Colorectal Cancer Survivors - Good News

From Johns Hopkins:

Here's good news if you underwent chemotherapy at least eight years ago for colon cancer: Your risk of a recurrence is minimal. Researchers examined data on 20,898 people with stage II or III colon cancer who underwent successful surgery followed by a chemotherapy regimen that included fluorouracil, also called 5-FU. The researchers found that 35% of the patients had experienced a recurrence and 38% had died of colon cancer within eight years of cancer treatment. Most of the recurrences occurred in the first two years after surgery. After that, the recurrence rate dropped dramatically, with a very low risk of recurrence after five years and an even lower risk at eight years. In other words, the regimen actually cured cancer in some people rather than simply delaying a recurrence. This study, which was reported in the Journal of Clinical Oncology (Volume 27, page 872), provides evidence that chemotherapy has the ability to cure some patients by killing colon cancer cells. It also suggests that if you had chemotherapy and have been cancer-free for eight years, you can stop worrying about a recurrence of colon cancer. In fact, current guidelines say you can stop getting regular surveillance scans five years after treatment.

That is good news but chemo does nothing for you, the patient, other than kill everything in sight and then some. Yes, it does its job but in its wake, it leaves a devastated immune system and a path of dead everything. Now that you have a compromised immune system, you are at risk for many things, including cancer return. The two-year window of return is the time they hope your body can rebuild and come back to health to continue to take out the trash and stay healthy. Once again, chemo does nothing in any healthy way for you. There is nothing the medical community can do for you to help prevent or change why/how you had cancer. All they can do is sit back and wait for it to come back. THERE IS NO PREEMPTIVE STRIKE on their part to help YOUR BODY FIGHT A CANCER COMEBACK. Their standard medical protocol is to CT with blood work every three months and see if you can return to "normal". They have absolutely NOTHING in their arsenal to help you, just man-made chemicals to try to kill the cancer. Why is that? No $$$$$ in a cure. I know for I am living this nightmare right now. Cancer is trying to come back for the third time in six years. Not trying to start a fight but chemo is NOT the answer, it is just a bandaid and so far I have heard of nothing being done to help the person fight back. How sad is that in the supposed greatest country on earth.

Wow! That reply is quite blunt and "to the point" at the same time. Anyone else want to comment?

Thanks for posting that, Pinky. I'm right at the 8-year mark, and that made my day to read what you posted. After my first month of chemo, I asked the doc if I could return to work because the chemo wasn't that bad.
Anyways, I really appreciate you sharing this, and thanks again.
Cheers, Bob.

My aunt is a colon cancer survivor, and she's doing great! I have heard that bowel cancers are some of the most treatable types of cancers, with the most hopeful prognoses if they are diagnosed soon enough. Before my husband had his colon removed, we had both decided that at around age 40, he would go in and have colonoscopies done at least every two years, due to the colon cancer that seems to run in his family.

Anyway, yes chemotherapy is a deadly thing, but it's one of the most effective ways that medical science has to treat people with various cancers. If you are in the prime of your life and are given a grave diagnosis like cancer, what do you do? - either let the cancer spread and kill you, or accept the chance for a cure, even though it will wreak havoc on your body? I'd choose to suffer through treatment if it meant that I might get to spend a few more decades on this earth with the people I love.

Liz

Hi itsallgood. You may want to consider changing your handle... Just kidding.

I've been dealing with stage IV colon cancer for 8 years. I've done it all. Chemo more times than you can count, radiation 3 times, 3 major surgeries (the last one was an 11-hour ordeal in the OR). I had RFA on my liver tumor Wednesday and will be flying out to Houston to see specialists to see what we can do about the tumors in my kidney and lungs. I have a colostomy, a urostomy, and a nephrostomy (so my kidney can drain - currently being blocked by a tumor...)

Without chemo, I would not be here today, period. I can also confirm the opinion that, yes, it sucks. For most of my cancer journey, the side effects of chemo were the most obvious symptoms. In 20 years, doctors will marvel at how primitive the tools were in 2010 to fight cancer. Chemo is like using a shotgun to dust your furniture. It works, but at what cost. There are better therapies coming along (and other "chemos" that aren't as destructive). Yes, the side-effects suck, but often there is no better therapy to prolong life. Hang in there. The best thing you can do is to think how you feel RIGHT NOW and leave tomorrow for tomorrow...

