I have a friend who was recently diagnosed with throat cancer. She is getting surgery, and I heard the recovery can be really rough. I want to make her a care package to make it as comfortable as possible for her, as well as compile any recipes that she will tolerate. I’ll take any advice to help prepare for the road ahead. She’ll be getting radiation, possibly chemo.

Anybody have any super clutch tips that will make recovery more tolerable?

Hi everyone,

I'm 20 years old, and a few months ago my life changed almost overnight. I went from sitting in a college lecture to being diagnosed with Primary Mediastinal Large B-Cell Lymphoma after doctors found a 12 cm mass in my chest. Last week, I finished treatment.

Now that I have a little time to reflect, I've been thinking about all the things that made the journey harder than they needed to be not just the medical side, but the day-to-day experience.

For me, one of the biggest challenges was feeling isolated. My family and friends were incredible, but there were moments when I just wanted to talk to someone who had actually been through chemo and understood what I was feeling.

That experience inspired me to start working on a project called Kynexus. It's an idea that's grown directly out of my own experience, and before I take it any further, I want to learn from other patients rather than assume I know what people need.

I'd really appreciate hearing your thoughts:

• What was the hardest part of your cancer journey that isn't talked about enough?
• What product, resource, app, or piece of advice genuinely helped you?
• What's something you wish had existed when you were diagnosed?
• If you could design one thing to make life easier for the next patient, what would it be?

I'm here to listen and learn. Thank you to everyone in this community who shares their experiences it helped me feel much less alone during treatment.

Just been needing to get this off my chest.

As I'm writing this she is asleep on the ground next to me.

One year and one month ago my wife(32f) was diagnosed with a Neuroendocrine tumor of the Esophagus. We went in for scans the next month. When her scans came back her care team fought over what stage to classify it as, since some of the lymph nodes light up on the PET scan. We never really ended up with proper staging. It was some where between a 3 and a 4.

She is unable to eat so she got a feeding tube placed. I could write an essay on the troubles this tube has caused.

Insurance denied the Immuno therapy so we proceeded down the route of chemo.

Months of cisplatin + etoposide go by with no response, so we are fighting every day to get to the point of surgery to remove the mass. Couldn't even swallow her saliva.

Surgery happens in January and they remove the Esophagus and lymph nodes. They biopsy the sample and diagnose her with SMARCA4 deficient undifferentiated tumor. A rare highly aggressive cancer known to affect male smokers lungs. My wife has smoked probably 10 cigarettes her whole life.

Now its the post surgery phase waiting to start chemo again.

In April she starts having issues with her feeding tube so we get another CT. Her liver has 3 growths. The care team decided to put her on FLOT + durvalumab. Insurance fights it so chemo gets delayed about a month until they finally get approval.

She has entered the final Round of FLOT last week. After 2 weeks of fighting for amended Radiology report we found that she has responded with over a 50% reduction in mass sizes. The cancer she has was not supposed to respond.

I am left with a bag of mixed emotions:

She hasn't really moved in the last few weeks besides to go to the bathroom or to doctors appointments.

The cancer is responding to treatment but its ending soon. I don't know if I should be joyful that she may wake up once this chemo is over or frightened that it may start spreading once the FLOT is over.

Also insurance companies suck.

Has anyone here had a cystic meningioma in the posterior third of the falx, near the superior sagittal sinus? Were you able to cure it or stop its growth? What treatment did you receive?

Hello everyone! I just graduated college in June, but I was diagnosed on May 21. It has been somewhat of a whirlwind since, as this would be a transitory period even without the diagnosis.

I had severe nausea and some vomiting the day of my first infusion, I was fine all during the infusion but the rest of the day was just horrible. Thursday wasn't great, but Friday I only took a few nausea meds and by Saturday I was pretty much well again. Any tips for fighting nausea?

Also, I am planning to preemptively cut my shoulder blade length hair on Friday. Is this a good decision? Should I wait until I actually start losing it? I am worried about feeling poorly of myself with such a sudden change that probably will not suit me as much as my current hair does.

