hi y’all my friend has stage 4 colon cancer, he has gone through i think 8 rounds of chemo (is that short?) and now is doing immunotherapy, and will do clinical trials afterwards, from what he has told me it has gotten better, like a lot of the cancer went away and it’s decreasing in levels or such. 2 questions, do they only do immunotherapy after chemo grapples with the severe tumors ( like will they only start immunotherapy if your cancer gets better/ decreases in severity ,and if amount of cancer is going down does that increase/ change his prognosis? like he says he feels much better on immuno chemo was hell on the body and that it’s going down (although it has gone down and up once before god forbid that will happen again). pls lmk,, just curious, thank you all sorry i’m unsure about terminology / am not super knowledgeable ( he tells me has a very good doctor who all his patients have gone into remission i believe idk if that gives anymore help ). thank you all

I am being encouraged a lot by some people to try CBD oil for my father. As far as I have researched it says CBD helps only in giving relief from the painful and nasty side effects from chemotherapy

But I am being told that CBD actually also cures cancer and works on cancer cells. I asked my doctor directly about this. He neither said yes or no. He was neutral. He said if you wanna try go ahead but I won't recommend as it does nothing on cancer cells. It's just this young generation creating a hype of this.

I am so confused now.

I am willing to try anything for my father if it's safe and works.

Is there anyone who has or had any experience with CBD? Or have much more knowledge than I have ??

Does it actually works on cancer cells??

Please help.

For those of you who got the Foundation One test that looks at the genetic makeup of your tumor(s), how useful were the results in tailoring your treatment plan? I was diagnosed with stage 4 adenocarcinoma a month ago. They cannot yet tell what the primary site is.

Also, knowing health insurance plans can be wildly different, did your insurance cover the cost of the test?

Thanks!

It’s either 3 hours at a time or up forever! So I’m on a up forever right now so might as well dance. Smear myself out to hopefully sleep.

I'm going to be getting it in about 2 months if everything goes well..for now I'm on monthly doxil which is whatever I've had something very similar before, Im just curious if anyone here has had mifamurtide because I don't know anyone that has and I just want to know what its like and the side-effects you experienced with it.

I never thought I'd find myself writing these words, but here I am, at UPMC East, facing a daunting journey ahead. Life has a funny way of throwing curveballs, doesn't it? I've been grappling with the reality of starting over again, but what's made this journey particularly challenging is the absence of close friends and their support. Stranded here without their support, I've had to navigate this turbulent sea alone.
Adding insult to injury, I've discovered that my money and cards have been taken from my home by my sister and her boyfriend, belongings have been rifled through, sold, stolen, or even destroyed. It's a violation of trust and privacy that only compounds the loneliness and uncertainty of my situation. They've emptied what accounts they could before I was informed by the local police and able to shut them off. They're in limbo at the moment cause I can't trust they won't steal my mail. I've had police and adult protective services here this evening.
Once I'm released from the hospital (UPMC East), They offered to put me up a few nights in a hotel, so I can attempt to gather my thoughts and reassess my next steps. But beyond that, it's anyone's guess as to what the future holds for me. In times like these, it's easy to feel overwhelmed and lost. Yet, I'm holding onto hope that amidst the darkness, there will be moments of light and solace. Perhaps, through this adversity, I'll discover a strength within myself that I never knew existed. In my 30s, it feels too hard to start all over again, yet here I am. I've spoken with a social worker and we're figuring out my next move for when I'm well enough to leave, but it's all very frightening. They took books, clothes, my meagre savings.
Thank you to those who have reached out with kind words and gestures of support. Your presence, even from afar, means more than you know. And to those facing similar challenges, know that you're not alone. Together, we can find the courage to endure and persevere, one step at a time. If anyone knows of any very cheap apartments I can apply to while I fight them on this and try to recoup losses and build my life, it would be appreciated. Also resources to get books, coats, blankets, how to start a po box and how to build a resume. Shelters are hard to get into this time of year, but those are also welcome, as well. Pennsylvania
Also a major thank you for those of you who have taken the time to visit. However briefly, you have done more for me than my own family and I can't thank you enough. I don't think I've stopped crying for a day and a half out of stress and gratitude. Thank you for being my found family. I love you all.

Hey team, I hope everyone is well.

Today I had another scan at MD Anderson for my stage 4 dsrct. Thankfully things have slowly started to turn back in the right direction for now. We are still working towards surgery. It was very reassuring when my oncologist listed a number of other treatments and clinical trails in the works, but hopefully I won’t need it. Also, another new drug is now available for my cancer, so i’m happy some research is being done.

