First long time coming. Need some encouragement
Comments
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Wow!Chajones said:Oh man, I Said you guys had
Oh man, I Said you guys had me convinced to seek out a surgeon. My friend is a pancreatic Cancer survivor. all of his work was done through UVA which someone here recognized as a top cancer hospital. I went onto their website and found the surgeon. He is the chief surgeon for oncology in liver. I explained all of my scans etc. he wrote me back! He wrote me back within 4 hours!!! He said he is happy to consult with me nd gave me directions to get in touch with his assistant to arrange an appointment and to gather all my records! How great is that???
That's impressive! He sounds like a carig surgeon. Good luck! Let us know how it goes!
Lin
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Winter Marieherdizziness said:Mets to liver and lungs
I have had mets to my lungs since first diagnosed (Feb 2010) as well as liver, ureter and colon and a few other places, did chemo first, still got liver, colon and ureter surgery that same year.
again still with mets to lungs had liver surgery again this past May to remove mets in liver.
Then got NEW PRIMARY colon cancer in sigmoid colon, with mets once again in liver and lungs, then had colon surgery to remove tumor in September BEFORE going back on chemo (was 95% blocked), if you want surgery I have found you have to be your advocate and find the right surgeon, and sometimes demand it, I had been turned down by tumor boards in the beginning, and had I not had my surgeries, I think I can pretty much guarantee I still wouldn't be here.
I am currently on chemo hoping to shrink liver mets again and once again get surgery to remove them, then work on lungs And thorax mets. Had the second primary tumor been located before my liver surgery in May and had been removed at the same time I don't think I would have these new tumor mets, it is believed that the new liver mets came from the new primary tumor.
I recommend meeting with a surgeon ASAP, to discuss your case and see what they want done in order to have surgery.
Winter Marie
You have really gone through a lot. God bless you!
This is why I love this site. You have so many people here who are full of knowledge and encouraging others. Look, you and all the others on here were so encouraging that you got Chajones to find a surgeon. I am so in awe of all of you.
I wish you all, every one of you, good health in this New Year!
Lin
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Congrats to you! Such greatChajones said:Yes that's a miracle in
Yes that's a miracle in itself. Having a top notch surgeon email you back within a few hours. There was a big part of me that trout I would never get a response.
Congrats to you! Such great news! Please keep us posted on your progress.
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Nice work. Please keep usChajones said:Oh man, I Said you guys had
Oh man, I Said you guys had me convinced to seek out a surgeon. My friend is a pancreatic Cancer survivor. all of his work was done through UVA which someone here recognized as a top cancer hospital. I went onto their website and found the surgeon. He is the chief surgeon for oncology in liver. I explained all of my scans etc. he wrote me back! He wrote me back within 4 hours!!! He said he is happy to consult with me nd gave me directions to get in touch with his assistant to arrange an appointment and to gather all my records! How great is that???
Nice work. Please keep us updated
Chelsea
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Yes, it really helped mehippiechicks said:Congrats to you! Such great
Congrats to you! Such great news! Please keep us posted on your progress.
Yes, it really helped me sleep well last night.
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Annannalexandria said:I think if you have both liver and lung involvement,
then the assumption is that the disease is systemic, and needs a systemic approach like chemo. The cancer cells are moving through the body via lymph nodes and the circulatory system, and picking bits here and there to remove doesn't solve the root problem. And you have to be off chemo for a period around the surgery, so that can give the cells a chance to really get going. So from what I've read, if you have one or two spots in a single organ, surgery is still a good option, but if multiple organs are involved it's very hard to find a surgeon who will be willing to operate.
I also wanted to mention that you are absolutely right that the majority of surgeons will NOT touch you if you have mets to the lungs and other mets. I had to do a lot of "shopping" around with the help of my oncologist to find surgeons (my first surgery involved three different surgeons, each specializing in where my tumors were, a GI surgeon, liver surgeon and urologist surgeon, each taking turns during the surgeries that day) that were willing to operate.
My last surgery to remove the sigmoid colon the surgeon called me three days before and left a voice mail canceling the surgery due to the lung and liver mets, I had to wait until Monday morning to call him back and it was a long weekend. When I got him on the phone I demanded the surgery, telling him I would take the risks of not having chemo, I would risk the other tumors growing, just get this cut out, he decided to go ahead with the surgery and I had it the next day.
The next surgeries I suspect that I need will be more difficult to get, but somehow, someway I think I will get it.
Winter Marie
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Getting a good surgeon on your caseChajones said:Yes, it really helped me
Yes, it really helped me sleep well last night.
can literally be the difference between life and death. So good for you for being your own advocate and seeking one out! And I think it's a good sign that he heard your details and was willing to work further with you. To my mind, that is very hopeful.
