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Keeping cool in the summer on Oxaliplatin
Last time I did Oxali was in the fall to winter so with the cold sensitivity I had to worry about keeping warm, but that was manageable. This time I am having the toughest time because it is 90 degrees out every day, but you can't stand too close to the air conditioning or drink or eat anything cold. How do you all stay…
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Squamous Cell, Stage 4- Surgery / Radiation?
Hi, hoping to connect with Squamous folks stage 4 that were not eligible for surgery. I did the chemo and now on immunotherapy. Was told initially they might consider radiation but now that I have had a good pet scan (lymph nodes are now not active) oncologist is stating that I am never eligible due to original cancer…
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port removal
I am having my chemo port removed on Monday after two years. Anyone had this done? What can I expect? The nurse told me that it basically is "the reverse of when they put it in," which isn't very helpful.
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Long-Term Hodgkin's Survivors- Late Effects
I have been a member of this group for about 10 years. My user name should now be "50 years and counting!" I just want to reach out to my fellow long-term survivors to find out how you are doing. I'd like to know if you have had any of the "Late Effects" from the kind of radiation and chemotherapy that we received decades…
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Ampullary cancer
I was diagnosed with ampullary cancer in July 2024, had a whipple procedure August 2024 and then 12 rounds of chemo. Are there others out there with a similar treatment plan?
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Breast Cancer 10 years later
Well it’s been a long time since posting. I was diagnosed 10 years ago in June 2015 with Stage IIIC1, High Grade 3, 50/50 Mix EAC and USC. I was just diagnosed with Breast Cancer. For several years every 6 months I’ve gotten Mammograms, Ultrasound and MRI’s. And 2 large tumors emerged since December. Diagnosed with…
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Survivor
My name is Linda and I finished treatment with chemo and radiation last October, my problem is I am having difficulty living with the new me and the thought that it will come back
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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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Post Radiation/Chemo - Pre surgery consideration? / Post severe foot neuropathy
I was diagnosed with stage 3 colorectal cancer in Feb-2024 with the cancer extending into a few lymph nodes. Did five weeks (25 sessions) of radiation & oral chemo then 16 weeks of chemo (6 hours in the chair and 2 days connected to at home pump infusions). The tumor shrank 98+%, no longer in the lymph nodes, had a…
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FOR IMMEDIATE RELEASE
Back by Popular Demand: The Original Mutation Human Being Joe Perusic Reclaims the Blueprint of Survivorship Spring, Texas — July 14, 2025 Joe Perusic, long-term childhood cancer survivor and Director of Survivor, announces the return of his groundbreaking identity framework: “Original Mutation Human Being.” This concept,…
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HER2 POSITIVE SMALL TUMOR
I underwent lumpectomy for what was thought to be a 1.2 CM tumor but only 4 mm was cancer. It was HER2 positive and I have been offered chemo with Herceptin by one doctor and radiation only by another. Not sure what to do. Does anyone know anyone who used Herceptin only without the chemo? Thank you.
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Endometriod Adenocarcinoma Recurrance to the liver
Hi everyone. It’s been a good long while since posting here. I was diagnosed with endometriod adinocarcinoma Stage 1 Grade 1A eight years ago in 2017. That May, I had a complete, Davinci robot assisted, hysterectomy. I remained NED for 6 years. It wasn’t until we went 1 year in between checkups that it was discovered that…
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Treatment for HER2 Positive Small Tumor?
