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10 year survivor here
Hello all it has been some time that I have been on. I remember 10 years ago being told that I had stage 4 cancer. I turned to this group and meet a lot of wonderful people, that help me in the worse parts of my journey. i Hope the format helps you as much as it helped me.
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Away from forum since Oncologist crushed my hopes and spirit
I posted about this a while back, it's taken me since March 19 when I visited him last to be able to function, I was a zombie 2 days. Felt totally like giving up. People I talk to say it seems like I've given up. It hit me so hard the way he spoke to me, his demeanor and everything that day. My scan looked worse and he…
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Feeling down and slightly depressed
Good Evening All, I finally finished my about me page so if anyone wants to see my story, its there. Today though I just need a space to rant and ramble about my current mental and physical state. I have noticed the past few Chemo Treatments I have had what seems to be intensifying side effects. For the past 3 treatments,…
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Happy Passover and Easter
This is a true story, that happened at our house. The premise for those who don't know: Matzo is known to be constipating, and we're facing a week of it! Enjoy Happy Passover and Easter to all! Alice April 11, 2013: The truth about matzo: I went to our bread drawer today, looking for a simple cracker (or yes, even a…
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Time For A Chuckle
Laughing is so good for the soul. I saw a post on another site that made me roll. It is my new motto, lol. I wanted to share it with you guys in hopes it gives someone else a much needed chuckle and some inspiration. It read: When it's time to fight, you fight like you're the third monkey on the ramp to Noah's ark....and…
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Time For A Chuckle
Laughing is so good for the soul. I saw a post on another site that made me roll. It is my new motto, lol. I wanted to share it with you guys in hopes it gives someone else a much needed chuckle and some inspiration. It read: When it's time to fight, you fight like you're the third monkey on the ramp to Noah's ark....and…
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That time of year again.....
So I just went through the frantic mess that is the blood work/CT scans required for the routine check ups. The complication I have now with doing my CT scans is having to have blood work done first because of the high blood pressure medication I'm on now. So I go into my doc's office yesterday morning to get my blood…
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Curiosity Question
My oncologist has said that the highest chance of recurrence for me as a stage iv colon cancer patient is highest in the first two years following diagnosis and then goes down through five years and then sharply goes down after that. I can’t seem to find it anywhere so I thought I would ask here. Does anyone know what that…
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Ostomy Supplies
I'm sure this has been brought up before but here I go. I've used the same ostomy supplies and brand for the over five years I've had the illeostomy. I've had very few problems with just the occasional accident or blowout. I'd go almost a year beteween these incidents. Lately, for the last couple of months it's hit or…
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Oxaliplatin Use
I am no expert when it comes to cancer but I have read alot of history on this website and I try and stay away from the internet. I have a question which I am sure some of you may have the answer to from you personal experiences. My husband was diagnosed with MR Stage: T4 N3 which began our journey in August last year. He…
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Blacking Out from Follow Up Chemo
My husband is in his 4th treatment of mop up chemo. On April 4th which was last day for 3rd treatment he blacked out in bathroom hitting his rib cage either on porcelain sink or shoving his device which holds chemo bag for his port into his rib cage then falling to floor hitting his head which ended him up in emergency…
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Partial Colostomy
Hi. Been wondering why i haven't visited the page for quite sometime. We'll guess what local recurrence is back. They found new tumor or mas in my rectum. And walla i am at the hospital right now. I had my surgery last april 8 and i am still at the hospital recovering. I have difficult coping up with the bag. I don't know…
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One More "Free" Week
I drove down to SC yestereday and was geared up and ready to knock out my chemo session this morning. Once there, they drew blood for labs and took my back to my chair. I was unde my favorite furry blanket and ready for a good nap but it was a "no-go". My "baby" blood cell count was right on the borderline. My oncologist…
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(CAPEOX) capecitabine-pill vs. 5FU IV
Looking for anyone that has input on treatment with CAPEOX in pill form vs. 5FU over two day period via a take home pump. The Med Star Georgetown University Hospital treats with the CAPEOX pill due to the studies that have shown it to be more effective that 5FU and they only treat 3 months vs. 6. My husband would much…
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Have you wanted to end treatment?
