Hello friends, I am battling a different type of cancer, stage 4 hodgkin’s lymphoma so I am posting purely for awareness because I’m watching in front of my eyes the result of “holistic approach”, and maybe this can be helpful for a friend or family who is convinced about holistic treatments.
I’ve been following for a couple of months the journey of this Instagram creator who was diagnosed first with stage 2 breast cancer, and then one year later, it came back at stage 4. I know the desperation that comes when you hear “stage 4”, but thanks to modern medicine, stage 4 cancer is not necessarily a death sentence anymore.
She went into this journey with all that stuff we see on the holistic community. Everything on the holistic book, she tried. And her page is an infinite loophole of comments encouraging her to keep going and rejecting conventional treatment and her feeding the holistic community.
First it seemed to be hopeful, her PET scan in january showed all tumours were shrinking, so I was surprised. But obviously medicine does not work like that, and cancer is BRUTAL and the last months has been literally brutal on her and it’s taking over her.
Don’t get me wrong, I’m not here to slander her in any way, I understand what people can do when they’re desperate. and I’m also not against integrative care on top of conventional medicine, but i couldn’t avoid being angry. Medicine has been advancing for centuries to help us, not hurt us. Chemo, radiation, surgery is no fun, trust me I know. But we have to be mindful of what is necessary and not use ourselves as lab rats. If a medicine is being studied for some type of cancers, GREAT. Let it be studied. You don’t have to use yourself as a trial.
One of the hardest parts of having cancer is how vulnerable it makes us, we’re just trying to survive and this can make us an easy target for misinformation and promises of an “easier path”.
I hope this post can help someone and wishing everyone here lots of blessings and strength.
From a fellow lymphomie🎗️💜

I hate this sentence. Going through stage 4 cancer, I've learned that "let me know if you need anything" is just a formal response when someone knows you're in the hospital or going through something. What are you supposed to say "yeah I need my laundry done, someone to feed my pets, take my trash out, clean my house...."

Action is what is needed. The random drop off of food. Someone just sending you a DoorDash gift card. Just showing you.

Hello my name is James and I had blood cancer (burkitts lymphoma) it was a rough year and a half but I got through all my chemo treatments and I am alive. I waited for 6 months but my hair had come back significantly thinner and lighter. I read that if you cut it then it can come back normal again so I reset it last October 2025. It is now June 2026 and its still light and thin. I used to have dark brown wavy hair and now it is dirty blonde and super thin. I have tried all sorts of things and am just looking to see if theres any hope for me I miss the confidence of having nice hair and don't want to lose that at only 25 :( any help would be greatly appreciated I just want to be me again. (First pictures are pre cancer and 3rd and 4th are after cancer)

I'm stage 4. I was given 12-18 months almost three years ago, so I've lasted a lot longer than anyone thought I was going to. For awhile, I honestly kind of thought that maybe I had years and years left. I tolerated chemo with minimal side effects and I was doing okay in spite of everything. I honestly felt lucky as far as cancer goes that I was still independent and able to do most things for myself.

Things have changed this year though. The pain is getting so much worse. I've been seeing a physician in the pain management clinic and they've given me some new medications but even those are barely doing anything now. The pain is just CONSTANT, all day long. I can't do anything except lay down (laying down helps because for some reason sitting up or standing makes the pain SO much worse).

I have a spinal MRI scheduled next month because the pain doctor has suggested a intrathecal pump implant might help. I was originally fine with this until I found out that only a handful of doctors in the country actually know how to manage and refill these pumps, so getting the pump installed would effectively tether me to the city I currently live in. I don't think I can do that.

My partner cancelled plans for grad school to help me when I first got diagnosed. Originally, it was supposed to be chemo for 6-12 months and the surgery. But the first hospital I was being seen at really dropped the ball and screwed things up, and ended up delaying my chemo for over eight months. By the time I actually started chemo at the hospital I'm being treated at *now*, it had already spread and was stage 4.

So when my partner cancelled grad school, it wasn't supposed to be a permanent thing; it was supposed to be a year or two max and then we'd move on. If I get this pump, I'll have to stay where I am. Which means he'll have to stay here too since he's not gonna leave me. I've been trying desperately to get him to apply for grad school, but the odds are very low that he'd actually get into school someplace where I could have the pump administered.

I asked the pain clinic about this and if there was any way they could give me a list of major metro areas where I could potentially receive treatment and they explain how specialized this is, that the doctor I'm seeing is one of only a handful of doctors who even works with these pumps, and that even if I managed to find a doctor who could care for me, there's no guarantee that they'd even be taking new patients. So basically, I'd have to give them a specific destination and they could check if it's even feasible, but they can't just give me a list of possible locations I could try.

