Liver Surgery Update-Please give me advice
My question to all you Stage IV survivors, and fighters out there, what's next? Does this nightmare ever end? What options does this leave? How do you restore someone's HOPE to live?
This has been a rough day. Marie
Comments
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Marie
I am unbelievably sorry for you and your sister and your family that she went through this today. I have no words of advice regarding in what direction you should now head. Is it possible to have HIPEC done? Lizbiz had her surgery on Monday and as far as I know she also had liver involvement and spread within the abdomen. Is it possible to get an opinion from Lizbiz's doctor? I believe she posted the name somewhere on a post here but perhaps someone else knows who the surgeon is.
I can and do continue to hold your family in prayer and I ask that your sister not lose hope and continue to seek treatment.
Sending love to you,
Amy0 -
somewhat the same
11/08 I had one little spot on my liver that the PET showed. When he opened me up he said it was all over the top of the liver and just closed me back up. Then they did liver embolazation and wiped out half my liver. I am ned 13 months and feel better then I have in years.
Hang in there!!!0 -
KerryKerry S said:somewhat the same
11/08 I had one little spot on my liver that the PET showed. When he opened me up he said it was all over the top of the liver and just closed me back up. Then they did liver embolazation and wiped out half my liver. I am ned 13 months and feel better then I have in years.
Hang in there!!!
Did you also liver have abdominal involvement? Did you continue systemic chemo? She was declined by insurance for SIR Spheres, but I do not know about embolization. I think the theory is that it is being spread through her lymph system? Happy you are NED.0 -
What's Next?
Always a big question, Marie
You and your sister certainly had a very rough day alright. Glad the resection went well and cleared the blockage. Perhaps RFA and CyberKnife would be an option for the liver? Did they say anything about this?
As a Stage IV, I can only say you keep "swinging for the fence" until there is nothing left to try or the body simply cannot take the pounding and abuse anymore. It's the "knowing" of this that is the hardest part - and that's where there is no easy answer.
As long as there are viable treatments, procedures, and surgeries available, then if at all possible, we MUST just keep going - to let up after coming so far, well, it's hard to "fight for the same ground" again you know?
General Patton had a saying "You never pay for the same ground TWICE. You keep advancing." These are good words and ones that I've lived by myself.
Does the nightmare ever end?
Again, another age old question. I think the easy answer is NO. Even when you win, you can't let up and you never get over the feeling that it could come back. Anybody tells you differently, they are lying. It's the #1 THING that cancer patients in the fight or out of the fight think about - and on a regular basis.
You can get the nightmare to a stopping point, or even go NED and just follow it diligently for the rest of your life - that's what we all have to do. We can never surrender!
How do you restore someone's HOPE?
This is an individual thing. It plays out in different melodies for the cancer patient all through treatment and afterwards. There are days when you want to wave the white flag and say you are "ready." Next day, you are hell bound and determined to fight this thing to your last breath.
I think we all try and come to terms with dying, even though we don't really think we will...we just kind of talk it out to get us over that hump and understand a certain possible reality. All of us think we will win - and we should 'cause if we don't...well...
HOPE comes in many flavors - for some it is their kids or their grandkids - for others it is their spouse or significant other. There are all sort of little things too that we all enjoy and want to see: Seeing the Super Bowl again, watching another season of American Idol. Or there might be that trip you've always wanted to take - so many things can motivate us.
Deep down though HOPE has to come from WITHIN. Inside each of us, we all have to walk ALONE in reaching for what we want...it's nice to have some help and motivation, but WE have to believe there is a chance - and Chance weds Hope - and that's what makes the world go 'round.
It's different things to different people. No matter what it is though that turns the trigger, just go for it in earnest and sincerity - and when you reach it, savor it and then file it away for future inspiration.
I'm sorry things were so rough - here's hoping to a better day tomorow
-Craig0 -
Marie,Sundanceh said:What's Next?
Always a big question, Marie
You and your sister certainly had a very rough day alright. Glad the resection went well and cleared the blockage. Perhaps RFA and CyberKnife would be an option for the liver? Did they say anything about this?
As a Stage IV, I can only say you keep "swinging for the fence" until there is nothing left to try or the body simply cannot take the pounding and abuse anymore. It's the "knowing" of this that is the hardest part - and that's where there is no easy answer.
As long as there are viable treatments, procedures, and surgeries available, then if at all possible, we MUST just keep going - to let up after coming so far, well, it's hard to "fight for the same ground" again you know?
General Patton had a saying "You never pay for the same ground TWICE. You keep advancing." These are good words and ones that I've lived by myself.
Does the nightmare ever end?
