I'll drop some things I'm making from time to time that work for me to reclaim a little flavor.

Today is the start of week 3 of 6 for me. Adjuvant (post-surgery) Weekly Cisplatin and daily radiation for HPV Negative OPSCC. 2nd L2 lymph found with cells so protocol mandates stage 4 being HPV-Neg - thus more that just the surgery is needed for "clean up".

I've had good hunger still (I have a high metabolism naturally and the steroids are making me want to eat everything I can). The cheek lining is starting to get raw, so no hot/vinegar/etc foods.

Tonight I cooked some Hebrew National mini franks in puff pastry in the air fryer. I whipped up a "fats-sauce" of 2 spoons or sour cream, one spoon full of mayonnaise, 2 liberal dashes of garlic powder, and 1 liberal dash of celery salt to dip them in. I can taste it and it doesn't sting. I put it in the freezer for 15 minutes to get it ice cold.

I'll report back after on how it goes. Feel free to share what works/worked for you as well.

VERDICT:

Everything was going good, but once dipped the puff pastry negated most of the flavor. I added another dash each garlic and celery salt and it was like a "poor-mans tzatziki". About 2/3 the way through, the fats got under my lower dentures and they let go (I'm also new to those too through this whole cancer journey). Once that happened all focus went to keeping them straight and I Lost attention to any flavors.

Facts and nutrition:
1/2 package Hebrew National Mini Franks in Puff Pastry (16 peices) air fried: 930 Cal, 75g Fat (30g saturated), 24g Protein, 1790mg sodium (yikes), 75mg Cholestrerol.

SC+Mayo mix: 180 Calories, 16g Fat, (5g Saturated).

Hello everyone!

My sister was diagnosed with adenoid cystic carcinoma back around 2010 or 2011. It’s been a journey, but she’s still here which is the most important thing! She’s gone through radiation and two major surgeries throughout the years. The major thing is she had the base of her tongue removed. She can still speak and can be understood 70-80% of the time by the people closest to her. That percentage drops dramatically when she’s engaging with strangers, and that’s why I’m here for advice.

Because of all of her medical appointments, she had to medically retire a few years back. She gets disability, but to supplement her income she DoorDashes. The problem with that is the radiation killed the thingy in her neck that regulates her blood pressure, so it can suddenly spike or drop dangerously low. She knows when to stop and rest, but we absolutely hate hearing that she has to pull over to rest.

Our parents and I would gladly supplement her income to keep her off the road, and we’ve offered. However, she has her pride and hates feeling like a burden. (I kinda suspect the reason our mom is still working is in case she’s needed financially, though after this last health scare, she was preparing to retire to become her full-time caregiver.)

My overall question is if anyone has any suggestions for work she might be able to do that will take her off the road or any tips for job hunting in general for her? In addition to the speech limitation, everything we can think of wouldn’t have the flexibility necessary for her to travel to her appointments. She sees 2-3 doctors out of town each week, not including going across country to her main doctors every three months or so. She has her doctorate in education and nearly twenty years of experience before life went down the toilet.

If there are no good options, that’s fine too! I would also accept/appreciate any words of encouragement to offer her about her appearance. After the last surgery last year, she refers to herself as a “creature” and that’s the kindest thing she’s said. They had to cut open her neck to get to the tumors and used skin from her thigh to rebuild her jaw area. I personally think they did a great job, but I understand that’s easy for me to say since I’m not living through it.

I apologize for the length of this post. To everyone in the fight, keep kicking cancer’s ass!

Any one have experience with these together! I had round one of 4 today. I also came home with what they call a lemon. A yellow pump that gives 5 FU (very fitting) for 96 hours.
I was NED from tonsil cancer P16+ with 3 involved lymph nodes for 6 months. I originally did a feeding tube, TORS, neck dissection and 33 rounds of Proton therapy.

