Hello, my uncle 73 was diagnosed with a biliary tract tumor measuring approximately 1.5 cm. They put a stent on him to let the bilirubin pass. We are still waiting for the CT scan to give us an overview of the situation. I read that it is a very aggressive cancer that leaves no escape. The size is 1.5 cm, and is located before the pancreas. Is it possible that a tumor of this size has already metastasized?

As the title states, I’m afraid I am have permanent damage to my hands and feet. My last dose was Oct. 5.2023. I had two doses Of oxaliplatin, 6 months of Capecitabine.. I had a severe reaction to the oxaliplatin on the second dose. Took quite an effort to pull me out of it. So, that part of treatment was stopped. Of course I had neuropathy while on the oxaliplatin but after a week or two, normal feeling returned. Now, 6 months later, my feet ache to the point it can be difficult to walk. I start my day with little to no pain, but by the afternoon, it’s pretty painful. I’m hoping it’s all plantar fasciitis. I fear it may be a combination of that and neuropathy. My hands ache all the time, but it’s completely tolerable in relation to everything else I’ve experienced in the last year and a half. Reaching out here to see if anyone has had late onset neuropathy after treatment?

So a lot of folks do the icing thing pre infusion to vasoconstrict their most peripheral blood vessels and thereby minimize peripheral neuropathy. However, has anyone tried topical vasoconstrictors, like phenylephrine (common use in hemorrhoid cream) or oxymetazoline (common use in afrin for nasal congestion or roseacea creams) to help vasoconstrict their peripheral blood vessels?

My dad is; Male, 77 Has pancreatic cancer secondary from renal, had his left kidney removed in 2022, is in remission for prostate cancer and possibly has a tiny tumour in his spine near his neck.

My dad has become unrecognisable in the last week and is currently in hospital following a fall but the consultant says he’s ’medically sound’ despite no longer being mobile and being extremely confused and tired.

Dad was on a similar medication for 4 weeks and despite it making him feel terrible he took the full dose and when he was taken off it he took 4 weeks to get back to himself (walking 3 miles a day, driving, eating etc) and has been tolerating VOTRIENT well until last week; he had a fall 10 days ago while hoovering and hurt his arm but said he didn’t require hospital treatment (it’s black and blue with a nasty cut though) he had another fall between 01 April 10pm and 02 April 10am, the fire brigade broke into his flat and found him conscious but on the floor of the spare bedroom unable to get up and he’s been in hospital since.

His speech is slurred and he is confused at times, his voice is much more quiet and he seems breathless and tired but the biggest physical difference is his mobility is gone, he can shuffle with a walking aid and another person helping him, the hospital are talking about discharging him on the grounds that his bloods/observations and scans are clear, they can’t find anything that requires him to be an inpatient, however, he lives alone in a first floor flat with no lift access and at present cannot get out of a bed or chair without help for another person.

I’m sorry this is so long, I’m desperate for some advice really, oncology haven’t indicated whether the medication can be the cause or whether the cancer could have spread and be causing these new issues but they arose so quickly, seemingly following the fall, the ward staff don’t know what dad was like before the fall so assume he was managing independently in the same condition he is currently in.

I am his only family, he has a group of friends who have been amazing and they are also telling the staff that something is very wrong with dad but no one seems to be looking at the cause and I don’t know what to do.

I appreciate if you have read through all this I’m hoping it make sense, if you need more info or history let me know and I’ll answer best as I can. TIA

How was your experience? I'm very nervous because I had a renal biopsy that landed me in the hospital from severe internal bleeding. I have read on the risks but I would like to hear experiences from real patients.

I have stage 4 liver cancer and was wondering, I get cravings every here and there for some hot chips and i havent ate them in 3 months but have you guys ate them or should I stay away from them, My doctor said like my diet isnt a concern for him as im a very healthy eater i just used to snack on hot chips but i just want to know from other patients if hot chips had negative effects on them

Up until now I have been prescribed hydrocodone but my pain is severe intermittently and the pills hardly work. It's the kind of pain that makes you feel nauseous and debilitated.

Nurse Practitioner in the Colorectal clinic has referred me to 'Symptom Management' (which used to be called Palliative Care but they changed the name to avoid confusion with Hospice).

The NP has been prescribing me the Vicodin and I want to know how to conduct my first meeting with my doctor at Symptom Management.

it's so tempting to minimize the pain and I want to make sure I don't do that.

Should I ask for morphine? I have had morphine after surgeries (only when in-patient) and it certainly works.

The Symptom Management doctor will be in charge of my pain meds from now on and that clinic is very holistic and treats all kinds of symptoms including pain.

I feel like I can handle my cancer journey as long as I am not distracted by the awful pain.

What would you ask for? What questions should I have? I am a little lost for ideas and I worry they will see me as a drug-seeker if I jump right in BUT I have documented stage 4 cancer for goodness sake.

I used a supplement called Kratom for a while for the breakthrough pain but I have developed an aversion to it.

Hi. I’m a 22 yo F, diagnosed with stage 4 gastric cancer about two years ago. The cancer metastasized to both my ovaries and I had to get them removed. I was also able to do egg freezing so I’m very grateful for that. I’m seeing a menopause specialist in about two weeks but until then I wanted to ask if any of you have any recs on how to get through this transition/share your stories? It’s something that’s always in the back of my mind, sometimes it’s all I can think about. I don’t think I’ve learned how to cope with this yet. Fortunately I haven’t experienced any terrible symptoms yet from it. I think it’s more so the fear of what’s to come.

