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4 Years NED (no evidence of disease)

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Hi to all you semi-colons!!!!

After a very tough several months of losing a few dear friends from this site, my father, and going through a few scares of my own I am pleased to be able to announce 4 years NED, a year behind one of my bestest buddies Kay.

I haven't updated my web page here yet but will soon, it is up to date for the most part if you want more specifics of a stage IV (mets to liver and left lung with no surgery options) survivor being at the 4 year non surgical remission mark.

I'll share my scares just so you all know that sometimes that is all they are. I had my semi-annual testing in June and was told I had a "new 4mm spot on the dome of my liver that we needed to keep an eye on so come back in 3 months for more testing". I did the first week of Sept. very nervous to say the least, to find out it was nothing, "probably just a blood vessel". I was happy but pissed a little too. Then I find out my CEA was the highest it had been in years, 3.5 up from 2.1, 3 months earlier (and yes CEA has always been a good indicator for me). So in a matter of days I go from relieved to worried again but at least this time I only had to wait 6 weeks to retest.

I went last week and it was down to 3.0 and my onc is no longer that concerned but I still am a little. Next testing is March 09'. I also had my annual colonoscopy last week and other then my first tiny benign polyp, it was very clean and almost enjoyable to witness (I don't like to be sedated for it so I watch).

I would also like to share that in July after my scare, my father's death, and the not good news about Kerry and Jana I knew I had to not let the negative energies get me down. I decided to sign up for a "coach potato to 5K" running school and to take ballroom and swing dancing lessons.

A few Saturdays ago I ran in my first 5K in 20 years and was very pleased with how I did. I have 2 more by New Years day (trust me Runner Z I am no threat, heh heh). My dancing lessons are going okay and now only have 1 and 1/2 left feet!!!

If you haven't gotten a healing bag from Kanort yet, get one, I swear by mine. I forgot to take it in June and think that is why I had my "scare".

Anyway, I am still pinching myself to make sure that my last chemo treatment was 4 years ago this week and things are going so well. I am very blessed, fortunate, and LUCKY. I am honored to be able to share it with you all.

Lisa P.

crazylady
Posts: 544
Joined: Jun 2004

Hi Lisa,

Congratulations on being NED for 4 years! That's wonderful news. I think it's great that you are running and taking dance lessons. You are an inspiration! I really needed to hear something positive right now. Thank You!

Take care,
Jamie

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Lisa... what a wonderful and inspiring post to read!! I enjoyed reading every word of it, other than about how you had to go through the scare for months before finding out that everything is ok. Phew!!

You've done it girl!! One more year and you will have hit that 5 year milestone!! Fantastic!!!!

Hugggggggs,

Cheryl

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

It is always so good to see NED visiting!

You are such an inspiration. Here's to many more years of NED, running, and dancing.

PS, what are healing bags?

*HUGS*

Tricia

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Check out Kanort's October 15, 2003 post about her 5 year NED mark and her offer to share her wonderful blessings (the healing bags) with us all. All you have to do is send her your address and trust me, your will not regret it and it is all completely safe and secure.

Thank you so much for you kind words.

Take care,
Lisa P.

vchildbeloved
Posts: 133
Joined: May 2008

Hello, Valerie here. Wishing all a very happy Friday. I have heard a great deal about those healing bags. I do want one for myself. How do I send her my address? Just post it hear on this site?

Thanks a heap.

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

send her an email from your login page on this site with your address.........

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

That's fabulous, Lisa. I'm sorry you had to be scared again recently, but I'm so happy for your 4 clean years. Here's looking for MANY more!

*hugs*
Gail

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Thank you for sharing your story with us, Lisa! You show hope for us all! I am so sorry for your losses, but also so glad for your celebrations! I am looking forward to receiving one of Kay's healing bags!
Mary

changing2
Posts: 118
Joined: Jul 2008

How encouraging! Good to hear you're enjoying your life to the fullest!