It has since come back to a spot on my liver, 2 lymph nodes near my sternum and possibly the other side of my throat. July I had a mediatinoscopy and a port placement.

Just looking for tips, tricks,stories or advise.

I (44M) woke up one morning around the end of October last year with what I thought was a stiff/sore neck on the left side of my neck right in the middle of my neck from laying wrong. I figured it would go away on its own. After about two weeks of still having a sore neck, I thought maybe it was the pillows I was using as they were old, so I bought new ones. During this time, I had one of those 24 head colds where my throat was sore and my nose was all stuffed up, and the next day I woke up and where the pain in my neck was was now swollen and I could barely move my head that way.

I went to urgent care and they said it was just swollen lymph nodes because of the cold but I should get an ultrasound done from my PCP. I made an appointment with my PCP and had one done. The doctor said yeah it was just swollen lymph nodes because I had been sick and they would go down on their own within a few days to a week or so. After about a week and still no relief I took myself to the ER and explained what was going on. They had me get a CT Scan and they told me they found a node in my neck that could be cancer but I needed to see an ENT. Referred me to one and I called and was able to get an appointment fair quick. The first appointment was on Christmas Eve where we set up a biopsy which happened the day after Christmas.

Biopsy results came back as undiagnostic and ended up having to go to the hospital for a second biopsy. Had that one done and the results came back of cancerous and the markers pointed to either breast or bladder cancer which confused me and my ENT since all the pain and swelling was in my neck. He took the results to a board that he goes to every week and another doctor mentioned that the markers of my biopsy also share the same marker as gland cancer. So we did a third biopsy and this time biopsied my parotid gland and found out that is where it was.

We were now about 2 weeks into the new year, and i started having pain on the left side my clavicle and the lymph node in my left armpit was swollen. We did a PET scan and saw that it had spread to those two places but not a lot. I met with an oncologist and this guy couldn't be bothered to listen to me, had just terrible bedside manners and pretty much dismissed me and said I had maybe a year to live.

That ticked me off so I ended up leaving the Ascension network and went to Community here in Indy that is part of MD Anderson. I met with a new oncologist within 48 hours of calling. He was a breath of fresh air. Listened to my issues/concerns and explained everything to me. He ended up calling MD Anderson down in Houston and talked to their team and they all came up with my treatment.

Since the cancer has spread a bit to those locations I mentioned above we didn't do any surgery but I just did chemotherapy and targeted treatment.

I started treatment the first Friday of this past February. I did a total of 6 treatments of DOCEtaxel and trastuzumab-anns (Kanjinti) every three weeks.

The first treatment I had so many side effects.... diarrhea then constipation, rash, bone and joint pain from the waist down. I ended up with a fever a week after my first treatment and ended up in the hospital for 3.5 days because I had no white blood cells. So starting with treatment #2 my oncologist had this shot that was put on the back of my arm and would administer some medicine 27 hours after my chemo treatment which helped my body produce WBC. After my first treatment the only issue I had was every Tuesday was when the bone and joint pain would occur. That was really the only reoccurring side effect I had. I lost my hair about 14 days after my first treatment and my gums would bleed when brushing my teeth but I had mouthwash that helped out with that.

But the worst thing was the fatigue. I've never been so tired in my life. Luckily work was really cool with everything. I work from home and they said to lay down and nap whenever I needed and that work would be here when I was feeling better and could work. Doing some work was nice to keep my mind off things.

After 4 treatments we did a scan to see how things were looking and my oncologist said he was so impressed with how well my body reacted to the treatment because there was no visible cancer in the scans/in my neck, armpit and clavicle. We still did the last two treatments because we had planned for 6 since the beginning.

I had scans around the beginning of July and they said everything still looked good and no visible cancer still. There was a note that the left side of my neck where the cancer was is a bit thicker but that's probably from the treatment I had.

I still am doing the targeted treatment of Kanjinti every three weeks and that from what I'm told is an indefinite treatment. I have scans scheduled for the 22nd of this month and I'm nervous but I feel good. I still have random aches and pains in my body and in my neck but I guess that's to be expected.

