Stage IV for 4.5 years.....NED again!!

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stevieb
Posts: 407
Joined: Sat Feb 09, 2013 12:26 am

Stage IV for 4.5 years.....NED again!!

Postby stevieb » Mon Jul 31, 2017 11:18 am

I just got an NED scan result from MDA! I had a lung cryoablation at the end of May on one small nodule and am still NED! Continuing on Celebrex, Xeloda, and Avastin for 3 months and scan again! Happy Dance!!!!
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Stage IV for 4.5 years.....NED again!!

Postby Volfan » Mon Jul 31, 2017 12:33 pm

Great news.
That's definitely happy dance news.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Stage IV for 4.5 years.....NED again!!

Postby veckon » Mon Jul 31, 2017 12:33 pm

Incredible! Congratulations.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

tater
Posts: 128
Joined: Wed Jul 19, 2017 5:53 pm

Re: Stage IV for 4.5 years.....NED again!!

Postby tater » Mon Jul 31, 2017 12:43 pm

Awesome. I love seeing post like this. I can't wait till me and my wife get to do the NED happy dance.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

DebZ
Posts: 83
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: Stage IV for 4.5 years.....NED again!!

Postby DebZ » Mon Jul 31, 2017 12:45 pm

Can I ask, if you had to do it again, would you do the laser lung surgery in Europe, or just do ablations? I'm at crossroads but feel frozen in indecision and fear. Folfiri kept lung mets stable for more than a year but they're growing again. Trying to decide if should try to get into NIH trial, head to London if possible, or try ablation. I've been told too many mets for normal surgery. That's from few oncologists though, not a surgeon. Going on big family vacation in few weeks, but after need to get down to business. I'm on Folfox now but can't imagine that will last long.
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)

crazylife
Posts: 255
Joined: Wed Dec 30, 2015 11:29 am

Re: Stage IV for 4.5 years.....NED again!!

Postby crazylife » Mon Jul 31, 2017 12:59 pm

Congrats!!!!

Would love to hear your thoughts on the laser lung surgery as well. DH is in same boat with 5 lung mets too scattered to be removed surgically. They mentioned RFA when they grow.

Also, how does on get on the ADAPT protocol? Do you need to see dr. Lin or just ask your oncologist about it?

Thanks!!!
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: Stage IV for 4.5 years.....NED again!!

Postby behconsult » Mon Jul 31, 2017 2:59 pm

stevieb wrote:I just got an NED scan result from MDA! I had a lung cryoablation at the end of May on one small nodule and am still NED! Continuing on Celebrex, Xeloda, and Avastin for 3 months and scan again! Happy Dance!!!!

If clear in three months do you plan on continuing with chemo?
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Stage IV for 4.5 years.....NED again!!

Postby Maia » Mon Jul 31, 2017 3:33 pm

So so happy for you!!

I didn't realize you're adding bevacizumab to XCEL. That prevents it from being a total oral regimen. Is your onc's idea? It is interesting to know that he's OK with the combination of bevacizumab with celecoxib.

Many good wishes, Steve!

stevieb
Posts: 407
Joined: Sat Feb 09, 2013 12:26 am

Re: Stage IV for 4.5 years.....NED again!!

Postby stevieb » Mon Jul 31, 2017 10:55 pm

I would do laser lung resection again in a heartbeat with Dr Ladas in London. He is excellent and removed 12-15 nodules throughout both of my lungs, some of which were undetectable on CT. Since then, I have had 5 cryoablations at MDA, no more than two at a time have popped up and all under 1cm. We are just playing whack a mole now and staying on Celebrex/Xeloda/Avastin combo until things progress. I brought research on Adapt to my local onc and Dr Lin reached out to her to discuss the protocol. I have felt as close to normal on this regime as I have ever felt since being diagnosed!
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage IV for 4.5 years.....NED again!!

Postby NHMike » Tue Aug 01, 2017 11:43 am

I paid a couple of hospital bills today (haven't actually received the bill yet but I knew that they were coming). I decided to start a list of the bills and when I pay them as it's something that you don't want to get behind on. The health insurance portal isn't that useful - it puts in amounts that you're responsible for but it doesn't include amounts that you may have paid at the time of the service. So my approach has been to call the places that I've been to see if I owe them anything. It seems to take them a while to get bills in the mail.

On another note, this morning, when I woke up, I noticed that a lot of my anxiety was gone. I also get the feeling that my senses are slightly less sensitive than before. That is I don't feel aches and pains quite as sharply and maybe a little less sharp in hearing and vision. It's fine for daily functioning and I can think normally but maybe these are effects from the Xeloda. I was able to sleep quite nicely last night - perhaps due to the lower level of anxiety.

Of course this might just be my imagination too.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Stage IV for 4.5 years.....NED again!!

Postby teri3 » Tue Aug 01, 2017 1:13 pm

WooHoo now that's some great news. Here's to more clear scans!
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Stage IV for 4.5 years.....NED again!!

Postby Maelleous » Tue Aug 01, 2017 3:09 pm

Awesome!! That is fantastic news!
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Stage IV for 4.5 years.....NED again!!

Postby Deb m » Thu Aug 03, 2017 10:44 am

Very happy for you. Hope NED lasts forever!


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