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

Thanks for sharing your wonderful news!! It's news like that that gives the rest of us hope to go on and believe that we, too, can be cured! God bless-
Lisa

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

Lisa,

So sorry to hear about your dad, it is never easy losing someone so close.

So happy to hear you are NED, I sure like that word!

Happy running and dancing!

Hugs,

Sue

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

NAKED HAPPY DANCE!!!! YEA!!!

This part (middle) of our lives stinks. Even if we make it through, there are so many 'goodbyes'!

Thank goodness all is well with you, my dearheart!

Hugs, Kathi

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I really needed to hear such inspiration today. You are such a joy and offer HOPE.

Kimby

rrob
Posts: 160
Joined: Nov 2007

Lisa,

Congratulations! You are such an inspiration. Your story was one of the first I remember when I joined the board and you have been such a ray of hope. Thank you for sharing with us. I'm sorry for the scares you've had and the loss of your father. What a way to fight the negative--I'm so impressed that you are now a runner and a dancer!! Enjoy your NED. Celebrate! Great dog, by the way.

Rebecca

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

First of all, I would like to say congratulations on 4 years NED. My husband and I are just starting down this road of treatment for Stage 4 colorectal cancer. He has had the tumor removed from his colon, and is now on chemo - had his first one and did quite well, #2 starts on Wednesday and will go every other week for six months. He is not a candidate for surgery on his liver or lungs as he has 40 - 50 spots on his lungs, and just a few on his liver. So, we pray every day that the chemo does it's job and he too can someday be NED.

Again congratulations and go out and party and have fun -- CELEBRATE -- !!! I can't wait for that day for my husband - I am planning on having a great big party for him.

Sandi

sladich's picture
sladich
Posts: 430
Joined: May 2007

Lisa,

Congratulations! We will definitely celebrate in SF!!!! Less than 2 weeks away.

Love ya,

Debbie

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Dear Lisa,

I am honored and blessed to call you my friend. Congratulations on your milestone....knowing there are many more to follow. Those scares took our breath away, but, thankfully, all is turning out well. I am visualizing your next CEA at an all time low. I think your marker was just out of whack with all that running and dancing!!! Tee Hee!!!

Your story is just what our fellow stage 4 semi-colons need to hear. You did it and they can too! BELIEVE!

Congratulations and keep dancing and running.

Love,

Kay

Faith4Cure
Posts: 405
Joined: Mar 2007

Congratulations Lisa, you are awesome. Sorry you had to go through those scares, but happy that you are where you are now! Your story is a great one for inspiration. Celebrate and enjoy life!

Faith

betina61's picture
betina61
Posts: 644
Joined: Aug 2006

Oh Lisa I'm so happy with your news,CONGRATULATIONS!! we really need to hear these good news to continue in our journey, as you said we have lost so many dear survivors that make us feel so sad but we need to enconurage ourselves that we will conquer this desease, and what a better way that one onother survivor shares their happy news. Lots of hugs to you.

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Betsydoglover's picture
Betsydoglover
Posts: 1255
Joined: Jul 2005

Hi Lisa -

So good to hear it's been 4 years. Sorry for your scares, and really sorry about your father. I have scan appointments for 11/11 and while I have been doing well, psychologically, having made the scan appts is bringing it all back to the forefront of my mind. Last night I actually dreamed of a meeting with my oncologist, wherein she forgot to tell me my scan results, didn't do blood work and just talked about kids with me! (Where the H did that come from? It must be scans on my mind and hoping they don't show anything - not having a psych degree!)

Been a tough year for the semi-colons. Claudia Cartwright also passed away recently (some of you probably remember her).

Betsy

jenhopesprays's picture
jenhopesprays
Posts: 129
Joined: Sep 2007

Lisa,

Thank you so much for sharing.............

Sorry to hear about your dad. I lost my dad 8 years ago and think of the sweet man he was, almost daily.

I am thrilled for you and love that you took the time to share with us.

I am looking forward to reading your updated page.

In the mean time.....

Cheers!!