My last scan wasn’t the best, not bad, but not what we wanted to see. I felt pretty defeated.

They are decreasing my doses 20% to ease side effects. I hope it helps me my quality of life was slowly declining.

Hope everyone had a good day. Anyone who has scans coming up, good luck.

I beat Hodgkin's lymphoma twice now! 15 rounds out patient chemo,a stem cell transplant (6 days of intensive chemo, transfusion, and 11 days recovery all inpatient), and a whole butt load of test to prepare for treatment! But as much as they prepare you for the physical toll it takes on you they never really prepare you for everyone else's reaction!

The hardest part of the whole journey was look on people faces when you talk about the cancer or how people won't tell you about their health problems because cancer is bigger then what they are dealing with! Sometime I want to yell "Cancer isn't my whole life it's just a part of it" or " I still give a fuck you and your health even though I have cancer it didn't take away my sympathy/empathy for others!"

Ik everyone experience is different especially based on what kind of cancer you have, treatment plan, and so many other factors! So for you as a patient what is your hardest part of having cancer or things no one prepared you?

Tomorrow I'm getting a scan to see whether the chemo worked for my Stage 4 Hodgkins. I have a 7 year old and the scanxiety is hitting me right in the parenting heart. I don't want to leave her, I don't want to traumatize her, and none of this is within my control. She's in therapy, my husband swears that should I die he will be all over grief therapy, my parents are available to her, etc. And I guess I'm venting but also would love some reassurance that she will still be emotionally ok with appropriate therapy.

Hi, my sister has cancer, the doctors deemed her inoperable and want us to accept treatment to improve quality of life and that's it.

We are looking for good hospitals in either France or Thailand or the states. Any feedback or advice is much appreciated.

I had tonsil cancer in 2019. Now I’m having pain from a pulmonary effusion on my left lung. There is a nodular that looks like cancer. I’m waiting on Bronconstomy (sp?) on 16th. I have constant pain and I’m worried. I do not know should I try to go around my pulmonary doctor to get more pain medication. He says 3 pills a day and the pain is constant with the pills. I do not want people to think that I’m a junkie just trying to get high. I feel alone. Am I over reacting? I know people are worst off then me and deserve help more then me but I’m scared. Sorry for the venting/ rant

Hey everyone. I completed my second round of immunotherapy with nivolumab and ipilimumab a week before last Friday and about three days after the infusion I started developing very troubling side effects. SEVERE headaches that went on for a week until my oncology team finally decided to do something. Other side effects I had were body aches, chills, light fevers that would start and stop randomly, dehydration, lack of appetite, extreme exhaustion and stuffy head. After three days of these horrible side effects, I called the emergency support line as it was after hours and I was told by the on-call doctor that it "was too soon for these side effects to be taking place" and that "it sounds like COVID, you should take a test" which I found absolutely ridiculous. I did NOT have COVID and after the phone call I was enraged because not only did this person even SUGGEST that it could be anything else but it was the SAME doctor that said the rash I'd developed "is definitely from the treatment". Not a good start.

After two more days of agonizing headaches and tons of Tylenol I couldn't stand it anymore so I called the number again and, thankfully, the rotation changed and I got my actual oncologist. He was extremely concerned so he ordered a STAT MRI because he sounded like my melanoma had spread to my brain. Thankfully it did not but the labs on my blood indicated a huge spike in liver enzymes and my other blood tests showed that, not only did my immune system absolutely LOVE the therapy so much that it was basically attacking anything it could find. He put me on an immediate regimen of Prednisone and Norco.

After two days they wanted to see me again to check the levels, etc. which takes us to today. I spoke to my oncologist's PA and she told me that I am having a "Triple Immune Toxicity" where the immunotherapy has directly attacked my liver, skin and pituitary gland. They feel that the pituitary gland attack is what caused the headache and the liver attack caused my liver enzyme reading to shoot up to near 1000 which is very bad according to the PA. It has since fallen by over half of that number from the Prednisone and Norco treatment and we hope it continues to do so. This is where the "good" news ends and the "not-so-good" part begins.

Because some very important organs are being attacked so aggressively there is a very good chance that they will terminate the therapy completely. I've already been pulled from any infusions for the rest of this month and, pending the consultations they'll be having with my endocrinologist, they will determine if any future infusions will happen at all. They will also formulate a separate plan of steroids as well since long term Prednisole treatment is also bad.

This is where my worry comes in. They don't want the immunotherapy to kill me so stopping that means means there are no other options for me. Even they admitted that there are no other options for Stage 4 Melanoma and that it will likely be the thing that takes me in the end. That both terrifies me but also brings me calm because then at least I'll be able to end things on my own terms and not be accidentally taken out from a medical accident that cannot be reversed.

