The Colon Club

I don't really have any tips. I have had recurrences but have been able to beat them back down each time. My signature has my history. It doesn't really get easier, although I try to convince myself otherwise. Each time I have a recurrence I think it's the beginning of the end....but then it's not. I am doing avastin only right now. I'm NED.

You are very brave. I hope this is the last milestone you hit before getting to forever NED!

I was diagnosed stage IV 3 years sgo, Mets to liver. Had the chemo with good response, several surgeries..the last one a year ago, and so far I'm NED! I have a scan scheduled in April...not planning on any surprises.

Do you have the quarterly scan now or 1/2 year or not yet? I am very unsure about when do they switch you from quarterly to twice a year....

Cimetidine is normally administered before and after surgery to prevent loose cancer cells from escaping the surgical site and causing metastasis elsewhere. There have been some studies showing at least anecdotal evidence that it helps prevent cancer cells from "sticking" to blood vessel walls and setting up shop. I didn't discover it until after my surgery, but I felt there may be some benefit even down the road. Don't know if it helped, but I'm very happy with where I'm at so I wouldn't change a thing.

THANK YOU for sharing!!!

Did you Onc say anything about it? I just knewwww for sure my Onc is not going to be supportive. Even on baby Aspirin he was not particularly happy about it....so I'm making my own "supplement cocktail"

I take Cimetidine as well. However my oncologist is skeptical about it.
Aspirin is anti platelet agent. Be careful if your numbers are low.
Aspirin and curcumin elevate LDH level. They mess up with monitoring recurrence a bit.
My oncologist is strongly against curcumin after and with HAIP.
I take probiotics daily.
I walked myself through chemo walking 6 miles every day even with 5FU. I exercise and garden a lot.
I so miss Brown Bagger, our gardener... Spring makes me miss him more.
I do not keep strict vegan diet however I eat less meat. Honestly I hardly ate meat before cancer... and ate lots of fruits and vegetables before and now. I have always cooked from scratch. I keep cooking because I like it.
I also try to challenge my brain and keep myself busy. I think I experience a slight short memory loss. However I manage it and try to exercise my brain.
Life is good.

Thanks for the reminder, my platelets are fine now that I have completed the FOLFOX regime. wow 6 miles is a lot and you do with when you were doing 5FU! You have all my respect! I know a couple of people keep exercising when they are doing chemo, I really admire them. I couldn't do it mostly because I was experiencing fatigue a lot.

I am also going through or trying to deal with survivor's guilt now for I know a few folks with CRC are probably not gonna make it... How do you guys cope with it?

I’m a survivor of stage 4 colon that spread to my lung. July will be my 5 year mark...I never had a recurrence. I take supplements off and on...Cell Stop, mushrooms, vit D, turmeric are a few. I started taking Cimetidine yesterday after learning my melanoma has returned....my other stage 4 cancer... i’ll Be having surgery next week, and hope to prevent any more spreading. Oncologist don’t usually suggest supplements..so you need to be proactive.

Thank you!! I'm so sorry to know your melanoma has returned. You are in my prayers! Fight hard against this monster!

My husband has a Stage IV diagnosis and now after two colon surgeries, two months (4 rounds) CAPEOX, and liver surgery, he is considered NED.

He takes turmeric extract, Omega 3s, vitamin D, modified citrus pectin, echinacea, graviola, olive leaf extract, decaffeinated green tea extract, and other supplements. Also takes cimetidine.

He walks a bit every week but hasn't since the fall due to weather and surgery, but the plan is to get back on track as soon as the temperatures go up.

He is in great spirits and believes he has "beat cancer." His positive attitude probably helps a whole lot.

mpbser,

I have been reading your posts since your very first. I'm very happy for your husband and his current status!!!! We will all stay in NEDville for a long time I pray!

re Scan schedule, lovelife789 wrote: . . am very unsure about when do they switch you from quarterly to twice a year

I did the quarterly ones for a year (4x in 2014). Been on half-yearly ones since (6x in 2015-2016-2017) with the next one set for May and probably one in Nov 2018 (5 yr after surgery). Thereafter annual ???

