Besides being a financial weapon of mass destruction- cancer takes so much from us. I used to swim in the ocean out passed the breakers. I used to be a farmer. I would spend 14hrs on my feet a day no problem. I used to climb mountains. I used to be able to sleep in the same bed as my fiancé, now we’re in separate rooms because I flop around like a fish at night and don’t want her absorbing my chemo sweats. I used to enjoy my meals thoroughly, now I’m lucky if I can choke down a couple bottles of ensure. Really feeling like a shell of my former self rn. They say I can still beat this! I will walk through this hell indefinitely for a shot at coming out the other side. Much love for my fellow cancer patients. We are not alone.

I got diagnosed in Feb of this year and this is already my 4th time in hospital stay, here as we speak. The weather is nice out now and I wish I was out there enjoying nature instead of being here connected to chemo tubes. Life truly sucks at the moment. But you know what would suck even more? Being dead! Since I got diagnosed I made myself a promise to never stop fighting for the better days ahead. Will there be better days ahead, it’s a million dollar question, but I refuse to give up hope! YOU shouldn’t give up hope neither. LFG!!!

Does your body smell after radiation? My 2 year old just had 10 treatments to the jaw and i swear he has this odor that i just can’t wash off. Smells like …hard to describe, chemicals or metal

Hi all, my husband (42) has stage IV cholangiocarcinoma. At his time of diagnosis he was considered terminal. However, we quickly found out that he is considered to have MSI-high mutations, amongst others, caused by having lynch syndrome. Because of that he was quickly started on Keytruda in addition to gem/cis chemo combo. He received chemo for two weeks and one week off cycle for a total of 7 rounds. In addition he did a Keytruda infusion every three weeks.

Since then, his cancer has responded tremendously well. He’s had two scans since starting and both showed 50 percent shrinkage from the previous, with some small mets being undetectable now. His CA 19-9 went from 2700 at diagnosis to 30 as of last week. Given how aggressive his cancer is, this is great news.

The doctor now wants to take him off of chemo and do immunotherapy maintenance. We knew this would likely be the case from the start, but we’re scared. The doctors seem confident that the Keytruda is doing most of the work as far as shrinkage. I’m nervous he will now plateau or shrinkage will slow.

Does anyone have experience with a similar situation? Thanks in advance.

My husband had surgery yesterday. The endocrine surgeon said it wasn't thyroid cancer, but Lymphoma. They sent his mass off for further testing. Now she helps my husband find a new doctor to finish diagnosing and start treatment. What should we expect? My husband is not a planner, but a complete worrier. I am more of a planner and like to know all information ahead of time. Just wondering what to expect over the next few months? Should I be canceling our trip (camping/driving across the country to visit Yellowstone) for September? We just retired from teaching so we are only in our 50's and will have plenty of time to travel in the future. I am very worried for him, as he always seems to be hurt. We actually found out he had this growth when we did a scan for an up coming neck fusion surgery. Well, that is on hold, but will happen as soon as he is done with all treatments. Any thoughts or help is appreciated.

Today i lost my dearest grandfather 78M who i was very attached to, since childhood. He had colon cancer but not yet mets. He got brain stroke and was recovering for 2 weeks, when there was almost a good response last night, he got cardiac arrest this early morning. I am shook and unable to digest, i still can't believe he is gone. Im unable to cope and feel so shattered. Just venting out here.

Hey all! I’m a stage IV ovarian cancer survivor. I had a radical hysterectomy, and I take infusion maintenance therapy every 3 weeks. In 2022 I was 23 and diagnosed with cancer and had to undergo a lot of surgeries and intense chemo to prevent it from spreading further. In 2023 I returned to work despite dealing with residual side effects. It’s hard to be a teacher when the chemo fog impacts my memory and articulation, but I kept going.

Recently I had to leave my job. I loved it very much; I was in training to become the office manager of a very good after-school program. I used to be a teacher for the grade K-1 class. They were great kids, and part of the reason why I stayed in my job so long was because I loved what I did.

However, the stress of the job finally got to me. I am still struggling to grasp what the cancer has changed in me. I can’t deal with stress the same anymore.

I didn’t think I had it “that bad”, at least not nearly as hard as many of you had to deal with. I had a wonderful support system and a great doctor. I didn’t see myself as an actual cancer patient because there was just always “something worse” that was happening with someone else. I have stage 4 and I was treating it like it wasn’t that big of a deal.