Again, another age old question. I think the easy answer is NO. Even when you win, you can't let up and you never get over the feeling that it could come back. Anybody tells you differently, they are lying. It's the #1 THING that cancer patients in the fight or out of the fight think about - and on a regular basis.
You can get the nightmare to a stopping point, or even go NED and just follow it diligently for the rest of your life - that's what we all have to do. We can never surrender!
How do you restore someone's HOPE?
This is an individual thing. It plays out in different melodies for the cancer patient all through treatment and afterwards. There are days when you want to wave the white flag and say you are "ready." Next day, you are hell bound and determined to fight this thing to your last breath.
I think we all try and come to terms with dying, even though we don't really think we will...we just kind of talk it out to get us over that hump and understand a certain possible reality. All of us think we will win - and we should 'cause if we don't...well...
HOPE comes in many flavors - for some it is their kids or their grandkids - for others it is their spouse or significant other. There are all sort of little things too that we all enjoy and want to see: Seeing the Super Bowl again, watching another season of American Idol. Or there might be that trip you've always wanted to take - so many things can motivate us.
Deep down though HOPE has to come from WITHIN. Inside each of us, we all have to walk ALONE in reaching for what we want...it's nice to have some help and motivation, but WE have to believe there is a chance - and Chance weds Hope - and that's what makes the world go 'round.
It's different things to different people. No matter what it is though that turns the trigger, just go for it in earnest and sincerity - and when you reach it, savor it and then file it away for future inspiration.
I'm sorry things were so rough - here's hoping to a better day tomorow
-Craig
I am so sorry that
Marie,
I am so sorry that you and your sister went through this today. I am also stage 4 cc with mets to the liver and lungs. Surgery has not been an option for me. I have been doing chemo since 3/09 when I was DX. My sister started posting on this board before I did , and I just recently joined in.
My sister has been an unbelievable support to me and my 14 year old daughter. She has been with me every step of the way. I don't know what I would do without her. I can call her any hour of the day with any problem and she is always there for me. She also still keeps me focused on living my life and having fun.
I am really lucky to have my sister and your sister is really lucky to have you.
You and your sister and her family are all in my prayers.
Brenda0 -
So Sorry Marie
I hope your sister is able to find another treatment plan. It is so hard to get this kind of news. It takes some time to restore a hopeful outlook. She is very fortunate to have a sister like you to accompany her on this journey.
Bye for now... Rob; in Vancouver0 -
Marie
Wow - what a day you two have been through. I'm glad they were able to take care of the blockage and give her relief there. But how disappointing to find out they can't do the resection.
I know they keep coming up with more and more procedures that I know nothing about, but might work for your sister that are used on the liver when surgery isn't an option. There are others here that have been down those roads and will post.
Unfortunately you can't restore someone else's hope to live. They need to have it within themselves. But you can support them and let them know you are with them and will support them all the way, no matter what they decide for treatment or no treatment.
Your sister is very lucky to have you! I hope you have someone that you can lean on a bit right now too.0 -
"I am writing to tell you to
"I am writing to tell you to NEVER give up hope!" You know who said that? You did. Stay strong and keep being the wonderful being that you are. You are an amazing sister; the kind of sister that I hope my girls grow up to be.
Peace,
Roger0 -
I am a stage IV about to
I am a stage IV about to undergo a liver resction in just a couple of days. I am acutally on round 3 of cancer. Been fighting two completely different types for 2 years.
I am sooo sorry to hear your news. There are so many great poeple on this site with so many great experiences....I hope there are answers here for you! HOPE is just something one has to have. How do you get it....anytime I think I'm starting to lose it, I look at all the great survival stories here. There was one site specifically directed at stage III and IV survivors. Reading their stories, is bound to restore HOPE!! Miracles happen every day and prayers are answered. I know your support will give your sister strength!!!0 -
Liver Surgery
Marie - sounds like your sister and my husband are in the same boat! Dx May 2008 - then Folfox, Folfiri, PET negative, went in for liver resection May 2009 only to find there were many more tumors on the liver and in the abdomen. Closed him up and did nothing. He has been on 3 clinical trials since then of which the first two did not work at all. Started a new clinical trial a few weeks ago but will be weeks before we know how it is working. I made contact with the Doctor someone mentioned regarding HIPEC - and believe it or not he responded to my email. Here is his contact info:
Martin Goodman MD FACS
Assistant Professor of Surgery
Tufts Medical Center
Director of the Peritoneal Surface Malignancy Program
800 Washington St #9248
Boston MA 02111
617-636-9248
Not sure if he can help or not but certainly worth a conversation. He asked that I send him copies of scans and chart info which we plan to do as soon as we have scans from currently clinical trial.
