Hi everyone, (I posted in the MBC group as well but wanted to ask here as well in case someone here may know) I had surgery 4/29 to remove a mass that was found in my right cerebellum.

I’ve now met with the radiation oncologist and the plan will be to do 5 rounds of radiation (SRS) in that spot.

If anyone experienced SRS radiation can you tell me how it was for you and side effects?

Another question for anyone with brain mets, how are you doing? How has treatment been for you?

Lots of people give me suggestion of ivermectin and fenbendazole for cancer. I’m little confused to take.

Hey guys so I just finished my last chemotherapy a week ago and scheduled to get my chest port out in a week I’m 20 yrs old but turn 21 next week and I used to smoke daily before my diagnosis weed and nic it was just part of my everyday life once I got diagnosed the day they put in my port I stopped smoking completely and now that I’m done I want to smoke again weed and nic I’ll wait a couple weeks after my chest port coming out but does anyone else do the same as a young adult or even 30’s or 40’s smoke post chemo ? I know I sound dumb but it’s like I live one life I guess lol but idk what are you’re guys thoughts and has anyone experience this also and the cancer I had was Ewing sarcoma hope yall have good days !

Australia based (Brisbane)

Hello all!

I’m not sure if this is the subreddit I should be asking on, but my mother just got told that she has to have chemotherapy for her stage 3 HR+ breast cancer. (I’m unsure if that’s how it’s written, but that’s what she said).
Her oncologist said she’ll have to have four fortnight’s for the intense chemotherapy and then four weeks of the regular chemotherapy and then radiation.

Anyhow, her oncologist said that she will most definitely lose her hair, along with all the other nasty side effects.

I unfortunately cannot help her when it comes to the other side affects, but I can help her find a wig.

My mother is not a vain person, she is not one to worry too much about how she looks. But she is worried about what she will look like without hair. (Personally I think she’ll still look perfect, but who am I to tell her no if she wants a wig)

Are there any of you who have any good wig website recommendations for Brisbane (Australia) located. I want to pay for a good wig for her, but not one that will completely break the bank.

Please please let me know what you wonderful people know☺️

Absolutely devastating timing, six months ago I gave birth to a beautiful baby girl, two months ago I was diagnosed with an incredibly rare and aggressive stage 4 cancer.

I also have a 12 year old son who's at an awkward age, next year will be his first year of high school.

How do I/ what can I prepare in advance for the betterment of my children after I am no longer alive. How can I make sure my baby remembers me and knows just how much she was and is loved.

How do I remind an angst filled pre teen that he was and is the greatest thing to happen to me.

My husband will do his best but he will also be grieving and looking after our baby and pre teen alone..

Hey guys just wanted to say this, dad passed the other day, he was terminal stage 4 and was fighting this disgusting disease for 6years.

He was the strongest man I've ever known, he had the best values, left a mark on every single person he met, just such an amazing guy.
He fought it for so long, all for his family, and he was always the light in the dark, was really my best friend.
Just hard in this moment, feels so empty, just really missing this guy, it happened so unexpectedly, literally said to him see you tomorrow then only saw him again in the hospital bed, not being able to breathe with a mask on, while his life slowly faded away.
Just really thought he would never leave, haha.

Just want to say be there for the person going through this, they may enter dark places but just be there for them the best you can.
They love you so much, and are fighting this fully for you.
Love you dad ❤️

My mom is hoping to enroll in a phase 1B trial at a major research university in California. The trial requires her to drive at least 90 minutes, sometimes two hours in traffic each way at least once a week and sometimes twice a week. She is not going to be able to make the drive herself most of the time due to neuropathy as well as possible feeling sick. While I am great at figuring out logistics. I’m not gonna be able to drive for myself. Has anyone had a similar experience and what did you set up in advance to make things easier? For context, she’s 4 1/2 years into a stage four diagnosis and she’s 77 years old.