I did the quarterly ones for a year (4x in 2014). Been on half-yearly ones since (6x in 2015-2016-2017) with the next one set for May and probably one in Nov 2018 (5 yr after surgery).

I heard people do quarterly scans in the first two years, so I guess there are exceptions.... My doctor only asked me to do MRIs twice and CT scans twice in the first 2 years to lower radiation for my body. I wonder if there's anybody only doing quarterly scans for one year?

Exercising actually helps combat fatigue. I pushed myself in the beginning to just get up and walk! After a couple of rounds of chemo, I don't get that fatigue like in the beginning. I need to get back into that walking routine as I've gotten lazy the last couple of months.

Time to dust off the bike too!!!

Anyone in long term NED with Kras mutation? Feeling a little hopeless as I never get any good news. I know it means poor outcomes but hoping some survivor stories?

Yes at first I was told that. Dr. put me on folfox with avastin (11 infusions) and I responded amazingly! The tumors shrank so much that my liver surgeon only had to take 20% of my liver. My colorectal surgeon said that if the gi doc hadn't marked the mass in my colon he wouldn't have seen it!

I wish you all the best!

"I am also going through or trying to deal with survivor's guilt now for I know a few folks with CRC are probably not gonna make it... How do you guys cope with it?"

This is a really tough one. My husband and I have three people in our lives who have cancer: two with stage IV colon cancer and one with stage IV prostate cancer. One of those with CC was told he had no chance of survival but actually was able to get his liver to be resectable. He had his surgery lately and achieved negative margins. At this stage, he is NED - a 180 degree turn in a very short period of time. He is someone my husband can relate to (to a certain extent of course) and who can relate to my husband. Now that he's doing well, my husband feels comfortable sharing his success story with him.

The one with prostate cancer went through a "nothing left we can do, start making arrangements" situation to a new treatment protocol at MSK after which he thought he was NED. However, he's now been avoiding my husband and seems to be very depressed, as if he has received bad news about recurrence. My husband is now tiptoeing around him, not knowing what he should say, if anything at all.

The third is a friend of my aunt's who has been battling CC with metastasis to the liver (same as husband) for close to five years. She has been on the above-described rollercoasters herself a number of times. I actually just got a text today from my aunt that she has been in the hospital the past two days and not doing well. Yesterday, the doctors gave chemo directly into the tumor on her liver (not sure of the exact procedure) and she had a bad reaction which kept her in the hospital overnight. Earlier today, they did some radiofrequency ablation into the tumor. Her blood pressure has been skyrocketing. I spoke with my aunt right after I read these recent posts in this thread, before writing this. My aunt conveyed that her friend expressed her happiness for my husband's NED-ville. It was extremely awkward responding.

I just realized I am not providing any advice or tips. I'm sorry I don't have any. I wish I did!

Hi- My mom is a patient at MSKCC Dr. Kemeny. She has the HAI pump.

Diagnosed may 2011
She has had two liver resections and a liver ablation since diagnosis, chemo after each
Several reoccurrances and several NED remissions
Currently, in her longest remission....23 months
Always contained in liver. Never more then one or two spots at a time.

think positive
Lisa

I just realized I am not providing any advice or tips. I'm sorry I don't have any. I wish I did!

No worries, I understand. Sharing, which is what you did, can be therapeutic too! Bravo to your husband btw!

Diagnosed may 2011
She has had two liver resections and a liver ablation since diagnosis, chemo after each
Several reoccurrances and several NED remissions
Currently, in her longest remission....23 months
Always contained in liver. Never more then one or two spots at a time.

Thanks for your reply! I supposed....from reading what your wrote, a liver can be resected many times I supposed? I wonder if there's a ceiling on the number of liver resection . I had two resections already because the tumors were too big to be ablated....

Wow so that put together 7 years with on and off remission huh....that's quite impressive. I don't know if it's just me or other people share my thoughts too that I can do many rounds of surgeries...chemo is just very hard to take... how was it with your mother with rounds of chemo at different times?