Options for liver mets
I just don't think systemic chemo for life is acceptable. As far as tests reveal, the only cancer at this time is in the liver. There has got to be something more that is available to him. I am considering getting a referral to Phil's doctor at Sloan. They do the HAI pump at Sloan. The guy we talked to today said most hospitals don't use it anymore due to the new angiogenesis chemo success. It's just that we live in Ontario, Canada. It would be expensive. I don't think OHIP helps with out of country costs. If anyone knows anything different, please let me know. Also, the pump would need to be seen every two weeks. We couldn't go to New York every two weeks. I wonder if the hospital here would be able to "service" it. Not likely. Phil - Do you know of anyone at Sloan that has gotten a pump and then gone to other hospitals to have it filled (not sure of correct terminology. I'm guessing they have to put chemo in it). I looked into Theraspheres - radioactive beads. It seems to be available in Montreal, Vancouver and Edmonton. Montreal would certainly be feasible. It seems like they do it for primary liver cancer but there is an ongoing clinical trial for cr liver mets. Not sure if Steve would qualify. His history of ulcerative colitis has screwed up the possibility of taking part in some chemo clinical trials.
Any info from people would be great. Does anyone have info on the spheres, HAI pump or are there other treatments I am not aware of? Any help would be great. There just has to be something else besides systemic chemo off and on for life. My hope it to target the tumors directly and hope they get to the point where resection is possible.
Thanks a lot,
Chelsea
Comments
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Theraspheres
Hi Chelsea. My daughter had Theraspheres in May and June of last summer. We are awaiting her first PET scan Jan. 22 to see what remains. Her CEA is down to 10.2 from over 6,800. She is doing VERY well with full return of her energy, etc. - she feels great, even though still on Folfiri and Erbitux. I will be able to give you more information on her situation after the scan. Meanwhile, maybe you should check out www.beatlivertumors.org - Suzanne Lindley is the first person in my online searches after my daughter was diagnosed to have a stage IV diagnosis and success with the spheres. She is also up to date on other liver targeted therapies, probably knows about availability in Canada. Best wishes to you and Steve.
Sandy
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hi ChelseaVarmint5 said:Theraspheres
Hi Chelsea. My daughter had Theraspheres in May and June of last summer. We are awaiting her first PET scan Jan. 22 to see what remains. Her CEA is down to 10.2 from over 6,800. She is doing VERY well with full return of her energy, etc. - she feels great, even though still on Folfiri and Erbitux. I will be able to give you more information on her situation after the scan. Meanwhile, maybe you should check out www.beatlivertumors.org - Suzanne Lindley is the first person in my online searches after my daughter was diagnosed to have a stage IV diagnosis and success with the spheres. She is also up to date on other liver targeted therapies, probably knows about availability in Canada. Best wishes to you and Steve.
Sandy
Hi Steve and Chelsea....I have no great insights for you two....just thought i would send a little Canadian love and support. So sorry to hear that you did not get better news from the liver surgeon.....I guess my only advice would be try another surgeon....remember it took me four tries before i found one that would do a resection....maybe you have investigated that though.
Chelsea you are working so hard....I really wish I could help.....
thinking about you with love.....maggie
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HAI
Sloan Kettering billed my ins co somewhere between $80-$100k USD for HAI install along with colon resection and hospital stay. I certainly couldn't have paid for that out of pocket.
As for visits to NYC every 2 weeks for HAI treatment - you can probably get away with one trip every 4 weeks. I got it filled with chemo in NYC on day 1 (along with getting systemic FOLFIRI), then 2 weeks later my local oncologist's office drained the chemo and put saline in to last for a couple weeks (along with systemic FOLFIRI). Then back to NYC for another HAI refill etc. Supposedly it's pretty easy to drain and refill with saline, and the manufacturer does a good job with training.
True I've had some liver and/or bile duct damage, and I haven't become a candidate for resection. But I'm pretty sure that HAI (plus maybe a little divine providence) is the reason I'm still here today.