Thanks for any advice

my spouse 33 year old has been diagnosed with colon cancer during routine colonoscopy, a tumor 6.5cm on descending colon was diagnosed. underwent PET CT scan, blood test for CEA marker and biopsy of the tumor in descending colon. clinical stage is stage 3B/3C. from PET CT scan, it may be possible to touch peritoneal lining (indeterminate). im crying every single day since last few days, cannot believe its happening. have to look for sugery next to remove the tumor, but worried it may be HIPEC procedure if its invading peritoneal. can someone share your thoughts.

Hello everyone! I'm Samantha and I was just diagnosed with cervical cancer and I'm absolutely terrified. I have 3 kids, my youngest has level 3 nonverbal autism and is nearly completely dependent on me so that certainly adds to the terror.

I haven't been staged yet, I have the pet scan in 10 days but I have a 7 cm tumor that has spread from the cervix to the vaginal wall. The tumor bleeds a lot, especially when poked at and makes me cramp really bad when it bleeds. The pap smear and pelvic exam were absolutely painful so idk if that indicates it being an advanced stage? My main fear being that it's stage 4 and I'm going g to die, I'm sure a common fear. Does anyone have similar stories or could tell me more about what to expect? I feel blind here and my mind keeps thinking the worse.

My husband has been recently diagnosed with stage four gastric adenocarcinoma metastasized to the liver. He is getting his port put in in a week and will start chemo the following week. They are doing FOLFOX and Keytruda. The FOLFOX will be in a pump that he will get for 48 hours every other week so twice a month and the keytruda be given every six weeks. I want to help and support him as much as I can so if anyone has experience with these chemo regimens and can share any insight into what I can expect or how I can help that would be great or even just general chemo treatment, insight, or advice.
Also, he’s been having pain lately. The doctor prescribed him some pain medication, but it doesn’t really work that well. Is there anything else that you have found that helps cancer pain? Is there any “rules” with chemo regarding what you can and can’t do. I read something like we should be using separate bathrooms? I’m sure we will learn at his first session, but I’m curious as we have a 5 month old baby as well

Hello,

I'm a stage 3 rectal cancer patient in Scandinavia undergoing adjuvant chemo. I see everyone from the US are getting regular Signatera testing done.

Anyone here from Europe who has used similar options? Good/bad experiences with transferring tumor material from hospital pathology etc?

Anyone else had cancer for years? I've had it for over a decade and I'm so done. I am not suicidal, but I just can't do any more scans, drugs, new doctors, etc.

I don't think people realise what it's like once it goes to the brain. Before it was in the brain it felt I just had to "get through x" like I JUST needed to finish chemo, or I JUST needed to recover from surgery, or JUST needed to get to the end of radio. Then after I passed that goal I was (somewhat) myself again. Once it's in the brain it effects who YOU are. The way you think, the thoughts you have are essentially you. So now, I'm not me, I'm just the husk who pretends to be human in a social situation while secretly longing for the interaction to be done so I can go sit on the couch and do nothing.

Even when the plantets align and I feel like I can think properly and I have energy I am so scrambled that I can't even organise myself to do something. Then if I have managed to do something, for example, a while ago I tried to make a holiday video of an old trip. But if I get energy and I decide to get back to that, I can't remember where I was up to, or how to use the editing program and immediately I'm confused and overwhelmed.

I don't know what to do anymore. My oncologist straight up told me I have PTSD which was weird because they can't diagnose that. I went to a psychologist and they said I don't. I have an appointment with a new neurologist coming up and I know how it's going to go. They will ask "Okay, let's start at the beginning" I honestly can't remember what happened over 10 years ago and when I did which treatment/surgeries etc.

I don't even know what I want from this post, I'm just so done.

