properly but this far out we aren't sure if it's RT related or possible cancer cells made it there and set up shop, getting scheduled for an MRI to see what's up.

Pancreatitis isn't unusual for me, 45 yrs ago a drunk driver hit me head on and took my spleen, part of my stomach and half my pancreas but I've been "unusually healthy" ever since (enough to still be case study for 1st yr residents to read and know, more goals?).

So I'm wondering...has anyone else had a side effect of pancreas or liver issues after RT? If you had any digestive issues at all, about how long did they come one after treatment and about how long did it last? I know it's a shot in the dark but just curious if anyone else has dealt with this before. TIA and hope everyone has a good Labor Day Weekend coming up! ☺️

Hey All... i wanted to share my news. Ive had 2 recurrances of hpv p16+ since 2022. Round 1 - base of tongue/tonsillectomy + cisplatin x2 of 3 and radiotherapy x 35. Round 2 - neck disection. Round 3 - pembrolizumab 3wkly for 2yrs planned. Every time its been contained in the lymph nodes and not spread.

I have had scan 2 from starting immunotherapy mid April. No trace of cancer!!! My PD-L1 score was 100. (Yes 100!). I was told my response should be good to treatment but overall my prognosis wasn't great and another recurrance was highly possible.

After 1 cycle i noticed an externally visible lymph node shrink. The first scan showed reduction from 5cm to 5mm for 2 tumours and 1 just a trace. Now its not even visible.

My consultant is mind blown with this response. In his many years hes only ever seen a trace left or its taken the full 2yrs to go.

Anyone else had any similar experiences with pembrolizumab? Or even recurrances like this?

We're continuing treatment for another 3mths, another scan and possibly stopping treatment... which scares me witless! If treatment stops I can't start again. Options are limited.

Grinning from ear to ear at the moment with a lingering dark cloud poking its nose in... and my long suffering partner has said he wants me back at work on Monday!

My father had his PEG tube replaced two days ago because of a dislodged balloon. The balloon had dislodged and was stretching his stomach and sitting in his stomach lining instead of in the stomach. Buried Bumper/Balloon syndrome. He went up a size for the balloon and we were discharged yesterday from the hospital.

Just now, he had a bowel movement and i guess was straining a little bit to get it out. When he came out he said his undergarments and pants got leakage all over them because his formula/liquid spewed out from the stoma of his G tube. Has anyone experienced this?? I emailed the nurse in his Head and Neck surgeons office with pictures and a videos just in case but wanted to see if anyone else has experience this? Is it because it’s early on and the stomach is still trying to contract around the new tube? I’m just worried some of the formula may have leaked outside the stomach into the cavity or something.

Hii, I'd like to ask if any of you had undergone External Beam Radiation Therapy (EBRT) and how was your Side effects? How bad was it? Did you have some neck disfigurements or fibrosis? Were you able to continue with your daily activities (eg. school, work), and more importantly, how did you deal, manage or prevent the side effects? How's your quality of life and are there still side effects post-radiation therapy?

Diet recommendations (accessible and realistic) and product recommendations to lessen the debilitating effects are both welcome!

Both personal experience and/or professional opinions are much appreciated!

Personal info: early 20s, female, student, Papillary thyroid CA unresponsive to 2x RAI

Thank you so much!

Hi everyone!

My dad got his second chemo this monday, during his first chemo he peed a lot, but this time around he didn't pee as much, and he says he's peeing less than normal. He also got the Ng tube installed and we're still figuring out the right doses and how the feedings work, and I think he's not getting enough water post-chemo. His feet look ever so slightly swollen, but it usually goes down if he raises them.

He didn't experience this the first time around and I'm having a hard time understanding if this could be a chemo side effect (and if it is, when should we be worried), or a potential Ng tube side effect. He has a radiation nurse appointment tomorrow so we're gonna bring it up to check if a doctor thinks it's anything bad, but I'm wondering if anyone had this side effect?

Does anybody have experience with fenbendazole for treating cancer or know anyone that does

I want to mention a new tool called EsoGuard for screening for cancer in the esophagus.    This is a quick procedure that is an alternative to going to a hospital, receiving anesthesia, and having an endoscopy. EsoGuard is five-minute procedure without sedation.   A sample is taken and undergoes DNA analysis.

The esophagus is a location where there can be precancer growths on the surface.   The prognosis greatly improves if these are detected early.

EsoGuard is not validated to detect HPV16 in the esophagus.   So, the focus here is HPV negative cancer.   Those who might seek this screening are those with a smoking history or chronic GERD.   They have also been using it with higher risk groups like firefighters.   This makes me think that those with exposure to burn pits might want to consider this.

A key issue is that insurance companies have been very slow to cover this FDA approved test.  Most seem to be waiting for Medicare coverage approval.   The company has a hearing in a couple of weeks that should eventually result in Medicare coverage.   

 https://www.esoguard.com/

Hi guys, 4+ months after the last chemoradiation session for tonsil cancer + neck lymph nodes. As many survivors with treatment to the neck, I developed a very stiff and sore neck. Trouble is, I do a lot of sports that are especially heavy on the neck (aerial hoop, floorwork, chair dance).

I just can’t give these up, these make my life so good and worthwhile and I look forward to my dance sessions for days… I became quite good over the years and it is part of my identity and something I’m proud of.

Any tips/recommendations? I do physiotherapy every few weeks but it seems to be a hit or miss (physiotherapists have an insane workload in this country). Throughout the day I try to actively rotate my neck. My partner massages my neck which gives a bit of short term relief, but not much.

Any insights or support are much appreciated (as always!). Much love to this community.

Hi folks! The mildly dreaded acne face rash has hit after my first dose of Cetuximab and Pembro. My team gave me clindamycin and told me to moisturize a ton, but both BUUUURN. Any tips or tricks you’ve all found?

I’ve tried aloe (big burn), cold water face washes, and lots of chapstick. The pain can get a little distracting particularly when speaking.

Still the same smart*ss attitude...just a bit quieter 🤣

Hi, just wanted to share to give some hope.

Its been 2 years since the removal of the tumor, ~21months since last round of chemo and radio.

Results are good, no signs of cancer. Stay strong everyone.

There was a data update released this morning for the Phase 2 study of Versamune with Keytruda for HPV16 Head and Neck Cancer. This was a study that included persons who had failed other treatments and had the cancer spread. It is important not to confuse this with a group who is early in the treatment process.

In June, they reported:

CPS ≥ 20 Median Overall Survival: 39.3 months
CPS 1-19 Median Overall Survival: 26.1 months

For the two groups combined: 30.0 months Median Overall Survival in patients with CPS ≥ 1

Today, they updated this to "The median overall survival (mOS) is 39.3 months in patients with CPS ≥ 1."

So, the big picture here is that these are much better results than any currently approved treatment. It is possible that these numbers continue to get better. A sizeable number of persons in this study are only about two years from the start of treatment.

(If these numbers are confusing, just know that many persons who get this drug are living a long time, when they likely had a few months to life without this drug.)

https://pdsbiotech.com/index.php/investors/news-center/press-releases/press-releases1/132-2025-news/1016-pds-biotech-announces-final-topline-survival-data-fromvers2025-08-25-053503

That is all.