I honestly don't know what will happen yet but it still all seems very surreal. Anyone else had this happen or know someone how has? What did you do? What WOULD you do? I could use some advice on how to get some peace of mind.

Thank you for reading.

I was constipated for 1.5 weeks working with doctors but it turned out. Mu damn tumor was the blockage. So I got wheeled quickly to surgery to have a colostomy bag set up.

I never imagined myself in this situation. I'm only 46. Trying hard not want to ncurl up in a ball crying

Aunt just got diagnosed stage 4 breast cancer with mets to lung and bones (originally was stage 2 about 2 years ago). Doctor claims the cancer has spread so much so they can just try chemo now, nothing else not even radiation. They told her 2 months. We are all devastated. Need miracle stories

Post head and neck surgery, no treatments yet (my f-ing insurance company). I feel like I should be getting better day by day as I recover from surgery, but just the opposite is happening. Can parotid cancer really knock you on your ass, or am I a hypochondriac?

Greetings, friends.

I found out on Tuesday that the one remaining metastatic turd on my diaphragm has shrunk by over 50% in just 6 weeks. I'm 4 cycles in on single-agent adriamycin for oligometastatic myxoid liposarcoma, and after 2 cycles, it shrank a teeny bit, but over the last two it appears to be rapidly dying, screaming, and disappearing. It's shrunk so much in fact that my doctors want to move up surgery (April 19th) before it gets too small to find. Then, once I'm healed, assuming my echo looks good, finish out the treatment course with two more cycles of adriamycin to "mop-up" any stragglers. Of course, because sarcomas are rare in and of themselves, and each of the 150 flavors are even rarer, there is no research available as to whether or not "mop-up" chemo is effective. But, there's also no evidence that it's not. It's a very aggressive approach, but I truly get the feeling that my doctors believe that I can live a very long time, and that before long, this chapter will be behind me - at least for a while. My oncological team is absolutely incredible (I'm treated at Duke), and I trust them.

My question: exactly *how bad* is a small chest tube in terms of pain? The thoracic surgical oncologist who's removing it said "well, this is going to suck - but you can do things that suck, you're beasting the Red Devil" (he's a solid dude). I'll only be in the hospital one night, and he said it's a "small" chest tube, but I imagine ANY chest tube is awful. Tips for recovery are appreciated - I work from home in non-profit and have a huge summit coming up on May 7/8 that I'd really love to attend.

I've crossposted this in r/sarcoma as well.

Trudging along to get that NED badge for my handle. Hope springs eternal, right?

VAMOS!

Starting chemo on the 17th.. I'm optimistic but it's stage 3 colon cancer with many lymph nodes involved.

Anything I need to know, do, have on hand or things that help? I'm getting the Folfox at home carry pump.

Other questions, how much can I actually expect to work, best days to take off?

General tips appreciated Thanks folks

I have a real conundrum. I am a likely terminal patient and my current oncologist is recommending palliative and hospice care versus additional treatments. However, I had another oncologist(in a different state across the country) recommend an off-label treatment that they have seen success in similar cases with control and tumor response.

My problem is that my current oncologist is not on board with this particular treatment. Is there a possibility to establish care with an oncologist in a different state without having to move ? Could I just find a new, local oncologist that is onboard with this treatment and have them prescribe the treatment?

I discovered a rare form of bone cancer in my Tibia as a 37F. My ortho removed a third of my Tibia and replaced it with an allograft/rod/plate. After two+ years, my allograft was deemed "un-bound". During those two years, we grafted from my unaffected Tibia and removed hardware to get it to take. I also spent thousands on acupuncture to better the blood flow. The good news is I am now two years cancer-free and have additional options available.

Instead of amputating or using an external fixator (for eight months), we elected for an internal bone lengthening nail and Nuvasive pulley system in an attempt to regrow my 12 cm deficit. (see x-rays).

The challenge is that I am currently on my 11th-week post-op and have only lengthened (pulled my Tibia towards my knee with a magnetic system) for 3 of the 11 weeks because I am not forming enough bone to lengthen. (I also had issues forming bone with my allograft).

I know my situation is unique (my cancer type is VERY rare), but has anyone had challenges forming bone during limb salvaging and found solutions to expedite the process?

I am now 39 (40 in July). I don't smoke or move/beat weight, take calcium, vitamin D, Magnesium, and Turmeric, and eat lots of greens. I ice and elevate all day. I try not to fixate on why a "healthy" individual can not form bone. Do you have any suggestions?

