no surgery

janderson1964 said:

All I can think about right

All I can think about right now is all of the time and money I wasted in the past three weeks.

No use looking back! It is
No use looking back! It is what it is...one day at a time...and all of those other stupid things we say. Oh and cancer sucks!! Really really sucks. Someone who has fought this for as long as you have should get a break!

How have you tolerated folfox and folfiri in the past? When do you see the onc?

You know you have many prayers and positive thoughts coming from us.

johnnybegood said:

so sorry

jeff for this latest set back i dont post much but i am keeping up with your latest battle,just please keep the faith no matter where your journey takes you....Godbless...johnnybegood

Jeff, I'm really saddened to

Jeff, I'm really saddened to read this update. JBG is right. No matter what keep the faith. And Cynthia offers some good ideas. Look for all options. Surgery and/or chemo are both possible options still. I certainly don't understand this horrible disease but I also believe my vision/perspective is limited. I believe that there is a bigger picture where the trials we endure today will be seen in a different light. Love, light, strength, peace are what I pray for you today. Blessings to you and your family. 

Sincerely,

Philip

the Nth surgeon

That damned spot count and extrahepatic disease business for resection is treacherous but highly variable. This moment iswhere the fight true starts.  Our job is to find some Babe Ruth, perhaps only locally known, playing in Pittsburg, Europe, Asia, So America or where-ever if necessary.  Hopefully you can find a thoracic team like Rolle that can deftly handle more spots than your drs so far.

Our reaction to this Dr No situation was to start a rolling barrage of visits, international emails, and opinions, SBRT (for us, but whatever possibilities) vs surgery.  Local 1st line of oncolgists were slavering over chemo even though they only expected a few months net benefit for a big para aortic mass; the first 3 surgeons were No, No and No.  Probably too big as CT imaged for fully destructive radiation, the locals were still interested IGRT - worse, the true size was a congomerated cluster twice as large as imaged.    

Step 1 Loaded wife to with immunochemo until as near to surgery as possible.  I found a number of Japanese papers to support 5FU based drugs immediately before/during/after CRC surgery for safety and net benefit.

Step 2. Find a surgeon willing to credit the possible anti-metastasis benefits of cimetidine, celecoxib, oral chemo, etc AND use it as close to surgery as possible.  Because of the location difference (lungs), wound risk and chemo timing may be a little different, but don't fooled by the ultraconservative cover-myself numbers like 3-6 weeks.

Step 3. get stamped for refusals on radiation and "their" chemo for surgeon's file (s/he was well informed and turned them down). 

Step 4. implement LEF (pre)surgery protocols including wound repair nutrition, remove excess vit E etc for bleed potential, get to satisfactory PT and PTT. 

Step 5.  Day after surgery my wife was fit enough for immuno oral chemo.  

The average doctors stay home and suck or break wind.  And that's ok, every one needs to honor their limits.  It's the hexing or discouragement that their best is everyone else's limit too, that boils my blood.

tanstaafl said:

the Nth surgeon

That damned spot count and extrahepatic disease business for resection is treacherous but highly variable. This moment iswhere the fight true starts.  Our job is to find some Babe Ruth, perhaps only locally known, playing in Pittsburg, Europe, Asia, So America or where-ever if necessary.  Hopefully you can find a thoracic team like Rolle that can deftly handle more spots than your drs so far.

Our reaction to this Dr No situation was to start a rolling barrage of visits, international emails, and opinions, SBRT (for us, but whatever possibilities) vs surgery.  Local 1st line of oncolgists were slavering over chemo even though they only expected a few months net benefit for a big para aortic mass; the first 3 surgeons were No, No and No.  Probably too big as CT imaged for fully destructive radiation, the locals were still interested IGRT - worse, the true size was a congomerated cluster twice as large as imaged.    

Step 1 Loaded wife to with immunochemo until as near to surgery as possible.  I found a number of Japanese papers to support 5FU based drugs immediately before/during/after CRC surgery for safety and net benefit.

