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long term stage iv w/o liver resection?

Ckat
Posts: 17
Joined: Nov 2012

I've read a lot of survivors that say they have had liver rescetions and that has contribued to their long term, but i'm wondering if the dr. says that it is not possible (ofcourse there is hope the chemo shrinks enough so that it is possible!!!) is chemo enough to keep a person longer term?!

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

If chemo is your only weapon, it can shrink tumors and/or hold the line against progression...but after several years, perhaps less, the body has a way of becoming desensitized to chemo's effects - and the treatments stop working.

At that point, the onc would probably switch to another big player...and then move their way on down the list through known, conventional methods.

It generally takes about 3-4 years to exhaust most of the options available today.

It usually goes something like Oxaliplatin, Irinotecan, 5fu by itself or in combination with the others...Avastin in combo with one of those...and then down to Erbitux or Vectibix, which are not chemotherapy, they are another type of agent.

New drug on the market is Zaltrap...this drug can extend life a few more months...there's another now too, Rogeranifib...I'm misspelling it.

But, chemo only will not cure...

But, then again, even with surgery, radiation and chemo, a person can still recur - and recur multiple times as well.

To answer your other question on liver resection...

I'm a metastatic stage 4...did not do a liver resection...had the RFA procedure, followed by Cyberknife.

I've had cancer 3x now in 8-years...4 major surgeries...51x chemo...55x radiation...3x Cyberknife...currently back in a remissive state for the time being...waiting to see how long I can stay clear after the last fight.

The role of chemo is to shrink tumors to a stage where they can be surgically resected. Chemo is a treatment option - and should not be considered a lifestyle.

Best of luck as you move forward and welcome aboard!

-Craig

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Hi
I may qualify for cyberknife. Can they zap tumors (1) at original site of removal and another on other side. They are small. Also have a 5mm lung nodule....
I am getting a second opinion about the nodule thru a Pulmonary Dr. at Univ. of Chicago. He does a broncoscopy procedure, which I don't know if I will qualify for.
Any thoughts appreciated.
I wonder if I'll be chemo for life...ugh
My Oncologist mention another liver surgery or sbrt and I have options.
However she didn't have the full report with two tumors when I saw her after my scan.
I am so emotional and trying to stay level headed about this until new plan. Pet scan is Tuesday.
Thank you for any support.
My last chemo was Xelox regimen 8/1...I dread another surgery so soon.
Just returned to work and feel good.

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

I'd be reticent to say definitively...generally, if they are on separate lobes, I'm not sure they would...but the best source for that answer would be the surgeon.

It sounds like options are still available for you, so this sounds very promising indeed.

Yeah, there was awhile when I was doing back to back surgeries, after returning to work.

It's not so much that you dread the procedure itself...what really gets you is the fact of how hard you are going to have to work - just to get back to where you are right now.

You still like you have much going for you...I'm glad you are feeling so well.

I never thought I'd be going 8.6 years later...18 mos out of my last fight, I'm feeling a bit stronger...recovery has not been as quick this time...and I've had a very hard year stress wise handling non-cancer related business.

Happy for you!

-Craig

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Thank you for the encouragement!

2013 will be a good year for you and I hope family issues
have settled for you. I have some to resolve. Never will understand many of my family members. :-(
Feeling well but do have neuropathy in the feet.....tolerable.
My boss can be a pain in the butt...bad joke. Lol

You will keep the 8.6 going and you inspire us all!

Barb

Ckat
Posts: 17
Joined: Nov 2012

now that is awesome! what is cyberknife? i'm in Canada and i know some of these prodcedurs are things that seem to be only hearing about in U.S....or maybe i'm just not searching around enough? was told right now chemo is only treatment that will work, obv hoping it will shrink them enough to do some surgery or start radiation. Sundanceh-did you have the surgery after the chemo shrank the mets? thanks for the info. 3-4 yrs at this point is ideal even when looking at stage iv!

luvinlife2
Posts: 172
Joined: Jul 2012

Cyberknife is available in Canada and is referred to as Stereotactic Radiosurgery or Stereotactic Radiation. I don't know why they just don't call it Cyberknife...so much easier.

I'm now 3 months into my 5th year of chemo as a stage iv with mets to liver and lungs. I was considered a surgical candidate for liver resection on 2 occasions but PET scans showed activity in my lungs so surgery was cancelled. I have been on Irinotecan/Avastin/Xeloda (5fu for the first 1.5 years) since the beginning in 2008. I have regressed and progressed throughout this time but I'm doing great and living life. Cancer has changed my life but I don't let it run it. I hardly think about and it's only when I visit my onc or go for my infusion that I'm reminded how serious my disease is.