I am growing concerned with comments Jim has been making lately. He said he is getting tired of all of this and see's why people end treatment. I am beginning to wonder if he is thinking of stopping treatment. I don't know if it is his birthday blues (he turned 56 today) or he if he is genuinely has had enough. This ulcer…
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There's always something new on the horizon
I came accross this article about the potential of ultrasound to treat colorectal metastises. I post not suggesting this is a viable treatment, but just to suggest that there are hundreds of treatments under examination and perhaps buying a few extra years of survival will help us to see new and hopefully better…
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The Meaning of Suffering
I'll try to reign in the philosophical babble that I do. Understanding I can't really be helped right now. Mental illness and cancer is a wicked cocktail. Along with gastroparesis and tinnitus among other things. I'm scheduled to have surgery on May 9th. Having all of or parts of my pancreas, spleen, small intestines,…
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Bowel obstruction think we are at the end of the road
So my husband was diagnosed about 19 months ago stage iv Mets to liver lung peritoneal lining. Handled fulfox,fulfuri, tace procedure x2, an unsuccessful couple of months in a clinical trial, an oral chemo capcitamine(?) then lonsurf with avastin and most recentlynback to avastin, oxcal(?) and irennican. My spelling on…
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3 months of Chemo vs. 6 Months
My husband was diagnosed with Colon Cancer stage 3B. Specifically, T3 N1 M0. 1/17 nodes was positive. Our Oncologist has proposed 6 months of Oxaliplatin and Fluorouracil (5FU FOLFOX). After reading a publication from another Cancer institution that prescribes Capecitabine (CAPEOX) by pill in place of theFluorouracil (5FU…
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5 Years ++ Stage IV Survivors
Last night when I got ready for bed, I noticed the upper part of my left foot and toes seemed numb or asleep. I have never felt this or noticed it until last night. I have had surgery on my right foot and toes and deal with slight numbness in the right foot. The left foot was a different story. I guess good ole' neuropathy…
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Immunity Therapy Clinic, Lonsurf, whats next?
My husband is trying to decide the next plan for Stage IV colon cancer. The doctors next treatment plan is Lonsurf. There wasn't too many recent discussions about Lonsurf. Among other treatments he is looking into Immunity Therapy Clinic in Mexico. It all sounds good, looks good, but it is also probably too good to be…
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Am I Doing The Right Thing?
I am still in such deep thought at times about this mop-up chemo. I am not quite 8 weeks out from my liver and colon resection. I am scheduled to start the first of 7 Folfox cycles left in my treatment on Tuesday. I keep telling myself "you got this", but there are times, I'm not so sure. When the path came back on the…
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Manapart
I've been thinking about you and wondered how you were doing. Is surgery still scheduled for May 9th? Kim
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I read an interesting article today.
I often come to this site when I am really down and depressed. I need to see something positive from those who are going through what I am going through. I am stage IV. And I wanted to share infromation about an interesting article that I read today on medicalnewstoday.com. "Cancer: 'Off-the-shelf' stem cell treatment…
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Severe back pain —on chemo?
Hello Crew, I developed severe upper back pain after the 3rd cycle of Folfiri of avastin. MRI is fine and I suspect it is related. They feel that my muscles can get very tighT, produce an occasional spam, enter a contraction but can deconstruct tgemselves. The pain can hit 8 and as soon as it goes above 6 or 7 Percocet is…
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Saw my onc yesterday
I had the follow up to my last round of chemo that I didn't complete (again) due to my magnesium levels. The magnesium is low normal not and incresing so that should be good. My CEA is up by .2 so he's not worried about that at all. And my kidneys are still maintaining themselves. They're not great but not terrible and…
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Elevated Chromogranin A, brand new diagnosis
Input requested. My spouse had a recent colonoscopy and biopsy results came back, "neuroendocrine cancer. " After Chromogranin A level came back 195, his (new) Oncologist repeated lab and it came back LOW. Today, Oncologists repeated blood work. Husband has family history of prostate cancer (father) and pancreatic cancer…
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I had a bit of a crazy week
I'm not sure if anyone else has had an experience like this, so I thought I would share. This past Monday I had about 20 minutes of what felt like something crawling around in my chest. I've had PVCs before (your heart beats a little out of sequence or something, feels like it skips a beat) and I thought it was probably…
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First Available appt in May
I was accepted as a patient at MSK. My appt is in May. Does anyone know if that "your on the call if appt becomes available" list actually happens? That seems so long. I know that my cancer grows slow, but still. I don't know if I should be happy to have the extra 5 weeks to be "normal", or worried that it is growing and…
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Neuropathy issues
Since finishing FOLFOX, I’ve had some mostly annoying neuropathy symptoms. My fingers and toes tingle if they touch anything and sometimes the skin feels tight, like when you have a healing sunburn. It’s not truly painful and it doesn’t wake me up at night. However, it does make doing things with my hands difficult, as the…