Jennifer

hopefulone
Posts: 1048
Joined: Jan 2007

Lisa, am so glad you got an all clear and congratulations on 4 years NED. That is terrific news.
God Bless,
Diane

pink05
Posts: 553
Joined: Mar 2006

Hi Lisa,

So good to hear from you!!! I was wondering how you've been. Wow, you have been through a lot, to say the least. I am so sorry to hear about the loss of your father, and also sorry that you had to go through the roller coaster ride with your own health. I'm glad to hear that things are getting better, though. You have always been an inspiration to all of us and you have helped so many on this board (including me!!!)

Keep running those 5Ks!!!

God bless,

-Lee-

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Lisa,

WOOOHOOO!!! Way to go. I am sorry for your recent losses. I was so saddened to hear about Jana and I also lost a brother in Sept,

Celebrate your milestone--you deserve it.

Maureen

kmygil
Posts: 881
Joined: Feb 2007

Hi Lisa,

That is wonderful news and a tremedous decision to refuse negative energy! You are amazing and your story is proof that fighting the beast with everything you have is the way to go!

Hugs,
Kirsten

Lisa Rose's picture
Lisa Rose
Posts: 594
Joined: Mar 2003

Lisa,

We will celebrate in Las Vegas / San Francisco next week.

Congratulation's
Lisa and Andy

jams67's picture
jams67
Posts: 927
Joined: May 2006

4 years! Wow! I am one year behind you.
Sounds like you are giving your feet a real workout. You just wanted to be able to dance in SF. Seriously, I am so sorry about your dad and your scare. I'll tell you what my onc said. She said that if the cancer did come back, that she felt the chemo worked the first time and since I responded to it then, that I probably would again. That helps me when I go through testing. Just know that we kicked it's butt the first time, and we can do it again. NED (Never Ever Defeated)
Jo Ann

cancer0205
Posts: 9
Joined: Feb 2008

Hello! Congrats on being NED for four years. I just completed 12 cycles of chemo and my scans show NED. I was diagnosed stage IV with mets to liver. I feel I am a miracle with no more cancer showing up. I find myself in awe and daily hoping it will not come back. I would like for one day to not be possessed by cancer. I also have neuropathy in my fingertips and feet, which is a constant reminder of what I have been through. Did you have neuropathy and if so does it ever go away? What can help it? Blessed but miserable!!!!!!!!!

jams67's picture
jams67
Posts: 927
Joined: May 2006

Give the neuropathy some time. Most people will see it disapate in a year or so. The effects of chemo stick around for a long time. For some,sadly I'm one, it does not go away, and you just learn to live with it. It becomes part of your "new normal". I hope you can wave good-bye to it soon.
Jo Ann

ruggersocks's picture
ruggersocks
Posts: 78
Joined: Aug 2006

I am so happy and excited for you!

May the blessings of your NED be continued year after year.

Thank you for posting your good news. WE all needed to see and hear it.

Hugs,
Cheryl

katienavs's picture
katienavs
Posts: 88
Joined: Nov 2006

Four years, how wonderful! I first came to this site several months after my stage four diagnosis in 2006 and you have been a source of inspiration and hope ever since. Thank you for everything you contribute to this board! I hope to continue a couple of years behind you on this NED path. Congratulations lisa!

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Lisa,

That is the most awesome news today!! I am so so so happy for you and proud of you!!! You worked so hard to get where you are and it sure is paying off.

May you have many many more years and no more scares.

You know I love ya girl!

peace, emily

valeriec's picture
valeriec
Posts: 350
Joined: Oct 2006

Hi Lisa,
haven't been on much lately, but I am sure glad I checked in tonight. What wonderful news to hear right before I go to sleep. I will say a prayer and count my blessings. You are one of those. A blessing to so many people. So sorry about your dad. I know how close you were. He was blessed to have you and you were blessed to have him. NO more health scares for you-I just won't hear of it. I love ya- your friend from Colorado who is hunkering down and getting ready for the snow to fly!!!

jenalynet's picture
jenalynet
Posts: 363
Joined: Nov 2005

I sure am happy to read some good news right now. Stay healthy. Hugs, Audrey.