This community has meant a lot to me since my recurrence of melanoma. I was diagnosed with a tumor in my chest, armpit, neck, and brain back in October. The brain tumor was removed surgically and I have been receiving immunotherapy treatments for the last six months.

I had my 6-month PET and MRI this week and the treatments are working! There is no sign of any lesions in my brain and it is healing well. The tumors in my armpit and neck did not show up at all and tumor in my chest is shrinking. The doctors are going to continue treatment indefinitely so I still have a long way to go but I will take good news wherever I can get.

Thank you to everyone in this group for making me feel less alone. You all mean a lot to me.

Hi fam,

I had a nephrectomy 6 mo ago and then put on Keytruda, 4 weeks after surgery. While the blood work has gotten progressively better, a CT Scan today revealed a couple nodules on the lung. Around 1 cm. Nothing around the surrounding tissue or other organs.

I know Keytruda can cause inflammation, can it cause a nodule? Appreciate any insight on this - doc visit next week and until then freaking out! This was a scan with oral and IV Iodine, from my pelvis up.

Have a great weekend!

​

BRC

Anyone else experience severe pain after this injection? What other side effects have you noticed!

I was diagnosed in 2022 with esophageal and colon cancer. Had chemo and radiation in late 2022/early 2023 and then surgery to get my esophagus removed in March 2023. I recently got my part of my colon removed (3 weeks ago) and am still recovering.

For the majority of the last almost two years I was sure I was going to die and I felt like death too.

At my visit today I was told that there was no more cancer inside me. I don't know what to do with myself now. I supposedly have a future to look forward to, but I no longer have my old job, I'm in massive debt from medical bills, and my body is still very weak. I am thankful that I am one of the lucky ones that survived two deadly cancers, but I just followed whatever the Doctors wanted me to do, I don't even know what kind of chemo I even got, just that once a week I had to be at the infusion center after my radiation was done for the day. I just went with the wave and I ended up with no cancer.

I remember being so sick and starved that I begged God or the Universe to just end my suffering. Let me not wake up anymore. But there I was the next morning, waking up, and continuing to do what I was told was necessary.

Anyways, that's my good news and I hope that someone reading this who may be where I was a year or even a few months ago has renewed hope that the possibility is there that odds can be beat. I am emotionally overwhelmed today so if I come across as a little off it's because I need to find a new set-point for myself with this renewed hope.

US specific because insurance:

TIL therapy was approved by the FDA, but our insurance is denying the claim saying it is an experimental procedure. Anyone else hit this roadblock? Did an appeal turn into an approval? Has anyone fought their insurance company after denying a treatment that was desperately needed?

Any advice is appreciated!

On the basis of my overall health my oncologist gave me the choice of immunotherapy or chemo (one medication).

I chose to go the chemo route (capecitabine) because chemo has a better chance of shrinking anorectal tumor which is causing considerable pain daily.

I start the pill form next week. I am just interested in how you got on with capecitabine is a single medication chemotherapy?

Side effects?

Effectiveness/Success at shrinking tumor?

I will be doing three months of capecitabine (pill form) followed by a scan. I am stage 4 with mets to lymph nodes, liver and lung.

I am not seeking medical advice - I am just keen to see how many people tolerate this medication well.

Thanks!

I was diagnosed with stage IV breast cancer in January. I’m actually doing well and feeling pretty good on my current regimen. (Letrozole and ribocilib).

I’m due for my 3 month follow up scans next week and all of a sudden the anxiety and terror are crazy.

For you veterans of this battle, is this common before every scan? Of course I know that at some future point I’ll likely have progression - but I’m really trying to stay positive.

I am recently diagnosed with advanced stage 3 colon cancer and am in terrible pain. I’m getting set up with a massive hospital system for treatment but don’t even have an appointment with all of the doctors yet. I called and they said they will call me with the appointments. If I go to the ER, will my pain be taken seriously and treated accordingly? I don’t have a blockage, just bad pain.

Hey everyone!

Noticed things have been especially dour here in the last few days (imagine that?). Thought we could use some off-topic conversation to remind ourselves that life outside of cancer exists. Read any good books recently? Seen any good movies? How's the weather out there today?

I was recently diagnosed with Squallus Cell Carcinoma and while i fully understand that skin cancers are in no way as devestating as internal cancers (typically) I am wondering about some terminology.

I never want to diminish or "cheapen" anyone's struggles or triumphs over cancer but once i have this "handled" am I considered a cancer survivor or is that reserved for those with more difficult struggles?

Please understand that this is coming from a place of respect because I NEVER want to be in a position of having "stolen valor" as it were.

Thanks and good luck to all

When I first started chemo I could walk much longer without getting tired, my legs didnt feel this weak and I didnt run out of breath by just walking up a short hill. My chemo regimen is intense and I know its stupid to compare myself to others but some people seem to be able to gym and do all sorts of excersice and thats just been impossible for me. I hate feeling this weak and tired, having this heavy feeling in my legs all the time and nearing the end of my treatment im wondering if this is even normal? Protein has been hard to eat enough of (also vegan) and so far I’ve only gotten one blood transfusion for my anemia. Im also pretty sure I have vitamin deficiencies. But I still dont understand if its all supposed to make me feel so weak. Anyone familiar with this?

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 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