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7 years NED (stage IV mets to liver and left lung)

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

My onc and I had some interesting talks about diets, sugar, vit D, and other things but I won’t post it cuz this is a good news thread and I don't want it to turn into one of our "board fights". It was very flattering when he told me that he and some of his colleagues have learned a great deal from me. He also said he really enjoyed reading the copy of “Anticancer” that I had left for him and is passing it around to others.

His displeasure over the leucovorin “shortage” (as well as the other drugs they can’t get) was obvious but as he said there is only so much they can do since the same pharmaceutical companies fund so many of their clinical trials, research, and other studies (it’s a huge comprehensive and teaching cancer center). He shook his head and made the sound he does when he wants to change the subject so I did, but it was obvious that it was tough on them.

I will see him next fall for blood work and then have a colonoscopy and if all goes well, I will not be seeing him again. My surgeon and the chemo nurses have always hugged me when they see me but not my onc. He has always been so stoic but has been loosening up over the years and when he actually hugged me as I was leaving, I teared up as did his PA. Pretty emotional but in a good way!

Nice way to end the week and now I can focus on running in a 5K in 2 weeks and then spending quality time with some awesome semi-colons in Chicago @ CP9 in 4 weeks.

Lisa P.

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

Congrats Lisa, I'm so happy to hear your GREAT news!
Love you
-p

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

Count me in as well......bravisimo:)

What an interesting trio, you, Phil and I make. You with 7-years ned and me and Phil 7-years of getting after it. Such a fascinating dichotomy on the cancer subject.

Cheers, Lisa - one more year and you're out of the system. Just heartfelt congratulations to you.

-Craig

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

Rob Reiner's Mom in "When Harry Met Sally"

"I'll have what she's having"

"

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

Like most women Phil, I love that scene.

Craig, I suspect we will have loads to talk about in Chi-town.

Lisa P.

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

Hi Lisa! As always, you've been and are an inspiration to me :)
I tell people I know about you- how I know someone who was stage IV who has now been cancer free for several years!!
Glad for your good news & the good visit to the onc :) Interesting that he read the Anticancer book. I have that book too- maybe I'll mention it to my onc.

Hugs,
Other Lisa

mukamom's picture
mukamom
Posts: 402
Joined: Oct 2010

Hoping you stay NED!!!

Angela

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

That's how you sneak in an appropriate cuss word.

Thanks and Other Lisa, here's to your CEA starting a new trend by going down, down, down.

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

Ron.

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

i am so bursting with pride and love for you

you appear to be ahead of the beast.....whatever you are doing is great.....

annnnndddd you are so humble....thank you for not starting another fire-storm...

with all best love

mags

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

Yes things do seem to be working for me so I am not changing, just tweaking. I don't know how anyone that has been on this site for any length of time can be anything but humble. This disease is diabolical with many known causes or no known cures so I have never understood what causes the firestorms.

Oh, I was watching a show on TV last week and there was a boyfriend and girlfriend wanting to get married but had to find and get her ex-husband to sign divorce papers. They had hired a private detective who had found the ex and was reporting in and asking for direction. The guy says "Point your gun at his head and force him to sign the papers" and the woman says "No, just explain the situation and ask him nicely to sign the papers and he will". The guy looks at the woman and ask "What are you, Canadian?". I laughed knowing that it totally described all my Canadian friends; you are gentle, understanding and kind people.

My best love back at cha,
Lisa P.

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

thank you Lisa....that is a great compliment.....

more hugs back at you
mags

sasjourney
Posts: 395
Joined: Jul 2010

I could not be more happier for you! I can't even imagine how you must feel. You were so courageous to take a different path and have been so kind to share what you did with us in hopes that it could help us as well. You are amazing!!!

I would love to know about your conversation with your onc. Anyway you could share that?

Celebrate, my friend!!!!

Hugs,
Sara

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

I'm very lucky and grateful. I'll share some of our discussions.

I was a little disappointed that the white blood cell counts I watch (WBC, platelets, and absolute neuts) were a little lower than they have been the last several years. He remarked that they were perfectly normal and when I mentioned where I like to see them he said that he would suspect an infection if they were that high. I said he never mentioned infections in the years before and he said they were never that high. He looked them up on the computer and grunted his "I don't understand" sound and just said well it seems to have worked for you.

After I quit smoking and had my "instant menopause" surgery I had gained about 45 pounds (I needed to gain some but not that much) and he fussed at me for the weight gain a few years ago. He noticed that I had lost some and asked how. When I told him that I don't diet well so I just changed the way I ate (avoiding added sugars and high glycemic pastas and starches as much as possible). As it turns out he and his wife are following the same regime so we talked a lot about that and how much better we felt. He said the infusion center had recently changed their contract to exclude sugary sodas and juices.

One thing he talked about that I had never heard of was how much more detrimental abdominal adiposity (belly fat) was to colorectal patients, especially men. When I asked why men more than women, he said it was because men tend to put most of their weight gain on their tummies and that women will put in on the hips and legs as well as tummies. He did mention that the mortality rates for obese men and women has been rising just as the obesity rates have.

On the subject of how young some getting CRC are, he agreed with me that there are probably genetic tendencies "we haven't found yet". Then we talked about how much better it would be if all the different tumor markers (including CEA) were checked whenever anyone has a physical. He loved the idea and really couldn't explain why it isn't done.

On Vit D, he worries that people will take too much since the body stores it as opposed to so many other vitamins.

Lastly we talked about how much more info is out there today then 7 years ago when I was making my decision. I asked about a man I met while on chemo that had lymphoma who had been juicing for years and had like 250 of his lymph nodes removed already. Rusty died in 2008 but outlived every other patient they had ever had with his type of lymphoma by several years. He laughed that there just isn't any data for him to recommend anyone doing "what we had done" but he would never tell anyone not to.

