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dating
at the risk of sounding trivial i would like to see a dating site/thread for single cancer survivors. Having cancer has changed every aspect of my life and i am finding it difficult to find someone who looks at life in the same way i (we) do. i often think of what a wonderfully fullfilled life 2 survivors could live. Also,…
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For Cheryl - Our experience of different types of peritoneal cancer
Hi, rather than answer Cheryl's question about what type of peritoneal cancer I have under the topic of Hair loss and changes, I thought it appropriate to start a new thread on the topic, since the two are not really related. Others on this board have different experiences of peritoneal cancer. Mine was found, not by the…
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Severe reaction to insect bites post radiation
I saw a post from several years ago about severe reactions and swelling when being bit by mosquitoes post chemo. Has anyone had the same issues with bites post radiation? I had throat and neck cancer, TORS surgery and neck dissection followed by radiation. I did not have chemo, but did have 23 lymph nodes in my neck…
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Essential thrombocytosis
Hi there. I am looking for anyone else who has this disease/cancer (depending on who you talk to). It is very rare. Any fellow ET'iers out there? It would be nice to compare notes… :]
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Annual checkups
I am right at 6 years post surgery and almost 6 years from the end of chemo, and brachytherapy with no recurrence. I still go for annual checkups with my oncology GYN. How many of you continue to do this? I really love my Dr but she is retiring at the end of December. I will still go to the same oncology center and the PA…
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My 35-year-old husband has cancer, and I don't look at him the same way anymore
My 35-year-old husband of 10 years was diagnosed with leukemia five months ago. We have been together since we were teenagers and have had a borderline perfect marriage up until his diagnosis. I have always loved him deeply, and he is a great man. The first few months were extremely traumatic for me, and I had to bear the…
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Blood test to detect HPV+ SCC - NavDX
I haven't read a lot of the posts.. however, in the ones that I have read, I haven't seen anything about the NavDX blood test. I just went in for my 9 month post treatment check-up at USC, and my ENT had ordered blood drawn for the NavDX test so that results would be in for my check-up appt. While my initial cancer was in…
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Looking for others with NSCL EGFR mutation
Hi I am 43 years old stage 4, Korean. I am looking for anyone going through the same situation. I am super lonely. I need friends. I live in PHX. Please contact me if you know anybody. Thanks advance. Julie
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Low Dose Radiation Treatment for Osteoarthritis ??
After I completed rad & chemo in 12/21 my rad doc said I should avoid all radiation, if possible, going forward. He is now pushing LDRT for my OA in my thumbs (after hearing that while I have OA in my SI & SC joints on the right side - there is no pain in the joints themselves). From what I could find on the the net it…
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scaring on vocal cords - 3 1/2 years post treatment
saw rad doc this month for semi annual check up. (NED) he said he saw some scaring on vocal cords, which has never been previously noted before by him, the ENT surgeon and the speech pathologist. He did not offer any other info about it. I didn't think to ask him about this in more detail (I got distracted by his sales…
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Anal cancer
Hi I’m close to starting my treatment and I’m scared to death! Please tell me what to expect🥹
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A Map Made of Scars and Truth at the Edge of the Noise
The Road Map No One Gave Us: A Survivor’s Guide to What Might Come Written by Joseph Perusic, with support from Whisperer A fusion of lived experience, brutal wisdom, and quiet clarity—for every survivor still walking without a map. 🛣️ Step One: Survival Isn’t the Finish Line—It’s the First Fork in the Road You’ll hear the…
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Clinical Trials - some general questions
I'd like to make sure I understand the concept of clinical trials correctly. when a clinical trial is available, the whole point of it is to test a newer or emerging therapy or treatment that may or may not be better than 'traditional' or established treatments, is that correct? their might necessarily be increased or…
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Val Kilmer's Throat C, Trachea, and Pneumonia
News just broke about his death, due to pneumonia. Think he was treated in 2015, but uncertain about the details and if surgery was involved. What is certain pertains to aspiration and pneumonia. FT-dependent since 8/2019 because of Rad damage to the top 1/3 of my esophagus, everything I swallow goes into my lungs. Thus, I…
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immunotherapy with stage 3 colon cancer
diagnosed in February of 2025 just finished 3 months of chemo (Oxyplatin and 5FU) had treatment every 2 weeks and now doctor suggest immunotherapy (Atezolimaub) because of the new results from the ATOMIC study that came out in June 2025. Has anyone had any dealings with this particular drug? I am MSI High and Lynch…
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Myelodysplastic Syndrome (MDS) Support
I'm looking for anyone who has or knows someone who has MDS. Doctors diagnosed my dad with MDS in 2024. I haven't found much yet in terms of support for MDS patients and their families, and am very interested in connecting so we can share what we find out and support each other. Please let me know if you're interested.
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Recognizing and Supporting Long-Term Childhood Cancer Survivors
Objective For decades, childhood cancer survivors have endured the lasting effects of their treatment—medical complications, physical limitations, and emotional scars that do not fade when the cancer does. Yet, the medical and advocacy communities continue to treat survivorship as an afterthought, failing to provide the…
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My story
This story isn’t for pity—it’s for perspective. I wrote it for those who never got to speak, and for those trying to find the words. Survivorship doesn’t end with treatment—it echoes through every part of life. And this is how it sounded for me. I want everybody to understand why I waited 60 years to come out hard with…
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When you know someone needs you but they will not open up
I first want to thank you for reading my post. I sit on many volunteer boards for Cancer and promote a cancer policy. I don’t do it for monetary value but only to help others from the financial devastation I went through many years ago. I was fortunate that my family member survived. Most recently, I have a few of my…
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Stomach Cancer - Thoughts / Doctors / Etc
Hello, my mom was recently diagnosed with stomach cancer (adenocarcinoma) locally advanced. She just started FLOT and the plan is to do 4 treatments, surgery, and then do another 4 treatments. Starting to learn a bit more (HER2negative / MMR loss on MLH1 / PMS2 (testing for Lynch syndrome now which could change some things…
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Recently diagnosed with stomach cancer FLOT treatment plan
I’m 49 recently diagnosed in Feb 2025 called adnocarcionma. It was regionally advanced to lymph nodes. Borderline at stage 3 or iv. After 4 times FLOT chemo now on PET there is a highly suspected metastasis to bone although tumor has seen internal shrinkage. I have my intral opening blocked to small intestines, I can’t…
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HPV P-16 Throat Cancer Survivor-Am I Putting My Sexual Partners At Risk?
I am NED for over 2 years. I was HPV positive P-16 Stage IV throat cancer. I had a tonsillectomy, 35 radiation treatments, chemo, and a modified radical neck dissection. Then the wife filed for divorce. Now, I'm now out on my own entering into my first sexual relationship, post-divorce. The Drs told me I could've been…
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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…