Stage IV - Good News

[mom_2_3]

I met with Dr. Wonderful yesterday at the 53rd Street Pavilion. Latest scan results in. All clear. That now makes 3 years and 11 months in remission since my February 2009 colon resection and liver resection. I told her that I could kiss her! Of course, those that know Dr. Wonderful understand I could never actually kiss her but I certainly felt like it. I could have lifted her in the air in a bear hug and twirled her around!

I told her I would consider myself 4 years in remission and she said it was close enough. Scan schedule just changed from once every 4 months to now every 6 months. She did say that if my next scan was clear we could discuss removing my HAI pump but I am in no hurry to do so.

A recap of my diagnosis is that my colon cancer was discovered during a c-section for my youngest daughter. An attending physician was "feeling around" beneath my uterus after the baby was removed. The doctor felt a suspicious lymph node and an oncological surgeon was called in to take a biopsy. I laid there for about 2 hours as we waited for him and then while they did a quick pathology and asked for another sample. Very nerve-wracking. Blood tests revealed a CEA of almost 300 and a CT and colonscopy exactly one week later confirmed adenocarcinoma with spread to the liver. The first oncologist I consulted with told me I could expect 22-24 months until I would succumb. We had already setup an apppointment with Dr. Wonderful at MSK who was a colleague of my husband's cousin. This first doctor told us we could consult with Dr. Wonderful but basically she was a dinosaur and had archaic methodology. We kept our appointment at MSK regardless of what he said.

At my first meeting with Dr. Wonderful, she laid out a plan for my treatment and after 5 FOLFOX treatments I was scheduled for a simultaneous liver resection and colon resection with placement of the HAI pump. We would use the HAI pump as a way to hopefully prevent future recurrence in my liver. The surgery, although very long, went very well and 8 days later I walked out of the hospital. I completed 7 more months of treatment and since then (November 2009) have been in scan mode every 3-4 months.

I post this news to do two things. First, I craved good news like this when first diagnosed and would write a list in my notebook of every name I found of someone that was a long-term survivor. I would read the list every night before bed and it helped calm my nerves and gave me hope. I hope that my story can give others hope. I am so grateful that I just celebrated my little one's 4th birthday as I didn't think way back then I would have seen her at this age.

And second, for those with liver involvement that are considered inoperable, please seek a second opinion. If I had just relied on the word of that first doctor, who knows what my path may have been. I have seen amazing results at MSK with my Dr. I have read people here say that their doctor said they were inoperable because they had liver mets on both sides of the liver. Well, I had them on both sides. People have posted that their doctor said their mets were too large. Well, my largest was 5 cm. If you have numerous mets on the liver (upwards of 10 or so), consider the HAI as a method for reaching operability. I have met numerous folks in the waiting room at MSK that had too many to count and were currently NED after HAI treatments and resection.

Don't ever give up.

Amy

[dianetavegia]

Amy, exactly the good news I needed to hear today! I'm 9 1/2 months out from my liver resection for a small, solitary met that showed up 3 years after my original dx and I still struggle with fear and anxiety. LOVE your good news and congrats on 4 years!

[juliej]

Hi, Amy,

I was at 53rd Street yesterday, but I didn't know you were there! Sorry to miss the chance to meet you.

Big high-fives on 4 years in remission! Dr. Wonderful saved my life too - after my local onc said I'd never be a candidate for surgery. Now I'm NED and have been for nearly a year now. My liver has been clear since the HAI pump was implanted in 2011. I didn't have a large number of liver mets, but they were on both sides of my liver too. I agree with your advice to those with liver mets who've been told they are inoperable: get a second opinion! There may be possibilities somewhere else that your local onc doesn't know about.

Congratulations again on your good news - four years, and may you have many, many more!

xo,
Julie

[Jack&KatiesMommy]

Thank you Amy....you are so inspirational. I think about you all of the time.
Cynthia

[shmurciakova]

I just wanted to say CONGRATULATIONS! It is so true and so important that people find a doctor who really believes you can be cancer free! When my lung mets were first discovered I went to a local thoracic surgeon who gave me no hope. I asked him, what is the likelihood that I will be cured? He told me that I was "already past the curve". I then went back to MD Anderson (where I had my liver resection) and was given a lot of hope there. I was told there was a 30% chance for me, in my situation with resectable mets. I took that and ran with it. I have always been grateful that I was able to get a second opinion at a top notch hospital. They have never once been negative towards me or given me a timeline like some doctors feel compelled to do. I am sure if my situation would have been dire they would have told me but until then I think it is so important to keep faith alive.
Anyway, I just wanted to say that I'm glad you posted because there are a lot of newbies on here that could use a good survivor story.
Take care and here is to staying NED forever,
Susan H.

