A Toast to 2020!

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

A Toast to 2020!

Postby juliej » Fri Jan 03, 2020 7:31 pm

In August of 2010, on a perfect summer day, I was told I was dying. I didn't really believe it at first. I was healthy, fit, young, with no history of cancer in my family. Then they showed me the images. There were tumors everywhere. How could someone who looked so well on the outside be so sick on the inside?

I was overwhelmed and asked for the prognosis. The oncologist said 6 months without chemo, 18 months to 2 years at best with it. There was zero chance of surgery. I didn't feel brave or courageous or anything like people in movies about cancer patients. Just scared. Really, really scared. But I needed to push back. I wasn't dead yet and although the road ahead looked like the highway to hell, it wasn't clear if there were turn-offs, exits, U-turns, roadblocks, or crossroads.

Fourteen months of chemo later, I had a consultation at MSKCC where I learned the chemo had done a lot of damage to my tumors. They were ready to operate on me and I was ready to take a chance. The plan involved two major surgeries (one involving an HAI pump), each with multiple parts, only months apart from each other - assuming, of course, I did well on the first one. It was a crossroads, not an exit ramp, but I felt like it was the beginning of something good. It took two additional surgeries over the next year and a lot more chemo until I got my first clear scan.

At first, I was elated, but also apprehensive. With cancer you never know if you've really found an exit but taking that crossroad was the smartest thing I've ever done. In 2010 when I was first diagnosed I used to think about 2013, the year I wouldn't ever live to see. Now it is 2020 and thanks to Dr. Kemeny and her team at MSK, I am still here.

I also owe thanks to all of you. You lifted me up when I was down, and your words, thoughts and prayers carried me through my darkest days. I wouldn't be so cocky if all you wonderful people didn't have my back through all of this. At the end of "my final year" (2012) I proposed a toast. I would like to repeat it this year.

(Please raise your glasses high!)

To the health and well-being of the members of this Club (whom I cherish), to peace, love, and happiness, to winter sunshine, to summer shadows, to bravery and perseverance, to those just starting out on this journey and to those who are veterans of the infusion rooms and surgery wards, to the unshakeable and constant love of caregivers, to our lovers and spouses who view our scarred bodies with non-judgmental eyes and unconditional love, to those whom we've lost in battle and who will forever live on in our hearts, to all of you reading this: your goodness and compassion make the world a finer place to be, and I am privileged to count you all as friends.

Much love,
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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CRguy
Posts: 10230
Joined: Sun Feb 10, 2008 6:00 pm

Re: A Toast to 2020!

Postby CRguy » Fri Jan 03, 2020 7:44 pm

I can only toast you back
and say

WORD !

Love Peace and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Claudine
Posts: 397
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A Toast to 2020!

Postby Claudine » Fri Jan 03, 2020 9:23 pm

Cheers to you and all still fighting! May they all post a similar update in January 2030!!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Punky44
Posts: 441
Joined: Mon Oct 01, 2018 4:29 pm

Re: A Toast to 2020!

Postby Punky44 » Sat Jan 04, 2020 12:45 am

Cheers to you and congratulations! Lovely words!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3
Latest update: 6/20–Clear CT, normal CEA

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

AlexandraZ
Posts: 178
Joined: Fri Aug 23, 2019 8:25 am

Re: A Toast to 2020!

Postby AlexandraZ » Sun Jan 05, 2020 8:24 am

Juliej,

What a beautiful post! You inspire so many of us and gave me so much hope when no one else really could. We are in much the same position, except for the fact that my Jesper has "innumerable" lung nodules, so I don't know what our best option is. But we are finally going to MSK after his next scan.

Thank you for still sticking around on this forum!! Your presence here means more than you know.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

boxhill
Posts: 588
Joined: Fri Apr 06, 2018 11:40 am

Re: A Toast to 2020!

Postby boxhill » Sun Jan 05, 2020 9:01 am

Congratulations and thanks, JuieJ! :D :D :D
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

kiwiinoz
Posts: 1151
Joined: Thu Jan 03, 2013 11:44 pm

Re: A Toast to 2020!

Postby kiwiinoz » Sun Jan 05, 2020 5:38 pm

Great toast Julie, this will be 10 years right, and I bet you thought you would never see this time.
Super stoked to be able to read this and share it with you, and I'll certainly have a toast to you!
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

rachelfromnyc
Posts: 47
Joined: Fri Oct 04, 2019 11:32 am

Re: A Toast to 2020!

Postby rachelfromnyc » Sun Jan 05, 2020 8:33 pm

Thanks for sharing. I am in a bad situation myself with a poor prognosis so I love reading stuff like this. Cheers Julie :)
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Siti
Posts: 171
Joined: Thu Aug 01, 2019 10:58 am

Re: A Toast to 2020!

Postby Siti » Mon Jan 06, 2020 1:21 pm

Thanks for being an active member and sharing your story. I read your posts when I found this forum and it gave us a lot of hope. Cheers to an amazing decade ahead, totally cancer free and living life to the fullest!
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

Mrned82
Posts: 15
Joined: Wed Jan 08, 2020 6:38 am

Re: A Toast to 2020!

Postby Mrned82 » Thu Jan 09, 2020 3:32 pm

So inspiring...stories like yours it's what "relight my fire".. :D ..happy 2020!!!!
male 37- italy/uk
stage 4 colon cancer with liver/lung mets since 2017
folfiri + cetuximab
7/2018 liver resection
09/2018 colon resection
38 rounds of chemo ...and still going on....
NO EXPIRATION DATE

FightCRC
Posts: 46
Joined: Fri May 25, 2018 10:39 pm

Re: A Toast to 2020!

Postby FightCRC » Fri Jan 10, 2020 2:57 pm

Juliej, I personally feel my family owes so much to you, for sharing your story, and providing a road map for treatment. And most of all, for providing hope.

When I realized HAI gave us our best shot, I devoured all the patient stories on the various message boards. Yours was my favorite. I searched your posts and read them in order...absolutely riveting stuff. We are in CA, and knowing a fellow West Coaster made the move to NYC for treatment let us know it was possible. It could be done. So we followed your lead and moved our family out to NJ to get treatment at MSK with Dr. Kemeny.

We are still very much in the thick of it and the road has been quite bumpy. No matter what, though, we will always remain grateful to you and all the others here who have shared their experiences. Awesomely inspiring. Wish you a long happy and healthy life ahead.


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