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My journey into my worst fears
My journey into the unknown. About 45 days ago during a routine exam it was discovered that I had polyps in my colon, which isn’t abnormal for a person as young as I am. My PCP sent them to a lab for a biopsy. I get regular checkups so I wasn’t too concerned. About a week later I received a call from the doctor saying that…
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After TORS, de-intensified trial of 3 weeks rad
Hi all. Massive thanks to you who have shared your experience and helpful tips about getting through your ordeals. You have shown me what patience and strength is. I'm here for support, but also want to be a resource for anyone going through something similar, as I seem to be a kinda niche patient with this early-stage ssc…
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LGL Leukemia
My husband was diagnosed with LGL Leukemia 14 months ago (Jan, 2012). We had just lost his Dad to Multiple Myeloma four months previous. It's all been overwhelming. I would like to reach out to any LGL patients, caregivers, spouses etc. It's been very difficult. We thought we were on the right track with Methotrexate and…
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T-Cell LGL treatment
In 2012 I was diagnosed with MDS, but later on they diagnosed T-Cell LGL. At one point, I needed a blood transfusion every three weeks. I was put on methotrexaat for 7 months without any effect. After a consult with Professor Schouten in Maastricht, the Netherlands, I was put on neoral ciclosporine and, to my surprise, it…
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Mucoepidermoid Carcinoma
Hi there! I am new to this site and beginning my battle with Mucoepidermoid Carcinoma (of the minor salivary glands in my throat). It is very rare and I am hoping to find others who are in the same situation, either past or present. I started chemo last week and seeing where that takes me! I am a 31 year old female and…
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Long-term hair loss
I had my 2-year survival anniversary on Mar 1 2002 (yeah!). I am still suffering from hair loss due to chemo. I have tried the Nioxin products and have checked with my oncologist who says that she has never seen hair that has refused to grow back as mine has. My first chemo round was adriamycin/cytoxin and the second round…
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Port - take it out or not?
My last chemo was 6 weeks ago, I want this port out. My Dr said she recommends leaving it for a while but I could have it out if I want. It bothers me, I’m always bumping it and sometimes it itches. Should I be cautious and live with it? I choose to think I am done with all this and the port is not needed anymore, so I…
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New Member
Hi there. Have been lurking for a few days and deciding to register as a new member. I was recently (August 2023) diagnosed with tonsil cancer. Became aware of a problem in late July when I noticed what I assumed were swollen glands in the area under my right jaw. Was able to make things happen pretty quickly thanks to my…
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Confused! Recently diagnosed with prostate cancer
No prior health issues at 67 years old, with PSA at 4.3 My urologist ordered MRI which showed "suspicious areas" He then performed trans-rectal biopsy which confirmed 3 samples out of 17 having adenocarcinoma. Gleason 3+4=7, 3+3=6, and 4+3=7 respectively. Also one other sample having HGPIN. After consulting with him, he…
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Alone
So recently mom went to the ER because she started having panic attacks and of course unknown fears etc. My father is finally set up with hospice care and now I know he will get the assistance he needs when it comes to his health and "quality of life" So tired of hearing that saying. Anyways, I havent updated you guys…
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Decision time on salvage treatment ..i am torn
Well, the first time should’ve been easy do surgery and get this crap out of my body but I chose the other radiation and now I have a reoccurrence.so I’m a candidate for both salvage surgery. Also cryotherapy and radiation radiation is out of the question. I’m not even thinking about it didn’t work the first time I don’t…
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52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer
I’m in the club no-one wants to be in as a newly diagnosed cancer patient. I’m a former smoker who quit daily 1/2 pack a day habit 19 years ago but still smoked socially up until diagnosis about 4-5 packs a year. Otherwise healthy and on no medications. My details are a mildly painful mass in my left neck just under…
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Help with decision for surgery. Mom’s triple negative and not sure about surgery.
Please help. My mom was recently diagnosed with triple negative breast cancer. She’s 86 and in good health. She’s starting to waiver on having surgery to remove the tumor or mastectomy. I think she’s afraid and also tired of all of the prep work for surgery. Can anyone offer any advice on how to encourage her to at least…
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Robotic prostectomy Vs Radiation
Hi, My husband is 50 years old and is diagnosed with prostate cancer with gleason score of 6. The biopsy report also shows perineural invasion shows cancer spread in 15 out of 17 cores. The urologist initially recommended monitoring but when we questioned regarding perineural invasion and risk of spreading the cancer…
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cold cap for chemo
Does anyone have directions for making a cold cap for chemo. I've looked on Amazon but don't think those featured will help me avoid hair loss.