PS Chemo never worked for me, but 4 recurrences, and 5 surgeries, later, I'm NED and have been for 2 years.
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WooHoo!!Chajones said:Got am email from the
Got am email from the surgeons assistant. Working on getting my files up to UVA. called ahead of today's scan and had the surgeon put on the list of people I want the scan results send to! Moving and Shaking.....
Keep everything moving. The sooner you get the surgeon consult, the better you'll feel. Keep us up to date. Good luck.
Lin
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NiceChajones said:Keeping on....
Got a callKeeping on....
Got a call from UVA today. They received all my records from my doctor. I have an appointment with the surgeon at UVA on Monday at 8:00 am!
Keep your fingers crossed
Chris
Good going!!
Winter Marie
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T minus 90 minutes until scan
T minus 90 minutes until scan results. Any and all last minute prayers Are appreciated. Onc today, surgeon on Monday. No matter what the scan results I'm going to see the surgeon who has better imagining equipment. 2014 is the year i take the fight to cancer instead of just defending myself!
Chris
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Prayers being sent your way!Chajones said:T minus 90 minutes until scan
T minus 90 minutes until scan results. Any and all last minute prayers Are appreciated. Onc today, surgeon on Monday. No matter what the scan results I'm going to see the surgeon who has better imagining equipment. 2014 is the year i take the fight to cancer instead of just defending myself!
Chris
Good luck! Let us know how it goes!
Lin
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Hello! Sorry for long long
Hello! Sorry for long long wait between posts. I went up to UVA and met the surgeon. He was really nice. What wasmostimpressive was that even before I met him, had reviewed EVERYTHING about me. He even got dates right that I got wrong lol. He set me up for an MRI. There was a scheduling mistake but I finally made it up there. The following week Igalled his nurse. She said there were multiple lesions which wasn't a surprise but also not great news. She sounded pretty pessimistic. But she said she had not spoken to the Dr. And would call me back. She called back that evening (last week) and said surgery is possible!!!!!
She said he will use a combination of resection and burning. The hitch (there is always a hitch) is that a couple of tiny spots popped up but did not show up as cancer. So he wants me to do a little chemo and then rescan. This will hopefully show if the two other spots are an issue or not. Hopefully thiis will not affect the decision to operate. He wants me to see another medical oncologist to get a second opinion regarding the type of chemo. I got the feeling he was not happy with my original medical onc. So I'm headed back to UVA tomorrow to see a new medical onc.
The plan is roughly this
2-3 months of chemo
Rescan
Operate
Rescan and rest
6 months of chemo
Please continue to think of me. Things are looking up! I want to stay on is track!
Chris
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This sounds really hopeful, Chris!Chajones said:Hello! Sorry for long long
Hello! Sorry for long long wait between posts. I went up to UVA and met the surgeon. He was really nice. What wasmostimpressive was that even before I met him, had reviewed EVERYTHING about me. He even got dates right that I got wrong lol. He set me up for an MRI. There was a scheduling mistake but I finally made it up there. The following week Igalled his nurse. She said there were multiple lesions which wasn't a surprise but also not great news. She sounded pretty pessimistic. But she said she had not spoken to the Dr. And would call me back. She called back that evening (last week) and said surgery is possible!!!!!
She said he will use a combination of resection and burning. The hitch (there is always a hitch) is that a couple of tiny spots popped up but did not show up as cancer. So he wants me to do a little chemo and then rescan. This will hopefully show if the two other spots are an issue or not. Hopefully thiis will not affect the decision to operate. He wants me to see another medical oncologist to get a second opinion regarding the type of chemo. I got the feeling he was not happy with my original medical onc. So I'm headed back to UVA tomorrow to see a new medical onc.
The plan is roughly this
2-3 months of chemo
Rescan
Operate
Rescan and rest
6 months of chemo
Please continue to think of me. Things are looking up! I want to stay on is track!
Chris
The only question I might have is why not go straight to surgery and just take out the two little spots that may or may not be cancer (since there is already known cancer in the area that needs to come out)? Of course, this is based strictly on my own experience with chemo not working, so take it for what it's worth. Your doc sounds experienced and not afraid to push the envelope a bit on the surgery. So good for you for doing what needed to be done to get the ball rolling!
Keep us posted!
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I'm glad things are moving along for you!Chajones said:Hello! Sorry for long long
Hello! Sorry for long long wait between posts. I went up to UVA and met the surgeon. He was really nice. What wasmostimpressive was that even before I met him, had reviewed EVERYTHING about me. He even got dates right that I got wrong lol. He set me up for an MRI. There was a scheduling mistake but I finally made it up there. The following week Igalled his nurse. She said there were multiple lesions which wasn't a surprise but also not great news. She sounded pretty pessimistic. But she said she had not spoken to the Dr. And would call me back. She called back that evening (last week) and said surgery is possible!!!!!