Best of luck to you and your husband.
-Chip
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Sandy and Chip - thanks sogfpiv said:HAI
Sloan Kettering billed my ins co somewhere between $80-$100k USD for HAI install along with colon resection and hospital stay. I certainly couldn't have paid for that out of pocket.
As for visits to NYC every 2 weeks for HAI treatment - you can probably get away with one trip every 4 weeks. I got it filled with chemo in NYC on day 1 (along with getting systemic FOLFIRI), then 2 weeks later my local oncologist's office drained the chemo and put saline in to last for a couple weeks (along with systemic FOLFIRI). Then back to NYC for another HAI refill etc. Supposedly it's pretty easy to drain and refill with saline, and the manufacturer does a good job with training.
True I've had some liver and/or bile duct damage, and I haven't become a candidate for resection. But I'm pretty sure that HAI (plus maybe a little divine providence) is the reason I'm still here today.
Best of luck to you and your husband.
-Chip
Sandy and Chip - thanks so much for the info. I will ask the onc to make a referral to the Montreal hospital and I plan to contact Suzanne Lindley. I will ask the onc what she thinks of a consult at Sloan and the HAI pump. If it wasn't a really successful form of treatment, I'm sure Sloan would not be offering it.
Maggie - I must be exhausted from all this blood clot business because when I read your post I started to cry. This is unusual as I'm not a cryer. I thought of you today. Remembered that you had to talk to 3 or 4 before you found a surgeon willing to operate. I told Steve your story and I think it cheered him up.
Thanks everybody,
Chelsea0 -
ahhhh girlChelsea71 said:Sandy and Chip - thanks so
Sandy and Chip - thanks so much for the info. I will ask the onc to make a referral to the Montreal hospital and I plan to contact Suzanne Lindley. I will ask the onc what she thinks of a consult at Sloan and the HAI pump. If it wasn't a really successful form of treatment, I'm sure Sloan would not be offering it.
Maggie - I must be exhausted from all this blood clot business because when I read your post I started to cry. This is unusual as I'm not a cryer. I thought of you today. Remembered that you had to talk to 3 or 4 before you found a surgeon willing to operate. I told Steve your story and I think it cheered him up.
Thanks everybody,
Chelseaahhhh Chelsea hang in there girl...put on your toque, grab your toboggan and have a double double Timmie's and all good things Canadian.....love you girl.....hi Steve....
much love and hugs.....mags
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This lengthy article describes a number of optionsmaglets said:ahhhh girl
ahhhh Chelsea hang in there girl...put on your toque, grab your toboggan and have a double double Timmie's and all good things Canadian.....love you girl.....hi Steve....
much love and hugs.....mags
for unresected mets to liver,from Dec 11,2012
www.effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=1354
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Hey Chels:)
Just thought I would add that my liver tumor was approximately 5 x 8 cms....pretty big....double Steve's.
We originally scheduled for a liver resection, but found that I had fatty liver and the consensus was that I would have died on the O/R with the resection....
So, we switched to RFA...I had read where RFA was "Equal To - If Not Better" than the gold standard of resection....it was a huge tumor to burn out. In fact, due to its location, they could not get to all of it, but got most of it.....this necessitated a follow-up for me with Cyberknife for 3 treatments....and then we did systemic chemo.
This was the end of '07...two days after Xmas...I was told "highly unlikely" I would see the following 08 Xmas...and that I would "definitely" be getting cancer back in the liver, even after they removed it.
Wrong on both counts...just saw Xmas '12...that's 5-years....and 5-years of no cancer back in the liver....
My story did not end there of course....but I overcame the odds there....it was a huge tumor to work on, but since we couldn't resect, he went for it.
The rest is history...and I'm here talking with you again today. So, maybe they could ablate what they could....and then Cyberknife the rest of it.
My liver surgeon was well-renowned and known around the globe.....his name is Robert M. Goldstein @ Baylor Medical in Dallas, Texas.
