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.

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.

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.

My husband’s friend has metastatic prostate cancer. He was living with his dad and then he left his dad’s house due to many reasons that I don’t know if I really understand. He then moved in with his mom and lived with her for a couple months but she said she couldn’t handle it and kicked him out. He’s now living with us for the past 5 months. He has gotten worse since living with us and is more fatigued. For the first month he lived with us he refused to shower and my husband had to talk with him since he did smell and was sitting on our furniture and it is very unhygienic. He was worried about getting his ports wet even though his nurse said that the bandages are waterproof and I even bought larger waterproof bandages to go over it. He finally agreed to shower once a week right before the nurse comes in case it gets wet. However, he has lost his medicaid and the nurse doesn’t come anymore. He hasn’t showered for the past 2 months. I went in to his room to wash his sheets when he was gone and was going to do his laundry but noticed no dirty clothes. I thought maybe his brother did his laundry when we were out of town even though that would have been a first and highly unlikely. I then went in a few days later and still no dirty clothes and I looked in his drawer and everything was folded exact same as before. So now he’s going on 3 weeks of not changing his clothes (including underwear). When he uses the bathroom there are brown spots on the seat. I told my husband he needs to talk to him. I know he’s very depressed. He has a brother that visits him maybe once a month and a son that has visited him twice since he’s been living with us so for 5 months saw him twice. I told him about a free support group but doesn’t seem interested and I talked to his brother and he tried to get him to see a therapist which he refuses as well. Anyone else been in a similar situation or has been very depressed like this while going through cancer? He’s only 48 years old. I’m very grossed out and frustrated that his family isn’t helping him. My husband has known him most of his life but they grew apart and haven’t hung out in years. He has 2 brothers but they both live in apartments with a roommate. His son is 23 and he lives in a studio apartment. I feel like they need to take him in and help him through this. I know I’m venting and if you’ve reached this far thanks for reading.

Also to add his has had 17 chemo treatments and is almost in remission but his number is still I think @5 so they have to continue with chemo till it reaches 0.

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 ❤️

Hey y’all! So I’ve had cancer since I was a teenager, going on 10 years now. It’s obviously expensive, but I’ve been making do with my parent’s help. I was recently laid off back in March and have had no luck finding a new job. My dad just broke the news that he was also diagnosed with cancer and is having surgery in a couple weeks. They obviously can’t afford to help me with my cancer treatments and him with his. I’m already out of a job and with this new diagnosis, my mom left her job to take care of my dad full-time. If anyone has any remote positions that they know of, please let me know. I have a bachelor of science and would eventually like to go back to school for therapy or medicine, but it’s just not in the cards for now. I recently started a TikTok and I’m trying to get enough followers on there to hopefully start making some money, but now with my dad’s diagnosis, it’s even more urgent to grow it quickly.
So if you have a TikTok and can follow me, I would greatly appreciate it!
My account is Mediocre Mess 🩷 Thank you!

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.

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.

My husband’s friend has metastatic prostate cancer. He was living with his dad and then he left his dad’s house due to many reasons that I don’t know if I really understand. He then moved in with his mom and lived with her for a couple months but she said she couldn’t handle it and kicked him out. He’s now living with us for the past 5 months. He has gotten worse since living with us and is more fatigued. For the first month he lived with us he refused to shower and my husband had to talk with him since he did smell and was sitting on our furniture and it is very unhygienic. He was worried about getting his ports wet even though his nurse said that the bandages are waterproof and I even bought larger waterproof bandages to go over it. He finally agreed to shower once a week right before the nurse comes in case it gets wet. However, he has lost his medicaid and the nurse doesn’t come anymore. He hasn’t showered for the past 2 months. I went in to his room to wash his sheets when he was gone and was going to do his laundry but noticed no dirty clothes. I thought maybe his brother did his laundry when we were out of town even though that would have been a first and highly unlikely. I then went in a few days later and still no dirty clothes and I looked in his drawer and everything was folded exact same as before. So now he’s going on 3 weeks of not changing his clothes (including underwear). When he uses the bathroom there are brown spots on the seat. I told my husband he needs to talk to him. I know he’s very depressed. He has a brother that visits him maybe once a month and a son that has visited him twice since he’s been living with us so for 5 months saw him twice. I told him about a free support group but doesn’t seem interested and I talked to his brother and he tried to get him to see a therapist which he refuses as well. Anyone else been in a similar situation or has been very depressed like this while going through cancer? He’s only 48 years old. I’m very grossed out and frustrated that his family isn’t helping him. My husband has known him most of his life but they grew apart and haven’t hung out in years. He has 2 brothers but they both live in apartments with a roommate. His son is 23 and he lives in a studio apartment. I feel like they need to take him in and help him through this. I know I’m venting and if you’ve reached this far thanks for reading.

