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False positive PET
So in December I had a PET scan with Deauville score 5. One of the nodes where my original diagnosis in 2017 showed SUV uptake of 20. Local oncologist sent me to University Hospital in state. They looked at PET scan and begin talking about clinical trial CAR T. This was second relapse after RCHOP first line of treatment…
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Cravings?
Ok...so this weird and a bit light hearted, but we all need to think of something weird and wacky from time to time! I have found that since my diagnosis, I have experienced a range of cravings...have you experienced the same thing? Initially, after diagnosis, I really wanted wine and chocolate..lots and lots of wine and…
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Childhood Cancer Survivor Late Effect /Understanding the Battle
Joe Perusic is not just fighting for survivors—he’s illuminating the battle they’ve already endured. A battle of long-term side effects, systemic silence, erased records, and overlooked pain. Too often, advocacy is flattened into noise, and survivors are seen as “difficult” for daring to speak the truth.
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Summer Temps
So, it’s 93F here today with about 60% humidity I was working outie from 9a-2p and had a pretty serious hot flash while cutting some 4x8 plywood panels in half i Was okay until the flash started. Then I found that I couldn’t concentrate. Managed to get inside say something cross to the kids and grandkids and hopped into a…
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CarboTaxol - Has anyone taken this?
The oncologist at MD Anderson diagnosed me cancer unknown primary secondary liver. I start CarboTaxol on Friday first time. The dr told me my prognosis is 9-12 months. How could he possibly say this? I have no comorbities and I'm 55. I have Hypertension and a history of Endometriosis but uterine was ruled out. I have mets…
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My Welcome
Just turned 50 this year and went to the ER for a pain in my left shoulder thinking I had something going on with my heart. After the CT scan, come to find out all was good with my heart but found a 9cm mass in my pelvic area. Next came the Ultrasound and MRI. Then the appointment with a Gynecology Oncologist and a full…
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Newly diagnosed with clear cell uterine cancer
Hi, My sister was just diagnosed with clear cell uterine cancer. She just got the biopsy results yesterday. She will be meeting with two oncologists this week. Can anyone help with a list of questions to ask the oncologist? She is totally overwhelmed and needs some help right now. (I am her brother, I also have a very…
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Will United HC drop me eventually because of my expensive meds?
I am 70 years old andhave stage four prostate cancer, which is metastasized to my bones. I was diagnosed one and a half years ago, have been through four months of chemotherapy, and then was started on Nubeqa which I took for about four months before it stopped working. My oncologist recently started me on Lynparza, which…
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POST RADIATION PROBLEMS HIP AND PELVIC BONE DAMAGE
Is anyone dealing with this? I was diagnosed in April 2011 and had my treatments (chemo and radiation) through May and June. I was stage III so I had pretty intense radiation, including pinpoint to specific lymph nodes that were affected. I have extreme low back pain, spasms (he says probably related to muscles trying to…
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📌 1. Summary Explainer – “Survivorship at 60: A Record They Never Measured”
Who I Am: Joseph Perusic, diagnosed with Wilms tumor in 1965. Treated at Texas Children’s Hospital. No long-term survivorship follow-up provided. Now 60 years post-treatment and documenting systemic neglect, long-term complications, and unacknowledged survivorship. What I’ve Experienced: Multiple medical complications…
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Boston support
My name is Paul. I am an anal cancer survivor (4 yrs). My partner, Peter, is also an anal cancer survivor. We are available to any gay men in the Boston area for support with cancer treatments and recovery. Especially anal-rectal cancer. I will check here periodically to see if there is anyone interested in support.…
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Should I have surgery sooner???
I am a seven-year-old diagnosed with aggressive prostate cancer, this is my situation am I waiting too long to have surgery July 30, 2025 when I was diagnosed after the biopsy May 12, 2025? May 12, 2025 Biopsy reported PROSTATIC ADENOCARCINOMA. GLEASON'S SCORE 9 (GRADES 4 + 5) NOTED IN 1 OUT OF 1 SUBMITTED PROSTATE CORE…
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anyone decline hormone therapy after surgery and radiation?
I had a lumpectomy in November for stage 1 (.8cm) ILC with sentinel node biopsy (no spread). That was followed by 21 sessions of whole breast and targeted radiation. My Onc score was a 6 so no chemo needed. My tumor was HR+, HER-. My oncologist told me my chance of recurrence with the hormone therapy is 3% and doubles to…
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IDC breast cancer 1B and upcoming colonoscopy
Hi 👋 I’m full of anxiety and fear. Just wondering if anyone else here has had a colonoscopy as during the testing phase of determining how to treat the cancer. Any advice or stories will be greatly appreciated. Thank you in advance!