No doubt what he did for me, extended my life clock to deal with the other cancer challenges that awaited me....but I beat those odds then.
Just something else to consider...hell of a trip, but the guy is known.....he did Mickey Mantle's liver transplant surgery...
Resect is the goal, but I think I showed how RFA can be equal to or better as the resection...just like the literature in the waiting room told me it was.
Continued best!
-Craig
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Hi Colocan,coloCan said:This lengthy article describes a number of options
for unresected mets to liver,from Dec 11,2012
www.effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=1354
Thanks for the
Hi Colocan,
Thanks for the info. More available than I realized. I'm trying to figure out what's availble here in Canada. Thanks again.
Chels0 -
Hi Craig,Sundanceh said:Hey Chels:)
Just thought I would add that my liver tumor was approximately 5 x 8 cms....pretty big....double Steve's.
We originally scheduled for a liver resection, but found that I had fatty liver and the consensus was that I would have died on the O/R with the resection....
So, we switched to RFA...I had read where RFA was "Equal To - If Not Better" than the gold standard of resection....it was a huge tumor to burn out. In fact, due to its location, they could not get to all of it, but got most of it.....this necessitated a follow-up for me with Cyberknife for 3 treatments....and then we did systemic chemo.
This was the end of '07...two days after Xmas...I was told "highly unlikely" I would see the following 08 Xmas...and that I would "definitely" be getting cancer back in the liver, even after they removed it.
Wrong on both counts...just saw Xmas '12...that's 5-years....and 5-years of no cancer back in the liver....
My story did not end there of course....but I overcame the odds there....it was a huge tumor to work on, but since we couldn't resect, he went for it.
The rest is history...and I'm here talking with you again today. So, maybe they could ablate what they could....and then Cyberknife the rest of it.
My liver surgeon was well-renowned and known around the globe.....his name is Robert M. Goldstein @ Baylor Medical in Dallas, Texas.
No doubt what he did for me, extended my life clock to deal with the other cancer challenges that awaited me....but I beat those odds then.
Just something else to consider...hell of a trip, but the guy is known.....he did Mickey Mantle's liver transplant surgery...
Resect is the goal, but I think I showed how RFA can be equal to or better as the resection...just like the literature in the waiting room told me it was.
Continued best!
-Craig
Geez you did have a
Hi Craig,
Geez you did have a pretty big tumor. Did you have just one tumor? I looked up the criteria for cyberknife here in Ontario. Will only use it when there are three tumors or less etc.... Very strict criteria. I would be very happy with RFA. There just has to be some way of shrinking those tumors so that he can qualify for RFA. The hospital Steve is at seems stuck on starting and stopping chemo when it comes to the stage 4 people. I am just not willing to accept that at this point. It would be different if there were other areas involved. I think we will have to venture outside Ontario, possible Canada. The liver surgeon admitted as much. Seems like Dr. Goldstein has a good attitude. Sounds like my kind of doctor.
Thanks so much,
Chels0 -
Tumor the Size of a Small Orange..Chelsea71 said:Hi Craig,
Geez you did have a
Hi Craig,
Geez you did have a pretty big tumor. Did you have just one tumor? I looked up the criteria for cyberknife here in Ontario. Will only use it when there are three tumors or less etc.... Very strict criteria. I would be very happy with RFA. There just has to be some way of shrinking those tumors so that he can qualify for RFA. The hospital Steve is at seems stuck on starting and stopping chemo when it comes to the stage 4 people. I am just not willing to accept that at this point. It would be different if there were other areas involved. I think we will have to venture outside Ontario, possible Canada. The liver surgeon admitted as much. Seems like Dr. Goldstein has a good attitude. Sounds like my kind of doctor.
Thanks so much,
ChelsYes, I was lucky...it was just one great big one...everytime I go to get scans, I continually get comments from the technicians.....they see the great big ol' hole taken out of my liver...surgical staples, fiduciary beads and all.