Please let me know how aggressive or treatable does it look?🙏🙏🙏
Biopsy::
001. MULTIPLE (4) LINEAR CORES RANGING FROM 0.8CM TO 1.8CM (001, 002) (NTL)
MICROSCOPIC EXAMINATION:
SECTION SHOWS LIVER PARENCHYMA INFILTRATED BY POORLY DIFFERENTIATED CARCINOMA
ADVISE: IHC (5-8 MARKERS) FOR FURTHER CHARACTERIZATION

POSITRON EMISSION TOMOGRAPHY AND NON DIAGNOSTIC CT:
296-370 MBq 18F-FDG was administered I.V.& Images were taken after 1hr. from skull base to mid thigh. CT scan was done for attenuation correction & localization. Images of brain were also acquired.
Finding:
Liver is enlarged in size (~22.1cm in maximum cranio caudal extent). Multiple metabolically active discrete and coalescent ill-defined hypodense lesions are seen in both lobes of liver (largest measuring ~13.2 x 8.3cm, SUV max 31.6 involving segments III, IV, V & VIII with areas of internal necrosis.
Multiple mildly metabolically active & inactive lymphnodes are seen in left supraclavicular (2.6 x 2.1cm, SUV max
2.4), left internal mammary, right anterior epiphrenic, paracardiac (1.9 x 1.0cm, SUV max 2.8), periportal, portocaval, peripancreatic, retrocaval, aortocaval, paraaortic, celiac axis and SMA regions.
Multiple collaterals are noted in abdominal region.
Left kidney appears relatively smaller in size. Diffuse increased tracer uptake is noted in dilated pelvicalyceal system of left kidney. Perinephric strandings are noted. US correlation is suggested.
Spleen is enlarged in size (~16.2cm) and shows physiological tracer distribution. No metabolically active lesions were noted.
Mild free fluid is seen in pelvis.
Brain parenchyma shows physiological tracer distribution. No metabolically active focal abnormal areas were noted.
No metabolically active lesions were seen in nasopharynx, oral cavity, oropharynx, larynx and hypopharynx.
Major salivary glands appear unremarkable. No metabolically active lesion was seen in the thyroid.
Both lungs are unremarkable. No metabolically inactive or metabolically active nodules or infiltrates were seen.
Trache and main stem bronchi appear unremarkable. There is no evidence of pleural effusion or metabolically active pleural abnormalities.
Gall bladder is visualised. No significant metabolically active abnormalities were seen in the gall bladder.
No metabolically active abnormality was seen in the pancreas.
Bilateral adrenals and right kidney are unremarkable and show physiological tracer distribution.
Stomach is not well distended. No metabolically active abnormality was seen in stomach bed.
Small and large bowel shows physiological tracer distribution.
Rectum shows physiological tracer distribution.
No significant metabolically active pelvic lymphadenopathy was noted.
Both axial and appendicular skeletal system shows physiological tracer distribution.
Urinary bladder is not well distended and shows physiological tracer distribution.

And is transitioning you to end of life care? So you switch hospitals and find another oncologist? I would think an oncologist at a top hospital would do anything they could if the person is still completely aware and looking healthy? Also would have a discussion with you about options?

I am curious do you former cancer patients -who are now somewhat clear often find that later tests reveal tremendous body damage.I had chemo and stomach cancer.

Hey guys,
Someone very close to me has just been hit with a rare cancer diagnosis. I am doing everything I can to support her, but the administrative side of this disease feels completely broken.
I’m trying to map out how to help her navigate this, and I want to understand what the reality looks like on the ground for patients and caregivers.
If you've been down this road:
- What was the biggest headache when trying to track down or qualify for a clinical trial?
- What felt like the biggest roadblock when dealing with specialists—did you feel like you had to act as your own data coordinator just moving records around?

I just want to listen to your experiences so I can better advocate for my family member.

Thank you so much for reading. Sending so much love and positive energy to everyone in the fight right now. ❤️

Hi everyone! I posted here 10 days ago when my family’s journey with cancer started. My mom was diagnosed with Stage 4 Non-Hodgkins DLBCL (GCB). Since then, we’ve had more testing come through and we’ve found that:

- She has CNS involvement in the CSF
- The lymphoma is triple hit

I feel like it’s one piece of hard news after the other. Last time I posted, it gave me a sense of calm hearing everyone else’s stories so here I am again.

Has anyone experienced this rare aggressive lymphoma? Does this look very poorly for my mom?

I live in Canada and have been trying to plan my return from India for the end of June. Right now, with all of this information, it just feels impossible. I’m so stressed and just hoping for the best as we wait for treatment to start next week.

Thank you to this community for being such a positive support in my life!