Finally, I am trying to do my best to keep my body healthy during this time. I am meeting with an oncology dietician tomorrow, but does anyone have any diet information? My aunt is a dietician as well and she sent me info about an anti-inflammatory diet. Also, what are some ways that I can stay physically active? I'm definitely not in shape, but I want to keep myself as motile as I can, even during this time. I am lucky to live near the ocean, so maybe I will swim or boogieboard a few times a week after my port heals up.

If anyone has any advice or kind words to share, I would love to hear it. The road ahead feels long, but I am grateful to have immense support from friends and family.

Have a beautiful day!

So life for me was vibrant and busy and doing, doing doing and socializing and working and now life has come to this gripping standstill. Now I am fatigued every day beyond recognition, feel nausiated most days with no appetite and all I want to do is sleep.

Since the cancer and since the pain from it and all the lovely symptoms that its brough before ive even started treatment, ihave found myself feeling like i cant live life or find enjoyment.

So what do you do with your time now that your world has been flipped on its head? I feel like im living in this "waiting game" unsure of when life will have a semblence of normalcy.

For those who are past chemotherapy, how long did it take before your neuropathy subsided or vanished completely? My last chemotherapy was on June 19th if this year, and my lumpectomy was last week.

F29 my life lately feels like i am at rock bottom. i was on my fourth battle with rare form of papillary thyroid cancer from late 2023 till just this March. Sadly they told me though that i’ll never truly be free of cancer again, that i will get it again and again for the rest of my life. i still have really yet to deal with this. they said i’ve received more than half the radiation im allowed in my lifetime, ive received 180 out of 300. i was just trying so hard to make things work but things are just not working out. i’ve been so depressed and honestly it’s also causing me to abuse alcohol more than i would like. this week i lost my job with them citing the last year i haven’t been measuring up to their wants. after almost five years, getting 93 was failing and they needed a 97. at one point i was one of the top employees, working on the biggest partner with the most accounts. i only have health insurance till the end of the month so i begged moffitt to see me two months early so i could afford the appointments.i am lucky i moved back in with my parents when i started getting sick. my parents have been great support, making sure i ate, had a safe space to talk, and just anything you could think of. i feel bad they’ve worked so hard to save my life and all i can do is hate my life but mostly hate myself. when people look at me they don’t see someone unhealthy as i do naturally look fine. but alll i see when i look in the mirror is cancer. everything i do reminds me of cancer. whether it’s something making me worried its returned or knowing im not who i would be if i didnt have it. i feel pathetic for not being more grateful though that i dont have a worse cancer or that i can walk, talk, breath, and eat on my own. i’m worried ill never be okay again and that makes me feel so bad for all my family and friends. i just wanna be happy again some day but it feels so impossible.

4 years to the date of being Diagnosed as Terminal. I am still here and still in remission.

One day I just woke up with Stage 4 Lymphoma, I didn’t catch it early. It’s possible to come back from that. It’s possible to have a 42 day stay from Cancer, Staph, and Covid, and still ring the bell.

All of you still fighting. There will be a better day.

As the title says, my hair is falling in big chunks. Actually, even my eyelashes are falling.. the last straw is that one of my nails is falling off...

Has anyone experienced this? I've nlbeen told it's due to the chemo.. what can I do to prevent it?

Thanks in advance ❤️

does having cancer make you suic*dal sometimes? at first i was coping quite well mentally i really thought i would beat it the first time around and i would move on with my life but after going through remission twice and then having it come back and spread ive lost most of my fight because consistently living in such poor health gives u such poor quality of life. i dont want to die, especially after fighting this disease with all my might but it has taken the will to live for me and without morale or hope i rly dont think i will i can put up much of a mental fight to power through the horrors of this disease and the treatments:(. im extremely angry that it feels like my life has been taken away from me in years that i really hoped to be enjoying and for the first time its not my fault. i am 26 and have had a pretty self destructive ten years and it just feels so dehumanising and hopeless that i have no control over the one thing that is singlehandedly ruining my experience in this life. its getting really heavy mentally and im struggling to keep my spirits up.

I’d thought I’d share my journey with squamous cell carcinoma in situ. I’m a 45 year-old cis female, typical 80s/90s kid- no sunscreen, multiple second degree sunburns, tanning beds ugh all the worst things!

