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Cancer more extensive than i thought

eric38's picture
eric38
Posts: 588
Joined: May 2009

Just sat down and had my first detailed discussion with the oncologist. I thought my problem was confined to the liver but apparently it is all over my body. Pelvic,aortic,abdominal lymphs + abdominal cavity and fatty tissue. He gave me the non curable and putting out the fire speech. He did say it is still possible to live for years but it will eventually catch up with me. Man, I`m sorry I asked. Ignorance is bliss. I am still trying to maintain a positive attitude but this is definitely an emotional set back. I have not given up, this just makes it harder to stay positive. I will continue to fight and hope all of you are doing well.

Eric :.}

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

Eric,

I am so sorry to hear that news. As hard as it is for me to read, I can't imagine being the one to have had to type it. You will be in my thoughts and prayers and you face this difficult uphill battle. Just know that there are people pulling for you.

eric38's picture
eric38
Posts: 588
Joined: May 2009

luv3jay - Thank you.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Eric,

I'm sorry- I can understand the feeling you have in "being sorry you asked". I know it's hard to be positive now, but positive is what you must be! Although it will be hard, you can do it! I'm sure some others on this board will chime in with telling you how they are fighting it, even with it being pretty extensive.
Eric, I will keep you in prayer. I think sometimes just knowing others care and are pulling for you helps in your attitude. It does in me, anyhow! My friends and family were really great for the first 6 mos to even a year. Now, though, understandably- I guess I'm "old news" and I don't hear from them very much anymore. I understand- life goes on and they don't want to hear about it much anymore. Except for a couple of close friends, that is. That's why it's so great to have this board and hook up with others. It'd be good for you, if you haven't, to try to find anyone from the board who may live close to you. I've found a couple and have spoken to them by telephone (messages and phone #s exchanged through the private message system on this board). It really is helpful to just know they're nearby and can relate.

You take care- I'm thinking of and praying for you!
Lisa

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

You are one of the most positive people I have met on this list. I am sorry for your news. I will keep praying, as well as keep passing jokes. I know you need both.

Many hugs, Vicki

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

Sorry about your diagnosis, it's always difficult to hear your Drs speak so bleakly. I guess we're in the same boat. You trumped me on the aorta involvement, that's hardcore. I have a small tumor about two inches away from my aorta but it's not involved yet. I responded really well to folfox w avastin the first time around, so I'm hoping for another good response. I have already began my own treatment that I take while on chemo. I've added some new tricks this go around. Maybe this will help, maybe not, but I feel good about it. I start everyday with fresh juice. 4-6 lemons, fresh ginger, spinach, beet, carrot, apple, and now kudzu. I take vitamin b complex, vitamin d, milk thistle, and now resveratrol. I've been taking 160-200 mg for the last month or so, I've ramped it up to about 1 gram per day. I have been feeling absolutely fantastic, which is why I was surprised to learn of my high level of recurrence. I have faith that the Kanzius Machine is going to revolutionize cancer treatment, it doesn't hurt that colon cancer is the initial target. I think human trials are scheduled to begin around the middle to end of 2010. Keep in mind that everything thing involved has already been EPA approved so the only thing needed is to prove that it works. That could be very swift. I guess the targeting mechanism is what needs to be figured out. If we can hang around until then, we should be in good shape.

Julie 44
Posts: 479
Joined: Oct 2008

Hey Eric,
I am sorry to hear about your new involvement...I hope you will go and get a second opinion...It is well worth it just to make sure everything is being done that is possible...Different doctors have different treatments so please go and get one..Also it will give you peace of mind...Good luck and I will keep you in my heart...You have given so much to me and everyone on this board we are all keeping you in our prayers..Keep the laughter.....JULIE

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Eric..... this is bull..... I really really understand what you are going thru. You have still got to stay positive though. I know that is easier said than done. Please PM me if you want to talk in private. You are in my prayers

Jennie

eric38's picture
eric38
Posts: 588
Joined: May 2009

Jennie - I know you have had your share of woes and I appreciate your prayers and support. We can beat this.

Eric

pascale
Posts: 17
Joined: Jun 2009

My mother is in a similar situation (mets to liver, lungs, peritoneum...) and I am also hoping that the Kanzius machine is going to be the alternative to chemo in the near future. All we have to do is hang in there! Snommintj, your regimen sounds great. A naturopath had prescribed resveratrol for my mother, along with a bunch of other supplements (lots of vitamin D, coriolus versicolor, CoQ10, and much more...) but we've had to suspend these since she had the suspected bowel obstruction and surgery. I'm looking into liquid alternatives now because she's on a semi-solid diet.