Also to add his has had 17 chemo treatments and is almost in remission but his number is still I think @5 so they have to continue with chemo till it reaches 0.

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.

Just got a call today that I have a T2 Hyperintense Small Tissue Mass in the Distal Vastus Medialis.

I’m obviously freaking out. My online research keeps leading me to soft tissue sarcoma. What are the chances it’s NOT sarcoma?

I’ve had knee pain for 4-5 years at this point. My initial mri has it measuring at 1.4 x 0.9 x 1.5 cm. Would sarcoma grow larger than this by now?

I have a follow up mri with and without contrast but looking for further information until then

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?

​

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?

This week I got the news that I have a 5cm by 5.5 cm mass on my clavicle bone. What started as a little tiny pea sized lump on my collar bone 20 weeks ago with no pain and then waking up one day feeling like i slept on my shoulder funny and listening to people tell me "its just a blocked lymph node and homeopathy cream and equiscope therapy and vibration plate and creams and lymphatic drainage massage, has somehow turned into "you have a large aggressive mass on your clavicle bone plus 4 other enlarged lymph nodes on the right side of my body plus excruciating pain that feels like someone is tearing my shoulder off and never goes away and the burning sensation and pulsing sensation.. and somehow CT with contrast and MRI has turned into a Doctors appointment that said "well.. you got cancer.. and its aggressive and we need to do a staging study now oh and its in your brain..you have a miningioma which was causing your seizures this past year and memory loss issues but bad news... the cancer in your clavicle bone is eating your bones alive and look like they have this moth eaten premeative diffuse pattern causing your bone in your clavicle to disintegrate completely..

Honestly, i didnt believe it. Sure i see the bump on my clavicle and assumed what everyone else did.. but didnt understsnd the shoulder pain or the pain spreasing across my sternum and ribs.. didnt know pain could feel that bad. I thought i was being proactive and conservative in only taking Tylenol #1s with codeine for the pain and when it didnt touch the pain and led to me crying and screaming every morning i got up and every evening.. i asked for Tylenol #3s even though the Doctor offered me Dilaudid. The Tylenol 3s have barely touched the pain and im lucky if i go 3 hours with marginally feeling better and no position really feels great for sleeping and it doesnt matter how much sleep i get, im still tired.

Here i am.. sitting here..waiting till Friday for my MRI with contrast again before the bone biopsy and tissue biopsy and im pinching myself.. I think i have even convinced myself that its likely just some kind of infectiom that got into my clavicle bone(how.. i dont know) because who just wakes up suddenly, randomly one day and has cancer???

20 weeks ago I had life.. i had been 6 months free of seizures(we dont even know how or why since the tumor is still there and just discovered it) I was looking for a job because i was finally healthy enough to go back to work again.. and now this.

So my question after reading a lot of your stories is.. "when does it actually hit you? When does it actually feel real? When do you realize this is now your life and your in a war for your health and your life? When do you come to terms with it?"

Because right now..in spite of the excruciating pain and exhaustion..i have no other symptoms besides this bump and what they tell me on scans and for some reason i feel like im still trying to convince myself that what they say is true..that i have cancer. Im only 40. I was healthy. I had come off my second 40 day water fast which is supposed to heal the body.. how am i sick?

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…

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.

You can read the repost, I think. At 6 weeks into a new relationship I found out I have cancer. At 3 months I just found out it is very bad. Should I back down the relationship to friends?

I'm currently in my 4th month of at home hospice. A nurse visits once a week. I have no care/assistance other than that once a week visit. I have 2 sons, one outside of state and one less than 15 minutes away. They are both in their 40s and i will be 74 soon. The one that is out of state calls nightly to see how my day was including my activity level, pain level, nutritional intake etc.

Last week I had a down turn during which I was very ill and in excruciating pain and thought that I was finally seeing the end. My hospice nurse was able to resolve the issue and today I'm finally doing better.

The other one (the youngest) hasn't even texted to ask how I am in more than a week. Today i texted my younger son and said sarcastically "how comforting it is to have a son nearby that checks on me." But I was feeling very hurt and angry because I have always been there for him emotionally and financially though I am poor and struggling. Was I wrong to point out that he doesn't make time for me? He works 40 hrs, has two young sons and a partner.