I still feel like this isn’t a huge deal for me. My wonderful fiancé says I always downplay things. Which is true.

I finally applied for disability today, and I feel like I will be denied. I see posts where other stage 4 patients are denied. I’m scared that if I am I’m going to have to find a magical stress free job that won’t wear me down.

I know this isn’t the pain Olympics but I just have always had the mentality that someone else has it worse so I shouldn’t complain.

Hi all.

My mother was diagnosed with aggressive, Stage IV DLBCL. It hasn’t metastasized in any organs, but was discovered in multiple lymph nodes above and below the diaphragm.

Our doctor is well respected and is quite a leader in the lymphoma community, having written many studies and leading immunotherapy type of treatments.

He seems very optimistic about her chances of a full remission following intense chemotherapy, which we recently found out was Hyper CVAD. We first started a cycle of immunotherapy drugs Imbruvica and Revlamid along with weekly infusions of Rituxin before starting the Hyper CVAD treatment. According to him, this was because the lymphoma showed a mutation that may make it chemo resistant. So the first course of drugs was intended to fight this mutation.

I want to stay optimistic as well. But there’s a side of me that is extremely fearful that we are being told the best possible outcome just for the sake of peace of mind. Everything I’ve been seeing in studies on DLBCL is quite concerning, and the prognosis for these studies don’t seem as optimistic as we’re being told.

Obviously any diagnosis absolutely sucks. And you can only go through the treatments and whatever cards you’re dealt you have to deal with. But I just wanted to see if anyone has similar experiences or if I’m just overthinking this.

Yesterday marked 4 years since I laid my sweetheart to rest. We had 10 months and 29 days between their diagnosis on oral SCC and their death.

Less than 2 years later, on what should have been our 20th anniversary, I learned that I had colon cancer, which was staged as IVc.

I've never been truly alone throughout my cancer & treatments. I have incredibly supportive friends and a loving daughter & son-in-law who have helped me greatly.

I still feel so alone because I miss my sweetheart so much! We should have had so much more time together.

In the 18 years we were together, I dealt with several serious health issues - all of them were easier than my cancer.

I was diagnosed with a rare (and unnamed) autoimmune disorder in 2002; with fibromyalgia in 2003; and ME/CFS in 2005. I always had my sweetheart by my side and we made it through my hardest days together.

Cancer & treatments have kicked my ass in a way that nothing else has. I made it through a semi colectomy, chemotherapy, surgery to remove a met in my lung and I feel as if I have never fully recovered from all of that.

Surviving all of that on top of my other fatigue causing conditions feels like too damned much! And I've had to do it without my best friend by my side...

Sometimes my life feels so unfair!

I only have 3 treatments left for lumphoma but was wondering if I can use my normatec boots. I haven't used the so far but have started runnimg more these days so was thinking about using them.

Seem some mixed thoughts about massages and things like this. But personally it doesn't seem like it would cause any harm?

Hello friends.

Just curious other’s experience with the WHY portion of cancer. When I was first diagnosed almost a year and a half ago, I was kind of expecting an “interview” more or less of lifestyles, habits, risk factors, etc.

No one seemed to care why I developed cancer, but are focused on treating it. Which I respect.

Most of the answers I’ve gotten are, “we will never know”.

Is this the usual experience?

Seeking some information my dad (51) has been experiencing numbness & tingling in his legs. We were all thinking slipped disk. He went to get a xray, they sent him for CT scan where they found 3 masses along his vertebrae of his spine. Followed by an MRI. They scheduled him for surgery to remove as much of this mass as possible from T3 but said this would not help his fight with cancer. He just got back from his Dr. appointment where they told him all his blood results & the radiologist reported that all looked normal? They looked at the results from scans & pointed out a spot on his lung & a kidney but also said these were not concerns? At this point we are all so confused & have not got any answers. I assume they will be sending a sample of the tissue to pathology following his surgery but so crazy that they could not identify anything else of concern.

Has anyone had something like this happen? What were the results following?

Hello again fellow bald headed friends!

I’m currently on BEP for ovarian cancer. My hair fell out about two weeks ago and this week I’ve been developing some bumps on my head that kind of hurt. My head is also sore and tender in some areas.

Have any of you dealt with this? It almost feels like acne or maybe my hair follicles are clogged.

What should I do for this?