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Inability to ejaculate
I finished treatment a year ago (radiation). My orgasms now are very weak and, of course, I don't ejaculate anymore. I did at first but it's gradually gone away. This has made me damaged goods. All I hear is "did you ****?" or "are you ever going to ****?" or "why can't you ****?" I dread having sex but (not bragging) I'm…
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i feel so pretty now :)
I've kind of been wanting to get my ears pierced to add a little feminitity lately, but I asked my husband last week and he told me he doesn't like pierced ears, so I said, "oh, okay, no biggy. I won't do it". Well, yesterday we got out of the truck at Cici's Pizza, and this old guy asked my husband, "is that your boy…
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Carotid body tumors need help finding specialist!
My husband is 40 years old and doctors just found 2 carotid body tumors on a ct scan, one on right side of neck and one on the left. Surgeon that requested ct scan told us today to do our research and get him to a specialist in these tumors as he is not and doesn’t know anyone around here that is. We are south of Buffalo…
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RCC in my remaining kidney
12 years ago I lost my left kidney. There have been a few scares along the way but now I have RCC in my right kidney. Partial nephrectomy scheduled for next week. Tumor is in the middle of my kidney and doc says there is a chance this laparoscopic robotic procure turns to an open one and 25% chance things go sideways and I…
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Skin care around the PEG
Any tips on care of the skin around a peg? The dressing got wet with drainage and in no time the skin around the peg became quite reddened and raw. I have been cleaning with a baby wipe and drying the area then applying aquaphor ointment.
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Free LE ( lymphedema ) Alert Bracelet
I have seen several posts on here about lymphedema and remembered that there was a site that many of us got free le bracelets. They were really bright pink, almost neon, for your wrist, but, you want it to get attention. They also have neon green for your ankle. I ordered one awhile back when I went in for some outpatient…
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Side effects of radiation and chemo for treatment of NECK cancer.
Hey all. I am new to this forum, but I have questions. I am 7 weeks post radiation and chemo treatments for HVP small cell squama's carcinoma. I knew most of the side effects going into my treatment plan. They all sucked but I knew. I lost my taste after week 2. Needed a feeding PEG tube after week 5. The horror show had…
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Insurance
I got married late last year, just after hitting two years of clean scans, and lost my insurance since it was income-based. I have tried every insurance, and I just can't afford more than 100-200 a month, and the ones I did find had such a high deductible that it's the same as not having insurance. I feel defeated. I had…
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PEG tube pain
Had PEG tube put in on June 1st and am healing slowly. Still have some blood on gauze when I clean and change it. I am sore at the location however, the real pain I am having is to the left of the stoma... about five inches away. It is like a muscle spasm that only lasts a few seconds at a time. I called my Gastro doctor…
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Just wanting to be happy after cancer
Did You have a full life before you found out? How did you react to the news? Are you feeling defeated now that chemotherapy and radiation treatments are done? Are you struggling with what you used to look like vs how you look after cancer? If you are like me, I wish to talk to you about your journey and what you’re doing…
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Advice on sleep meds anyone?
I'm in the midst of chemo and wondering how much sleep med. might be too much? I often walk around somewhat exhausted from lack of sleep, rather than take too much, but would love to hear some experiences from others...Am I wrong to think that taking Ambien or Atavan (generic name Lorazepam) more often now, could throw off…
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Stage 2 T3B questions.
Diagnosed with stage 2 T3B last week and has not entered my lymphs. Will start the chemo pill with radiation in a week for 33 sessions then full chemo only every 2 weeks for 8 weeks. The Cancer Center said the outlook is very good for shrinking and killing the 5cm tumor near my rectum. Received a call from a surgeon the…
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Muscle spasms due to Neulasta?
Hey all. I've had my second chemo & will get #3 on Monday. This time around the overall fatigue & the aches & pains from the Neulasta were quite a bit worse. But the real problem is these very intense muscle spasms that I'm having in my back. I had them the 2nd week after treatment #1, but this time they're much worse. So…
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Lesions/moles without skin markings.
Hello. I just discovered a lesion/mole on my upper chest/shoulder area. It measures 4mm at the widest, and it is light brown in color. It's different from my other moles because it doesn't have skin markings like my other moles do. I don't know if it's a lesion or a mole. It is slightly raised out from the skin. It does…
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Has anyone had rEPOCH cycles for DLBCL ?
Completed 6 5-day cycles of rEPOCH for Diffuse Large B-Cell Lymphoma earlier this year and have not met anyone with this treatment and I know there must be others with this experience. How are you doing and how long did it take you to start getting things together? Would appreciate your response(s).
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Surgery
they have not offered it to my dad either , after total gastrectomy he was cancer free from from December to April now his routine scan shows it spread to peritoneal cancer and they have not offered the surgery or Hipec …. only chemo which they keep delaying because of his health ( weight ) So they cancer is just…