So, I shared a few times about my story with a rare neuroendocrine tumor that originated in my nasal sinus ans spread to the lymph nodes in my neck some time back. In February was my 3-month post scans, including a full body pet, and I spoke with radiology, my ENT doctor and was told that the scans were being taken to the tumor board to review and they came back to me with the news that there was no evidence of amy cancer. Towards the end of May, I started to have a tight/tingly feeling towards the upper right part of my back that would come and go and didn't think much of it because I was back to being pretty active at this point. A week later I brought it up at a radiology followup and was told they weren't concerned because the type of cancer I had doesn't just go to the back and that they suspect it's just a soft tissue thing from me being an active guy. Fast forward about 2 weeks, I took a trip with mt family that required 7 hours of driving and when we reached our destination, I had weird tingling/warming sensations in my side and messaged my care team and was told that my PET scans looked good and there's nothing suspicious they saw so give it a week or two. So, in-between this week to 2 weeks, I had my 6 Month post scans of the region where the cancer was originally and was told everything looked phenomenal but I was still dealing with the back issue but now to a degree where I was getting stabbing sensations to my ribs and in pain that's keeping me from sleeping and needing to pace around the house just to try and escape the pain, so the ENT doctor took this more serious and put in for me to get a CT done of my spine. The CT came back stating there was a 6mm sclerotic lesion that was non pet avid and unchanged from my pet scan in February (I was never told that there were any spots or anything showed up like that in February, and I certainly would think that if a whole tumor board reviewed my Pet scan in February that after such a rare and aggressive cancer would they not want to maybe keep an eye on a spot on my spine?). Anyways, I was referred to orthopedics neurosurgery after this and was ordered a thoracic MRI and put on Flexeril. The flexeril did nothing to help so I reached out to oncology because at this point the intuition just starts to kick in that more is probably wrong and they made an appointment for me to come in and see them. The oncology team listened to everything and told me they had very little concern that this was cancer related and it sounds like a nerve/disc issue, prescribed me Prednisone (which started to help once I took it) and then also told me to call radiology and see if they could move my MRI up since it was 2 weeks out and told me that if they couldn't, that they would go in and change my MRI to a stat order for me to get the MRI sooner (this was a Friday, so by the time I was able to get back intouch with oncology they didn't change it to stat until the following Monday and then there were a few days to wait for the MRI. The prednisone was helping and I felt like oncology was right and had it figured out that it was a less sinister thing going on, but I ended up not being able to hold off even to the stat appointment made for the MRI because once I titrated down on the Prednisone, I woke up a few days and had tingling sensation and felt numb from my torso down to my knees and had heaviness and lack of coordination in my left leg when trying to walk. This led me straight to ER and after many scans and being admitted to the hospital, here I am day 1 post op for posterior T6-T7, T7-T8 laminectomies for epidural mass resection from what they believe is connected with the original cancer and was a missed distant mestasis somehow. Could this have been prevented if they showed more concern that even back in February my PET showed spots on my spine? Like, i'm absolutely baffled here. There was a cancerous mass pushing directly on my spinal cord and I had been leaking spinal fluid. Thank God it didn't spread to my spinal cord, they did scans of my brain, abdomen and chest and they're saying no cancer is anywhere expect a few spits lighting up as cancer cells on my thoracic spine and the small bit of remaining mass left after the ressection. They can't call the treatment curative now because of the metastasis but they said the goal is absolutely eradicating what is left with targeted radiology (5-10 sessions) and my oncology team figuring out something systemic with chemo to hit this again and any additional immunotherapy trials to prevent this from coming back. I'm at the point where I don't know if I should even have my trust in this team anymore but then I worry now also because I can't even start treatment for a few weeks because I have to heal from this major surgery while this cancer just remains there and I also worry about going outside of this hospital for second opinions and that delaying things. I also don't know if this is something where I should seek Legal council if this is malpractice because I feel like they really dropped the ball on my scans and should have brought that to my attention back in February and paid attention to that with foolpw-up scans to be sure there was no cancer because I feel like the spot showing up alone whether or not it lit up should raise an eyebrow at the least, no? I literally have thought i've been in a remission for just a few months, got back tl work, re-enrolled in my school program to finish it, got everything going again with my wife and kids woth our life just to now be in this situation right now. I'm so distraught, confused but in no way am giving up. I knlw this is a ton to read but there was no concise way to word this. Anyone that takes the time to read this and has any advice that could truly help me out here, God bless you and thank you so much!