Never able to be cured....I need u guys more than ever

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Lee
Posts: 6005
Joined: Sun Apr 16, 2006 4:09 pm

Re: Never able to be cured....I need u guys more than ever

Postby Lee » Thu Feb 13, 2020 5:03 pm

The quick story regarding Sleen, she had too many tumors to operate on, surgery was not an option. They took a couple of her tumors out, did some interesting things to them, then put them back inside of her. Her body started to attack all the other tumors except for one in her lung. At some point, they surgically removed that last remaining tumor. She has been NED ever since. 5 yrs plus. For a while, Joan Lunden (spelling) would interview her, her family and her doctors on her follow up care.

There has been some interesting progress made in the last few years. I can see where finding a cure for cancer (or at least some of them) could be just around the corner.

For perspective. Back in the 1980's, colonoscopies were pretty much new, I believe Ronald Regan was the first president to be scoped. A good friend of mine, her dad was diagnosed when he was 46-47ish in the 1980's. The first 25 pound he lost, he felt great, it was the next 25 pounds that got his attention. Guess they did exploratory surgery and found his cancer. He woke up with a bag and was told he probably only had 6 months to live. Limited options for chemo then. He died with the first 6 months.

When I was diagnosed back in 2004, FOLFOX was experimental. My Onc was able to get me on board with a trial. For 3-4 mths, I was her only patient getting FOLFOX until the FDA approved it. Avastin was another new chemo drug. They were games changers during that time. I was stage IIIC, was told I only had a 33% chance of being alive in 5 yrs by most medical professions. My surgeon was the only one who told me my odds were probably higher, around 50%. I held onto those words.

Best advice I can give you. Do not take surgical advice from an Onc. Get surgical advice from the surgeon. AND do not take chemo advice from a surgeon. Get chemo advice from the Oncologist. Getting a 2nd opinion is ALWAYS a good idea.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Trying
Posts: 228
Joined: Sun May 13, 2018 10:11 pm

Re: Never able to be cured....I need u guys more than ever

Postby Trying » Thu Feb 13, 2020 7:44 pm

Thank you so much. I really appreciate the summary Lee. You all are so supportive and hopeful.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

Mohrfamily
Posts: 242
Joined: Tue May 22, 2018 4:04 pm

Re: Never able to be cured....I need u guys more than ever

Postby Mohrfamily » Fri Feb 14, 2020 5:11 pm

Trying wrote:Today my dr. Told me that he reviewed my file for the second time with a board of oncologists and they all agree I will never have surgery. He said at the beginning he thought it was possible as the oxy knocked out 8 tumors but after a year and half of chemo and how tumors are and lymph nodes are responding it will Never happen surgery would kill me as it's through the lymph nodes and lymph nodes travel through the blood stream and they would basically have to take put all my blood and lymph nodes. ???? I haven't grown new cancerous lymph nodes. Please know we are getting our files out to other major hospitals in the usa. Please don't advise I go to a certain hospital because we are already going to be sending to the top ones including usa. Dont really want to hear "sorry to hear" because I don't want to read it and start crying. I Need stories of inpsiration
when you or someone you know of being told they couldn't have surgery after a year and a half of chemo as it would kill them and had a miraculous turn around or something.... or chemo being able to keep people alive for a very long time or being told such a death sentence and then being told otherwise. please know we are already contacting usa hospitals. I need to be at my babies graduation. That's all I ask. Please no negativity or telling me to accept it
I'm falling apart and so is my family
I Need you guys more than ever right now. Hollistic treatments anything ...positive stories to give me hope...please...even if it's just someone u heard about


My husband is at the edge of 2 years from diagnosis. We started locally and got a second opinion at Cleveland Clinic here in Ohio supposed to be #2 or at least pretty high on the list for the nation. They had us on a string and cut it 1 week before Christmas after 8 months of chemo they stuck him on a shelf with " ah just stay on chemo till you can't anymore" They gave him an expiration date all because he didn't fit in a neat box based on their data and their statistics.

We traveled to MSK of NY and we liked what they were selling but unfortunately couldn't afford it in the long run, plus we hated NY. We were totally on board with HAI but you know...

We pushed on without them and continued with our great "po-dunk" cancer center. They got us to a radiologist consult which STILL didn't quite pan out but put us in touch with a great SIRT doctor and it brought on searching and at Ohio State we found a doctor who didn't turn us away. A year and a half to the day just about my DH had a surgery that in 2018 we didn't think could/ would happen. He's had a partial colectomy and that HAI pump placement. Granted right now we have a love hate (more hate) with OSU right now. But we got here.

Head up, chug a long, the more you let the negative in the more it will eat you alive from the inside out. I know, I've been there. I took a diary of my first few months of denial and shock and wrote down all the things running through my mind that I couldn't say out loud and seemed like once they were on paper it was easier to dispel is from my mind. You don't want to hear "I'm sorry " etc grab this crap by the horns get angry at it, my hubby often trash talks his cancer. Don't let depression get you because that's when you'll start slipping down a slope that's is HARD to climb out of. Dont be a victim fight back mind body and soul and believe in what your fighting for.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery


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