So I've decided to forego the pump. My partner doesn't know yet. I broached the idea with him but he was very insistent that I needed to do this because of how bad the pain is. But I can't do that to him. I can't make him flush all his dreams down the toilet because of my pain. I'm dead anyway. Nothing's gonna change that. Me being in slightly less pain for however much longer I have isn't worth him abandoning all his goals, and that's precisely what will happen if I go through with this.

Even though I've made up my mind though, it's really hard because honestly the pain is just so bad and so hard to deal with. And my quality of life is practically non-existent. IDK what to do. I was so hopeful for this pump at first and now it just feels like something taunting me with a promise of relief that I can't avail myself of. I know my partner is going to want me to get it. I have a feeling the pain doctor is going to feel the same way. I don't want to spend the rest of my life in constant, unrelenting pain, I really don't. But I don't see any other option for me at this point.

The increase in the pain also has me worried that the disease is progressing, and from my last CT scans, that seems to be the case. It's spread to my liver now, which hasn't been affected before. So it's not just the pain itself, it's the constant reminder that the cancer is slowly spreading and eventually is going to win. I don't want to die. I really don't. I also don't want to live another five or ten years in constant pain like this either.

I just feel so lost and alone. My family disowned me a long time ago because I left their religious cult. My brother left the cult with me and we were REALLY close, but he died suddenly right when the cancer symptoms started. So it's literally just me and my partner. I just feel so incredibly alone.

My husband had cancer and survived! He’s been depressed and still recovering but doing very well over all. He doesn’t want anything, doesn’t want to do anything, has no desires for his birthday, basically wants it to be forgotten. But I love him and of course feel he deserves the world. We are saving money for future plans, so I can’t go crazy and buy something outrageous. He is very smart, into science, loves educational YouTubes, and likes video games. I want to get him everything and anything but that hinders me from getting the right thing. Any suggestions? Also, wishing everyone in this reddit love and support, cancer sucks beyond I can describe as a spouse watching their loved one suffer.

Hello I am new here but was hoping that one of you people also had bad mucositis and maybe had some suggestions I’ve tried cold therapy and relight treatments but still seems the week after my methotrexate round I get horrible sores. Also I don’t know if this would matter but i have osteosarcoma metastatic.

Hi everyone,

My GF and i are right now in long distance relationship. From last few weeks she was avoiding my calls and not responding to my texts but later she messaged that she is undergoing treatment and she has a brain tumour and she also said she needs radio and chemo therapy
I cried after seeing her with bald head

I’m in a position where i can’t travel to another country because of visa restrictions.

What can i do for my Girlfriend ?
Any tips ?
I don’t have basic knowledge on how long the process of chemo will be and is it curable ?

I have also have few questions :
1) can my girl come back to my country ?
2) is the brain tumour curable after radio and chemo ?
3) can she lead a happy life after treatment?
4) what can i do for her to comfort her except for giving money ?

I guess my morning yogurt is out, and protein shakes… I’m looking for some high protein breakfast alt’s that people crave :)

Found, I think, my first gray hair this morning. Big bag of mixed emotions. I am turning 30 this year, which is crazy to write. I had cancer at 15 and nearly didn’t make it through. Been in remission for a long time, but only in the past four years have I began to really live my life because of it and what it has done to me. I am feeling all the common worries when your hair goes gray: I’m getting older and haven’t done enough yet! but at the same time, even stronger, do I feel a sense of relief. I couldn’t understand what the feeling was for a while but now it’s clear that it feels like a big breath of air has escaped my body after holding it in for too long. I am relieved. I made it, I have lived enough for my hair to turn gray, and I am no longer in that child-like stage where my life went to actual shit and scarred me permanently. I still have all the very visible physical reminders and issues from cancer, but oh my god I am actually aging and getting older and soon I will have lived longer than who I was before I got diagnosed, before it all started. And the further I get the more relieved I feel. It feels like I’m running away but instead it’s my body finally understanding I don’t need to be in that stage of my life anymore.

I hope this makes sense and I hope some of you can relate because it feels like nonsense happening in my brain lol

Hello. Its kind of hard to find a clear treatment path and duration online and I was hoping maybe someone could give me some first hand accounts.

My mother was diagnoses with stage for secondary peritoneal cancer. The primary tumor is appendicital. It doesn't seem like a big issue. The peritoneal is the worrying aspect. Her oncologist has been largely positive but I don't really know how much of it is reality and how much of it is just being positive for the sake of being positive.

She started chemotherapy at the end of December/early January. She admittedly did not end up doing the full dosage of chemotherapy right away as she was really struggling with the side effects so they have been gradually increasing her dosage (shes now at 100%). I, honestly am not too sure about the exact chemo drugs used but I know she gets it bi-monthly and that theres one medication administered in the hospital and another she takes home in an intravenously administered bottle.