Any idea when it will be possible to enroll in human trials for the Kanzius machine?

eric38's picture
eric38
Posts: 588
Joined: May 2009

I`m sorry. Let me clarify the aortic lymph involvement. It is the lymph nodes in the perotoneal aortic region which is actually where the main blood supply from the heart runs through the abdomen. So, it is not actually near my heart but it is still not good. Basically, There is extensive involvement all through my pelvis and abdomen. The surgeon said he got all he could see but apparently there was alot left over.

Eric

CanadaSue's picture
CanadaSue
Posts: 340
Joined: Apr 2006

Eric,

So sorry to hear this news. And it has knocked you on your butt for a bit, but get up and keep fighting! Keep those positive thoughts going!

My thoughts and prayers are with you!

HUGS,

Sue

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Eric,I am so sorry to hear that.Have you ever tried to get a second opinion?Maybe this is the time to go see another oncologist.Please still stay positive and keep fighting.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I am so sorry to hear this news, and glad that you shared it with us. I've always appreciated your perseverance and positive support on this board, and send all I can to add to it. The following saying has helped me: "Courage is not the absence of fear or despair, but the strength to overcome them."

Leslie

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Eric
Thank you for sharing your post...I'm speechless and in shock just reading it. You know I'm pulling for you all the way...that's just so hard to believe right now.

At one time not too long ago, I was being told that "the house was on fire." He has told me on more than one occasion that we might get to the point where there is nothing more that we could do - that's a very hard thing to wrap your mind around.

Recently, my existing onc told me that the spots on my pleura were treatable, but not curable, so I get a feel of what you are trying to say. It was at that point, I decided to take a leap of faith and go and get a 2nd opinion. I know you're at Baylor now, and I got my RFA procedure done there, so I think they do good work. I had asked if I could seen an oncologist there, but the surgeon said I had a good onc, so I stayed with him.

I decided to go down to UT Southwestern Medical Center...it's at 3500 Gaston Ave in Dallas. They are currently reviewing about 5 years worth of test data, medical notes, and scans to determine my next step.....these spots on my lungs have me crazy, because it's the next stop on this Crazy Colon Train - colon/liver/lungs/brain.

I tell you what, man...for the both of us, why don't you set up an appointment down there and just see what they have to tell you...they are a teaching hospital and up to date and on the cutting edge of research down there and may can help the both of us. Right now, they've got my life in their hands, but I'm willing to chance it....there may be no better hospital in our area than this one. It would make me feel better if you would try this.

You know you can PM me and we can talk that way...or if you want to talk, I'm open to that. I want to be able to try and provide some insight for you and ease your burden, because I do understand. I'm worried sick about you and this was devastating news.

I've appreciated your posts and our PMs back and forth...you told me I was an inspiration, but I believe it is you who are the inspiration and not me.

Hang in there....and think about what I said about UTSW, that cannot hurt anything. Even if they see it the same way, it will at least confirm what you've been told.

I know you said "ignorance is bliss"...I understand that, but my belief is that I've got to know what the truth is, so "I CAN GET MY MIND RIGHT" and get after it.

I'm praying for you and so sorry you have to deal with this mess....it just sucks for all of us out there.

I don't know what else to say right now - just hang in until we get another opinion.

Please keep me posted...you're a fighter like me and while we may not win, we're not going out EZ! Let's just keep trying for "extensions" to keep going, until we can figure something else out. Keep posting to the board, this will help you feel like you are not a victim. I understand your humor now and you help people in more ways than you realize.

Your pal - Craig

eric38's picture
eric38
Posts: 588
Joined: May 2009

Craig - Thank you for the support. I really appreciate it. I know I said ignorance is bliss but I also know knowledge is power. It`s still early in the game and noone has sent me home to die and there is still plenty of fight left in me. I still believe in miracles and God is above all this.

Eric

mom_2_3
Posts: 964
Joined: Nov 2008

Eric,

A good friend of ours (I have mentioned him before) had a similar diagnosis to your own with extensive lymph node involvement pretty much everywhere. He did not have abdominal cavity mets. With Folfox/Avastin alone he beat all those lymph nodes into submission (they were biopsied and positive for cc) and he has since been 5 years NED. I am praying you have a similar result. Have you looked into HIPEC?

