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Hello I'm Mark DX'd June 18th w/ Stage 4 to Liver

mrkrabs
Posts: 4
Joined: Jun 2009

Hi Everyone,

I've been getting strength from the positive posts here. I want to thank everyone for sharing their stories. I intend to share mine until NED. See I already know some acronyms.

Probably like some of you I went to the emergency room on 6/13 obstructed and emergency surgery found the 5cm tumor and a spot removed from the liver both came back positive for cancer. I am 39 years old and still extremely active, although recovering from major surgery and my new poop bag require some adjustments. But I'm still strong. Emotionally I'm a wreck, but who isn't at this point?

Today I have my first appt with my oncologist since being discharged from the hospital. I've read about liver resectioning being a great treatment with lots of success. He didn't mention this to me in the hospital so I'm in the process of getting admitted into MD Anderson since I found out about resectioning on their website. I'm in Baton Rouge, LA; which makes MD Anderson about a 5 hour drive.

I don't know how many are candidates for this procedure, I have no idea if I am a candidate. I don't know so much. I intend to pursue this until I have an answer. Has anybody here had a liver resection?

Anyway thank you for this community. I intend to make liberal use.

Sincerely,
Mark

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

Welcome to the board! So sorry to hear what you are going through, but glad you found this site.

You may be a candidate for a liver resection - my first piece of advice would be to find a liver surgeon who specializes in the liver. If the tumor is located in the right spot(s) then a resection is possible. It's still considered the "gold standard".....However....

If a resection is not possible due to major arteries and blood supplies (liver is tricky) then you may be a candidate for a surgical procedure called RFA - Radio Frequency Ablation. Most of the time in cases such as yours the procedure would be an "open" instead of a laprascopic. The basic premise is they insert a multi-pronged probe directly into the tumor and run alternating current (A/C) through there at a very high temperature and it burns the tumor and fries the tissue in and around where they put the probe.

If RFA does not get all of the tumor, then you can proceed to another sci-fi device, called CyberKnife. This is considered a radio surgery, but it uses highly concentrated radiation over an extended period of time, up to 2 hours over no more than 5 treatments. When they open you up to work on your liver, they can implant these radioactive seed markers into your liver around the tumor area. Then the surgeon and the radiation oncologist do a work up for how they are going to and plug those coordinates into a computer and CyberKnife follows that path they have outlined and it will "cut" out the remnants of any tumor that might be left. They will outfit you with a special vest that is hooked up to the machine that helps CyberKnife adjust its beam and compensate for the movement when you breath in and out.

You will probably end up on chemotherapy as well and the cocktails of choice may differ but you will hear the words Oxaliplatin / Avastin / Xeloda. Some of the other have had a different drug Folfori, I think it's called but I don't have info on that but you can probably search for that on the net.

I had symptoms myself at 40 but did not the official diagnosis until I was 43. I just started my 6th year of the fight just a day or 2 ago, so I've been down a pretty similar road that are embarking on now. I know you feel robbed at this point being 39 and it's ok to get mad, sad, and then resolve to fight on...you are 39 so you have age on your side and it sounds like you are fit and healthy, except for this stuff, so having all of that puts the odds in your favor.

It's a long road and will not be EZ, but we're here to answer any questions or concerns that you might have.

I'm sorry you had to find the board under such circumstances but glad you are here...I went 5 years going it alone and just found this board about 3 weeks ago myself. I've enjoyed being able to try and provide some direction and provide some insight on what I've learned and what I've already experienced.

My best to you
-Craig

impactzone's picture
impactzone
Posts: 542
Joined: Aug 2006

Stage 4 here, sorry you are here as well. I've had a liver resection done and while hard to come back from 5 days in hospital (Stanford) and then about 10 days at home, I was back at work after that and doing well. MD Anderson is the best so you are in GREAT hands.

Chip

nudgie's picture
nudgie
Posts: 1482
Joined: Sep 2006

sorry we have to meet this way, but WELCOME to the most positive, supportive, understanding, funny and great family you will have and meet on the internet.