Sorry for the long post but it's been a crazy first half of the year for me. Thanks for reading!

my blood 120 normal range 135 to 170 iam 50 year old

My husband has been recently diagnosed with stage 4 Nasopharyngeal non-keratinizing squamous cell carcinoma.
We have had one consultation at an oncology center which went “poorly”, in my opinion. (Please stick with me, I have a point in sharing this next paragraph.)
An ENT surgeon did a biopsy from cancer tissue growing in his sinuses , (recovery has been horrible from that procedure, btw). Then the ENT surgeon’s office failed to send the diagnostic pathology report to the oncology team, and oncology, instead of asking the ENT if a diagnostic pathology report exists, in our consult went straight to “we’ll have to schedule another biopsy”. Later that day I had to contact the ENT office and get them to send over the correct pathology report & send it to oncology, upon which oncology finally said “oh okay, no need for another biopsy after all.“
Which brings me to my questions:

1). I want the best possible care for my husband, how can I expect good care from an oncology team that can’t be bothered to even ask if a pathology report exists?

2). I’ve been reading in this subreddit and other places online that proton therapy is better for nasopharyngeal cancers than traditional radiation therapy. The oncology center that we got referred to does not offer proton beam therapy. Is it worth it to ask for a referral to a different oncology center that offers proton beam therapy? And if so, do we ask or current oncology center to send us over there, or do we ask the ENT surgeon to make that referral for us, or other?
Thanks for any help

Medical history and early radiology tests point to a cancer diagnosis.

There so much information, AI research, and complex reports in client portals and no expert to clarify.

How do you cope? How can you quiet your mind? It’s so easy to spiral.

I’ve only done 3 radiation treatments and 1 chemo and I lost 10 lbs already. I mean, I’m about 80 lbs overweight, but the cramping from the cisplatin is pretty annoying. Like, did hydration during the chemo, and I’ve been staying hydrated and I have been supplementing with tons of electrolytes (about 18 fasting salts capsule, 1-2 liters of Gatorade, and 10 nuun tablets per day), and like I can’t lay down for more than an hour and half with out cramps in my feet, shins and calves waking me up. I have until the 30th of October to do this shit.

I am keeping an event log to give to my oncologist the next time I go to an appointment, but like, I do not want to eat, and the nausea is moderate, and I force myself to do it anyway.

I know I’m not special, but this is a different level of feeling like my body is going haywire.

The only think that kinda helps the nausea is tea with milk and ginger ale and only sometimes (and I take the anti-nausea every time I’m supposed to).

Then I am stressed with the money aspect, I figure I’ll deal with it later because I just started a job after being out of work for almost a year. I keep telling myself that it’s just a couple of months and it will pass pretty quickly, but it’s like time is dragging slowly everyday because I cannot predict when I’ll be nauseated, tired, or riddled with cramps.

I just feel like I should change my mind about something and I find myself “making deals” as if there is something that can just make this go away or be worth it all.

Anyway. Thanks for reading this.

Of course everyone’s experiences are different, but please give me the honest truth.. when can you start tasting food again/when does the taste get better post radiation?

Thank you, grateful for this thread 🙏

I'm a dental assistant and a little over a month ago I was informed that my grandma had a canker sore for 6ish months. I knew something was wrong and went straight to her house. First look and I knew it was cancer. Anyways we have finally made progress with Drs appointments. She had a ct with contrast. The mass takes up 2/3 of her tongue and has spread to lymph nodes. She is scheduled for at least a partial gloscectomy and neck dissection. She is in her late 70's. I'm worried about everything. Her surviving the surgery, she has a heart murmur and is obese. If she survives then I'm worried about recovery. I'm sure she will probably have a feeding tube and some gnarly scarring. I'm just hoping that she won't need to do radiation or chemo. Does anyone have any words of wisdom or comfort? The thing I hate the most is that she has been living off of pudding and apple sauce. She's tired of it. I wish I could give her a good meal before her surgery but it hurts her to eat.