He was a good surgeon...all business...straight to the point...he had the foresight to know (after opening me) that he wasn't going to be able to get all of it....so in advance, he went ahead and placed the fiduciary beads used for Cyberknife tracking in and around the liver and the remnants of the then tumor....we still see the beads today.
That saved me from them having to go back in at a later date...
It was a hard surgery...I had the tradiational backwards "L" incision for open liver surgery...and the RFA must have needed alot of juice....my arms were the ugliest color of black I'd ever seen...so bad, you couldn't even see the blue....
Found out that both of my hips and down my legs were "burnt" looking too.....looked like a bomb had literally gone off in these areas of my body. I later found that they use the human body as a "GROUND" source, since it uses electricity to generate the intense heat.
Honestly, it was frightening...and I felt violated...I looked terrible...and it took months for those areas to heal up and for the outward trauma to dissipate.
But, it did work....the radiation oncologist stepped in after and the two of them mapped out the Cyberknife strategy....we eliminated the tumor at the local level, so it was considered a victory....Foflox, Avastin, and Xeloda followed......and the rest of the story...yawn:)
I think you're going to have to get out of the area too from what it sounds like...
He was a good surgeon....privately, I have to tell you....he was one of the ones that said "Unlikely."
I'd love for my ghost to surprise him one day...but he wouldn't remember me....wasn't much of a talker....he's a transplant surgeon too:)
Perhaps a change of venue for you will yield new opportunities....I agree with you...chemo for me was a short term proposition...if I was relying solely on that, my body would have caved by now.
Doctors just don't seem to grasp that "Chemo is a Treatment Option - And Not a Lifestyle."
-Craig
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Very interesting, Craig...Sundanceh said:Tumor the Size of a Small Orange..
Yes, I was lucky...it was just one great big one...everytime I go to get scans, I continually get comments from the technicians.....they see the great big ol' hole taken out of my liver...surgical staples, fiduciary beads and all.
He was a good surgeon...all business...straight to the point...he had the foresight to know (after opening me) that he wasn't going to be able to get all of it....so in advance, he went ahead and placed the fiduciary beads used for Cyberknife tracking in and around the liver and the remnants of the then tumor....we still see the beads today.
That saved me from them having to go back in at a later date...
It was a hard surgery...I had the tradiational backwards "L" incision for open liver surgery...and the RFA must have needed alot of juice....my arms were the ugliest color of black I'd ever seen...so bad, you couldn't even see the blue....
Found out that both of my hips and down my legs were "burnt" looking too.....looked like a bomb had literally gone off in these areas of my body. I later found that they use the human body as a "GROUND" source, since it uses electricity to generate the intense heat.
Honestly, it was frightening...and I felt violated...I looked terrible...and it took months for those areas to heal up and for the outward trauma to dissipate.
But, it did work....the radiation oncologist stepped in after and the two of them mapped out the Cyberknife strategy....we eliminated the tumor at the local level, so it was considered a victory....Foflox, Avastin, and Xeloda followed......and the rest of the story...yawn:)
I think you're going to have to get out of the area too from what it sounds like...
He was a good surgeon....privately, I have to tell you....he was one of the ones that said "Unlikely."
I'd love for my ghost to surprise him one day...but he wouldn't remember me....wasn't much of a talker....he's a transplant surgeon too:)
Perhaps a change of venue for you will yield new opportunities....I agree with you...chemo for me was a short term proposition...if I was relying solely on that, my body would have caved by now.
Doctors just don't seem to grasp that "Chemo is a Treatment Option - And Not a Lifestyle."
-Craig
Your story is very interesting to me - my daughter has the attitude to get the cancer out of there, whatever it takes, instead of just "maintaining" it with chemo. I like that - "Chemo is a treatment option - and not a lifestyle." She is going to CTCA now and they have mentioned Cyberknife. We are waiting to see what the PET scan end of January shows. I didn't know they could do Cyberknife on the liver. This is very interesting. Good info. Stories like yours and the others here give so many of us so much hope.
Sandy
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