Be positive, take charge of your health, ask, ask, and ask questions, but don't pay too much attention on what you find on the internet. Reports, stats, etc., are not updated and with the advances they continue to make, things are constantly changing.

We are here for you anytime.

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

I am 38 and I was DX'd 12/1/08 with colorectal cancer and later found I had metasis to the liver. I went through chemo 5FU and radiation for 28 days to schrink the tumor, had surgery for the removal and my lovely colostomy bag on March 10. Then on April 9 I had my liver resection at MD Anderson. We live in Kansas so we did the 13 hour drive to Houston. I am now on mop up chemo to make sure no cell broke away during the surgeries, however I am at this time considered surgically NED. I am back to work and actually feeling pretty good. Except the chemo weeks wear me out.

If you are going to MD Anderson you are in GREAT hands. My liver surgeon was Steven Curley and I love him! Very positive man. You can google him and read alot about him. He specializes in the metasis liver spots. If you can, I would request him.

Anyway - hang in there. There is a light at the end of the tunnel, I promise! 6 months ago I couldn't find it even with a flashlight, but it is there now! You are young and you can do this!

We are here for you if you need us. You came to a great place. These people have kept me sane!

Linda

mrkrabs
Posts: 4
Joined: Jun 2009

Thank you for these stories. Linda, I have my initial eval next week with Dr. Curley...just found out today! I am so hopeful at this point. I have faith that my healing has arrived and the choice I made to pursue MD Anderson was divine.

One night when I couldn't sleep I was reading everything I could about my disease and stumbled across the surgical option. Over the past few years I have stopped believing in coincidences. For instance at another dark moment in my life, about two years ago, I started seeing a therapist. We've kept in touch and now in my current state I find out she did Oncology counseling for over 10 years. She is a blessing and calls me at home every couple of days and encourages me.

Today I'm recovering from surgery, but healthy, riding my stationary bike 30 minutes a day and that gives me hope that I'm strong enough to be able to beat this thing. As my story unfolds I will post details. As I become more experienced in this process, I intend to encourage others. Life is somehow more vivid now. The highs and lows are just part of the ride. I've been prepped for this by learning to persevere in some really bad times. Not a coincidence.

Sincere Thanks,
Mark

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

Welcome to this site, Mark. It sounds like you are doing pretty well- you have a great attitude! Although I don't have any experience with MD Anderson, I have heard such good things about it, I'm sure you will do well there. I had a liver resection in San Diego at UCSD/Moores Cancer Center in May 2008. My surgeon, Dr. Andrew Lowy, actually spent some time at MD Anderson when he got started. He then was at a hospital in Cincinatti before coming to San Diego a couple of years ago. I would highly recommend him to anyone near San Diego.
I started w/ 12 liver tumors & chemo shrunk it down to 3. I had about 50% of liver removed along with my gallbladder. Although it was rough the first couple of weeks, I recovered pretty well. Literally 3 months after my surgery, I went on vacation and went horseback riding and river rafting. Maybe not the wisest things to do, but I did and was fine doing them. I'm sure you'll hear all sorts of stories of liver resections. Obviously, not everyone recovers as easily, but it definitely is possible. Perhaps with just one liver met, you won't need as large of a cut and your recovery will be quicker Maybe you could even have laparoscopic liver surgery? Something to ask about, for sure.

Blessings to you and like you, I don't believe in coincindences either! I believe God's got me in his hands and that definitely keeps me going.

You take care & I'll look forward to more posts from you in the future.

Lisa

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

I am so glad you got in with Steven Curley! I know he will help you see that light at the end of the tunnel. If you have never been to MD Anderson, it will be a bit overwhelming at first. The place is huge. And it will be humbling how many people are there for cancer. But they move you through with expertise. You will probably meet with Maria, she works with Dr Curley and she is really nice.