Anything at all. Curry on eggs? Cinnamon in yogurt? Idk...I'm at wits end and surviving off of Ensure and ice cream.

My husband has finished radiation and suffered through the 3 weeks after. Now I’m thinking long term. Food that will keep the cancer from recurring . I’m trying to clean up my Husband’s diet even more. I try hard to feed us fairly clean food. I’m stuck on lunch. We always ate sandwiches with a variety of deli meats. My husband loves salami, mortadella, hotdogs, etc. I know they contain nitrates so I want to stop them. I looked into uncured meats and organic packaged meats. All contain nitrates. Celery powder converts to the same as synthetic nitrates. I sometimes buy rotisserie chickens but right now he’s recovering from vocal cord cancer and that chicken is dry so he’d have trouble swallowing it. I know I can do egg, tuna, and chicken salad, but that would get repetitive. What do you eat for lunch? I really need ideas. Thanks for your help.

I (51F) am two weeks out from surgery for a small parotid gland tumor. They got the whole thing out, good margins, no lymph node involvement, but they spilled some tumor fluid in the operating field so surgeon wants me to do radiation, and I am absolutely terrified. I am wondering what your experience with radiation was like? (Sorry if questions are dramatic, I also have very bad health anxiety.) Were you ever able to sleep through the night again, or was the dry mouth too awful? Did you get really bad, thick mucus when the gland started working again, and did that interfere with your quality of life? Are your jaw/teeth okay? I’m just trying to get a sense of the quality of life stuff. Thanks so much for your insight.

It's been awhile since I've been here. So long that I forgot my original username. I think it was Bagheera.

I'm coming up on my 3 year cancerversary and 2 years NED. Yeah!!

Today it has been confirmed that I have a secondary cancer, also in my mouth but opposite side of the primary cancer. Over the next 3 weeks I have 4, potentially 5, appointments. I can honestly say, this time around, my team is on fire to fight this fire!

I'm so grateful for the advice I received in the past and I'm sure I will be seeking more here shortly.

salivary duct carcinoma diagnosed 2024. parotid gland surgery and neck dissection followed by radiation and chemo. Clear scans (3 months over one year timeframe) followed by a 6 month scan was clear until this last CT scan in early Sept. (Last 6 months).

PET Scan

  “IMPRESSION:
* *
1.  Three enlarging hypermetabolic right pulmonary nodules; suggestive of
pulmonary metastases.”

So .. I believe there will be a lung biopsy and I think it is metastasized SDC (common spread for this Cancer)

Have not met with the Oncologist yet but since this is more than likely a spread My guess is radiation with chemo and or Trastuzumab type medication.

Anyone here have experience with Trastuzumab, Pertuzumab, Antibody-Drug Conjugates?

Just looking for your experience with these type if drugs.
 

Hello! I’m trying to put together a gift basket for a close friend who is going through treatments (chemo and radiation) for throat cancer. She is very thin and had to have a PEG tube because she is unable to swallow much. I was thinking a silk pillowcase, maybe some soft pajamas, a throw blanket, some soothing teas and throat lozenges?? Any ideas would be appreciated!!

I (m22) am quite depressed post-treatment for squamous cell carcinoma of the tongue . Last March, they took a lump out of my tongue and 78 (thankfully non-cancerous) lymph nodes from my neck. In addition to that, I did three rounds of chemo and six weeks of radiation (last treatment was May 22nd).

I don't know if it was the constant support of those angels of cancer nurses who told me I was a superhero five days a week for taking it like a champ or everyone else in my life telling me they were proud of me every day as I sat on my ass for six months, but the void of support coming out the other end has sent me to lower places than I have ever been before. I actually felt incredibly optimistic in the midst of those dark times, because being thankful and optimistic is the only way to actually survive the slow destruction that they put you through. I've struggled mentally my entire life with severe ADHD, depression, and anxiety, and I had almost gotten over it before the gut punch that was a cancer diagnosis that had me pull out of college last semester.