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Sorry to hear this Eric. I've never asked the "how long do I have Doc" question. I've been in treatment non-stop for 5+ years and I still have cancer. While my situation isn't the same as yours, you have to keep in mind when I first started this...crap, Avastin had not been widely used, I entered into a Phase II clinical trial one month after I started chemo. Also, Erbitux was not out there either as an option. So in less than 2 years time, both of these drugs became available to me. I pretend that I am riding this wave of technology and I just keep on riding it until something else comes out. This will most likely do me in too in the end. I can only imagine what you're going through, I know it's not easy, but take it a day at a time. That is all ANY person has, cancer or no cancer, we live day to day. We are just a little more privy to that fact. Hang in there, a new drug is right around the corner.
-phil

JR's picture
JR
Posts: 140
Joined: May 2009

Eric,
Sorry to hear the disturbing news. My onc tends to tell me the short story unless I ask alot of questions, and I do. He tries to be positive but it doesn't always seem that way. For example. I told him I was thinking of going on SSDI and he encouraged me to so I could live out my last days with my family and not stress about my job. Little does he know, my last days are a long way off. My dx was not good from the start, colon cancer with my liver fully involved and several mets to both lungs and a spot on one adreenal (no spell check) gland. Keep your chin up and lets all fight this son-of-a-***** together.

John

eric38's picture
eric38
Posts: 588
Joined: May 2009

Thanks to all of you for your kind support and caring words. Don`t worry about me. I will remain positive and determined. My sense of humor has not and will never be effected by this. Cancer does not define me or anyone of us. If I let this disease rob me of my joy then it has already won and it does not deserve any credit or recognition. I will enjoy my life and hopefully enhance some others along the way.

CANCER? - NOT IN MY HOUSE!!!!

Eric (:.}

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

...Better remain positive, and never give up! I'd go elsewhere of course as well, but don't find the dr's words as the gospel! they don't know..my onc would never give me a prognosis, as she said, "I won't say that anymore, I've had people sent out for liver surgery who I never thought would have made it through 3rd treatment" people are surprising her everyday!

Things in the body can change all the time, and miracles do happen, you just live the way I live, day by day, and nothings going to get me down, good things will happen to you as well! I will keep you in my prayers!

"Dream as if you'll Live forever, Live as if you'll die tomorrow"~James Dean, and one of my all-time favorite quotes :)

Hugssss!
~Donna

taraHK
Posts: 1961
Joined: Aug 2003

So sorry to hear this news. But delighted to hear that your attitude is still so positive. I am with those who believe we just need to stay one step ahead of the game. New drugs, technologies, protocols and approaches are being developed ALL THE TIME. As a friend (caregiver) said to me, all we need to have is a lot of hope and a little more time. I'm 6 yrs since diagnosis, still alive and kicking, and planing to keep one step ahead.

Sending all my best wishes your way

Tara

donnare
Posts: 266
Joined: Jun 2009

Eric,

I am so sorry. I am very new here and you have been so kind and helpful to me. You have such a wonderful positive spirit. Try hard to stay positive and keep fighting. I will be praying for you and and sending all good thoughts your way. Don't lose faith or hope.

Donna

qwe
Posts: 125
Joined: Jan 2009

Hi Eric
I also believe in miracles and the power of prayer.When I found out I had cancer I talked to people all over the world on different message boards I was a stage 2 rectal
cancer and after the surgery I have to wear a bag to poo in and the report came out
NED and I be leave it was from all those people praying for me I know my cancer is nothing like yours but cancer is cancer a scary little bugger it is but hang in there prayers are every were for you.

eric38's picture
eric38
Posts: 588
Joined: May 2009

Don`t worry Donnare. I do take my own advice and don`t let this discourage you.

Eric

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Eric.

I'm so sorry to read this news, but I do believe that if anybody can knock this thing out, it'll be you. You're really one of the most positive people I know.

Take care of you and let us know how it goes. I'll be praying for you.

*hugs*
Gail

eric38's picture
eric38
Posts: 588
Joined: May 2009

Thank you so much to everyone for your prayers and support. I do take my own advice and will continue to stand strong. I feel like I know all of you and am overwhelmed by your vested interest in my well being. It touches me to know that people I have never met are so kind and caring. That alone is enough to give anybody hope. I`m still kicking and still have the ability to laugh in the face of cancer.

Eric

eric38's picture
eric38
Posts: 588
Joined: May 2009

Tootsie - I JUST HAD TO ASK. What the hell was I thinking?
}:.}

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

This is all so scary and we just don't know what we are going to hear when we walk into that ONC Office. It's the s.....

Keep that chin up, you are rght, you still have time to fight the beast! Go do it!

Hugs!!

dorookie
Posts: 1736
Joined: Jul 2007

do happen and dont give up stay positive. God has your back remember that....You will be in my prayers always..

God BLess
Beth

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

don't know what to say except I am really sorry for the news you received. I will continue to pray for you as I do for everyone on this board.

Please, keep us up to date on what you are doing, how you are doing and especially, how you are enjoying the wonders of life :)

Annabelle41415's picture
Annabelle41415
Posts: 6216
Joined: Feb 2009

You have been going through so much and I'm sorry you have more to deal with. I hope your new chemo will work better for you.