Keep us posted!

mrkrabs
Posts: 4
Joined: Jun 2009

6 Rounds of Folfox and then I reported back to MD Anderson for CT Scans. The scans showed my 10 detectable liver mets had shunk to 4 mets. Dr. Curley did the resectioning surgery. He removed 60% of my liver and then had 1 spot that was too close to a vein to wedge, so he RFA'd it. He claims that MD Anderson's rate of recurrence with RFA is 5%, meaning 95% never return. Recovery is not so bad when you're young like me. The tumor is now undergoing extensive testing at MDA to determine what is the best chemo regimen for my cancer. They back up what they preach, the they treat each patient as a unique case. I have nothing but good things to say about MDA. I have nothing but wonderful things to say about Dr. Curley.

My local oncologist noted before I left that I was a marginal candidate, at best, for resectioning. He then proceeded to tell me all of the nasty things that would be found when they opened me up. MDA is no stranger to this, yet they didn't paint such a gloomy lose-lose scenario. Luckily my local onc's job is simply to administer chemo. Anything else related to cancer, I will consult MDA first.

I don't really take too much time to think about my prognosis. From what little time I've been forced to by my family and friends it seems excellent. Dr. Curley spoke of very long term things we'd be doing over the years. I know he can't guarantee any of this to me, but at least he did something rather than to send me home to die.

So, if you're at all on the fence, please, please, please, do yourself a favor and explore all of your options. It's hard enough to fight cancer without having to fight your doctors. BTW I greedily posted my story in pieces on Facebook, where I got lots of encouragement and support from my friends and FB friends. There are no shortage of places to post our cancer stories on the net, and frankly during the chemo I didn't want to do anything but lie around. So if you'd like to read more simply look for "Mark Lofaso in Baton Rouge" and I'll accept your friend confirmation. I don't let non-friends read my story because the gory details are not the things I want future employers and others to have access to.

This battle for now is on pause, and what a wonderful pause. I choose to live my life not anticipating when it will end, but to enjoy the moment. It may be a long, full life or unexpectedly quickly or slowly end for some reason. Don't know, don't care. I leave these things to God. He delivered me through all of this and will continue to.

Yak, yak, yak I'm boring myself. Cancer made me more introspective, but I'm tired of talking about it. I choose to believe that I'm cancer-free and have no reason to think it will come back. If I'm wrong, big whoop. Time to live life while I have it. I'm probably not supposed to, but i think I'll go ride my motorcycle today...a week and a day after I was discharged from surgery.

Love and Never Give Up,
Mark Lofaso
Baton Rouge, LA

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Mark,
What great hope you give others. My husband David is scheduled for a liver resection at MDA on Dec. 21 with Dr. Eddie Abdala. We also found a wonderful team approach there after having no luck getting a resection in our town. My husband is stage 4, dx in 4-08 stage 3c then going to 4 early this year. He only has one met but it is bilobar so they are taking 70-75 percent of his liver after he had portal vein embolization to get his remaining liver to grow a bit more.

Sounds like you are recovering very well and I wish you only the best in the future. You are so right, never give up. We were really discouraged until the doctors at MDA gave us a very precious gift - hope. And they have the experience and knowlege to back it up.

Wishing you the best,
Priscilla

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Thank you for dropping by with the good news update.

Enjoy life!

Rob; in Vancouver

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

I am reading your experience MD Anderson and I think I need to get there. I am not liking my current situation....I'm feeling doomed and no one is brave enough to say it.

Met with Dr. Malmais today - an Interventional Radiologist at Loyola - to discuss the recommended treatment of Theraspheres.

Kelly, the Nurse Practitioner went over all the procedural aspects, which I did research on-line, so nothing new or surprising there. It is a fairly "complicated" procedure in terms of prep, determining if I am eligible for the procedure per certain tests, blood work, etc.

What I took from the meeting with Dr. Malmais:

Because I responded well to chemotherapy, I am a good candidate for Theraspheres.
This treatment is also used for people who did NOT respond to chemo.