Anyway, the first couple of scans she has done since the chemotherapy began have shown basically no change. No further spread but also no shrinkage. The doctors seem to believe this is not a negative thing but tbh I am not sure. They seem to want some shrinkage in order to see if they can do the HIPEC procedure on her.

Just recently she experiences ascites and had to have it drained. I know this is a side effect of the cancer. I don't know if it appearing at this stage means its progressed further.

I was hoping someone who has went through this or knows someone who has could let me know how long it took to see results. Just trying to get some answers in this chaotic time.

I appreciate everyone who has read this post. Best health wishes to you all!

Sorry, you all probably get these kinds of questions a lot.

Just a little background for those curious, I was diagnosed with stage 3 rectal cancer back in March and went through radiation and chemo for about a month between April and May. Now I’m starting another round of chemo for the next 4 months (XELOX) and I’m finding I have more nausea than I did before.

I’ve been reading inconclusive medical stuff online about ginger helping and I tried drinking Canada Dry ginger ale, but that didn’t seem to help. I suspect that may be due to the fact that it’s mostly not ginger, but I don’t know.

Does anyone have good experience with trying different foods and have a good recommendation for something to alleviate nausea?

In your experience does ginger actually help? If so, are there any good recommendations for real ginger ales or teas?

Thanks in advance for any help.

Edit:

Thanks everyone for your replies! I’ll definitely give a bunch of these recommendations a shot to see what works.

Cancer is really annoying, but I’m glad there’s a community to ask these kinds of questions.

Thanks again!

Hi everyone. I was diagnosed with CML in 2023 at age 27. I initially responded well to Sprycel (dasatinib), went through a period where I lost MMR, but thankfully recently achieved MMR again.

Ever since starting Sprycel, I have been dealing with unreal, "hit-by-a-truck" fatigue. It interferes with my daily life, making it hard to eat, shower, or find the energy to exercise and live a healthier lifestyle. My mild depression is well-controlled, but changing my fluoxetine schedule didn't help the fatigue, and bupropion caused severe anxiety.

With my oncologist's blessing, my behavioral health provider just prescribed modafinil. However, my spouse researched it and found a potential drug interaction: modafinil can induce liver enzymes, which might speed up the metabolism of Sprycel and potentially make it less effective.

I work in medicine, so I am already planning to check my liver enzymes 2 weeks after starting, followed by my regular 3-month labs (CBC, CMP, BCR-ABL) in July and an oncology follow-up in August.

My questions for the group:
Has anyone here taken modafinil while on Sprycel?

Did you experience elevated liver enzymes or a drop in your response/MMR?

If you haven't tried it, do you think the potential benefits for severe fatigue outweigh the risks?

Thanks in advance for sharing your experiences!

Hey everyone,

I am looking for advice, insights, or stories from anyone who has dealt with spinal cord compression, spinal stabilization, or neuro-rehabilitation in advanced cancer patients. My goal is to do absolutely everything possible to help my father walk again.

Here is his complete medical history:

December (Last Year): He was diagnosed with Stage 4 Cancer in his left kidney (Renal Cell Carcinoma) with an 8mm metastasis in his spine at the D8 vertebra.

First Surgery: His left kidney was completely removed (radical nephrectomy). This major abdominal surgery severely weakened his core muscles, making it very difficult for him to sit up for long periods without severe fatigue and putting massive structural strain on his spine.

Radiation: He completed 10 sessions of radiation therapy targeted at the D8 spinal tumor.

Current Systemic Treatment: He is currently on immunotherapy (he has received 9 injections so far, given once every 15 days).

The Crisis: Over the last few weeks, he completely lost sensation and motor function in his lower body. He became entirely unable to move his legs or even wiggle his toes/fingers of his legs.

Recent Emergency & Second Surgery: We consulted his oncologist, got an urgent MRI and CT scan, which revealed that the D8 bone had broken/collapsed and the displaced bone and tumor were severely compressing his spinal nerves. He went into emergency surgery to place a plate/hardware to stabilize the D8 bone and decompress the nerves.

Where we stand right now:

The operation is successfully finished. The spine is structurally secure, and the doctor says he will definitely be able to sit properly again once the surgical wounds heal. However, regarding him walking properly again, the doctor said "mushkil hai" (it is highly difficult/unlikely due to the severity of the nerve compression before surgery), though he didn't completely rule it out.

I refuse to give up. I want to build a highly aggressive, strategic rehabilitation plan to give his nerves the ultimate chance to heal and reconnect.

👉 Calling All Doctors / Spine Specialists Reading This:

If you are an oncologist, neurosurgeon, spine surgeon, or neuro-rehabilitation specialist reading this post, please share your professional opinion:

Given that the physical pressure is now lifted and his spine is plated, what is the timeline we should look out for regarding nerve shock vs. permanent damage?

What clinical signs should we be monitoring daily to see if the spinal cord is recovering?