What is important to remember about all of this is our bodies and DNA are unique and thus we have different responses to treatments. Don't dismiss anything (within reason of course) just because someone says it doesn't work or it's a waste of time and money. I've met a Stage iv who had a complete remission after only 1 chemo treatment and no one can give an explanation for that. I've met people who have tried TCM and it worked for them. Others got a great response with chemo and surgical procedures. Others got great results the natural/alternative way. Then there are those who are gone because nothing worked for them.

For myself, any one treatment on it's own has not worked for me. However, I have found that when I combine/integrate my treatments my cancer gives in. That's how my body seems to respond well.

Good luck with the fight! :)

PS. The very first person I met who also had colon cancer was in the chemo room. He was in his 15th year as a Stage IV!! Yes...unbelievable. A combination of chemo, surgeries and change of lifestyle. I just ran into him again about a month ago. 19 years and still going!! He's still getting his Irinotecan every 3 weeks and he's in his seventies. What an inspiration :)

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Craig

I must admit, your post of 12-7-12 hit me between the eyes and I don't think i've ever thought so much about one persons words or post on this CSN site other than your post just above here.

I have been classified by four docs that I am inoperable.
it bugs me greatly. and, after reading your post.... I want to fight more.
i want to begin my search for new or different doctors.

I had my CT scan and follow up with my onc team this past week.
I asked again... Is there any chance of an operation on the liver?
He replied with "no, there are way too many liesions in multiple locations.

the good news is that i've been on the "maintenance chemo" (Xeloda and Avastin) for 13 weeks... and no new cancer, no growing cancer, no movement at all in over year since being dx'd.

I'm happy... yet still inoperable.

anyway... thanks for the kick in the head and in the butt to begin my search and for looking further into other options.

joe

Chelsea71
Posts: 1170
Joined: Sep 2012

Joe, I think you should call Sloan Ketterling and make an appointment. It can't hurt to get another opinion and they have a fantastic reputation. When it comes to liver resection, opinions seem to really vary from doctor to doctor. Maglets was told the same thing. She had to meet with three surgeons before somebody finally operated. Look at her now! (she is being treated here in Canada). Phil has had a lot of success with Sloan. My cousin was told 6 mos at the most. She went to Sloan and they have kept her going for the past seven years. If I were you, I would start shopping around. I hope I'm not over- stepping. Feel free to tell me to mind my own business.

Take care,

Chelsea

Oh, congratulations on your scan. No movement is awesome!

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I've been told I am not a candidate for surgery, as my stage 4 mets are too small and numerous to try and remove, so I am counting on chemo only at this point. However, there are quite a few folks on here that were told the same thing, but later were able to get surgery. I think you will just have to wait and see how the chemo works for you. One of my best friend's dad was diagnosed with stage 4 about 3-3.5 years ago, and he is still NED after radiation and chemo only (no surgery), so it can prolong life in some people for quite awhile. They are working on new and better drugs/treatments for colon cancer, so we can always hope for better options in the future. Best of luck with your battle.

Tedd

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

It will be interesting this go around, no doubt. I cant imagine they could remove two liver mets with one incision?
I feel like their guinea pig since last surgery they removed the left upper liver lobe met and wedged the bottom right lung...ugh. one incision.
Recovery was easier then the dang left lobe removal.
Initially I had good results from first chemo but now I am wondering what they will decide.
I am scrambling to get second opinion on small lung met before the tumors board meets with total plan.(at UIC)
This is all so consuming...
Thank you for your encouraging post.

Ckat
Posts: 17
Joined: Nov 2012

that's nice to hear it can proglong it that long w/o surgery. fingers crossed for us both that chemo is strong enough to shrink and go on with surgery. have to believe! good luck to you too Tedd

