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Stage IV Colon Cancer with Liver mets

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Stage IV Colon Cancer with Liver mets

Postby darian1179 » Mon May 17, 2010 8:11 am

Hi All,
My father 57 has been recently diagonsed with stage IV colon cancer with 67% liver involvement, the biggest tumour is 9 cm. We are all devastated. He just had his 2nd round of chemo and no surgery yet. Just wondering if anyone has such a significant liver involvement and still survived? At present the doctor said there is a 1% chance of a liver resection in the future, we are not going to take that and have looked into other options such as Sirt. Anyone tried Sirt in combination with chemo? We are going to see a liver surgeon tomorrow. thanks.
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Re: Stage IV Colon Cancer with Liver mets

Postby hannahw » Mon May 17, 2010 12:12 pm

Plenty of people start out with liver involvement that is deemed "not resectable" initially. If the mets respond to chemo and the tumor load decreases, your Dad could become a candidate for resection. Or you might be able to consider radio frequency ablation.

There is more to resectability than percent of liver involved. Some of it has to do with the overall health of the patient. Some of it has to do with the location of the mets. If, for example, there are mets near the bile duct, resection would be much more difficult. Or if the mets have spread to other organs. You also can't take lightly the fact that liver resection is major surgery with significant complication risk.

There are a number of people here who have had SIRT, but it is a relatively new procedure so there isn't a lot of data on long term benefits. The procedure itself is somewhat rigorous, but also reasonably well tolerated. The major complication, based on the accounts I've read, is massive fatigue for weeks following. But there are other complications that are potentially devastating. I've also noticed, in this small sample, that many people show significant tumor reduction followed by recurrence shorty there after. SIRT does not appear to be a sure thing when it comes to benefit. The docs my Dad spoke to about it often referred to it as a "chemo holiday." It's not really a first line treatment. It's more along the lines of third line and/or when a patient with liver mets needs a break from chemo. But since SIRT can cause serious complications in it's own right, I'm not sure how much "holiday" it really provides.

Keep in mind that metastatic colon cancer is a marathon, not a sprint. It's totally understandable that you want answers right now and you want the cancer out right now, but there's a lot of hurry up and wait to this process. Sometimes being patient is your best tool because it allows the treatments to work and potentially gives you new options to consider, options that would not have been possible without patience.
Last edited by hannahw on Mon May 17, 2010 5:55 pm, edited 1 time in total.
Daughter of Dad with Stage IV CC
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Re: Stage IV Colon Cancer with Liver mets

Postby Gaelen » Mon May 17, 2010 1:19 pm

darian1179 wrote:Hi All,
My father 57 has been recently diagonsed with stage IV colon cancer with 67% liver involvement, the biggest tumour is 9 cm. We are all devastated. He just had his 2nd round of chemo and no surgery yet. Just wondering if anyone has such a significant liver involvement and still survived? At present the doctor said there is a 1% chance of a liver resection in the future, we are not going to take that and have looked into other options such as Sirt. Anyone tried Sirt in combination with chemo? We are going to see a liver surgeon tomorrow. thanks.


Darian, while second opinions are good in these instances, I would strongly suggest that your father consider getting his second opinion from a major research-oriented NCI ranked comprehensive cancer center. Liver resections when a lot of the liver is involved are tricky; your dad needs a surgeon who does a lot of them and does them all the time. The NCI site (google "where are NCI comprehensive cancer centers?") has a map that tells people, by state, where the NCI ranked hospitals are located. With a stage IV diagnosis, your father needs more than anything a team approach - at minimum, a medical oncologist who works closely with hepatobiliary (liver) surgeons to develop and recommend a medically-appropriate course of treatment and timeline. Although I was rejected for liver resection after being referred to MSKCC by my local oncologist at my first appointment, the MSKCC onc continued to follow my case and read my scans, and when I'd made enough progress, she changed my status from unresectable to prepare for surgery.

Your father's doctor is correct that the chances of being considered resectable at initial diagnosis for most Stage IV patients with significant liver involvement is pretty small. As Hannahw mentioned, it depends on other health issues the patient may have, whether there is disease anyplace else (lungs, peritoneal cavity, bones, lymph nodes), where the tumors are and how your dad's liver functions are holding up. And while SIRT has promise in some situations, leaping to SIRT when your father has only had two rounds of chemo could be seriously premature.

