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Beccaschocked
Posts: 30
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

New here

Postby Beccaschocked » Wed Nov 01, 2017 7:30 pm

Hello,

My husband has been stalking these boards on my behalf of my for the past two and a half year and reporting stories back to me. We’ve been celebrating and mourning along side you from the shadows.

After this last scan, not a good one, I decided I needed in on some of the wisdom and love!

My story...
I’m a 34 year old mother of two. I was diagnosed with stage 4 CRC with Mets to the liver in March of 2015, weeks after giving birth to my daughter.

I underwent 3 infusions of folfoxiri + avastin and 3 folfiri + avastin to prepare for liver resection. In July of 2015 I had a successful, albeit complicated, liver and colon resection. I followed up with 6 infusions of folfox.

I had two years living the good life NED.

In my most recent scan a nodule that had been stable at 5mm for 2 year grew to 12mm. Obviously we’re devestated, but still feel positive knowing that it can *hopefully* be removed and we can get back on the NED track.

A question- to anyone with recurrent lung Mets, what was your post surgical protocol? There doesn’t seem to be a standard protocol that I can find, and my oncologist is adamant that we need to get pathology reports back prior to deciding on treatment, perhaps more thoughtful than my rash planning!

I’m also 100% open to suggestions or advice on lifestyle changes you’ve found to help. (Already plant based and sugar avoider, but I fell of the wagon the last few months).

Thank you all! I already have found comfort in sifting through your stories.
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection followed by 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.
7/2018- Clear scan NED

Lee
Posts: 5747
Joined: Sun Apr 16, 2006 4:09 pm

Re: New here

Postby Lee » Thu Nov 09, 2017 11:17 am

Hi and welcome,

So sorry no one has responded sooner. Sometimes this board gets busy and some post get bumped down pretty fast.

Since you are dealing with one spot, I believe your chances of becoming NED again are very good. Hopefully by bumping this back up to the top, others who have walked in your shoes with have some good advice. I know there are some procedures out there that can deal with this.

My advice, get opinions from major cancer treatment centers. See what options you have.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

NHMike
Posts: 1847
Joined: Fri Jul 21, 2017 3:43 am

Re: New here

Postby NHMike » Thu Nov 09, 2017 12:51 pm

First, I'm impressed and happy that you were NED from Stage 4. Second, if you did it before ...

I can't offer any advice to your post except for these four recommendations:

Exercise
Two servings of tree nuts per week
Daily regimen aspirin
Vitamin D3 supplements
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; 9/8: 1.8; 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
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

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: New here

Postby mypinkheaven » Thu Nov 09, 2017 1:08 pm

There are many treatments for lung mets: VATS, ablation, SBRT and proton radiation. And, of course, chemo. Your nodule is big enough for a biopsy - is that the pathology your doctor is waiting for?

Good luck in getting NED again!
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

Beccaschocked
Posts: 30
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

Re: New here

Postby Beccaschocked » Thu Nov 09, 2017 7:21 pm

Thank you so much for the responses. It’s always good to connect with people battling the same beast!

We are going to biopsy it, but my lobectomy is already scheduled as they are very confident it is cancer. Treatment will depend on how the pathology comes back from surgery. Praying for no lymph involvement!

My surgery is set for November 20th.
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection followed by 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.
7/2018- Clear scan NED

User avatar
susie0915
Posts: 873
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New here

Postby susie0915 » Fri Nov 10, 2017 8:34 am

There are many on this forum that were ned and had a single lung met. Had surgery and have been ned since. So you can beat this once again. I'll be praying everything goes well. What makes the doctor sure it is cancer? Is there a chance the biopsy could come back negative?
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

Beccaschocked
Posts: 30
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

Re: New here

Postby Beccaschocked » Sat Nov 11, 2017 4:10 pm

susie0915 wrote:There are many on this forum that were ned and had a single lung met. Had surgery and have been ned since. So you can beat this once again. I'll be praying everything goes well. What makes the doctor sure it is cancer? Is there a chance the biopsy could come back negative?


The doctor is confident it is cancer based on features of the nodule. It made than doubled in size over 6 months,is in the lower lobe, and is round in appearance. There is stil a wildly unlikely chance that it is something else, which will be determined by a biopsy on Tuesday. We are praying for the unlikely chance of it not being cancer, but preparing for round 2 of the fight.
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection followed by 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.
7/2018- Clear scan NED

User avatar
susie0915
Posts: 873
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New here

Postby susie0915 » Sat Nov 11, 2017 4:41 pm

There always is a chance. But like I said many have been in your situation and had surgery and been ned since. You are in my prayers.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6


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