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Finally My Turn

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

I was dx 22mos ago. I'm stage IV with mets to the liver and celiac lymph nodes. Systemic chemo has failed me each time (although my only chemo breaks have been for surgeries) and I'm running out of chemo options. Currently I'm on Avastin and Xeloda, with occasional mitomycin. Here is a portion of what is posted on my blog (on this website and caring pages).

After my failed surgery in January (open/close liver non-resection) I started a new chemo cocktail and liver radiation. The surgeon had found more/larger tumors on the liver than the pre-surgery had indicated and he also found 3 positive celiac lymph nodes. 3 weeks after completing the rads I had a CT scan. Again, the lymph nodes didn't show up. They have never shown on any CT I've had. The tumors we had radiated (all 6 of them) were already showing signs of necrosis. VERY good news. More chemo - wait and see with rads. I asked for a PET scan to try and locate any nodes we can work on while waiting for more liver regeneration.

My team took my case back to the tumor board for node treatment approval. The tumor board was so pleased with my progress that I was approved "enthusiastically and unanimously". A tumor board that is enthusiastic? Cool. So I had a PET scan last week. The scan was Wednesday and The Liver Symposium started Thursday evening. Off to Chicago, scanxiety and all.

I have a special arrangement with all of my docs to get test results immediately - I don't wait for appts. I email my doc as a reminder and they fax the results to me as soon as they become available. So I emailed Dr Ted and my results were faxed on Friday. Great, I'm in Chicago. I went to my room between sessions and dinner (we got a 2 hour break) and checked my email on my phone. Dr Ted had responded more completely than usual, but here is the message in its entirety:

"Will do.
You have had a complete response; no evidence of active disease.
I am so pleased
Ted "

No Evidence of Active Disease - Magical words. Words I never thought I'd hear. It is real. His PA, Leah, called this morning to cancel my appt with him for tomorrow. He only sees sick people and I don't qualify anymore. :) How long will it last? Who knows? I'll take 3 months, 3 years, 30 years....whatever I can. I will see my medical oncologist tomorrow for my chemo treatment plan. I imagine it won't be much different than what I'm on. Maintenance chemo? (chemo lite) Probably. I can live with that for a very long time!

This is not No Evidence of Disease. This is not a 'cure'. But it is wonderful in its own right. I am content with this small miracle for now. Yes, I still want more. I will get there. Baby steps. More waiting. More scanxiety. I'm still Living with canzer. Notice the word capitalized in that sentence. I'm now LIVING large! LOL

Time to remind my docs of their job so they don't slack off now. They need to get me 5 years. In that time, I believe technology will get me 5 more, and 10 will get you 20 every time! Rock on!

Kimby

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

That sounds great Kimby!!! I'd sign up for that in an instant :-)
LIVE it up!
{hugs}
-phil

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

Kimby, that is FABULOUS news!!! Better than FABULOUS!! There isn't a word that describes just how wonderful this is!!!

Now, just so that I understand your post correctly... .does this mean that you have tumours or nodules or "suspicious" areas that, at one point, were metabolically active but now are not showing any sign of metabolic activity? IE: None of them lit up on a PET scan, even though you and your doctors know they are there?

We have all sorts of spots, cysts, scars, etc. in our bodies at any given time and as long as they are not metabolically active, meaning the cancer cells are not active... then heck, I'm with you on that one! I could live with that too :) :)

I am sooooo thrilled for you!!! I hope you are planning on one heck of a celebration!!

Hugggggggs,

Cheryl

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

Yep, I still have liver tumors in my left lobe that have not been radiated yet. We were going to work on those celiac lymph nodes next. Since we know 3 were positive we needed a PET to find the rest. Then we were going to work on that left lobe of the liver.

I'll see my rad onc in a couple of months to check on those tumors in the right lobe that we just radiated and I won't see him again until there is active disease. I love him but I don't think I'll miss him much. :)

I decided to have a Memorial Day BBQ to celebrate. I'm still so fatigued from the rads that I don't know how I'll pull it off - good thing I have lots of family and friends that can do all the work.

WooHoo!