Just my $.02. Wishing you the best.

Hello all. I am new to this and would like to introduce myself and my concerns. I am the fiancee of a 46 yo man with a permanent ileostomy. He was diagnosised with colorectal cancer last Feb. He underwent chemo and radiation to shrink the rectal tumor, but it was not affective and the cancer spread everywhere. He had extensive peritoneal carcenomas. He underwent emergent surgery in June 2010 for debulking and removal of the cancer. After a 14 hour surgery they ended up removing the entire rectum, colon, appendix, spleen, gallbladder, just about 75% of his small intestines, the omentum wall, the surface of the liver, and burned part of the prostate and pancreas. He was doing remarkably well and was recovering quicker than any other patient our surgical oncology team had ever seen.

After being home less than a week, I had to take him to the emergency room where they ended up taking him in for emergency surgery to repair a perforated bowel, which was said to be due to a resection they attempt, in order to save additional intestines, had failed. This time he become sepsis and was near death. He was on a ventilator for nearly 6 days and they had issues with the ostomy regaining blood flow. Eventually it did but ileostomy does not have a normal stoma that sticks out and inch or more, it is at the surface of the skin and dips in probably about 1/2 inch.

We have tried numerous appliances, but due to the location of the bowel and the enzymes and acid in his stool, the skin around the area is fighting back and growing granulated tissue, it looks as if it is healing it's self shut, which must be surgically removed. He had it removed in September. It is now December and he is going to have to go under the knife again. They tell us this is only a temporary fix and it may need to be done again.

The other option is to open him back up, but due to the extensive previous surgery the risk and complications are at an alltime high. He is corrently using Sensura 2pc drainable pouchs with Assura Extra convexity flanges and wears a belt 24/7.

So I guess my question will be is there anyone out there in this same situation or been in a similar situation that has any ideas or solutions. Obviously, I cannot feel his pain but he explains his cinstant pain as if someone is holding a lit cigar to his stomach at all times.I can see his pain and to see the one you love in such pain cause me pain.
Also, since he has such a short bowel track, he has yet to gain any weight. This was also caused from the chemotherapy he had to undergo. He only was about to do two months of treatment. He is now getting the month of December off to gain strength and weight back. But it doesn't seem like he is absorbing much, it doesn't stay with him long enough.

Any suggestions would help tremendously. Mircles do happen...
Prayers to all.
Fiancee in search of answers...

Hi Fiancee - My God, this is just about the most horrific story I've heard on this site. Blessings upon both of you, and especially you for staying with him through all this!

I hope someone will be able to help you with the technical ostomy questions better than I. My question is: did your fiance have the HIPC with the 14-hour surgery (hyperthermic intraperitoneal intraoperative chemo)? Many aspects of his surgery sound like mine back in 2003 when they were first using this technique for colorectal cancers.

Also, I would imagine they have him on TPN (total parenteral nutrition) - feeding by IV which meets his daily caloric needs but not enough to promote extensive healing like he needs.

His GI tract sounds so fragile, I would be afraid of putting anything through it. Is his situation being handled by a professional oncology nutritionist? Last time I was in the hospital (2009) I had an MD strictly for nutrition.

It would help us all here if you would do a profile, and we could exchange messages with you. There is so much more I'd like to say.

You are a saint. Pinky

Pinky,
Yes, he did have the HIPEC surgery with the hyperthermic chemotherapy. The surgery literally saved his life and has given him at least another 5 years with me. But the chemo required afterwards is taking a toll on him. Since he has such a short bowel tract, eating is required at least every 2-3 hours, but absorption is not happening.
He was on TPN for almost 2 months after the surgery but he wasn't eating and the doctors decided to take him off so his appetite would return, which it did, but then he started IV chemotherapy and his appetite left and he lost all the weight he has gained, 15 pounds.
I think I am going to try to start giving him a multivitamin, but I am afraid to because it may cause a blockage. Life is full of trial and error and it can be very frustrating for him and me. But I keep pushing and praying for the best.
Thank you for your insight and I am so glad that there are people out there who have also shared their stories and struggles.
Hugs...
Fiancee...