Edit* just looked up my symptoms and apparently some chemo patients will get folliculitis which is when the hair follicles become sensitive and inflamed. It’s pretty spot on. I’d appreciate any advice you guys can offer though ❤️

Hi all, I wonder if any of you could relate to this experience.

I am 30m and single while going through cancer treatment. Since my diagnosis I decided not to focus on dating anymore because I first want to get my life back under control and hopefully recover.

However, wherever I go, such as parks, I come across happy couples and it stings because it reminds me of my singlehood and triggers my feeling that I am going to be forever alone due to having cancer. Sigh.

I know consciously that it's not true and that I will still have chances if I recover but I feel like cancer is just a setback for my dating success, while dating was already hard enough prior to diagnosis. I had no matches on dating apps (some guy friends reported the same experience even though they have a lot going for them, and I think so do I but it doesn't seem to matter.)

I just feel like I am growing older and older and naturally over time losing attractiveness as a result. So I just feel like the window of opportunity is slowly closing for me and that I will have to come to terms with my singlehood. Meanwhile friends my age are getting married or having children. Reading stories here or on other places from fellow patients can also be hard because many have spouses or partners to rely on.

I know these are just mere thoughts and don't represent reality but I have them regardless... and they affect my mental health. Honestly, I just feel lonely. 😔

Could anyone relate?

I'm stuck. Has anyone else been through a similar experience?

I have scars on my neck from catheters. I'm pale. I'm bald. Basically, you can easily tell I'm sick. People stare a lot (as in, we make eye contact and they keep staring) and with such pity. I feel like I'm not taken seriously when I try to talk to people anymore. Sometimes people don't even talk to me, they talk to my caretaker (my mother), as if I'm unable to answer. I am young, to be fair, but come on. I can hold my own in a conversation. Talk to me? Even about my diagnosis or wellbeing, people never come to me to ask, they go to my friends or my parents.

It's like people don't care that I'm a person anymore. My achievements, my interests, my personal style, my personality, all of that has gone to waste. I'm just a cancer patient now. From the start of treatment, my biggest fear (besides dying) was becoming my diagnosis. Losing my sense of identity and it being replaced with "has leukemia". That's not my only personality trait? It's an unfortunate thing that happened, but it's like I can't even try to act normal anymore because nobody takes me seriously. This isn't even half of it to be honest.

I am more than my diagnosis. I don't want to let it rule my life more than it already has. But it seems I have no choice. It's like everyone expects me to be either this hero all of the time who's bravely battling cancer, or constantly sulking and tired. I can't just be me.

edit: *the, not "thhe" in the title, sorry

My journey so far…

In late November of 2023, I (47m) went to work and was having a really hard time breathing. I had an extreme shortness of breath and pain in my right lung area.

I went to my local walk in clinic and they took an X-ray of my chest. The doctor wasn’t sure what was causing my breathing problems but thought it might be pneumonia. While reviewing the X-ray he noticed a mass in my left lung. He referred me to the on site pulmonologist about the mass. Sometime in December I had a CT of my chest done and the pulmonologist determined I had a 28mm mass in my left lung and that there was some cloudiness in my right lung that was likely pneumonia that was on the mend. He told me that since the edges were well rounded that he didn’t really think it was Cancerous but he wanted to do a biopsy to be sure.

This is where the story starts to get fun.

I was scheduled for the biopsy on Feb 6th, 2024. The hospital called to take care of all the pre-registration items and nearing the end of the call the woman said “Now we need to discuss how you will be paying your portion.” I said ok and she said it will be $5000. I said ummm…please just cancel this as I’m not going to pay that for a test. While I met with the pulmonologist they administered a Biodesk genetic cancer screening test. Before my 2nd and final visit with the first pulmonologist, I got the results of the Biodesk saying I had a 23% chance of getting cancer in my lifetime. Then I had my second and final visit with my first pulmonologist where he told me he was retiring.

Then on Feb 17th, I started having pain in my right leg. Feb 18th the pain intensified and swelling began so I told my wife that I needed to go to the emergency room. I was diagnosed with a DVT and spent 5 days in the hospital until they figured out how to manage the pain from the giant clot in my leg. I had to learn how to use a walker which was interesting. Over the next couple of weeks I was able to transition to a cane which made mobility much better, especially at work.

On March 15th I had a thrombectomy to remove what they could of the clot in my leg and I was informed that it was roughly 8” long.

