Surgery for stage 4!!
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TS:
The tumor was discovered in Feb. 2011. Diagnosed in March 2011. I was going to a surgeon in Philadelphia. I didn’t like his odds the last time I saw him. So I called Dr. Fong at Memorial Sloan-Kettering in NYC. I got copies of all my discs and went to see him April 4, 2011. Went for surgery April 19 to implant a liver infusion pump and clean out lymph nodes, etc. Tumor was inoperable because it was wrapped almost completely around my vena cava. It has taken 2 of 3 arteries leading from heart to liver.
It responded well to Gem/Ox but my body couldn’t handle the oxalliplatin. I received a few doses of FUDR using the pump, but in reality the pump hasn’t been used much at all. I was scheduled for surgery April 4, 2012. But I got a lung infection and we had to postpone it. The tumor started growing again so I am now on Gemzar/Xeloda to try to shrink it a little more. Then hopefully surgery in June.
That’s the short version. I am not a candidate for any cyber knife or radiation because the tumor is right below my heart in the very top of the liver. But I looked into it!
I posted in another thread about anyone living in the area. There are a few of us. One near Easton on the Jersey side. One in Hamilton Twp. NJ. One in Baltimore, MD. And there’s another in this area that goes to Philadelphia. SallyPA is her screen name I think. Or close to that. I’m not sure where she’s from but it’s around here somewhere. If possible, I would love for some of us to find a centralish spot where we could meet and commiserate. An informal support group. I would like to get a support group started around here, but I don’t know that there’s enough people.
When I go to NYC I leave a few cc.org brochures on the tables for people to see. I’m on the gastro floor so I figure one of these days I’ll find someone who has this disease too.I’m also getting surgery May 8th in Pittsburgh! I’ll be at Magee for removal of an ovarian mass.
I had my liver resection last year at UPMC Passavant.
Lots of prayers and keep us posted!
Susie
Liz-that is wonderful news! It sounds like the chemo is certainly doing what it’s supposed to do! Kris-you’re in Willow Grove? You’re not too far from me in Harleysville. Where are you with your treatment and who are you seeing?
I’m constantly telling people I meet about my dad in the hope that someone else might know someone who knows about this disease…and my dermatologist has a patient whose wife is a 4+ year stage four girl… she just went for a treatment in Florida called electroporation (aka “nanoknife”)–I believe this procedure is newer and is for tumors deemed unoperable. They pass an electric current into the tumor and it damages the cell’s surface, causing the cells to die. You may have heard of this already but I thought I’d pass the info along–another arrow in the quiver… I have the doctor’s name if you want it.
So glad to hear your great news! I would say both of you have great news. One gets surgery. And although it is scary and there’s a chance of complications, it is worth it to get this horrible disease out of him!
And Liz, your husband’s tumors are no longer visible? That’s wonderful news! I just wish I could get my tumor that small! It sounds like he’s one of the lucky ones that react well to chemo.
These posts are what give all of us hope. Thanks for sharing.I am posting because I wanted to let everyone know that we found a surgeon who is willing to operate on my dad…A quick history-he was diagnosed last September with main tumor in one bile duct and mets to small colon and omentum. Surgeon in Lehigh Valley (PA) and Johns-Hopkins both said surgery not an option; Fox-Chase confirmed the opinion. My dad had 8 rounds of chemo (gemzar+cysplatin) ending March 16th; CAT scan showed only main tumor remained along with one other tumor on the small bowel. Dr. James Pingpank at UPMC in Pittsburgh was willing to take a look; he performed a laparoscopy last Friday and confirmed that the only visible disease was what the CT showed. My dad is scheduled for surgery this Tuesday (May 8th)–he will have the one lobe of his liver removed along with the bile duct; gallbladder removed, and the section of bowel that has the one tumor. The surgeon did say that conventional thinking says that once the disease is metastatic, surgery is out of the question. But because the tumor on the small bowel is causing my father pain (may be starting to obstruct), and there were no other visible signs of disease, he would operate. Originally, intraperitoneal chemo was also to be done, but he said that it would be too toxic and that regular chemo would have to follow.
Now, I know there are still a lot of risks and unknowns here…. it’s a tough surgery, he’ll have to go without chemo for at least 4-6 weeks, and there are probably cells just waiting to regroup. But–the fact that someone is willing to get the 2 main tumors out–we’ll take that! I don’t know why the other tumors responded to chemo and those didn’t, but I figure that chemo will work better on remaining cells than on stubborn, larger tumors.
We have hope for the first time since this all started. I just really wanted to tell everyone that 1) The person who wrote “Ten things we’ve learned” was absolutely right! Keeping researching until you find someone who says “yes”. 2) Attitude is definitely everything! All along my father said he would beat this so he could get back to work…we all were thinking, “dad, it’s time to retire”…but I believe his attitude really helped with his chemo. 3) See the surgeons out at UPMC! They were willing to take a look!
My thanks always to all who have taken the time to share their experiences so we all can learn. My hope is that the journey can be just a little easier for someone else. My thoughts and prayers are with everyone who is fighting this fight, and I will let you all know how surgery goes.
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