My most significant stressor (besides the constant pain of losing my ability to work and walk) is that I am just wasting time in this attempt and should fast forward and amputate. I have two children and a husband who have been sacrificing for years to support me. Ofta, appreciate any/all suggestions.

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They want to start my wife on MATRIX, which is not covered by OHIP. I am wondering how much the drugs cost? Per treatment, per month, full treatment, anything would help.

I just need an order of magnitude: hundreds, throusands, tens of thousands?

I am looking into what my work health plan will cover, and some have maximums. So having a rough idea would help for budgeting.

My wife has anaplastic positive lymphoma. And ever since she started chemo she will eat a good breakfast but almost nothing thru the rest of the day. No protien shakes or anything. Is there something I can do to make eating more attractive or a pill to make it just easier for her to get the intake she needs to fight. I go out and buy all her favorites and they just sit in the cabinet or freezer forever.im at a loss.

My chemo ended in July. The cancer is in remission and I am having checkups with oncologist every two months... Every time before checkup, a day before I am nervous, can't sleep, can't eat. I know it's normal, and I am aware that I will probably live in fear for the rest of my life. How do you all manage that?

Let me add, that in between I am not really thinking about what happened. It all happened very fast, tumor was stage one, chemo was successful, all tests are coming back ok for now... But still every time before checkup I am nervous.

My husband got diagnosed of stage 4 colorectal cancer and is starting chemo FOLFOX in couple weeks. I wanted to get your experiences and learn from it so i can prepare him and myself.... If u know links or websites with more info please post it too. I am also in Canada not sure if that matters. Thank you everyone 💓

Hi. I had surgery on March 11th. In 2019, I had a surgery to remove a tumor the size of a ping pong ball in my sinus. Since then, I've had impaired speech and, well, a big hole instead of a roof to my mouth. This surgery took "stuff" (medical term) out of my leg and put it up in my sinus to rebuild. I think my voice is better already despite my new lisp due to swelling and (more) lost teeth.

I hope everyone is feeling hopeful and that they are moving through their own fight at the right pace. This surgery was a huge step for me and it's come with a lot of struggles, but I'm thankful for the progress and grateful for the healing that's happened so far.

https://youtu.be/gP7TVaRnQHA

The video, as well as a comparison video from before the surgery are both on a post I made about this, which is here: https://jameseichenberger.com/april-3/

I (33m) had stage 2 Hodgkins Lymphoma and went into remission several years ago. I quit smoking. Have maybe half a beer a year now (which was a dramatic change from being at the bar daily). I also excercise more than before. Yesterday, I found a lump on the left side of my groin. Feels so much like what was forming in my neck. A check up at my favorite oncologist would settle things but if those results are bad then I know how fast all of this moves and I cant bring myself to sit in that fucking chair again. I struggle with depression and dont have alot going for me. I didnt have anything going for me before and now if this is back Ill never be able to course correct my life. I will get this looked at. I just feel like Im doing it for the benefit of others (family, gf, friends) more than I am for myself. These days are tiring after all.

Hi All! I finished my radiation and chemo for throat/tongue cancer on 10/13/23. I think I am mostly recovered, but still having issues with eating... no saliva makes chewing and swallowing difficult, and many things don't taste right. I get tired of chewing and just give up. I've always wanted to lose weight, but not this way!🤣 Has anyone had good luck with juicing? Any ideas or tips? I appreciate your wisdom and support!

I have stage 4 metastatic breast cancer that’s in my lungs and bones. I take ribociclib and letrozole.

Just recently I had my regular bloodwork done. I’m able to see the results before I see my doctor. It shows that the wbc, mpv, neutrophils, and lymphocytes are all low.

Today I’m absolutely exhausted. I feel like I pulled an all nighter. All I’ve done was laundry. Now I have zero energy left, and I still have to take my dad to an appointment.

I’m just so tired of feeling tired all the time. I’m not working anymore so I can’t use that as an excuse.

I was originally diagnosed my brain cancer in 2020 when I was 23. I was fresh out of college so that created an extended unemplpyment gap. Eventually I did get a job in 2021 but my tumor reoccurred in 2023 november. This time im doing more aggressive treatment (proton beam+ cisplatin chemo) I tried to keep working but by new years I couldnt do it.

Im still in chemo and its taking everything i have just to keep going so I am still on medical leave but I worry that my manager is already looking to replace me. Im really burnt out but I dont have much to show for my career. When I was applying for jobs its always about my resume gap when I was having brain surgeries and radiation but its never a good idea to mention cancer in an interview.