Your dad could have an excellent response to chemo - which is far less invasive and dangerous than the SIRT procedure - but it may also take a few months for that to happen. Read my signature - I did nine months of Folfox + Avastin before Sloan Kettering presented my case to their tumor board as a liver resection candidate. My first scan after four rounds (two months) of chemo showed no tumor growth - but no reduction in tumor size, either, although my liver function bloodwork had dramatically improved. My second scan, after nine rounds (four months) of chemo showed a net 45% reduction in extrapolated tumor size - but I was STILL not resectable. It wasn't until after I'd had 16 rounds of chemo (nine months) that MSKCC called and said that they liked what they saw on the scans. And then, when the liver surgeon got in there, he couldn't resect after all and had to place an HAI pump (which, FWIW, is not always compatible with the SIRT procedure unless the liver surgeon is working with an SIRT team from the get-go.) I then did another 13 months of systemic Folfiri + FUDR administered directly to my liver via the HAI pump - and then, almost two years after diagnosis, the surgeons were able to resect my liver.

I had rectal cancer, and didn't have the primary tumor addressed until my first surgery (the failed liver resection.) Both surgeries were done at the same time, two surgical teams in one OR. It was a bear of a surgery, but there are studies that show that operating too soon or on the primary tumor only in stage IV patients does NOT prolong their survival. Getting a serious shot of chemo on board first, before surgery, is generally more effective when the patient has a good response to chemo. And when the patient doesn't have a good response to chemo, all of the surgery and interventional radiology (SIRT) in the world isn't going to help the patient live longer - the systemic chemo does a huge amount of the work.

Stage IV is a difficult diagnosis, Darian. When the patient responds well to one or some of the available treatments (and we have more available now than we did when I was diagnosed in 2004), the treatments can be very effective in giving patients a few more years. But the treatments - all of them - are difficult over the long term. I recently ran into a survivor on another forum (Mark) who has been on chemo for his stage IV dx with liver mets, without a break, for nine (9) years. He tolerates long-term chemo, but as you can see from reading the posts here, nine years of chemo tolerance (and effectiveness) is the exception, not the rule. Yes, pursuing liver resection and the potential for a surgical cure is the gold standard of care for stage IV disease with liver mets. But a very small percentage of the people diagnosed in stage IV ever get to liver resection.

For now, the important thing for your father and his doctors to discover is how well his disease responds to chemo, and how well your father tolerates the chemo agents. Cutting the cancer out has to be approached carefully, because the time period prior to, during and after surgery that the patient must be off chemo is very risky (the cancer can progress unchecked without systemic chemo unless the tumors have been sufficiently damaged by a pre-op chemo load.) Your dad's best chances for surgery in the future are to get a serious dose of chemo in right now. Hope this helps.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
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Re: Stage IV Colon Cancer with Liver mets

Postby dianne052506 » Mon May 17, 2010 4:46 pm

darian1179,

Gaelen has an incredible story of working to become resectable after presenting with liver mets. I was lucky in that mine was not that complicated. I was diagnosed in May 06, with 3 separate liver tumors involving 75+% of the liver. I was still reeling from the dx and hadn't even thought about going to a major cancer center. My onc sent me to a liver surgeon in the metro area where I live. This surgeon said I couldn't survive with less than 25% of my liver, that liver resection had a 3% mortality rate off the top, and basically sent me home to die. Two weeks later my case manager at Aetna asked me if I had considered MD Anderson. The lead story that day on their website was about liver resections.
http://www2.mdanderson.org/depts/oncolog/articles/06/4-apr/4-06-1.html Within 10 days, I was in front of this surgeon from the news story, with a surgery date set 3 months out, after I had 4 rounds of chemo under my belt. You can call it karma, or fate. I call it God. What a way to get my attention!

I don't want to give you false hope. What others have said is all true. Patient health, location of the tumors, response to chemo, and the absence of mets in other organs all factor into the possibility of surgery. However, not only would I look to a major cancer center regarding the possibility of liver resection, I wouldn't have it done anywhere else. Even under the best conditions, it is a risky surgery. You want a surgeon who does complex resections all the time.