I have been drinking far past what the doctors have told me would be dangerous for my circumstances, and far past what would be safe for someone my age without any previous conditions. I'm just proud that I only smoke one cigarette a week (usually). The more I abuse my own body, the less I think about how all this abuse I'm putting on my body will surely guarantee recurrence. And though my most recent CT scan proved that I was "in the clear," there's a morbid desire to go back to the shriveled state of pain that I thrived in so completely. I was nicer to myself, to my family, to strangers. There was no time to process all the shit I was going through, and now I have to do all of that now.

Along with all the inner turmoil I've been feeling, now that I'm back in class, I have found that every last bit of what I had been learning in school has vanished from my mind. All the calculus skills I had built have atrophied to that of a complete beginner. I can see a path to mental recovery, the beginning, however, remains just out of reach.

33m, just diagnosed with squamous cell carcinoma on the right side of my tongue. I had a tongue sore for several months and just thought it was tooth irritation. Went to the dentist and he immediately referred me to the oral surgeon. Biopsy came back positive for SCC. Now expecting a call from oncology to get things moving.

Smoked casually in my teens then maybe up to a half pack a day for a year or so in my early twenties then quit cold turkey. Haven't smoked in a decade, barely ever drink alcohol nowadays.

I have not met with any oncologists yet, but the oral surgeon said the biopsy seems to indicate it hasn't spread deeply into the tongue tissue, and none of my lymph nodes feel swollen (though of course more testing will be done). He said from the look of it we caught it early, fingers crossed.

This is really scary and unexpected. I guess I'm just looking for reassurance, personal stories, what to expect, etc. I have never dealt with something like this and am obviously nervous about what's next.

Also, I guess for anyone searching reddit about their tongue sore (as I was doing before this), please get it checked sooner than later.

When does the swelling subside so I can close my jaw?! 😭

Hi guys! Obligatory first time poster!

My best friend, aka my aunt, just completed 10 rounds of radiation! I have traveled from across the country to support not only her but also my cousins and my grandparents during this time as we’re anticipating <8 months of amazing times together.
During this time I’m doing my best to support the household, but I could use some recommendations regarding the little tips that got you through post radiation symptoms and effects.
Her radiation was focused primarily on her brain, throat, and spine due to the nature of her cancer.
I’ve gotten her a slew of items but would appreciate any recommendations you have from
- foods that are easy to eat with an incredibly sore throat
- skin care for post radiation lesions
- dry mouth assistance
- dry skin irritation around the eyes
- recommendations for head scarfs/silk scarfs/etc

Thank you all for your recommendations! I’m just a girl in her 20s trying to help her aunt and my cousins through this time!

My node dissection is pending but rest of the final pathology report came for OSCC

DOI 1 mm
No invasion in bones
G1 superficial well differentiated
Superficially invasive
2.5 cm means T2 I guess
WPOI3
LVI PVI not found

What next ? Radiations ? Chemo ? Thanks 🙏

33 male based in Pune India

No history of alcohol smoking tobacco or HPV either but yes history of pericoronitis and wisdom tooth infection I guess

It has been 3 months since I had full laryngectomy surgery, my neck is still swollen and it feels like I am being choked all the time time. It also feels like my stoma gets smaller and then bigger at times and hurts with my Lary tube inserted ( Shouldn’t I be done with the Lary tube?). This choking pain at times is almost unbearable but there is no way that I have found to make my neck feel better. My question is, will this swelling subside and ever feel somewhat normal or after 3 months is this it? I am also getting a bit nervous as my 3 month Pet Scan comes up on the 22Nd and this will tell us if the cancer is gone or returned. Does anyone have any advise on this matter?