mypinkheaven wrote:AllieG33 and Roscoe were both talking about getting metastatic tumors treated with proton radiation therapy.

I was talking specifically about Mayo clinic since that is where I got my treatment.

When I visited the Mayo Clinic in Rochester, Minnesota last year, they offered proton beam therapy. It was advertised as less harmful to surrounding tissues. Just letting people know of another medical facility that offers it. I just wonder if they would be willing to treat metastatic tumors in the...

I took several supplements after chemo ended: modified citrus pectin, coriolus versicolor PSK, Cimetidine, and Aspirin. Ehut, This is a rare combination! I have heard of Citrus Pectin, PSK and Aspirin. Can you share what are the exact benefits of Cimetidine? My Onc don't believe in supplements, so ...

My response might be different than some... I was stage IV with 6 liver mets, diagnosed in late 2011, with chemo, radiation, surgery, and more chemo ending in 2012. I have been NED ever since surgery, which was almost exactly 6 years ago. I took several supplements after chemo ended: modified citrus...

I've gotten conflicting messages about how long to continue scans. My local oncologist recommended no more scans after 4 years (relying on stable and low CEA numbers), and an oncologist at Mayo (my original onc at Mayo retired) recommended this year's scan be the last (5 years). But my Mayo surgeon ...

Congrats! I'm at 5 years NED, stage IV myself.

Just curious, does your insurance keep covering scans beyond 5 years?

My chest/abdomen/pelvis CT's have been annual since last year. My local oncologist didn't think I needed any more after last year. My Mayo surgeon said I should continue for at least the next 2 years (7 years post treatment). I think I'll go with the Mayo doctor's advice.

Quick update... I had my 5 year CT scan and colonoscopy this week at Mayo Clinic, and both were clear of everything, no polyps even. My surgeon (who also did this colonoscopy) recommends getting a CT scan for each of the next 2 years even though insurance may not cover it. He recommended another col...

I read all the horror stories about ileo reversal before having mine reversed, but decided to go forward anyway. I am extremely grateful that I did, as I did have some ileo issues with prolapse and occasional leaking, and not being able to comfortably sleep on my side. Post reversal, it took several...

I think it largely depends on how high or low the cancer is in the rectum. For me, about half of the rectum was spared, which allows decent performance with a straight connect.

Hi everyone, I haven't been posting much lately as I visit the board less and less frequently. Just thought I would share that I am officially a long term stage IV survivor today (12/1/16). I have seen many people join the site and leave us over that period, and hopefully this gives some of you opti...

Congrats on being NED! My wife and I faced a similar situation after my stage IV treatment (radiation, surgery, and Folfox/Folfiri) was completed 4 years ago. I had banked a sample before treatment in case my fertility was permanently compromised, but we later decided that IVF was not for us anyway....

Awesome news! Congrats! Question for you. Did you have a ton of lymph node involvement at diagnosis? I had 2 out of 45 nodes test positive, so not major involvement. Studies have shown no increase in birth defect occurrence when conceiving at least 2 years post-chemo. That is not to say less than 2...

Thought I would post an update to this old thread... my wife is pregnant and is due in early February! My daughter is 6 now so there will be a larger age gap than I'd like, but we'll take it!

FYI, psyllium fiber is also available in capsule form. That resolves the issue of the "grittiness" or high sugar content. I take 5 capsules before bed every night.