Your dad's onc can refer him to a cancer center, or, both MD Anderson and MSKCC allow a patient to do self-referrals. I would start now. With a self-referral, it can take 3 weeks or so to get in. A physician referral may be a little quicker. It may also be easier to get into either place by starting with a second opinion with a clinical oncologist there, rather than a surgeon. If your dad is not a candidate for liver resection at this time, the clinical oncologist can follow his treatment and refer him to surgery at the appropriate time. It is not necessary for him to his chemo at the cancer center.

Today, I am 8 days shy of my 4-year cancerversary. I haven't beaten the Beast, but I'm still fighting.

Good luck to you and your dad.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again
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Re: Stage IV Colon Cancer with Liver mets

Postby gep » Mon May 17, 2010 6:33 pm

I think I read somewhere that there's a new clinical trial studying chemo and sirt spheres done at diagnosis rather than adding sirt spheres after you've been on chemo for a while. Don't know where I read it.
caregiver to Eli
dx 8/07 3B
7/09 - liver & celiac lym node
1/10 Liver Res & Lym nodes out
7/10 Back - Liver & other lym nodes
12/12 hit chemo wall
1/12 Clin Trial - MEK & AKT inhibitors
3/12 Trial failed/ spheres 4/12
7/30/13 Eli died.
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Re: Stage IV Colon Cancer with Liver mets

Postby darian1179 » Tue May 18, 2010 3:30 am

Thanks for all your responses, it does give us hope especially with Mark's incredible story. Just came back from the oncologist's office and he reiterated what you guys have said, stay on chemo and see how he responds to it. Sirt would be an option further down the track if chemo fails. My dad symptoms have gone since chemo and he has really good appetite, feeling tired at times. Is that an indication that he is responding well to it? His general health condition is fine, no problems at all, he exercises, non smoker, so was totally shocked when found out his cancer has spread so fast.
I asked the question whether the chemo would damage his liver, the oncologist said no, it will be good for it, but how come internet posts are saying that someone with liver mets on chemo alone would not survive after a year or two? Does it all come back to whether he responds well to chemo?

We are in Melbourne Australia, so we don't have as many cancer research centres, all hospitals seems to be using the same kind of treatment.

For those of you who have survived cancer or know of a survivor, did you use alternative treatment such as Chinese herbs/taking multivitamins/protein supplement? What can he take to build his immunity?
Thanks.
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Re: Stage IV Colon Cancer with Liver mets

Postby EBMJ » Tue May 18, 2010 11:18 am

I had a 14cm liver tumor on the right side, had it resected and I am still here 3 years later. Never give up hope. Through my own recent experiences, surgical opinions can be like night and day. Go get another at a major cancer center, where the surgeon does many resections.

Jim
51 year old male, DX: Stage IV CC with liver mets 07
Too many Surgeries
Too much chemo
Too much radiation
PM me if you want the details
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Re: Stage IV Colon Cancer with Liver mets

Postby mike_co » Tue May 18, 2010 11:58 am

Wow! You guys are dishing out some good info. It's funny that I didn't really understand much of what I read on this board at first. I think there is a lot of shock and confusion following the dx. Darian, keep the faith. I agree that it's a marathon. It sure would have been nice if it had been a sprint 8)
Colon resection 11/09 (15/31 ln)
Stage IV CC w/Met to liver dx at age 46
Xelox failed. FOLFIRI w/ Avastin 6 cycles
6/2/10 - Right hepatectomy
6 more cycles
NED 7/2010 - 4/2011
Dad to three boys age 4,5 & 6 and lucky husband of Shanna
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Re: Stage IV Colon Cancer with Liver mets

Postby hannahw » Tue May 18, 2010 12:14 pm

I asked the question whether the chemo would damage his liver, the oncologist said no, it will be good for it, but how come internet posts are saying that someone with liver mets on chemo alone would not survive after a year or two? Does it all come back to whether he responds well to chemo?

The liver is one of the most resilient organs in the human body and it has to be because of all the cleaning and regulatory work it does. It is, in some respects, equipped with it's own fail safes. If part of the liver is invaded, the rest of the liver picks up the slack. The liver has a way of normalizing itself, continuing to function well-enough, even normally, despite disease. That's one of the reasons the tumor load in the liver can get quite big without the patient knowing - there are no outward symptoms because the liver just keeps chugging along.