Kimby

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

that news kicks ***. Enjoy the rest of your spring and summer

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

Great News!!!

Cheers, Lance

dmdwins
Posts: 453
Joined: Aug 2008

Hi KIMBY

I am sooooo thrilled for you. I remember when I posted "calling all stage IV's" looking for encouragement. When you responded I was so impressed with they way you "lived" with the disease. Your attitude is super and I hear that NEAD has a very very close relationship with NED!!!!

I am having scanxiety- it's less than 2 weeks away.Keep your fingers crossed.

Couldnt be happier for you.
Dawn

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

ahhhKimby....that is good news. Good Girl!!! I am so thrilled for you. Whoops all teary eyed here....hoooorayyyy

hugs and more hugs

~mags~

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

Hi Kimby:

What absolutely wonderful news. It made my day to read your post. I'm so glad that it is your turn and hope that many more "turns" await others on this board (and beyond).

Have a relaxing, exhilarating, happy day and enjoy your BBQ. Heck. Have seconds and thirds of the BBQ.

Hatshepsut

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

First of all YEAH!!!!!

I am doing the naked happy dance. OK, only my new nearly bald head is naked! Don't want to scare the cat.

Soon you will drop the A and have your NED.

Many Hugs!! Vicki

Annabelle41415's picture
Annabelle41415
Posts: 6512
Joined: Feb 2009

Kimby that is great news. I know you are wanting to do the happy dance right about now. It is wonderful that the tumor board was so on your side. It helps to have great board. I am happy for you. Enjoy your summer.

Kim

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

That is very good news, I so longed to hear those words from angels doctors but sadly didn;t happen. It is great hearing people do get rid of the cancer I am happy that you are ned.

michelle

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

wonderful news. Hope you have a wonderful summer. Live it up.

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

I'm very happy for you Kimby. I know exactly what you mean when you hear it the for the first time and don't really expect it. You earned and keep it up!!!!

AND yes have that BBQ this weekend!!!!

Lisa P.

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

Kimby,

I'm so glad to hear the news you've gotten! No evidence of active disease is wonderful to hear, too! That's the boat I'm now in (except I'm now waiting cause the CEA has inched up), but I was also given the NEAD too. How we both long to hear the NED, but I know we'll take this, for sure!! Enjoy, girl and have fun at that BBQ!

Hugs,
Lisa

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Only we know how elated words like that make us...it is sometimes surreal until we slap ourselves and know its actually what we've heard....I am so happy for ya girl...I hope in time all of us will be saying the same thing...then NED...then cured...Good Luck and enjoy your longgggg life ....and start with this summer and your BBQ........and keep that pretty smile going .... :-)

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Kimby,
I am so happy for you; having been in that boat together, I can say it really is nice to see you finally get that break.
I have had great success with my new therapy, too. I am almost tumor-free thanks to Gleevec. I had tumors in all of my organs and in the brain- they didn't think I had more than weeks to live and then... I got my miracle. The Gleevec started shrinking every tumor and most are now gone! I hope to be able to do the happy dance with you, when we both get NED.
With so much love and happiness,
Holly

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

What FABULOUS news! I can't wait to Happy Dance with you! Miracles do happen, don't they? This is exactly why I never asked "Why me?" - I don't want to ask that now!

Congrats on your news and PLEASE keep me updated. I can't wait for your next news~

Kimby

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

We can be the NEAD squad until we both go NED. Start our own superhero club or something..LOL

Thanks for the kind words and come on over for the BBQ, there's always plenty of food and beverage!

Kimby

menright's picture
menright
Posts: 258
Joined: Oct 2008

Kimby:

Congrats on the great news. I agree with you...you need to celebrate the small victories...next step NED for you!

Mike

Glv49
Posts: 206
Joined: May 2005

Thats wonderful! I am soooo happy for you, enjoy this time that your are NED! Do something you have wanted to do for a long time, celebrate. I am really happy for you Kimby.

Love,
Gail

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Wow Kimby I am a newbee to this club. I am so happy for you and it gives me hope for my husband, John. You ROCK ON GIRL Paula G.