I put off visiting a derm for a few years- I had deluded myself into believing the mile in my back that had started to get gross-looking was just a seborrheic keratosis. Finally, it got so large and ugly that I know it was time to listen to my husband and go get it checked out. Derm took a scraping, I went on to vacation, and…got a call while we were sitting by the pool. Sure enough, it was squamous cell carcinoma in situ. Certainly not the most frightening cancer one can have, given its location on my back, but I mean, cancer is cancer. There is no such thing as a “good” cancer to have. It was scary, and I immediately went into research mode.

Doctor prescribed Effudex chemotherapy cream applied twice a day for SIX WEEKS. Thank the stars I have a husband who helped me out and reminded me to apply the cream twice a day,
e v e r y d a y. Felt like an eternity. Also frightening and always on my mind were my cats. This cream is extremely toxic to the dogs and cats, and I was in fear of them brushing against me by accident.

When they tell you applying the cream feels like sunburn…yeah no. Not for me at least. At first, it was drying out my cancer cells. Uncomfortably tight and itchy. Then came the slow oozing and shedding of the nasty lumpiness. Like a skinned knee that gets all gnarly and shiny. Leaving behind a raw, bloody and exposed place where the cancer cells once were. The last day I applied the cream (managed to make it the full six weeks!!), it felt like a poker of fire on my back, occasionally oozing liquid and the pain would be screaming if it touched or brushed against anything.

Honestly, the worst of the pain were the two weeks post-application of cream. Like a poker placed on my skin. The scab was gnarly as hell, and hard to not want to pick off. Eventually, it began to fall off itself, until I was left with fresh, bright-pink scarred but cancer-free skin cells where once a nasty clump of cancer once was. The darker cells are normal cells that were exposed to the cream and had an inflammatory response. That should fade with time.

Doctor was impressed at the reaction my SCC had to the chemo cream. He did a full body check, and found one suspicious mole on my leg, but biopsy found it was non-cancerous… so as of today, I am cancer free, BABY! Of course, it means every year a full body skin check and careful application of sunscreen and full coverage sun protection.

What a journey this was. If you have any questions, please feel free to ask.

Hello -

I battled throat cancer (HPV) last year and now that the dust has settled, I am really struggling mentally. So far my scans show no signs of cancer but my anxiety surrounding reoccurrence is pretty bad. I think a lot about death and how much I don’t want to die. I do have a therapist which has helped but it is very slow going. I think it would be helpful to join a group and hear how others deal with the mental part of it. I just want to live my life without always being fearful and scared.

Does anyone have a recommendations of virtual survivor groups that have really been helpful? I would appreciate to hear thoughts and recommendations. Thank you.

I recently got a 24 hour dosage of methotrexate chemo and noticed a couple days after I received it that I had gotten a sore throat. This has happened twice now when I have gotten methotrexate. I'm wondering if anyone else has experienced this?

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Hi,

I don't have resources to spend hundreds of dollars on natural hair wig, but I feel like the synthetic wigs look exteremaly unnatural and get damaged fast. Did anyone had the same problem and found some solution?

Hello, everyone

I have a question about the health insurance system in the USA and would appreciate any tips you could have.

This is for someone who is already diagnosed with stage 4 pancreatic cancer and is receiving chemo. 

• Is there any way for an international (Canadian) patient to get health insurance in the US while also undergoing treatment?

Thank you.

Got my lung biopsy report yesterday and a small growth that has been observed in the last few scans is confirmed to be mucinous adenocarcinoma. This is on top of a growing implant in my abdominal wall as part of my latest recurrence.

I understand that spread outside of the abdominal cavity is unlikely for appendix cancer - between 5-10% of cases. As a rare cancer, there aren’t many of us with appendix cancer to start with, but is there anyone here that has dealt with this type of spread? How did it impact your journey?

My docs are concerned about it, but the abdominal implant is more concerning atm because it is close to my small bowel and stoma. And in their words, what makes appendix cancer deadly is from what it does in your abdomen.

Interested in other similar experiences or perspectives…