Expectations: 4% of patients have a "Complete Response" - tumors eradicated
60% of patients have a "Partial Response" - some tumor shrinkage/eradication
The balance have No response/or stabilization

In order for me to be "cured" - all tumors gone - surgery is the goal. At this time, I am not a surgery candidate, and I may never be. My tumors are on both lobes of liver, some are too close to a hepatic artery, which makes it too dangerous for surgery/tumor removal. There is a high recourrance of liver tumors...hearing this reality upset me deeply.

It's a slippery emotional slope for me to want Honest Answers, percentages, and anything to do with "survival" and prognosis. I did get very upset at one point and left the room to get myself together.

How do I strike the emotional and psychological balance of Reality, practicality, possibility and being "prepared" and not kill the "positive attitude" everyone tells me I must maintain in order to "beat this"?

I am very pissed off about the "multiple options" I was told I had. I tried to get the Doctor to give me an idea of what my multiple options are. (Surgeon and Oncologist have uttered this statement to me several times when I ask about the "what-ifs")

If this treatment does not produce X result, them what?
"chirp, chirp, chirp"

If A, then B. If X then Y. That's what I was looking for but I have not received. I know there are no absolutes, I know we must see how I respond. But don't tell me that not one of the Doctors think about or have a Plan B.

So I guess my Multiple Options (said with dripping pissed-off sarcasm) are: Do the Theraspheres or Don't Do the Theraspheres.

As of today I plan on doing them of course. I will try those options that give me a chance.
I have my meeting with Dr. Benson at Northwestern next week and will try and nail him on my "Multiple Options" mystery. On the one hand, I hope he recommends the Theraspheres treatment as well, so I am not faced with confusing, disparate treatments. I am kind of expecting that it will be the same, but will be interesting to hear my 1st Second Opinion.

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

The same way you do Pluckey, why if there are other options to take out the cancer from multiple mets do they wait till the chemo isn't working? I wish they'd explore it now, and not wait till the chemo starts working, but they don't...I should ask them what's the wait?

I'm glad to hear you're also doing well Mark, I will look for you under facebook...my name is Donna Gorslene, and I'm sure hardly anyone has that name LOL...But you're story is also inspiring me, I have alot of mets to my liver, why can't they try RFA on me, even though mine are close to arteries and vessels? I don't feel like they are trying enough to get rid of it, they shrunk, but what about trying something else. I'm sick of chemo as well.

Good to hear from you Mark, and will talk soon!
Hugsss!
~Donna

mrkrabs
Posts: 4
Joined: Jun 2009

This board as well as other resources give us some empowerment. However, this is not a substitute for an experienced Onc (In our case a surgical Onc). I had a therapist that made me promise to hang up with her, call MD Anderson, and call her back. That was the best thing anybody could have done for me. Have the courage to do what you already know to be the best thing for yourself Pluckey. If you can, turn this over to God after you've done all that you can.

Love,
Mark

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

you made it to MD Anderson with Dr Curley! I truely feel I got the best treatment working with him. I had 80% of my liver resected in April and feel great today. Except for a few aches and pains from the other surgery, I really feel good. I know some people think MD Anderson may be too big and overwhelming but that is what they do....cancer. And I love what their website says...Making Cancer History! Also, Dr Curley has been on 60 minutes and he writes chapters that residents actually study. I truely feel he is giving me the chance to someday be considered cured. I have to go back every 4 months for scans for 2 years but if you read the website about his liver resections there is a high % rate of becoming cured.

I am glad you only have about a 5 hour drive.....ours is 13 hours but not complaining at all! LOL!

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

you made it to MD Anderson with Dr Curley! I truely feel I got the best treatment working with him. I had 80% of my liver resected in April and feel great today. Except for a few aches and pains from the other surgery, I really feel good. I know some people think MD Anderson may be too big and overwhelming but that is what they do....cancer. And I love what their website says...Making Cancer History! Also, Dr Curley has been on 60 minutes and he writes chapters that residents actually study. I truely feel he is giving me the chance to someday be considered cured. I have to go back every 4 months for scans for 2 years but if you read the website about his liver resections there is a high % rate of becoming cured.

I am glad you only have about a 5 hour drive.....ours is 13 hours but not complaining at all! LOL!

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