I was wonderinfg and hoping that someone might have thoughts for me about treatment for HER2 positive but very small breast cancer tumor? I had a mastectomy 1 week ago for what was originally diagnosed as complex DCIS, but the biopsy just came back as invasive, ER positive, PR negative, HER2 positive tumor along with the…
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Diagnosed with serous endometrial carcinoma early June 2025
Hi all, I was diagnosed with serous endometrial carcinoma in the first week of June, 2025. There was a normal amount of time between biopsy, pathology, referral to a Gyn oncologist and meeting the highly recommended and qualified surgeon. But there was a glitch in the before hysterectomy imaging, so I’m now scheduled for a…
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Living Well With Cancer
I have developed a nine point plan that I follow faithfully. This plan has enabled me to feel healthier (both mentally and physically!) at 69 than at any time since I stopped playing hockey at age 28. Following these eight steps has made a dramatic impact on my physical and mental health. 1) Get the best medical care…
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Acute cholinergic syndrome on Irinotecan
Has anyone experienced this? I had a pretty intense adverse event involving flushing, sweating, disorientation/dizziness, low heartrate and hypotension during my first infusion that was controlled in the clinic with Atropine but recurred periodically for the next 12 hours at home. Going in tomorrow for my next infusion and…
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ROOKIE
After a couple of months of diagnostics and strategizing a treatment regimen, I walked into the chemo lounge for the first time. I’d already had a couple of radiation treatments and was starting to catch on to how this was gonna go. I approached this whole thing naively and with overconfidence in my abilities combined with…
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They Don't Get It***
Do you have someone in your life who, unfortunately, when you speak with them, makes you feel worse about your condition or your life in general? It's tough isn't it? Instead of providing support, encouragement, and a kind listening ear, their words just create anxiety, panic, and sorrow about the current conditions of…
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Survivorship Isn’t Just Post-Treatment
It’s a Lifelong Reckoning Psychological misunderstanding: It’s not “mental illness”—it’s decades of being misunderstood, gaslit, and blamed without language to defend yourself. Family fallout: Cancer doesn’t just hit the patient—it nests inside every corner of the home. Siblings sidelined. Plans canceled. Love buried under…
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Vaginally stenosis
No one has talked about vaginal stenosis which is scar tissue from the radiation. This made any kind of penetration painful. My radiologist gave me vaginal dilators in different sizes.
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cbd topical cream
Has anyone tried cbd cream to help manage nerve pain, and did it work?
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Erections
I am four years out from radiation therapy for prostate cancer. I am unable to achieve an erection sutable for intercourse. I am able to obtain ejaculation by watching my wife and self stimulation. What is the experience of others regarding this issue?
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My wife won't kiss me
Hello everyone, I am 64 years old. Excellent health. 1 month ago I was diagnose with tonsil cancer with HPV-16. I have been for 4 weeks on 100% strick diet, no sugar, no processed food and maximum 20 grams a day of carbohydrates. no radiation no chimo. My wife is very supportive. But I notice that when I tried to kiss her…
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Looking for Honest post-surgery ED expectations / feedback
Hi members- I'm new and this is my 1st post…I had DaVinci assist radical prostatectomy…I am 14 months out and still no firm erections even though I check off all the boxes on someone who should be up and running by now (healthy, not overweight, 57 at time of surgery, doc said both nerves were spared, non-smoker, not a big…
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GIST and Gleevec
Does anyone have or had Gastrointestinal Stromal Tumors?
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And so my Journey Begins . . .
My journey is about to begin so I figured I'd set it down and tell it as it goes. As it goes I will update and try to answer any questions. Symptoms: In June 2022 I had my yearly physical and my blood work came back as good so no indications of anything. Felt great. Started August with a sore throat and a full left sinus.…
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"Baroreflex" Failure" A Rare Late Effect Of Radiation Treatment
I came across this article written by a Gentleman on another forum about late-term post-radiation effects which can give you a condition where your blood pressure swings wildly from high to low or low to high without notice. There is no cure but some control can be realized with meds. I just wanted to let the group know…
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Late Effects
The Double Standard Active cancer? You get support, funding, visibility. Late effects? You get ignored, dismissed, or used for research without care. Survivors like me are outcasts until we’re useful—and guinea pigs when we are. I’m Done Being Used I am not your data point. I am not your anecdote. I am not your…
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severe mood/endocrine/mental health effects from steroids?
New here- my husband was dx fall 2023 with stage 4 oligometastatic CRC (mets to liver). He is (thank God!) NED as of a couple months ago, after 4 months of CAPOX, LAR/hai pump install, HAI pump chemo + systemic irinotecan, ablation, 4 more months of irinotecan, liver resection, HAI pump replacement. He is now on cleanup…
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Lung cancer survivor
Diagnosed with NSLC in 2019, staged 3d . After oral chemotherapy, Alecensa to shrink cancer spread, followed by radiotherapy , chemotherapy and immunotherapy I have been cancer free for 6 years now. Stay positive and hopeful.