Kim

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

to happen. I am sorry you have to deal with this. This crap is so hard. And it really gets hard to always have a positive "I am going to kick this cancers A$$" when you really just want to break down. But I am starting to believe that if you expect a miracle to happen and stay positive (most of the times) things start working out in your favor.

We are here for you!!

eric38's picture
eric38
Posts: 588
Joined: May 2009

I do believe a positive attitude makes all the difference. If you sulk, get depressed and give up then it has already won and cancer deserves no credit or power.

Eric

eric38's picture
eric38
Posts: 588
Joined: May 2009

Kim - It`s not that my current chemo is not working. I haven`t been rescaned so I don`t know if it is or isn`t. I`m going to believe that it is. Those were the results of my pet scan after surgery but before chemo. It`s just that the doctor and I never discussed the scan in depth before. We had already talked about the liver involvement and the surgeon took out the original tumor, all of my ascending colon, and 13 lymph nodes. I was under the mistaken impression that that was all there was(as if that wasn`t enough) but yesterday, for the first time, I asked the oncologist to explain the details of the scan and the future plans for taking care of my liver mets. He explained to me how extensive my cancer was and that it would be pointless to think about any kind of liver surgery as long as all those other areas are involved. He said he is more worried about putting out fires and that even if he did it wouldn`t last and we will constantly have to try to keep ahead of it. Basically, it`s all about keeping me alive as long as possible. That is what I get for being curious. On the bright side, he didn`t make it sound like he expected me to go anytime soon. But he was preparing me for what he believes will be the inevitable. That there will come a day when we run out of options and it will eventually catch up with me. But, I am still staying positive and so much can happen in the next few years. The medical community automatically labels stage 4 as terminal anyway.

Eric

Eric (:.)

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Eric,

I am amazed by your story and strength. Thank you for posting and being so truthful. My sister was recently diagnosed stage 4 with mets to liver and peritoneum. She completed 4 months of chemo which worked well at first and now is hoping for liver resection. It sounds as if you too had this procedure done, along with removal of what could be removed from the peritoneum. Curious if you looked into that "peritoneum washing" procedure. I think not too many cancer centers are doing them.

Marie

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

about your news.that is what i fear the most is something coming back.you are tough and a fighter and i expect to read your post for a long time fight.....fight....fight....go team Godbless.....johnnybegood

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

All I can say Eric is what a blessing you are to this board and I will keep you in my prayers

Peggy ((HUGS))

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm sorry to here about your discussion with the dr.Try and stay strong as much as you can,and don't forget we are praying for you,and remember we will not go gently into that dark night without a fight.god bless.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Eric,

I don't remember where you live, but UCSD/Moores Cancer Center does do the "wash" where they treat widespread cancer in the abdominal cavity by putting heated chemo in your peritoneal cavity for a while. It is supposed to have a good outcome.

If you're close enough or willing to travel, Dr. Andrew Lowy at Moores Cancer Center at UCSD San Diego, CA does do this type of procedure. I've not had it done but I've read about it. He's the doctor that did my liver resection & I would highly recommend him. He trained at MD Anderson a few years back.

Lisa

eric38's picture
eric38
Posts: 588
Joined: May 2009

Thank you for the info. I posted that some time ago and people are still responding. I appreciate that. Things are looking a little better since than they were at the time of that post. The doctor believes I am responding well to treatment. I get erbitux on Wed. and then get rescaned to see where I stand. The doc is expecting a positive outcome but we will see. I will take all options under consideration. A lot depends on the outcome of my test. Can you say SCANXIETY?

Eric

KFen725's picture
KFen725
Posts: 108
Joined: Jul 2009

Eric, praying & hoping for a great re-scan for you. Anything is possible - holding out for GOOD NEWS for ya!

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Eric,
I don't post much anymore, but I found myself reading all the responses to your original post, and wanted to add my support to the chorus. You are one amazing guy; I am now 5 years out of my original stage 3 diagnosis. One of the "benefits" of this disease is that I feel privileged to have a window into the strength of the human spirit.
When I was in treatment, I went to hear a talk by a local Boston oncologist, Groopman, who wrote "The Anatomy of Hope", in which he speaks of the oncologist's role in helping patients navigate this roller coaster of a disease. Really hit home for me.
A good friend with diffuse lung cancer and mets to the brain was in treatment 1 year ahead of me; we are both celebrating NED for over 5 years. Her motto was "I may have cancer, but cancer doesn't have me."
Wishing you continued strength and ongoing hope,
All the best, Judy

eric38's picture
eric38
Posts: 588
Joined: May 2009

Thanks to all for the support and thank you so much Judy for the copliment and the inspirational post. I hope you and your miracle friend have many more years on this earth. The world needs people like you.

Eric

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