Thanks again for your kind words and I hope you are doing great. You know it's not too late to come to Chicago!!!

Love, Lisa P.

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

Great news

Mark

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

Congrats! That is really inspiration for us all..... Thank you for "paying it forward" ... YOU ROCK!

Jennie

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

And Jennie I am still keeping my fingers crossed that we will be able to toast 1 or 11 @ CP9.

Lisa

Annabelle41415's picture
Annabelle41415
Posts: 6241
Joined: Feb 2009

What wonderful news. So glad that things are going so good for you. Keep up your good spirit and posts.

Kim

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

Hope your dad is good and that you are having positive results with your "bowels".

Lisa P.

fedester
Posts: 757
Joined: Jul 2004

great news lisa.
wishing you all the best in the future.
you rock girl !!!!!!
be well
never,ever give up !!
bruce

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

Good to see you buddy and thank you.

Lisa

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

Hey y'all! That is the best news a gal could hear today! I am beyond happy for you.

Your inspiration for all on these boards knows no bounds, and like the other Lisa, I tell your story all the time to anyone who will listen. Your willingness to share your knowledge continuously over the years is so appreciated.

I am proud to call you friend.

October, baby. You and me. WOOOHOOO!

peace, emily

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

See you soon honey.

Love, Lisa

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Lisa I am soo happy to hear this! What a great thing to hear from your onc. I'm sure it made you feel really good...gave me goosebumps. Now go get running girl!

huggs, gail

buckeye2
Posts: 428
Joined: Jul 2011

Your case is inspirational and a reason for us to have hope. Congratulations! Another Lisa

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

congrats and keep on doing what your doing.i hope someday i have the courage to step outside the box...Godbless....johnnybegood

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

Thanks and thanks to you too Johnnybegood. Just be good to yourself too!

Lisa

toyfox's picture
toyfox
Posts: 158
Joined: Apr 2011

Love reading your posts....they have been so helpful.
Linda

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

my post are helpful to you. That is all I ever really want to do.

Lisa

Erinb
Posts: 295
Joined: Apr 2010

Lisa,
That's great news. Thanks for your continued support on this board. I know how easy it would be for many people to forget this site after such a feat! Good luck with the 5k. Long distance runners are crazy! (just kidding)
Erin

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

I don't think of myself as a long distance runner at all. But I agree that my friends in the running club that run half marathons and marathons are very crazy. I mean getting up at 5AM and running 10 miles!!!

Hope hubby is doing good and thanks Erin,
Lisa

chrissy83's picture
chrissy83
Posts: 17
Joined: Oct 2010

Wow scouty,

Thank you soo much for the good news:) I was diagnosed with stage 3c and now it has popped up in my lymph node in my neck so chemo obviously didn't work too well for me even tho it seemed to kick my butt!!!
So thanks to you you have inspired me to start looking at my diet so I have had my blood chemistry done and on tue I find out what my diet consists of ..All i know is no sugar and carbs :(..
So thank you !!! You have given me hope Iam 28 years old and I need to hear stories like yours I have 2 babies under 2 so anything I can do to stay alive even a month longer is worth it!!
You are my inspiration!!!!!

Chrissy

smokeyjoe
Posts: 1428
Joined: Feb 2011

So, totally awesome, so happy for you!!!

dmdwins
Posts: 453
Joined: Aug 2008

Hey Lisa,

I couldnt be happier for ya! As many have said....you were my inspiration when I came to the boards. Though you dont want to share on the boards about your conversation I hope you you be willing to share with me in Chicago and tell me how you have "tweaked things over the years.

Chicago is coming at a great time for me. October 11th will be my 4 year mark. I am feeling very grateful. My daughters are both in high school now and I never thought I would see that.I cant think af a better way to celebrate than with fellow semi colons!

See ya soon,
Dawn

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

yes we will talk bunches in Chicago and we will celebrate too!

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

It breaks my heart to see people as young as you are have to join us. Keep me posted on what you learn since I am always learning and tweaking.

And thanks Smokeyjoe, your posts to me have always been so sweet!

Lisa

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

health Lisa!

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

Wow! Lisa, you always amaze me! It's obvious that what you're doing is working for you! I'm just so happy for you.

When are we going to get together? There's a great new restaurant in Reidsville called The Vault!

*hugs*
Gail

luvmum
Posts: 457
Joined: Dec 2010

I am very happy for you!!!!

I hope there are more people like you =)

Best,
Dora

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

Lisa, I was away (visiting my new grandson in NH) when you posted this. Even though I am late to the party, I just wanted to say you are an inspiration and thank you for all you have given us in your time and wisdom.

Peace,
Rick

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Lisa,
Wonderful that your onc is willing to learn. I love that you have continued to share with him. Please keep sharing your very good news and experience.

Aloha,
Kathleen

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Always a pleasure to hear from you, Lisa. Your story is an inspiration for us all.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

I love all of this...the strength, the sharing, the dates! New here, but this is a tremendously powerful story. Thanks for sharing~

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Hi Lisa,
Thanks for sharing not just this post but all the post I have seen from you since being diagnosed May 2010. Tomorrow is the aniversary of my surgery which left me w/ a perm colostomy and took out all the nasty cancer............there has been no evidence of it since so I keep my fingers crossed and try to do the right things and hopefully 6 years from now saying the same thing as you.
You truly are an inspiration lisa.
Tom

yoga
Posts: 87
Joined: Feb 2011

Hello!
I am so happy for you! Your post has given me added optimism . . . . thank you.
Hugs from me to you.
yoga jo

crazylady
Posts: 544
Joined: Jun 2004

Hi Lisa,

I'm so happy for you and hope that you will continue to have good health. Your story is amazing.

Take care,
Jamie

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