I have to focus on maintaining my job to have healthcare but my job burns me out and I am in the middle of chemo while my manager and coworkers are in the middle of projects and I guess to them it seems selfish to take so much time off work.

Im so stressed out and burnt out. Cancer is making my 20s hell. Idk how I am supposed to afford healthcare and be healthy. And then I have to worry about the neurocognitive decline due to proton therapy that will make it hard for me to work over the next couple years.

Went over to my mom’s side of the family last night for a get together. Had a lot of “you look good!” “What was chemo like?” “How was your surgery?” And I guess it weighed heavily on my mind…

So heavy I had a dream I was in the oncologists office with my brother, we were joking when in came my oncologist with my chart and started looking over it before he got a grim look on his face. Woke up right before he could say the words and moved to sit down in the hotel computer chair since about 6 am.

Idk… just feeling… rough and rundown this morning due to bad sleep.

Hey everyone. So I 21 M was diagnosed with ALL ph+ about a year ago. I went through a lot of complications so it extended a lot of my stays in the hospital which I’d say I’ve spent about 6 months locked in hospital and another 6 months locked at home. Through out my hospital stay and my stay at home I’ve been with my mom 24/7 since she’s my main caregiver. And she’s amazing and honestly I whole heartedly believe I wouldn’t have survived this if it wasn’t for her. Especially since I was going though a breakup at the beginning of my treatment.

Now she’s still my mother and me and we butt heads more often now I guess cause mainly due to my frustration with how my recovery is going and how I feel like I take 2 steps forward then 1 or 2 steps back constantly. And being told constantly u need to do more and try harder as if I’m not already giving it my all. So as of lately I haven’t been around her as much also due to the fact she’s 8 months pregnant so she tends to rest a lot in her room.

My siblings are either constantly busy or not at home living there life which I am happy for them that they can do that. So I don’t get to spend time with them as much and we often argue due to them not seeing me at all while I was in the hospital so they struggle to empathize with my current situation. Making comments like “you’re being dramatic” and “it’s not that serious”. How ever I am the oldest and they are still young and stupid so I don’t expect much from them.

I love spending time with my dad but he’s working litterally 15-16 hrs a day 6 days a week to keep the family afloat financially since my mother lost her job cause I got sick.(she’s planning on working again after she has the baby).

So that stress on my parents hopefully will get resolved soon. But since my entire family is under so much high stress we tend to have a decent amount of arguing in the house. So it’s a little toxic but I can’t really escape it.

Both my best friends moved away and they are both also always busy so tend to not talk as much but hoping that’ll change when summer roles by. So overall I’m alone. Like a lot. I don’t really have anyone to call or talk too. And I don’t really have anyone to physically spend time with. Since my still locked at home. Now my doctor has said I should be able to start seeing people however the one day I left my house I caught a coronavirus which then gave me some kind of pneumonia and severely damaged my lungs. So I’m back stuck at home and now stuck on oxygen . I’m hoping once I fully recover from the damage I have in my lungs that I’ll be able to at least go outside to like a metro park for some exercise to help with my general recovery.

Now I’ve been thinking about getting a small breed hypoallergenic puppy after my lungs get better. And I’m going hypoallergenic since my mom and brother are allergic to cat and dog hair. And my mom seemed like she was down with the idea even when I was in the hospital. But now she kind of switched up on me. And is telling me no. How ever if I can get my pops to agree to it and I pick up the puppy without her knowing and it’s cute enough my mom will fold and accept it. (I know this from experience). I like the idea since it being smaller it shouldn’t be as hard as a big dog, which I’ve had before I had gotten sick when I was living alone. (That dog I ended up giving to a close friend of mine who lost his father recently). Also it will kinda force me to go on more walks as well. And the general affection and time I’d put into him or her I feel like would help with my general loneliness. This kinda my only solution since I can’t really make freinds since I can’t be in large group settings. And I’m probably gonna be stuck at home for another few months.

Now comes to the boredom. I’m pretty over playing video games at this point. And I feel like I have essentially beat the internet from how much media content I’ve consumed over the past year. I’ve tried reading but my adhd makes it really hard and honestly not enjoyable. I used to make music actually pretty consistently but as of late the brain fog has killed my creativity so I only really do it when I get that random spark. Every other hobby that I have are all outdoors or require physical activity that I’m currently unable to due how deconditioned I am. The only hobby that I have that I hope I’ll be able to get back into soon is cooking, which also a my whole family loves that I have. I’m mainly just waiting on me getting a bit stronger cause it requires a lot of standing for multiple hrs and my lung situation. But ya other than that I really can’t think of anything else. If you have any advice I’d really appreciate it and if you are the pour soul that read all of this mess thankyou.