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

That is wonderful news, Kimby, you have been through a lot
so the words make my heart sing.....ROCK ON!!!

Huggs,
Barbara

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Kimby - such wonderful words to hear. I'm so happy for you.

We just need to keep buying a few months at a time and pretty soon it'll be years and years and years!

Celebrate!

Betsy

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

Kim - That is great news. I am so happy for you!

mom_2_3
Posts: 965
Joined: Nov 2008

Kim,

I'm dancing here in my dining room for you. Mind you, I am fully clothed but in my heart I'm all naked and full of glee that you got such great news. As Scouty said, "you go girl!"

Amy

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

Amy,
My husband was reading your post over my shoulder and he laughed out loud. You don't know what an accomplishment that is - and what a gift to me! Thank you for your kind and FUN words!

Kimby

Brenda3.16
Posts: 211
Joined: May 2009

Kimby,

Your story was a great inspiration to me. I am 41 and was recently diagnosed with colon cancer that spread to the liver, lymph nodes and at first they thought lungs, but my PET scan showed the spots on the lung to be inactive. I have a 13 year old daughter. I started chemo April 1st. I go every other week. Thur I go for my first CT scan since the chemo started. This has been a terrifying experience. I worry about my daughter all the time. She is 13 and totally depends on me. I have tolerated the chemo quite well so far. I have been working when I am not getting chemo. I am a 7th grade teacher. I have been trying to do all of the normal things that I do with my daughter. I have also been praying constantly. This illness has made me evaluate my life and faith.

Brenda

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

Brenda,

I'm so glad you found us. I know the fear all too well. It does get better with time. You learn to live with canzer: waiting, worrying, getting ready... And yet LIVING is the answer. I worked for 18 mos after dx but tx became daily and I'm 75 miles from my canzer center. Work is not an option right now. I'm doing some volunteer work now and have done many speeches for local organizations. I guess my plans are to turn that into a career. Laughter Therapy maybe? LOL

Normal will be great for your daughter. It will give her comfort. Normal is hard to do on chemo, though. Remember to be kind to yourself. Let people help. Now is the time to accept every single offer of help, no matter how small. It not only helps you and your daughter, but it is a gift to the person helping.

Thank you for your kind words and all your prayers. Now isn't the time to stop praying...I'm not cured yet!

Kimby

Brenda3.16
Posts: 211
Joined: May 2009

Kimby,

What does dx and tx stand for ? The volunteer work sounds very rewarding. I have had lots of offers for help. I still feel really good and accepting the help is not easy all the time. I had not thought of it being a gift to the person helping.

Where do you get your treatments ? I am getting chemo at a local Dr who I really like , and also seeing Doctors at Sloan Kettering in NYC which is very overwhelming. Have you ever heard anything about the Cancer Treatment Centers of America ? I really like the look of their website and read the book by their Chaplin. My two local Doctors think that Sloan is the place for me even though the Doctors are not very warm people.

Brenda

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

Dx = diagnosis
TX = treatment

Sorry about the shorthand there. Bad habit. I get my treatments at University of Michigan. My oncologist team all are in the GI canzer unit and specialize in liver tumors. It is a very specialized group. You need to know that I don't pick doctors like a normal person. Bedside manner is ok but it makes me nervous. I like the geeky science guys that spend more time in research than with patients. I never ask patients for recommendations for docs because most people (in my experience) like the warm and fuzzy. I really like the old guys that have 'gotten over themselves' and are past the god complex. The geeky guy with a Nurse Practitioner that translates into human.

I have heard conflicting things about CTCA. I'm just not sure. I tend to stick to the NCI Comprehensive canzer Center list. That doesn't mean they can't be a good option, just my opinion. (My opinion is usually worth what you've just paid for it :P) My center (and many others I suspect) is starting to acknowledge the mind/body/spirit connection. At U of M there is a baby grand piano in the lab. Several times I've sat right beside or behind the harpist in the infusion room. They have snacks available for survivors/lovegivers: bagels, ice cream, sherbet, Popsicles, soda, coffee, juices, water, tea, hot chocolate, hot apple cider. They have a masseuse for foot, hand and shoulder massages during infusion.

