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10 Years Today!

Posted: Wed Feb 20, 2019 10:39 am
by mom_2_3
Officially 10 years NED as of today. I wanted to post my story for those new to the board. When I was first diagnosed all I wanted to read were survival stories. I knew that it didn't necessarily mean I would survive long-term but the possibility and knowing that others had was so important to me. I would say that now I hardly think of cancer and it will be days before the thought crosses my mind. But, not a day goes by that I don't give thanks and gratitude for the life I am so blessed to live...

Here is the story I posted on my FB wall letting friends and family know about my diagnosis in the hope that I would bring awareness to the disease. We didn't tell our children about my illness until this past year so not many of my friends know that I had been ill.

This community was so important to during that first year of illness. I hope that this post gives you hope if you are looking for it, as I was so many years ago....

Amy



"It was during Katie’s caesarean birth 10 years ago today that we first discovered I had colon cancer. It wasn’t until 6 days later on my own birthday that we learned that my cancer had metastasized and I had 5 tumors across my liver. American Cancer Society survival rates for my Stage IV cancer were 8% at 5 years and during an initial consult with a local oncologist I was told that I would probably have 22-24 months to live. Nothing in my life before or since compares to the devastation I felt in that moment when I heard that prognosis.

My husband’s cousin, a gastroenterologist, quickly secured an appointment for me with a different doctor, a renowned oncologist at Memorial Sloan Kettering. This doctor specialized in a special chemotherapy pump called an Hepatic Arterial Infusion pump and her method was achieving longer than average survival rates. She told me that she would treat me and that hopefully I would respond to traditional chemotherapy and be able to have this HAI pump implanted in the future. Four days before Thanksgiving 2008 I started my first systemic (traditional chemo) treatment.

Systemic chemotherapy (especially the platinum-based drug that I was receiving) was no picnic. I suffered the usual side effects from the treatment but asked my doctor to give me the maximum possible dose. After 4 bi-weekly treatments a CT scan confirmed that the chemotherapy was working and my liver tumors were responding to the treatment and I would be eligible for surgery.

Nine days later on February 20, 2009 during a 9-hour surgery I had 12 inches of my colon, 42 lymph nodes, 40% of my liver and my gallbladder removed. Additionally, I had an HAI pump implanted into my abdomen. I had 30 staples up and down my mid-section and a side incision where they had placed my pump. Before the surgery I had been marked by an ostomy nurse where the doctor would place a colostomy if necessitated by surgery. The first memory I have after waking up is feeling my mid-section to find out if I had, in fact, had a colostomy placed. I was relieved to discover that I did not as it would be one less thing I would have to deal with during my recovery.

After my wounds healed I started up my chemotherapy treatments again, alternating between systemic chemo and chemo injections into my HAI pump. This pump, routed to the hepatic artery, allowed for a very concentrated dosage of chemo to profuse the entirety of my liver (which re-generated after 6 weeks). During my 7th chemo treatment I experienced severe anaphylaxis and had cardiac arrest. Electric paddles and 2 doses of epinephrine revived me and I found myself in a cardiac unit for 2 days as doctors monitored my heart to determine whether I had permanent cardiac damage (I did not).

Finally, on November 2, 2009, almost one year to the date of my diagnosis, I completed my last chemotherapy treatment. Throughout the past nine years since then life has been full of blood tests, CT scans, and follow-up MRIs and ultrasounds on suspicious spots here and there. But, through the grace of God and by the hands of three amazing doctors, I have remained in remission from my disease. I have been truly blessed. On October 2, 2018 I finally had my HAI pump removed and heard my surgeon tell me that he considered me cured."

Re: 10 Years Today!

Posted: Wed Feb 20, 2019 11:40 am
by Jolene
Thank you for sharing ! What wonderful news !! Congratulations on the removal of the pump and being NED ! It goes to show the importance of a second opinion ! This board has been my savior on so many matters and new knowledge !

Re: 10 Years Today!

Posted: Wed Feb 20, 2019 12:52 pm
by Punky44
Wow, congratulations and thank you for sharing!

Re: 10 Years Today!

Posted: Wed Feb 20, 2019 1:48 pm
by radnyc
GREAT TO SEE YOU BACK!
10 years, wow! Congrats! You were one of the first on the board whose posts I looked forward to reading, they gave me hope. I'm right behind you, 8.5 years NED. Congrats and enjoy, most agree that 10 years = CURE!

Re: 10 Years Today!

Posted: Wed Feb 20, 2019 2:11 pm
by mpbser
I hope and pray that my husband will get to say this.

Thanks for sharing!

Re: 10 Years Today!

Posted: Wed Feb 20, 2019 3:02 pm
by CRguy
Congrats Amy

Keep living LIFE !!!!

Cheers and best wishes
CRguy

Re: 10 Years Today!

Posted: Wed Feb 20, 2019 3:29 pm
by shinny
That's great to read Amy and it will help reassure so many. I wish you continued great health.

Can I ask a question in relation to the HAI pump? Was it delivering chemo all that time or was it left there for a while as a "just in case" scenario?

Re: 10 Years Today!

Posted: Wed Feb 20, 2019 4:46 pm
by Nordy1
Congratulations!!

Thank you so much for sharing this!

Nordy1

Re: 10 Years Today!

Posted: Thu Feb 21, 2019 12:32 am
by ginabeewell
Wow. As someone who recently had a consult with Dr Kemeny and is now gearing up for an HAI pump placement week of 3/25, this was hugely encouraging to read.

I remember first reading about it and thinking - THIS!

So glad to read stories of those who successfully follows that path and are cured.

My first three oncology consults were a version of "we will try to keep you alive for two years" too: sorry but that's not good enough! If I go, who will clip all the fingernails?!

Congratulations to you. : )

Re: 10 Years Today!

Posted: Thu Feb 21, 2019 3:03 am
by stu
Hi ,
You are just ahead of my mum . You used to give me so much inspiration .
So delighted to hear your news. Your family must be overjoyed.

Keep enjoying life ,

Stu

Re: 10 Years Today!

Posted: Thu Feb 21, 2019 10:13 am
by LPL
Wonderful news Ami :D
Thank you so much for posting your story, giving hope!

Re: 10 Years Today!

Posted: Thu Feb 21, 2019 3:00 pm
by Jack&KatiesMommy
Thank you Amy. You were one of the first people who gave me hope when I first showed up here 7 1/2 years ago. You gave me so much hope and inspiration back then. We were both Moms with young children...and you told me to look for and keep a list of survival stories for encouragement. I still have that book of survival stories and I am so thankful for your encouragement all of those years ago. Thank you.
Cynthia

Re: 10 Years Today!

Posted: Thu Feb 21, 2019 6:23 pm
by FightCRC
Congrats, Amy! And thank you. Thank you so much. You could have left this all behind you, but have stuck around to share your story, to provide hope for so many of us. Thanks to you and other posters, I learned about HAI for my wife. We would have never known about it otherwise. We are undergoing treatment now. I'm endeavoring to follow your example, and to help spread the word. Take care, all the best to you and your family!

Re: 10 Years Today!

Posted: Thu Feb 21, 2019 9:35 pm
by mymom
Wonderful! dr K is amazing.

Re: 10 Years Today!

Posted: Thu Feb 21, 2019 10:02 pm
by Wonderfullymade
Love hearing these stories of hope! Thank you for posting!
Wonderfullymade