stage 4 and want aggressive treatment

[boxofrain]

have rectal tumor and mets to liver and lungs. just finished second round of folfox 6. want aggressive intervention, not just chemo. could go anywhere...england. germany. italy.. any ideas/thoughts? want to try for cure...experimental/trial ok. can pay. cnames/phone numbers/emails appreciated. desperate.

boxofrain

[peanut_8]

If I were in your situation, I would go to Sloan Kettering in NYC. There are several CC members who do, and I suspect they can help you out with contact information.
Good Luck

[andy21]

The longevity of a Stage IV patient is inversely proportional to the patients average distance from Dr. K and Dr. D at Sloan Kettering.

For Stage 3 and below any top 25 Cancer center is fine.

[hart2hart]

We agree with Memorial Sloan Kettering in NYC.

Where do you live? Keep being aggressive and positive!

Hugs for you!




Julie and Pete
Stamford, CT

[Stanfordmom]

Hi There,
I live on the west coast and seek treatment at the MSKCC. I just sent you a PM with doctor information.

Also search for HAI pump on this forum and the info might help you decide if that is something you want to pursue.

Stay strong and positive! We are here for you.

Sha

[lpas]

I agree with all of the above but would also consider implementing a strong routine of supplements and regular exercise (if you don't already). As far as supplements are concerned, I'd look in particular at things like a daily baby aspirin, vitamin D, cimetidine (Tagamet), PSK, milk thistle, turmeric (curcumin), resveratrol, and IP6. It may also be worth talking to your doctor about Celebrex.

Good luck!

[momof3]

Does Dr. K only treat patients with liver mets?

[rp1954]

How much have you read about cimetidine and celebrex here? Did they give you China's C-12 biomarker battery of cancer assays near diagnosis or surgery? The lung part, I would look at Sophy's and CB75's comments on Rolle's laser surgery for lungs.

[plastikos]

Bumping this thread up after back reading through it. I am also stage IV currently on mg last 2 (out of 12) infusions of FOLFOX + Erbitux. Last liver MRI showed no suspicious lesions. Although I am currently happy with how my treatment is going I dont want to leave any stone unturned. Since I keep reading about Dr. K and MSK I was wondering how someone outside the US could get a second opinion? Would an online consult be possible?

[juliej]

Bumping this thread up after back reading through it. I am also stage IV currently on mg last 2 (out of 12) infusions of FOLFOX + Erbitux. Last liver MRI showed no suspicious lesions. Although I am currently happy with how my treatment is going I dont want to leave any stone unturned. Since I keep reading about Dr. K and MSK I was wondering how someone outside the US could get a second opinion? Would an online consult be possible?

Plastikos, MSK does some online consults, but it needs to be arranged through your doc. Ask him/her for a referral.

It sounds like you're doing great, but I understand your desire not "to leave any stone unturned." Is your CEA normal? As you probably know, liver mets recur in 60-80% of patients, especially during the first couple of years after resection. Having more than 4 mets, bilateral involvement, and spread over 50% of the liver are negative prognostic indicators. If I recall correctly, you had only 2 small mets in one lobe, so you have no worries there.

I had an HAI pump implanted during my liver resection, more as an insurance policy than anything else. I had 6 cycles of FUDR in the pump and have had clear liver scans since then. If you have any questions about the process, let me know!

[gator.girl]

As soon as I found out about the HAI pump I immediately talked to my oncologist about it. His take was that it was "old technology" he felt that interventional radiologists had better options for the liver including radioembolization and chemoembolization. I had the first done to my liver (right side) which was successful but I ended up with complications... I would consider having it done for the other side of my liver if it is a possibility down the road.... This said I keep my options open with the pump if all else fails... They say they have to remove your gallbladder to install the pump then you have to fly back to ny every so often to get the pump refilled...

Pros and cons - just like in anything else...

[plastikos]

Bumping this thread up after back reading through it. I am also stage IV currently on mg last 2 (out of 12) infusions of FOLFOX + Erbitux. Last liver MRI showed no suspicious lesions. Although I am currently happy with how my treatment is going I dont want to leave any stone unturned. Since I keep reading about Dr. K and MSK I was wondering how someone outside the US could get a second opinion? Would an online consult be possible?

Plastikos, MSK does some online consults, but it needs to be arranged through your doc. Ask him/her for a referral.

It sounds like you're doing great, but I understand your desire not "to leave any stone unturned." Is your CEA normal? As you probably know, liver mets recur in 60-80% of patients, especially during the first couple of years after resection. Having more than 4 mets, bilateral involvement, and spread over 50% of the liver are negative prognostic indicators. If I recall correctly, you had only 2 small mets in one lobe, so you have no worries there.

I had an HAI pump implanted during my liver resection, more as an insurance policy than anything else. I had 6 cycles of FUDR in the pump and have had clear liver scans since then. If you have any questions about the process, let me know!

Thanks juliej. My CEA was normal even before surgery and has been normal since. Yes had 2 sub 2cm mets in the left lobe only. Will ask my onc about the option of a referral.

[bjones1128]

On the "no stone unturned" thought wave... What can they do at Sloan Kettering that can't be done at another good cancer center (for advanced colon cancer where surgery is not an option?) I checked out their Web site, all I could find is that they would do chemo for very advanced cases. I am already getting chemo...

[jillbugs4110]

I wish I could see Nancy k...if you have the means do it she seems amazing.