My onc calls and says since I had mentioned my right leg had been hurting (without injury, no swelling & a blood clot was ruled out by fam dr) he decided to have me get a brain scan and bone scan just to be extra cautious knowing it would be so very unlikely to spread there. So I have the brain ...

Thank you for the replies and reassurance. It's been a month since the 80 cea and today it was 137. My mri didn't show anything. They now want to do exploratory surgery to look around and biopsy. Think it may be peritoneal area and may not be big/thick enough to show up on scans or "ovary remna...

I haven't been around since I finished treatment for when it came back the second time. I've just been dealing with the horrible never ending side effects from all the treatments/surgery. Severe neuropathy feet/hands, very slow gut/constipation, emotionally damaged. See abbreviated journey in signat...

I went to Mayo MN when my cancer came back. (I had stayed local when dx the first time). But when it came back I wanted the best I could do. I have nothing bad to say about it. All the different drs I needed there worked together and knew each other and had a plan for me. They are ranked 1st in GI s...

Julie YW I LOVED LOVED LOVED this part of your blog post: "In part, I also made that promise because I disliked tremendously those bloggers who always presented in the face of a life threatening illness images of pumped fists and unending positivity and determination. To me, such portrayals wer...

If you google 'donate ostomy supplies' there are several groups that collect and distribute them to those in need. The down side would you most likely would have to pay to ship to them. Another idea is to give them to your local ostomy support group if you have one near you. http://www.ostomy.org/Fi...

Coyote, I see you were dx in May 2013, have you had any standard medical treatment if so what or just treatment besides naturopathic? Did you go into remission and now is back?? If you want I would love to know your background story. Especially since it is so long since your dx and it seems you are ...

Interesting that the ClinicalTrials.gov #NCT02008656 is having two arms 1) chemo first, then rad/chemo or 2) rad/chemo first, then chemo. I did chemo first, then the rad/chemo same chemo drugs they list. I wonder if having one of them first makes a huge difference since both arms it is the same but ...

I would be wary to see the watch and wait approach become the standard of care. I want people to have an informed decision about both approaches. Just a fyi I was T4 which was outside the recommended watch and wait, most are T2 and some T3. I felt I did extremely well considering I was so far out of...

Amen! to ritz75 post. I have many "crunchy/healthy" friends and they facebook post endlessly about cancer and how to prevent it and other articles about how it is the persons fault that one gets cancer. And about all the natural cures for cancer and how evil chemo is (yes chemo is evil mak...

I am so glad to hear about this in the US. I had heard about the UK study that was going on back in 2010 (when I was first dx). I chose to forgo the apr with posterior pelvic exenteration after having a complete clinical response from folfox and chemo/radiation. Mine did come back in 2014 ( a little...

I did the watch and wait approach after I got a complete clinical response after doing folfox and chemo w/ radiation. I chose that because I was to have a more extensive surgery than the standard. The watch and wait from my understanding is for those with a lower stage. I am stage 3B and that was co...

Where do you post a message? On here? Or somewhere else? I would be willing to post with keywords to help the cause for you all.

Though I rarely post here (mostly cause I don't fit the mold of what others have done), I thought it was finally time to write my update. As you can see from my signature I was dx May 2010 did folfox chemo, then radiation with 5fu and opted for the watch and wait approach since I had a complete clin...

Isn't it great that they having been willing to email with us! Thanks for sharing the info you got, I had not talked to them since I was making my decision. Doing the prep (yuck!) today for the scope/biopsy tomorrow, hoping for NED again. I am 3yrs, 2mth since last treatment, so at least I made it l...