Step 2. Find a surgeon willing to credit the possible anti-metastasis benefits of cimetidine, celecoxib, oral chemo, etc AND use it as close to surgery as possible.  Because of the location difference (lungs), wound risk and chemo timing may be a little different, but don't fooled by the ultraconservative cover-myself numbers like 3-6 weeks.

Step 3. get stamped for refusals on radiation and "their" chemo for surgeon's file (s/he was well informed and turned them down). 

Step 4. implement LEF (pre)surgery protocols including wound repair nutrition, remove excess vit E etc for bleed potential, get to satisfactory PT and PTT. 

Step 5.  Day after surgery my wife was fit enough for immuno oral chemo.  

The average doctors stay home and suck or break wind.  And that's ok, every one needs to honor their limits.  It's the hexing or discouragement that their best is everyone else's limit too, that boils my blood.

Jeff, I am sorry that you

Jeff, I am sorry that you have yet more to deal with....certainly isn't a fair disease. As others have said, because the doc doesn't have a plan doesn't mean that you can't. Getting 6 discs of scans is a great sign to me that you still heave plenty of fight and won't settle for a limited opinion. 

I have been treated at MGH. Although I have been lucky enough not to need a super aggressive approach, many I have met there have and have been quite pleased with the care and the willingness to look the through a wider lens. My care there is excellent.

Prayers and best wishes as you discern the next steps and for the boldness to move forward.

hugs,

Clare

janderson1964 said:

I got six disc of the scans

I got six disc of the scans from the hospital to shop around for a surgeon. Any one have any agressive thry know of that might take me on.

The surgeon who did the work for this woman I know

is at Georgetown University Hospital, in Washington DC.  But I'm sure that he's not the only one who is willing to take on cases that are challenging.  I think you should put this up at the Colon Club.  There are a lot of east coasters there who may have some good ideas.

I believe it was Brownbagger over there who said you want a "cowboy" for your surgeon, someone who will recognize that the dice needs to be rolled while there is still time.

alexinlv said:

I am so sorry! I've been

I am so sorry! I've been praying and hoping for the best for you! Keep up the good fight.  You are an inspiration.  My prayers are with you. 

curative, comforting, or life prolonging

Geez. I'm so sorry for you. I've had less than stellar experiences with surgeons myself, and have come to the conclusion that they fall into two categories. There are those that believe that most Stage IVs are hopeless cases and aren't worth the time and effort because they believe the final outcome will be the same - these surgeons will only operate if they believe that their work will cure the patient (very rare cases) or will make them more comfortable if debulking is needed or to obstruct a blockage.  Then the other category believes in prolonging life in as many cases as would benefit, knowing full well that a complete cure is not likely but that extending a person's life through a series of interventions is still OK and worth trying. How do you find these people??

I had an experience where I was sitting in a surgeon's examining room and overhead his conversation with my oncologist, and I remember him saying the word "life prolonging" in a really sarcastic way, as if he couldn't understand why I would want this and why he should waste his time on it.  I gave  him an earful after I heard this, and his explanation was that the "data" (based on people 50 years and older, which I am not) showed low life expectancy for cases like mine, so why bother? (I was pissed, needless to say. What a total putz!) 

I totally understand the reality of my case, yet I read stories of people on this board and colon club who do find surgeons in the life prologing category who do perform piecemeal removal of their mets, in liver and lungs and other places, and these lucky souls have lived many extra years because of these staged interventions - combination of multiple surgeries, chemo, radiation, liver pumps, RFA, VATS, etc.  Cases worse than mine, cases better. I copy down names of doctors and clinics these lucky folks use and when my tumor load shrinks I'll be callin'. 

I wish that clinics and doctors would be up-front as to their positions on curative surgery, before you pay for a consultation.  If they're in the former category, don't even bother talking to them.

Good luck shopping around. If you find a good surgeon who will take your case, please post !!

Karin