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

what an accomplishment Lisa. I wish i were in San Fran right now so we could be dancing the night away and celebrating. well i could at least climb on you piggy back and we could ride around the bar and act like a pair of nuts. can you tell I'm on the good hospitol drugs. anyway I love my friend. keep up the good work.
Mark

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Yay Lisa! I haven't been on this site for a while as I have been travelling, but you are as others have said, an inspiration to us all!
I'm so happy for you. What a huge milestone....I hope to be joining you soon. I'm waiting for my blood results as I type this. Even after 4 years I still get very nervous. I guess that's normal, right?
Well here's to NED. You gotta love 'em.
Take care,
Susan H.

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

Hi Scouty,
Great to hear your news, and to hear that you are doing well. I'm sorry for the loss of your dad and friends. I lost my dad to colon cancer before I was diagnosed and missed his support terribly while I was in treatment. It is also hard to know that other friends here have not beaten this beast. I hope you enjoy your Thanksgiving; it sure has fuller meaning for me these days.
Don't you hate how casually the onc can suggest that we need to keep an eye on something?". 3 months feels like an eternity while waiting for the next test. I'm so happy for you that all is well; keep up the good work!
Judy

webwoman
Posts: 11
Joined: Sep 2004

Scouty,

Couch potato to 5K? Glad to see you are thriving. I met you at the Las Vegas Colonpalooza, which I attended on behalf of the ACS. Do you know if another Palooza is scheduled anytime soon?

Thanks,

webwoman

steven12
Posts: 52
Joined: Dec 2008

Congratulations Lisa P. What a great news. I'd like if all skeptics ( including my onc ) could read your blog. I would really like to know about the history of your disease if you want to share that with us. If you already written about, please just let us know the date the subject was started. Thanks, and all the best to You and everybody,
Steven

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Most of my posts about my situation and the natural things I chose to do can be found during the late Oct 2004 thru early 2006 on this site. Some of the basics are: an alkaline diet, fresh carrot/beet/celery/cabbage juice, multiple herbal, vitamin and mineral supplements along with other things. The key books that helped me: "Beating Cancer with Nutrition" by Patrick Quillan, "The Makers Diet" by Jordan Rubin and "A Cancer Battle Plan" by Ann Frahm.

I'm not sure what you mean by history but my journey started with a colon perforation in Oct 03' that developed into acute perotinitis and I got to spend 3 weeks in the hospital. I was given a tempy colostomy bag at the time and was told multiple tests confirmed it was not cancer. In Feb 04 at an appt discussing the reversal (take down) of the bag, a rectal mass was found. It came back cancerous and resection surgery was scheduled. Thankfully I have a brother that is a ENT surgeon that explained what comprehensive cancer centers are and how important it was that I saw someone that sees and deals with colorectal cancer every minute of every day. I cancelled the surgery and made an appt for a second opinion at a Comprehensive Cancer Center 60 miles away. I consider that decision to be the first of several life saving ones I made, there is no doubt in my mind that I would be dead or dying today had I stayed with my original docs.

My new onc ordered CT scans which showed 3 possible mets to my liver and one to my left lung (don't know why the 2 I had while in the hospital didn't show anything). Due to an almost complete blockage they were never able to "stage" the primary tumor but biopsies did comfirm 2 mets to my liver. They never confirmed the lung met but treated for it anyway. I was given 2-3 years to live and my only option was 12-15 months of Folfox6 with Avastin. My CEA was 35 the day of my first chemo treatment and it did respond over the 8 months (16 treatments).

When I started chemo physically I was probably only about 85% due to the impact of the peritonitis so the chemo really took a toll on me physically, mentally, and emotionally. The neuropathy got so bad in my feet that I could not feel them hit the ground so I started falling alot and decided I needed a break from it. I found a naturopathic doctor who had a PhD in Clinical Nutrition (key to me)to help me fight in a very different way. As soon as I heard my CEA was down to 5.1 (all 4 tumors were still showing up on CT scans), I decided to stop chemo the end of Oct 2004. I immediatly started juicing and doing other things (drinking essaic tea, mangosteen juice, green magma) and eating only natural and organic foods and products. I only ate meat once a week (at most).