I think the statistics apply more to cancers in the colon, rather than the rectum - since rectal tumours are much more aggressive (according to my own research).

I'm certainly not in the quot;good quot; side of the odds anyway. nbsp; nbsp;Stage 3b in Dec 2006, radiation, chemo, surgery, more chemo, ileostomy reversal, j pouch dilation, urethral dilatations every 6 months, and now a permanent transverse colostomy. nbsp; nbsp;Most of my surgeries and procedures, months of physiotherapy etc, have all been necessary because of damage to nerves, scar tissue and I am on synthetic morphine which is decreasingly effective due to pelvic pain - all thanks to chemo and radiation damage.

However, the thought of not seeing my children become adults, my life being over when it's supposed to be starting - I couldn't have turned down the treatments available at the time. nbsp; nbsp;I had nearly 3 years with nothing showing up until a small lung spot appeared which nobody told me about, then in July this year, 2 liver tumours and half a dozen small tumours on each lung base (still not had full chest scan so not sure of full extent of spread).

I'm now trying to control my tumours with diet, sticking to a mainly vegan and therefore alkaline diet, cutting alcohol, caffeine, sugar, salt etc. nbsp; nbsp;I do yoga and meditation and am generally pretty happy with just being alive, though I spend most of my days and nights alone, when I see my kids or friends and family it's worth it! nbsp; nbsp;I believe eating properly, exercise and being content puts me in a stronger position to cope with the rotten side effects of chemo. nbsp; nbsp;My tumours have grown too fast in 6 months for me to just leave them and wait for them to suffocate me, I'll take the risks with the poison as long as the poison buys me more time to be here for my children. nbsp; nbsp;I just wish it wasn't so debilitating.

OstomyDude, can I be nosy and ask how large your liver and lung tumours are/were? nbsp; nbsp;My onco is set on chemo (still have to pick up where I left off due to recent events and finish this lot) and seems to be of the opinion that there is quot;no point quot; pursuing RFA for my liver tumours since I have multiple small tumours all over my lungs. nbsp; nbsp;I have no symptoms from them as yet, so am happy with this approach for now. nbsp; nbsp;

I would really appreciate hearing how long you've been surviving with lung mets and how many/size etc. nbsp; nbspand what treatment is recommended for you. nbsp; nbsp;I do have one other friend who has lung mets only, similar size to mine and he's done really well on Irinotecan slowing/stopping growth for at least a year, but it's so hard finding others in the same boat. nbsp; nbsp;I will never ask quot;how long do you think I have left? quot; because I refuse to believe any Dr can give me a use by date, I'm not a ready meal with a fixed shelf life, I want to live, I don't want to spend the rest of my days clock watching. nbsp; nbsp;

Fiancee. nbsp; nbsp;I'm saddened by your situation, but also the tiniest bit jealous that your man has someone so lovely helping him through this. nbsp; nbsp;I'm sure he must get a lot of strength from you and hope you have a lot of support from others. nbsp; nbsp;I wish you both all the best. nbsp; nbsp;

I would also ask about liquid feed. nbsp; nbsp;I have lost at least a pound a week for the last 9 months and I still have a lot of my intestines - for me it's the cancer making me lose weight, but I do have fortified shakes/soups when I'm too ill to cook/eat on chemo and I know a woman who has also had much of her intestines (all colon) removed and a permanent feeding tube in her nose. You could look at trying liquid multivitamins and supplements which should be absorbed a little better I'd have thought? nbsp; nbsp;Some vitamins can be injected for deficiencies, perhaps you could ask about that?

Sorry for the tardy reply...

Most of my lung/liver tumors are too small to zap with RFA right now, so chemo is the weapon of choice (I think for both of us). Right now, my doc in Texas has me on Oxaliplatin, Xeloda, Avastin (and this one is new), Sprycel. The Sprycel is $6500 a month, so you'll need to twist some arms with your insurance. It's not quite experimental, but it's very, very new. Talk with your doc about it. My guy is at MD Anderson.

My CEA is coming down and we'll do scans in about 5 weeks to assess progress.

OD