Like I said, I think I have the best doctors available, but they are probably not what most patients would choose. I consider one of them the equivalent to Dr. House without the drug addiction. You may be looking for Dr. Welby.

Hugs,

Kimby

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

Kimby,

Such great news! Enjoy your appointmentless summer!

Hugs,

Sue

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

I want to thank you all. Your posts are so important to me. It's hard for me to post good news. I know the suffering of so many on the boards and it can be difficult to hear others good news sometimes.

When I say anything positive about my prognosis my family and friends think I'm cured and wonder why I'm so tired all the time. Good news can be inspirational or depressing. I've been on both sides.

So again, Thank You all for being here for me and supporting me through the good stuff, too.

Kimby

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Don't ever worry about that. I'll give you some back. I saw my oncologist yesterday, prior to staring the next round of 'killer' chemo. He went over all my records and said "Well, until the scans in July I can't call you NED, BUT I see nothing here, no activity at all." I asked if I could be NEAD, like Kimby, and he said "Why not?! Go for it!" So, even though I have these last two rounds to get through, then scans, I am joining the NEAD club!!!

Thank You for your wonderful inspiration. NOW I am naked happy dancing, and dam the cat if she can't take it!

Vicki

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

Welcome to the NEAD Club! We have an OPEN membership and are looking for Big, BIG numbers! I am so thrilled for you! Next, NED all around - I'm buying!

Kimby

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

That news just rocks! That's so fabulous. Have a HUGE party this weekend!!!

*hugs*
Gail

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hello Kimby,

Wow...what a great post! So good to read your great news.

Wishing you many, many, many...a long lifetime of days...of restored and good health, comfort and healing, and happy-happy times.

All the best to you!

Katie

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

Kimby, I"m so happy for you!!! You have been such a major inspiration for this board, and for me especially, and I am so thankful to hear that you heard those magical words! I am so happy, I can cry! Lay on back and enjoy a great BBQ with a big, salty margarita, and just relax now, you sooooooo deserve it! Many more years of those words to you!

Hugssssss~
Donna :)

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

It was great reading your update and to finally get to the part that READ NED!!!!!!!!!

dorookie
Posts: 1736
Joined: Jul 2007

Iam so very happy for you. I just know and will continue to pray that these beast has left and will leave you alone forever....I have been away and havent had a chance to catch up so that is why I am responding so late. BUt wanted to jump in there and say how wonderful this news is and that I am just so very happy for you.....I am in Buffalo,NY this week visiting my step kids and having a damn great time....

God Bless
Beth

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

Great news! Now how does one get an invite to that BBQ?? I'll bring my own carrot juice! :-)

Cheers!

peace, emily

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Thanks for sharing this AWESOME news, Kimby! I am confident that we will have many more happy stories from you, and each one will be reason to CELEBRATE!

Hugs,
Stacy

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

For sure is your turn! you deserve this good news, we enjoy so much to hear this success stories, What a great barbecue you are going to have.

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

Kimby,
Thanks for sharing the great news! Enjoy, enjoy! 5 will get you 10...10 will get you 20...I keep humming those words.
Aloha,
Kathleen

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

I just got home from hospital.

GREAT news!!!!!

I'm naked happy dancing big time for you, Kimby!!!!

Hugs, Kathi

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I am so happy for you!

Shannonlw7's picture
Shannonlw7
Posts: 27
Joined: May 2009

i didn't even feel like signing on tonight..but im glad i did..im very happy to hear your good news..and that gives me hope also for whatever else im going to be facing with this disease..i wish you all the best...
shannon

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

Great news, I love reading posts like yours, it is very encouraging news..Hugs to you, Audrey.

CynthiaA's picture
CynthiaA
Posts: 26
Joined: Feb 2004

What a great day to start the rest of your life...live and enjoy! CynthiaA

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

((((((( Kimby)))))) The fact that I had to scroll half way to America to find the end of the page shows the esteem in which you are held on this board. May I add my esteem and offer my congratulations.Ron.

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

Your news is just fantastic. I'm sure the implications of your doctor's message haven't sunk in completely.
Joy

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