Also, sorry for the link I know mods on forums don’t usually like them. But it’s just easier than explaining everything in a huge post.

I would be grateful for any respond

Hi everyone,
I’m not really sure how to start this, so I’ll just be honest.
I found out about my cancer far too late. Stage 4. By the time the diagnosis came, it had already spread, and a lot of the treatment options I read about were no longer on the table for me. I’m trying to stay realistic know the statistics, I’ve heard the words “palliative,” “advanced,” and “non-curative” more times than I ever wanted to. Still, even with all of that, I’m hoping I can at least buy myself some more time. Time to be with the people I love. Time to say the things I still want to say. Time to just exist a little longer.
Since hearing the diagnosis, I’ve been reading everything I can about stage 4 cancer treatment, trying to understand what’s possible, even if the chances are small. I came across an article that gave me a bit of hope or at least curiosity about some newer approaches:
stage 4 cancer treatment
They mention things like targeted therapies, immunotherapy combinations, and methods like dendritic cell treatment or TACE. I don’t know how much of it applies to my situation, or if it’s just the kind of hope the internet sometimes gives you, but it made me wonder whether anyone here has actually tried any of these treatments.
Since I’m still new to all of this, I wanted to ask the people who have been fighting cancer for years the ones who know the reality of it better than any article ever could.
Have any of you looked into these newer methods? Did any of them actually help, even a little? Or were they just false hope? I’m not expecting miracles I’ve accepted that but if there’s something that could help me stay here a bit longer, I’d like to understand what’s real and what isn’t.
Thank you for letting me share this. I’m still trying to process everything, and hearing from people who’ve walked this road longer than I have would mean a lot.

Hi everyone,
I’m Tobias, and I’m new here definitely not under the circumstances I ever imagined, but I’m really grateful this community exists.
Earlier this month I was diagnosed with stage IV oral squamous cell carcinoma. The tumor is along the floor of my mouth and has reached the base of my tongue, and there are lymph nodes involved as well. Things moved fast after the biopsy. I’ve already met with the head & neck oncology team, and because of the advanced stage, the plan is pretty aggressive: a larger resection, an extensive neck dissection, and then radiation combined with chemo afterward. Hearing all of that laid out still doesn’t feel fully real like they’re talking about someone else.
I’m in my late 30s, otherwise healthy, so this hit me out of nowhere. Some moments I’m calm and focused, and the next minute the fear just sneaks up again. I’m especially worried about speech, swallowing, and how life will look after treatment. If anyone here has gone through stage IV oral cancer, or anything similar, I’d really appreciate any advice or just hearing your experience.
Outside of cancer life, I’m a graphic designer. I love photography, long coffee walks, and messing around with old guitars. I’m based in Munich, and honestly the only thing helping me stay grounded right now is getting outside for fresh air whenever my mind starts spinning.
I’m here to learn from people who’ve already walked this road. Thank you for having me, and I’m looking forward to getting to know some of you.

I just got my peg tube a week ago...I spoke with the nutritionist and she "does not suggest a blended diet because it clogs the tube and you cant taste it anyway" I (Im at Cleveland Clinic)...I figured that I would start with the formula and then find myself a nutritionist that a more open mind.

I am not happy with this formula...I feel like I can taste it in my mouth all day long...and I am having trouble getting the four meals in a day...3 is about all I can stomach and that is adding up to around 1155 cal/day. I'm a bigger woman, what a weight loss plan (and btw, I feel lousy)

So, my questions are if I start blending, I found Brian's recipe (one of them). How many cc's do you take at each "meal" Is there more than one recipe and am I ok doing bolus feedings with them. I am pretty miserable at the moment...Each "meal" just regurgitates, and I have never had that problem with food before...thanks in advance

Hello Bad_Kitty,

Glad to hear the oxycodone did the trick for you and at least made it so you could get some solid rest.

Sorry to hear that the biopsies all found more cancer spots; on the upside they “found” what was there and can now tailor your treatment plan accordingly.

Ditto with the bacterium they found and the new antibiotic.

Sorry the PET scan lit something in your lungs and they are now doing a biopsy there. Here is hoping it’s just a bacterial colony or something.

I go back to the hospital next Wednesday myself to get another CT guided needle biopsy of my armpit lymph node. Last one was non-diagnostic.

