First long time coming. Need some encouragement

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

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???

Nice work.  Please keep us updated

Chelsea

annalexandria 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

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

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