As to people only living a year or two, I personally think it is good to be realistic, to recognize that liver mets mean you're in for a tough haul and it may not be survivable. Preparing for the worst may actually help you live best in the moment. At the same time, stats only represent what happened to other people. If the 2 year survival rate is 25 % (I'm just making that number up), there's no telling which percentage you'll fall into. Maybe you're in the majority. But maybe you're not. What happens to most people won't necessarily happen to you (for better and for worse). Try not to live to a pre-determined date on the calendar because then you're just waiting for the other shoe to fall rather than getting the most out of whatever time you have.

You may also find it valuable to try to create short horizons. Don't think too far into the future, especially with respect to treatment and future options. Do what's right in front of you, see where it takes you and go from there. It can become overwhelming if you try to take everything in at once.

I think one of the main values behind the percentages is in assessing quality versus quantity of life. If the cancer progresses and you start having to take on second, third, forth line treatments that potentially have high risk and minimal, short-lived reward, being able to look at stats and think about, for example, whether the possibility of, say, a 3 month extension of life is worth the suffering endured to achieve it. These are tough things to think about, tough things to talk about, but having a well-developed sense of what you want from your life, and your death, can provide valuable guidance if you get to the point where you're considering whether the consequences of a particular treatment are truly worth it. Everyone has to decide for themselves.

My Dad was told he had about a year after his cancer spread to the liver. He's now over six years. I'd like to say we know a secret that will make this possible for everyone with liver mets, but the truth, imo, is that a good deal of luck is involved - the specific pathology of your cancer and it's responsiveness to treatment makes a huge difference. Some people have very aggressive tumors that aren't particularly responsive to treatment. Other people have tumors that are readily knocked out. There's no rhyme or reason to it.
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Re: Stage IV Colon Cancer with Liver mets

Postby miked » Tue May 18, 2010 12:28 pm

You will find a variety of different opinions on this board as it relates to herbs, supplements, alternative treatments for lack of a better term. I, for one, am a believer in using herbs and supplements simulataneously with conventional treatments, surgery and chemo. Many oncs are not up to speed on these things. Our onc wasn't, but he approved Angie to go on the herbal and supplemental protocol because he had done some reading on it and wanted to try it with a patient if the patient was willing. I think there is now too much evidence out there that these methods work with many patients, unfortunately because of dollars, they do not get the clinical studies that the conventional drugs do. My wife Angie is now 26 months out from diagnosis living a life that is very close to her pre-diagnosis normal life. She has had minimal side effects and no lingering effects even from the Oxaliplatin. She is on a custom protocol and has been on it since month one. I recommend you read a book, Herbal Medicine, Healing and Cancer by Donny Yance. He is the herbalist we use as were were referred to him by Susie's Cause, the National Colon Cancer Foundation, www.coloncancerfoundation.org. I cannot say whether this is for everyone, but I will say that everyone should look at all alternatives and then decide if it's right for your situation.

I agree with the other posts. Every person is different and how they respond to the treatment is different. DO NOT BELIEVE ALL THE STATS. Your dad is not a stat.

My Best to You and Your Father, God Bless You Both!
Wife DX 3/08 Stage IV
4 Liver Tumors & Too Many Spots to Count
Xelox/Erbitux 4/08-9/08
10/08 LAR/ 2 Sm Spots Rem Fr. Liver
Irinotecan/Erbitux/Avastin 12/08-04/09
CEA .7-1.5
Maint. Erbitux 10/09 -07/10
07/10 Done Chemo/NED/Yance Protocol Since Day 1
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Re: Stage IV Colon Cancer with Liver mets

Postby darian1179 » Wed May 19, 2010 8:02 am

thanks guys, I guess alot of things are beyond our control, right now im just doing my best to assist him with his fight. Miked, thats excellent news about your wife! Did she ever have a liver resection or just chemo alone?
I have been doing research on supplements, any views on cellular zeolite or ultraliver8? is it just a marketing scam? not too sure about ordering supplements from the US? anything i should look out for to avoid scams? thanks.
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