Anywho here is hoping the new antibiotics eradicate all the infection, the oxycodone keeps working well without making you nauseous, your radiation damage keeps healing, the cancer dies, and your treatment plan works great and you tolerate it all increasingly well.

Sincerely,

CQ

I can actually taste things, I just cannot physically move them very well because the cancer/infection has taken over one half of my tongue. I am on the 3rd day of my new antibiotics, and as they ravage my intestines, I think they’re finally helping the pain in my mouth! I still have the pain in my neck.
The next step for me is a biopsy of my lung (stupid PET scan), and chemo. My goal through all of this is just to be able to eat a Chipotle burrito.

Thanks for responding! I was so desperate!
As it turns out, I already see a palliative doctor, and I had a zoom appointment with him just a few days after this post! I had completely forgotten about it because I could not focus on anything other than pain. I was in tears during the appointment, and could barely speak. He explained to me that different opioids can trigger the reflex to vomit differently. He put me on Oxycodone, and I was so desperate for relief that I tried it! It worked! I slept for 6 full hours! I have not thrown up once!
Those little pills really came in handy when I got the biopsy done! Unfortunately for me, all the samples came back positive for cancer. They also contained MULTIPLE strains of bacteria, for which I am on 2 new antibiotics. And the new antibiotics make me nauseous… 🫠

So, we have a date for the surgery, December 23. Please think positive thoughts for us!

Hello VCT,

Sorry about the delayed diagnoses in what is causing your sore throat.

The whole work up process is tiring, as they rule various things out.

Only advice I can offer, is just keep sticking with your follow ups until they can give a satisfactory answer, and hopefully a fix.

Squeaky wheel gets the grease.....just keep squeking, eventually hopefully someone will grease ya'

Best wishes,

R/
CQ

Back in September I had a brief flu-like viral infection, no ENT symptoms, just fever at night and chills.

Soon afterwards I have developed a sore throat that's been dragging now for eight weeks. I have some mucus in the throat and also some post-nasal drip. Have to clear my throat pretty often. Lymph nodes and thyroid are "normal", no lumps on the neck. Once in awhile I have a fleeting sensation of something stuck in my throat, always clears.

Saw a walk-in clinic doctor and two ENT specialists. Had Amoxicillin for ten days (did not help), then Amoxycillin and clav 875 mg for five or six days (did not help), was told by the ENT doctor #1 to switch to Clindamycin 300mg (taking it now for a second day). Also took Omeprazole 40 mg and tried to stick to a low-acidity diet (ENT doctor #2 thought it was GERD), it did not clear the throat either. (I never had acidic stomach, no heartburn).

Had two laryngoscopies, one regular, another one with video recording (Doctor #2). Told "looks like GERD", "no cancer", "no mass". Now she scheduled me for a video stroboscopy (of course I am worried).

I am not getting better and not getting worse. My throat is inflamed bilaterally. Pain is not that bad but quite annoying at this point . I have planned some travel for Christmas/New Year time now do not know what to do.

I smoked as a young man for 12 years, quit 34 years ago. A moderate drinker (5-8 drinks a week, usually wine). BP and cholesterol issues, taking meds, under control. An active hiker and jogger, retired recently.

I am new here. And it is my first forum. Would highly appreciate any advice you can give.

Hi Bad Kitty,

Welcome to OCF and I am so sorry to hear of your cancer and ongoing problems. As Chris noted, I had surgery and radiation about 5 years ago for stage 4 on my tongue. I had to learn to be very patient with radiation recovery. For reference, it took over a year before most flavors felt close to normal. Some, like sweets, I got back in a few weeks/months. Spices and complex flavors took much much longer.

As for swelling, infections, and pain, keep staying on top of it and communicating with your doctors. Find anything you can process best you can and focus on jamming calories. Mixing with a blender or Vitamix (think OCF gets a discount) can help. If you can not do liquids, which yours has gotten that bad, you should stay in close touch with your doctors and consider a PEG tube or nasal feeding tube. I had a nasal feeding tube after surgery. It was a pain but it worked.

I was fortunate and only had minor infections during radiation treatment and was able to keep processing food even though most of it tasted like dirt. I tracked my calories trying to hit at least 2000/day. I would give myself a small treat (favorite walk, favorite snack, etc) if I hit my numbers.

Please keep us up to date. Stay safe and keep the faith. Better days are ahead and we are with you.