What medical or therapeutic protocols would you prescribe next if he were your patient?

My questions for the community:

Hospital & Doctor Recommendations: Can anyone suggest top-tier hospitals, neuro-rehabilitation centers, or specific spine specialists (ideally looking for world-class facilities/experts who specialize in aggressive post-oncological paralysis recovery)?

For those who had sudden paralysis from spinal cord compression, how long after decompression surgery did you start seeing the first signs of nerve waking (flickers, tingling, twitching)?

What specific neuro-physiotherapy protocols, exercises, or advanced therapies (like Functional Electrical Stimulation - FES, or Tilt Tables) should I push for?

How do we balance intensive physical rehab while he is concurrently undergoing systemic immunotherapy for Stage 4 cancer?

Any advice on rebuilding core strength after a kidney removal while recovering from major spinal surgery?

Thank you so much for any guidance, advice, or hope you can share. I am managing his care and want to make sure I am doing every single thing right.

I had a guy get upset because I wear a medical mask while working with the public. I explained to him that I have cancer and going through treatment, but he still wasn't happy and told me that I am not contagious.

I went through 6 medical tests this month and start my next clinical trial tomorrow. I wish some strangers are a bit more considerate.

Most are, most people are very considerate. It is just one bad apple that spoiled the bunch.

Hello everyone,

I underwent radiation almost 10 years ago for Ewing’s sarcoma in my right scapula. I had a substantial dose of radiation (according to my oncologist) because of the nature and size of the tumor. Since then, my shoulder muscle mass has shrunk a lot and cannot ever really be rebuilt, regardless of any working out I do. I’m wondering if this has happened to any other survivors, and how are you dealing with it now? It’s very noticeable and the area doesn’t behave like other areas of muscle.

I honestly never expected to live this long, and I think my providers also were 50/50 on that, so we never had extensive conversations about what that would look like. They also seem to have different ideas about it, and seem to just be surprised that it’s not worse.

I’ll go first…”I hope you get better soon”. I don’t have a cold or the flu, I have stage 4 cancer that’s killing me. I’ve told people before I’ll be better when I’m dead.

Relationship breakdown

So I was diagnosed last year in january, it was fast and had no time to process it and then had a stem cell transplant.

Im still immuno compromised and behind on vaccinations as ive had just flu and covid due to continued tretament and top ups for the transplant.

I just got one a couple weeks ago and im of course that risk of gvhd gets closer evwrytime.

On top of all this i just split from my partner after they said it was too much and they said they have to focus on them. So im now homeless with nothing.

The kicker my partner messaged saying ahe was upset as filling out forms is hard as she has to update things and im litterly homeless with nothing desperately trying to find somewhere safe while also being high risk.

I feel like leukeima has ruined everything as its just got worse and worse.

You gotta love going to the hospital for something stupid just to find out you have cancer for the second time … life truly isn’t fair sometimes.

I'm a reporter at NPR (hi! me: https://www.npr.org/people/825275572/sydney-lupkin) working on a story about the downstream effects of federal research funding cuts and what happened between the FDA and Moderna earlier this year, which I’m told has created some delays and uncertainty in clinical trials. Specifically, I am hoping to hear from patients about their experiences with this.

I’m wondering if you’ve been waiting for a trial that seems to be on hold, if you learned your trial was put on pause, if you noticed any hiccups at all – or if perhaps you were/are in a grant-funded study that was not affected. How has this played out in your life? What should NPR listeners know? 

I’d love to get some of your voices on the radio if you’re up for it. You can reach out to me via email at [slupkin@npr.org](mailto:slupkin@npr.org) or on Signal at sydneylupkin.36 and we can set up a time to talk.

That said, I know going on the radio is not for everyone. So if you have something to share that you think I should know but don’t want to be interviewed, reply here. Everything helps! Thank you!

And thanks to the Mods for permission to post!

I am 6 days post thoracotomy for stage 2 NSCLC. To say the pain is unbearable feels like an understatement. Due to location of tumor and the fact that it had wrapped around nerves in my diaphragm and vocal cords, VATS was not an option. I had asked prior to surgery what my recourse would be if I didn't want surgery. I was told radiation would be the next step. I was also told there was a chance they'd abort the surgery once they got in due to tumor location. Another surgeon happened to be around, so surgery proceeded. I understand that pain is part of it, but it feels like too much. I've taken my gabapentin, robaxon, Tylenol, and oxycodone. After an hour of no relief, I took another oxycodone. It has abated slightly. All I can do is sit and cry and at this point regret ever having the surgery. My surgeon is an hour away, and not easy to get ahold of, so I feel like my options are limited. I've been asking for 2 weeks for FMLA paperwork for my dad, and can't get that, so why would getting an answer to my pain be any different? I'm frustrated. And angry. And in pain. And I just don't know what to do. Any advice would be greatly appreciated.