She said he will use a combination of resection and burning. The hitch (there is always a hitch) is that a couple of tiny spots popped up but did not show up as cancer. So he wants me to do a little chemo and then rescan. This will hopefully show if the two other spots are an issue or not. Hopefully thiis will not affect the decision to operate. He wants me to see another medical oncologist to get a second opinion regarding the type of chemo. I got the feeling he was not happy with my original medical onc. So I'm headed back to UVA tomorrow to see a new medical onc.
The plan is roughly this
2-3 months of chemo
Rescan
Operate
Rescan and rest
6 months of chemo
Please continue to think of me. Things are looking up! I want to stay on is track!
Chris
Get that 2nd opinion, it doesn't hurt. Maybe he wants to be more aggressive with the type of chemo. Weigh your options and come back here with the information. There are many people on here who can share their experiences with you. My brother restarts his chemo on Thursday after being off of it for almost 3 months. He has nodules in the lungs and a tumor on the liver. So far they're doing chemo first, then they will discuss if he is a candidate for surgery. I'm still learning about all this stuff but the people on here have been a Godsend. Good luck.
Lin
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immune enchanced, multimodal
On these boards, one can find options beyond the ordinary that when used as multimodal combinations may yield the best chances of cure or life extension. Patients and caregivers have to go beyond the limits of individual doctors to get the best treatment series. More and more stage IVs are getting long term results. Extra effort and assertiveness can help.
For very advanced liver disease, beyond normal resectability, two options stand out: ALPPS (the most aggressive liver surgery) and Hepatic Arterial Infusion to regain resectability. HAI is most discussed at Colon Club.
A laser lung surgery technique pioneered by Dr Rolle in Germany can remove almost unlimited lung nodules. See Cb1975 here, Cb75 on ColonChat and Colon Club.
Several of us have been applying continuous low dose chemo with targetable mild drugs (like Celebrex and cimetidine) and/or immune enhancing components, mostly supplements. A successful application will dissolve or slow down existing mets. This also helps limit the formation of new metastasic sites, although some old microscopic inventory may eventually bloom. A number of Life Extension Foundation articles and protocols (some links) are a good introduction. We've even used immunochemo until the day before surgery and the day after, not just a month or two away like ordinary chemo.
Some para aortic sites and other extrahepatic mets can be removed by top surgeons. Immunochemo control of metastasis is key.
Many things are possible. Reading is fundamental.
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Cimetidine...tanstaafl said:immune enchanced, multimodal
On these boards, one can find options beyond the ordinary that when used as multimodal combinations may yield the best chances of cure or life extension. Patients and caregivers have to go beyond the limits of individual doctors to get the best treatment series. More and more stage IVs are getting long term results. Extra effort and assertiveness can help.
For very advanced liver disease, beyond normal resectability, two options stand out: ALPPS (the most aggressive liver surgery) and Hepatic Arterial Infusion to regain resectability. HAI is most discussed at Colon Club.
A laser lung surgery technique pioneered by Dr Rolle in Germany can remove almost unlimited lung nodules. See Cb1975 here, Cb75 on ColonChat and Colon Club.
Several of us have been applying continuous low dose chemo with targetable mild drugs (like Celebrex and cimetidine) and/or immune enhancing components, mostly supplements. A successful application will dissolve or slow down existing mets. This also helps limit the formation of new metastasic sites, although some old microscopic inventory may eventually bloom. A number of Life Extension Foundation articles and protocols (some links) are a good introduction. We've even used immunochemo until the day before surgery and the day after, not just a month or two away like ordinary chemo.
Some para aortic sites and other extrahepatic mets can be removed by top surgeons. Immunochemo control of metastasis is key.
Many things are possible. Reading is fundamental.
I would suggest throwing that into the mix for at least a week before and a week after surgery. It's available OTC (brand name Tagamet), and it's definitely in the "can't hurt, might help" category. There is some research that it limits the ability of stray cancer cells to attach to healthy tissue during/after surgery (always a risk).
I got my surgeon's ok on this (as it had to go on the list of meds I would be given while in the hospital), and he was fine with it, although he did point out that there would be no way to know for sure if it worked. My reaction to that was "well, duh, but as I'm not doing a scientific study here, I don't really care".
As he said, I have no way of knowing for sure, but I only took the cimetidine on my 5th surgery, and that happened to be the last one, over two years ago. Maybe it wasn't the deciding factor, but I'm glad I tried it.
Research article here:
http://www.lef.org/magazine/mag2007/may2007_report_cimetidine_01.htm
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