Nels

My dad had his two mandiblectomies surgeries at Boston's Mass Eye and Ear. The surgeons who did his work teach at Harvard Medical School. Highly recommend if you want a second opinion. Dad's first one had an antibiotic resistant infection in the hardware, and then they discovered his cancer came back when they removed the hardware and scraped all the gunk off the bone. So, he had scapular one the second time. Now, he has to have his hardware removed because it's coming through his skin, but apparently that happens when you beat cancer in the long run. I wish you luck and that you find success in your treatments and know that you're not alone.

Hang in there Bad_Kitty,

I can't offer any advice, I have not been there, I can only express sympathy for your described suffering, as I have not had radiation. Hopefully Nels will be on here soon and see this as I know he has been down your path. I have not had radiation.

The infections complicate things even more, sorry you are experiencing that.

Regarding the PET and delaying the biopsy until after the PET, they may want to have it done so they can plan out biopsy locations.

Hopefully some of the stalwart veterans who have been through similar ringers as you are in now may have some tips.

Can you do ice chips or something like that? Or maybe consult with a pain management specialist? Or a palliative care specialist? (I just rechecked, and they don't just do terminal patients like my Dad, they do help people who are suffering immensly with curable diseases too).

My Dad's Palliative Care physician was an oncologist for many decades and finished out his career in palliative medicine, and he was a God send.

I hope you find some things that work for you and you can start to notice some improvements.

Sincerely,

Chris

just had my 2nd jaw plate surgery. first one broke? this one feels the same. hasnt felt normal since before original surgery in Jan.

Well the CT guided Fine Needle and Core Needle Biopsies of my Level 2 Right Axillary lymph node that was PET FDG avid (SUV 5.4 I think) was done.

I thought it went great. Cytotechnologist came down and looked at the FNA aspiration slides in near real time (with the introducer needle still in me, and still laying on the CT table).

Turns out the FNA needle got mostly all blood, some lymph tissue, but insufficient for characterization.

Core needle got all fibrous fatty tissue, not lymph tissue, also a non-starter for pathology.

So a bit of a set back, with more waiting. Its something like a 90% chance the PET avid lymph node is just reactive in my situation (maybe 99%), but would be nice to check that box off definitively and move on one way or another.

I reached back out to my regular ENT Oncology team to see if they need to re-order another attempt, or if Interventional Radiology would automatically call me to reschedule a second attempt.

I said I'd be happy for a 2nd attempt or an excisional biopsy if a surgeon thinks it's a good candidate all things considered.

Will update once there is some more progress/decisions.

This is my first post here, although I have been lurking since I was diagnosed. I am almost 3 months out from 35 rad treatments for SCC HPV+ of my tongue. I did not have chemo, as I was stage 1. Now, I am MISERABLE! I am in so much more pain now than I was during treatment. I am losing my mind, and was hoping you guys could give me some advice or direction.
About a month ago, my tongue started developing new ulcers and hurting more. My ear started hurting, and after a visit with the ENT he said it was referred pain from my tongue. By the end of that week my neck was swollen and painful to the touch, I couldn’t eat, I couldn’t talk, and it hurt just to swallow my own spit. Long story short, I was told I had a staph infection in my neck. I was on Augmentin for 17 days. My neck swelling reduced but the tongue ulcers grew together, and some kind of white covering has been taking over the area. The ENT says it’s a scab, and that scabs look very different in your mouth, but is still concerned by the way it is growing. They said I need a biopsy, but plan to wait until after my PET scan results. I am now on Doxycycline for another 10 days.
My scan is in 2 days, but the reading of results will be the next week. I don’t think I can make it that long!! I am in so much pain!! I don’t understand why we need to wait an extra week to do a biopsy. I was told not to take Advil anymore because it can create ulcers, but Advil was the only thing helping my inflammation! Tylenol and Tramadol don’t do anything to touch the pain. The other opioids make me vomit. I have been using so much viscous lidocaine and magic mouthwash that I’ve also been throwing up from swallowing so much. And of course the vomit hurts my mouth more. I also just feel really unwell, and my neck hurts. I use all my strength to just take my dog outside, and then I just lay in bed. I feel like I have been going to all of my different doctors ( oncologist, radiation oncologist, ENT, a second ENT, the hospital, urgent care) and nobody is actually helping me.
Has anyone had this kind of issue after treatment?? I don’t know what to do anymore, and I’m at the end of my rope. I feel so desperate for help. Does anyone have any advice? I don’t think I can make it one more week like this.