My CEA continued to drop and the tumors literally dissipatated over the next year. I had my colostomy bag reversed (taken down) in Jan 06' and let them take a foot of my colon and the respective lymph nodes. The surgeon checked out my liver and it looked fine, lymph nodes were clear, but they did find a microscopic tumor where the primary rectal tumor had been. They got great margins and I think you have the rest of the story.

I'm not sure that is what you had in mind, if not ask away Stephen.

This board helped me so much and as I like to say; it helped me save my life so I feel a need to "play it forward".

Hugs, kisses and Happy New Year to all my fellow semi-colons.

Lisa P.

steven12
Posts: 52
Joined: Dec 2008

Thank you Lisa for the answer. Very interesting case I think. You didn't mention how much juicing, veggies, essiac or other teas you were/are consuming per day. I am asking because I think if anything we take is not in really very large doses for long time it would not much affecting our disease. Your CEA, as you noted, already started falling when you decided to stop the chemo and go natural way. The "tumors" showing on the CT scans may have been actually benign lesions, don't you think? Based upon my own experience I am a bit disappointed in CT/PET scan interpretations. Radiologist opinions may also depend, I believe, on the patient history description on the referral. Sometimes I am wondering what their report looked like if they would not know the scan is about a cancer patient? Anyway, your case really could be the right way for the ultimate healing. Thank you very much and best wishes to You and every body,
Steven

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

I drank 2 oz of Essaic 3 times a day, juiced 12 oz of the combo juice twice a day. I ate a big green salad for lunch and another for dinner with some carbs and beans. All in all, I think I took 11 pills a day (spread across breakfast/lunch/and dinner. I drank the same amount of water per day as I did while on chemo (96 ounces).

The biopsies on the 2 liver mets their 7 inch needle could reach confirmed rectal adenocarcinoma cells there so no they were NOT benign lesions.

I agree that the person interpreting the scans is important but I also think the machine is too. The one that did my first 2 CT scans that missed the tumors only went down to 10mm while the one at the comprehensive center went down to 5mm. We need to understand that not all cancer treatment offices are the same and have the same equipment so if you can go to a bigger center chances are you will get the latest and greatest on everything.

Lisa

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

I am truly inspired by your story. I just finished my fourth cycle of chemo and was questioning myself over the weekend. Now having read this I think about what I heard today in the inaugural address, "let it be said by our children's children, that when we were tested, we refused to let this journey end". Your story impresses me with this same spirit, thanks for sharing, and continue life's journey.

MIke

valeriec's picture
valeriec
Posts: 350
Joined: Oct 2006

You go baby!!! I do not post a lot any more, but always checking in to see how everyone is doing. Was so excited tonight to see your post!!! What wonderful news. Four years NED!!! That is amazing. I pray you dance with NED forever. You are an inspiration to so many. I am sorry for your scares, but you weathered them like the champ that you are!!! Grateful to hear all tests are back to normal. So very sorry about your dad and Kerry and Jana, too. I know how hard it is to lose one that you love so much. One thing that I have learned, is that life as we know it, moves on one day at a time. I am glad to see that you are doing positive things to get through these rough times. Good job!!! I love to run, but can't dance worth a hoot. Have tried to talk hubby into lessons for many years and even he is like....I love ya, but there is no hope for you!!! A dancer you will never be! Right now, I am riding across America on my bike with a trainer. I am just past Las Vegas!! Trying to raise money for a family we know who tragically lost their 17 year old daughter in an ATV accident right before Thanksgiving. Oh, and we have adopted another dog and got Colby two stallions for Christmas. Our little ranch is growing!! Anyhow, I loved your post!! The best news ever!! Email me sometime, I lost your email when my computer crashed!
All my love to you-
Valerie

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