Tell your sister there is always HOPE - and for her to think about her family as that seems to keep a lot of people going....gives them the HOPE they need.0 -
Lizbizmom_2_3 said:Marie
I am unbelievably sorry for you and your sister and your family that she went through this today. I have no words of advice regarding in what direction you should now head. Is it possible to have HIPEC done? Lizbiz had her surgery on Monday and as far as I know she also had liver involvement and spread within the abdomen. Is it possible to get an opinion from Lizbiz's doctor? I believe she posted the name somewhere on a post here but perhaps someone else knows who the surgeon is.
I can and do continue to hold your family in prayer and I ask that your sister not lose hope and continue to seek treatment.
Sending love to you,
Amy
Liz's surgery was scheduled for 2/1 with Dr. Goodman at Tufts. She posted about it several weeks ago. She is scheduled for this major surgery because she has failed on chemo. If memory serves it is liver resection, rest of her large colon, part of small intestine, I think gallbladder, hysterectomy(?) and HIPEC. I remember her telling me that if Dr. Goodman did not take her on she was ready to attach herself to his leg like a screaming two year old. Emotionally, she broke down with the doctor. Have not heard from her but it is very early yet and she doesn't post too much.
Marie, I sorry at this setback. I don't know what else to say, words escape me at this moment. I remember a webinar I was on with Dr. Choti at Johns Hopkins a few weeks ago and he did talk that there is a very fine line when considering doing a resection, as far as stopping chemo, having progression while awaiting resection and keeping the cancer stable while waiting. There are options when more than one organ is involved.
Again, I'm sorry this setback has happened. Please let us know if there is a new game plan put in place. Please tell your sister we will keep her and her family in our thoughts and close to our hearts regarding this most difficult news. Take care - Tina0 -
Dr. Goodmanlinandtom said:Liver Surgery
Marie - sounds like your sister and my husband are in the same boat! Dx May 2008 - then Folfox, Folfiri, PET negative, went in for liver resection May 2009 only to find there were many more tumors on the liver and in the abdomen. Closed him up and did nothing. He has been on 3 clinical trials since then of which the first two did not work at all. Started a new clinical trial a few weeks ago but will be weeks before we know how it is working. I made contact with the Doctor someone mentioned regarding HIPEC - and believe it or not he responded to my email. Here is his contact info:
Martin Goodman MD FACS
Assistant Professor of Surgery
Tufts Medical Center
Director of the Peritoneal Surface Malignancy Program
800 Washington St #9248
Boston MA 02111
617-636-9248
Not sure if he can help or not but certainly worth a conversation. He asked that I send him copies of scans and chart info which we plan to do as soon as we have scans from currently clinical trial.
Tell your sister there is always HOPE - and for her to think about her family as that seems to keep a lot of people going....gives them the HOPE they need.
That is the doctor doing Lizbiz surgery, was scheduled 2/1. Marie, you might want to check into this guy, looks like he takes on the tough cases. See my post above. Tina0 -
HIPEClinandtom said:Liver Surgery
Marie - sounds like your sister and my husband are in the same boat! Dx May 2008 - then Folfox, Folfiri, PET negative, went in for liver resection May 2009 only to find there were many more tumors on the liver and in the abdomen. Closed him up and did nothing. He has been on 3 clinical trials since then of which the first two did not work at all. Started a new clinical trial a few weeks ago but will be weeks before we know how it is working. I made contact with the Doctor someone mentioned regarding HIPEC - and believe it or not he responded to my email. Here is his contact info:
Martin Goodman MD FACS
Assistant Professor of Surgery
Tufts Medical Center
Director of the Peritoneal Surface Malignancy Program
800 Washington St #9248
Boston MA 02111
617-636-9248
Not sure if he can help or not but certainly worth a conversation. He asked that I send him copies of scans and chart info which we plan to do as soon as we have scans from currently clinical trial.
Tell your sister there is always HOPE - and for her to think about her family as that seems to keep a lot of people going....gives them the HOPE they need.
We have contacted many doctors regarding HIPEC and due to the extent of the disease, we have not found one that is willing to try this. We were lucky to find one guy to do the liver. I'm curious why they couldn't or didn't suggest HIPEC while she was opened, but again I believe they think it is systemic and needs to be treated that way. I think she needs to heal/recover and gain her strength before she starts any treatment. She will be in the hospital for another week.
Thank you for your words of encouragement and HOPE, all of you.
Craig, thank you for your continuous words of wisdom and inspiration. Thank you to everyone for reminding me of my own words of encouragement.0
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