Actsassy's picture
Actsassy
Posts: 37
Joined: Nov 2010

Hi Ckat,

I was diagnosed with colon cancer with mets to liver in May of '09. I was at an only cancer hospital and the chief of that department told me "i was inoperable, my liver would look like swiss cheese." I had lesions on both sides of my liver and i had quite a few.I never sawa liver specialist at this hospital, ever. I did chemo from July thru Dec/Jan '10. They had shrunk and basically went to sleep. I was off all chemo. In Aug of '10 lesions appeared again. Started on xeloda only. Shrunk for a bit and then started growing. Got a bacterial infection then and my docs ticked me off with the way they were handling my infection and my chemo. I was given a name of another onco at a different hospital. I saw my onco one more time to see what he had to say and it was the same story. I called and made appt with other onco. Wow, what a difference. This onco actually studied under my other onco! She pretty much disagreed with EVERYTHING he did. Didn't agree with the chemo he had put me on, didn't agree that i couldn't have surgery. Also, said "I don't just want to control your cancer, I want more than that for you!". I did bunch of scans and saw liver specialist. First thing he said was i can help you. You could have knocked me over! I kept saying to him are u sure! Must have asked him 9 times! He said would have to do chemo to shrink them down but he could do surgery once they shrunk. He said we would have to do it in a series of surgeries cuz of where my lesions were. It would be zapping on section. Healing and then go in and do more zapping on the other part. Then I could have my colon resection. My old onco didn't even do that. Said as long as your pooping we won't do it. Needless to say, I was put on a very agressive treatment. One month later, did scans and they had shrunk dramatically! Went to see the liver specialist and he said since they shrunk so much, he could do all the zapping at once and do the colon resection at the same time! Also, it would be laproscopy! November last year I had the colon resection and zapping done. NED until August this year. I am on chemo again and I did go back to work which has been a tremendous mental help. Liver specialist was going to do more zapping but at last appt said no need for zapping. NED again. Still finishing chemo. Hope to be done with that very soon and be off things for a while. Liver doc says I'm ahead of the game now and that is why we do the scans every few months. Easier to deal with when it's small. So, I guess what I'm trying to say is I went from being inoperable to operable and I'm doing well now. My biggest issue right now is that the avastin has caused my blood pressure to go up. Don't give up and go for a second, third opinion if need be!. God Bless and take care.

Angie

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Angie

thank you for sharing your story.

can you share the name(s) of your oncologist and your liver specialist doc?
what city, state are they practicing in?

thanks

Joe

gfpiv
Posts: 50
Joined: Apr 2010

It's amazing how broad a spectrum there is for individual results for each chemo. Not sure if you'd call 3 years "long term" but next month will be 3 yrs from my dx of Stage IV with innumerable liver mets, CEA>600. I've never had liver resection, and likely never will (too many small, mostly calcified spots still on liver). But after 2+ years of chemo (including HAI), I've actually been stable, and off all chemo, for the past 8 months, knock on wood. Things could well turn for the worse for me any day now, but I'm thankful for the extra time I've been given.

Anyway, my point is that you never know until you give it a chance. Hopefully you will be one of the outliers...and maybe even have a good enough response to go for a resection.

Chelsea71
Posts: 1170
Joined: Sep 2012

Welcome Ckat,

I'm from Canada too. Cornwall, Ontario. My husband is being treated in Ottawa and surgeon is in Montreal. A lot can change with cancer. Shrinkage from chemo can qualify a person for surgery. Opinions seem to vary from doctor to doctor. I've met people at chemo who have been doing chemo only for years. One woman in her early seventies has been at it for over three years. When she was diagnosed she had numerous tumors in her pelvic and chest cavities. Only the primary tumor wad removed. Tolerates the chemo really well. a lot depends on the degree to which your body responds to the chemo.

Good luck,

Chelsea

maglets's picture
maglets
Posts: 2440
Joined: Jun 2006

another Canadian here....I am in Owen Sound Ontario....I am stage IV 8 years surviving....colon and then 2 liver resections. Like others here I was told that I was definitely inoperable. at least 3 surgeons turned me down and my colon surgeon was telling me to get my affairs in order......that was 6 years ago. Finally found a wonderful liver surgeon in London Ontario at the University Hospital....when others said no he said YES so ....

there is hope.....I did chemo after all three surgeries and have been NED for 4 years now.....

all the very best.....

maggie

Ckat
Posts: 17
Joined: Nov 2012

That is amazing, congrats to you! Did u go thru chemo first, which then shrank tumors enough to do resection? And if so how long was the chemo? Awesome inspirational story!!

maglets's picture
maglets
Posts: 2440
Joined: Jun 2006

hi ckat....i apologize....i did not see your question sooner. No I went straight to surgery the first time.....I did several months of xeloda....after the second surgery I did several months of xeloda plus oxalyplatin....

all the very best

mags

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Will find out if I have options this week....
These are inspiring stories.
Thank you for sharing
Barb

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Good to hear...

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