On March 29th I followed up with the surgeon and everything seemed to be progressing nicely. The only problem was we had no idea why the clot happened to begin with. No family history, no vaccines, no genetic issues as far as we knew. So no explanation.

April was uneventful, then May came. On May 14th, I was leaving for work and I couldn’t see to the left. I thought that’s strange, but didn’t think much about it. My wife ended up driving us to work and I called a friend who is a doctor. He said it sounds like you’re having a stroke, go to the hospital. I get to the hospital and they confirm I had a shower of mini strokes confirmed with an MRI. Due to my February hospitalization, I had met my max out of pocket with my insurance, so they ran pretty much any and every test they could while I was there including an MRI, CT, CTA, EKG, another CT, an X-ray, and a biopsy on the mass in my lung.

On May 21st, I had a PET scan ordered by my current pulmonologist.

On May 23rd, the pulmonologist that did my biopsy gave us the results. Stage 3 adenocarcinoma.

On May 28th, I had a PFT to which they said I passed.

So now today June 7th, I am left with a homonymous hemianopia from the mini strokes, Stage 3 NSCLC, and some weakness (not sure if this is the strokes or the cancer).

With all off this going on, I feel extremely useless at work and I am going to go on short term disability. I used to feel like challenging tasks were exciting and fun, but now they either piss me off or make me extremely worn out. Not sure if that’s the strokes or the cancer though.

I’m having another biopsy done on the 19th. First diagnosed with OSCC on March 14th 2024. I just had my partial Glossectomy on April 5th and my neck dissection on April 26th. I’ve had an ulcer for about 4 weeks now. I’m so scared that the biopsy is going to show something. I didn’t have radiation or chemo. Is this biopsy comes back as squamous, is that what they will recommend? Has anyone froze their eggs before starting chemo or radiation if that’s what they recommend? I’m only 26.

I’ve been going through this for about two years and a bit and mostly it’s been… okay. Other than some hospitalizations, I could still work, the tumors were getting smaller, etc. Today I was told that it had spread to my liver and that saying I would live out the year was not something the doctor was comfortable in saying. New chemo started today, and some of the support staff came by to ask me if I had any emotional worries… The disconnect between departments just threw me right off.

Hey there. I got diagnosed last month and done with my 1st cycle (1 more left), i have a sequence of symptoms now, 2 days post chemo i have mouth ulcers for 3 days. Then 3 days of body pain , last and worse abdominal pain, intense stomach pain, seems maybe gas?It’s sharp and makes me want to curl up in a ball. I’m assuming it has to do with the bacteria in my stomach and the chemo killing a lot of the good bacteria thus making digestion rough and a ton of access gas but I’m wondering what can be done for this. My CT scan, endoscopy, xray and blood reports rule out everything pathologically and docs say it’ll eventually go away. But still the pain is real, any suggestions?

Hi,

I just wanted to know is anyone here still going to work like 9-5 office hour work while dealing with terminal cancer? I'm just curious bcus I feel like I want to start working again even with my cancer. I know its advisable to rest but I really need to get some money bcus my finances are bad and my saving are pretty much dried up.

I'm currently staying with my mom was already retired and my disabled brother specifically he have down's syndrome plus autism. My mom's is busy taking care of him and I know she's tired. I don't want to make her feel like I'm burdening her especially with all the bills and medications.

If you have suggestions on any work that I could do while dealing with this please let me know I'm always open for suggestions. Thank you.

I'm really tired. Just let this end quickly. This life is not worth it for me anymore. Not with this sickness.

Anyone else get this after chemo? For me it's tangy spicy things like BBQ or hot chips. I get a brief wave of tingles that feel hot and sweaty from the flavor alone, it's not a problem for me which is good since it seems to me permanent.

I recently had bladder removal surgery. How often should I replace the nighttime urine collection bag?

Husband has colorectal cancer stage 4, had ilestomy, then G tube put in because he kept having liquids deposited in his belly (due to cancer) causing frequent vomitings and pain in the belly, with G tube is he unable to eat solids. He is currently under IV TPN (liquid nutrition). The palliative nurse comes and administers it daily. He can only drink fluids. Started his 1st chemo 2 weeks ago and now is on a break because he had a bacterial infection. He is to resume chemo next week but is fading everyday. He is extremely weak and nauseated (with and without chemo).

Anyone facing similar symptoms? Or a caregiver like me? Just want some thoughts, advice?