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Hair loss with chemo
It seems like I had been told that hair loss in not usually a side effect of chemotherapy drugs in the treatment of colon cancer. Yet, lately, my hair seems to be getting quite thin. I am on 5FU + Oxaliplatin + Avastin. Has anyone else experienced hair thinning or hair loss from these drugs? I'm wondering if my hair…
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Radiation Update
I have now undergone 12 treatments my 13th is tomorrow, I find myself counting the treatments till it's over. It's not too bad, the hour drive there sticks to only have treatment for 10 mins. i am going through Jan 2024. As of Thanksgiving I began to have some problems with eating, this morning i ate some scrambled eggs it…
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Tattoo Artist Wanted!
I saw my PS Monday. I was so hopeful he would have great ideas for whipping these disappointing girls into shape. I left very upset. He acted as though, now that its 5 months since my implants were put in, that we're 'done'. I made it clear that I don't think we're 'done' and while he was whipping out his camera for my…
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Effects of IMRT pelvic radiation for uterine cancer
Have been told that IMRT pelvic radiation has fewer side effects than EBRT but am still wary and need to hear from those who pulled through pretty well and those who haven't. Please indicate whether you ALSO had high-dose brachytherapy as well and whether you were treated at a major cancer-treatment center. Can you comment…
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Loved One Fatigue?
Hi everyone. I hope this finds you well. I was diagnosed with Stage 3 rectal cancer in November 2022 at the age of 40. They also found a rather large tumor in my sigmoid that wound up demanding emergency surgery. 6 weeks of radiation/chemo, 3 major surgeries, and 8 rounds of chemo later I'm on the cusp of potentially…
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Oral chemo - xeloda
Anyone had any experience with oral chemo xeloda ?? I welcome any suggestions, ideas, outcome success stories if any, advice, side effects (specifically with regards to psychological). I want to know the good, the bad, and the ugly !
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Neuropathy of the hands after treatment
Hello all. I start treatment ( chemo and radiation)for throat cancer next week and I have some questions. I play guitar and a few other stringed instruments. The doctor said I may lose the ability to play due to neuropathy. He also said I will probably lose my hearing. Is this common? Has anyone had that happen? How long…
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Gaining weight after chemo
My dad is struggling to gain weight after his chemo & pancreatic surgery (he had the Whipple procedure). He is deemed cancer free, is eating all the time but cannot seem to gain weight. He is eating lots of protein, drinking an ensure, adding calories wherever he can and still cannot gain. He is somewhat limited in what he…
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Stigma and Strides
Stage 4 small cell lung cancer here. Wishing everyone out there hope and hugs! Lung cancer is a shamed cancer that inevitably leads to the question "do/did you smoke?" Then silence if you answer yes as if to confirm you're deserving of such an awful diagnosis. Such a shame as all cancers suck and there are many causes. My…
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man i’m losing it right now
i know i got to pull it together but can’t seem to just get up and do it . i just need to stop it and numb up and keep going
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Whole Brain Radiation
Hello, I was diagnosed SCLC stage IIA back in June. Did 6 rounds of Etoposide and Carboplatin along with 33 days of radiation. I had scans last week and all was clear. Doctor is now wanting me to do 10 days of whole brain radiation as a preventative in case there are any cells hiding in the brain. I am a 57YO female.…
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Multilocular cystic renal neoplasm of low malignant potential
They found a bosniak 2f incidentally during scans. I am only 32. I chose to have it removed rather than following it. Turns out it was multilocular cystic renal neoplasm of low malignant potential. I am only 32 years old so it is freaking scary. stage 1/grade 1/2.2cm My surgeon basically told me it’s not “really” cancer…
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Best cancer center?
Hi everyone: My husband was diagnosed with early stage hpv + throat cancer about a year ago. His treatment (surgery and radiation) was successful at first, but about a month ago we were told his cancer had come back, both at the original spot and in several lymph nodes. We realized we had to go for the best care possible…
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10 years and grateful
Hi, I used to be on this board every day. It was a lifeline. I wsa very frightened and hurting. Anal Cancer put me through a lot too. But I am happy to say even though my cancer was late stage, we beat it back with the protocol treatment, chemo and radiation, simultaneously. For me it was brutal. I am alergic to Sulfa and…
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Open Partial Nephrectomy Complications
I had a open partial nephrectomy back in May of 2023. Very invasive. Had a rib removed and my kidney had to be reconstructed. I had a rough recuperation but slowly made progress. After 12 weeks I was back to work part time and after 5 months back full time. The problem I am having is that shortly after the 6th month mark I…