[ams5796]

Your post is what the colon club is all about, or at least, what it's supposed to be about! Not only was it inspirational and uplifting, but it offered some valuable advice.

Almost three years ago my local oncologist and an oncologist at Dana Faber in Boston both gave me no real hope about some newly discovered lung mets. I had no other choice but to go see Dr. Wonderful as well. She put me on Xeloda and hooked me up with two VATS surgeries. Since June of 2011 I have been NED. In fact, I had a clear scan last week.

Congratulations to you!

Ann

[Rob in PA]

That is so terrific for you Amy. This board needed a boost like yours today! Congrats!

Rob

[mymom]

Fabulous! that is great!

[some]

Amy,

Your post made my day. You have a wonderful attitude and I'm so happy you are doing we and enjoying your family too. I'm all about never giving up or in to this disease.

Thanks for sharing!

Serena

[so-scared]

Thank you for posting this, Amy!!! I am sooo happy for you!

My husband was also given the standard two years to live at diagnosis. He was told since the cancer was in both lobes of the liver that he was basically out of luck. In Oct he was in rough shape and I thought that he may not make it to that two year mark. We headed for Sloan. I was not sure he was in good enough shape to even make the trip but we had no other options. Die or try .....

My husband now goes to Dr. Wonderful as well. By the time he landed in her office he had already failed all of the convential chemo approaches and had already had a liver resection. The recurrance in his liver happened quick and at the beginning of the hai treatments his liver was FULL of cancer. The scan makes your heart sink. Anyway, Dr. Wonderful gave it maybe a 50% chance of working. So far, so good. He has a lot of positive signs going on ... bilirubin at one third of what it was, ldh down, feels much better etc. He will be scanned in two weeks and that should tell the tale.

My hubby just walked out of the door with weights on both ankles and weights in both hands for a power walk (he is a marathon runner but Dr Wonderful won't let him run with the pump). This is the guy that a couple of months ago I thought wasn't up to a plane ride!

So your message is so right .... don't ever give up!

Ya know what? I love the dinosaur with the archaeic mehtods!! How about you? One doc here told us that since no one seems to be able to recreate her results that some think it may be bogus. Really? I know (through a screen) many of the people who have benefited from this bogus approach! I just hope my hubby will turn out to be one of them too!!

Here's to you being NED forever!!!

DeAnn

[Mona]

Congratulation Amy!!!! Stay in NED always.
Dr K is mine doctor as well, I really like her. I went to her after I had recurrence in mine liver. Julie and I had Hai pump implanted just few weeks apart.
Amy, thank you for posting your good news.

[usopen]

That's great, Amy!!!!!!
Joan

[Bev G]

Amy, it's wonderful to hear from you, and always love reading your story. I remember some months ago a member posted about Dr. K being sad or upset that no one posted any good reviews of her on the net, and the member encouraged those of us who had seen her to go to the "reviewing docs" website and post. I think many of us did. I wish Dr. K knew about this board (maybe she does?) She should come here and search on all of her "names" here---I think it would make her day!

I am so glad for your great news! Live happily in NEDSville forever! You have given great hope to many today!

Love,

Bev

[paula]

Hi Amy,

Thank you for posting your good news. I celebrate with you this wonderful report. As a matter of fact I was at 53rd St. yesterday too, so we (you and I and Juliej) apparently were ships that passed each other. I admit I am disappointed I didn't get to give you a personal hug of shared joy but today with reading your post, I want to let you know how happy I am for you.

And Ann, and Julie, and "Mona" (Maria)...I remember how scared I was the first day I went to Dr. Wonderful/ Beautiful's office, and how much it helped me to speak with others in the waiting room, long-term survivors. I remember sitting next to Ann at her first visit - how special that was for me...and I remember sitting with Maria at her first visit too. How blessed being Dr. Wonderful's patient, and moreover, how blessed to have met each of you, I feel!

And when I was first planning to travel from Florida to NYC for treatment when I had a liver recurrence, I remember you reaching out to me with help and guidance and encouragement, Amy. Thank you. And sincerest congratulations! xoxo

[tammylayne]

Wonderful news Amy!!!!!!!!!!!!!!! Thank you for sharing....good news is always welcome and needed.

May you have many, many more NED years.