Healthy 42 year old diagnosed with stage 4 colon cancer

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Bschreibs
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Joined: Wed Dec 27, 2017 9:22 pm

Healthy 42 year old diagnosed with stage 4 colon cancer

Postby Bschreibs » Wed Dec 27, 2017 9:34 pm

Hey. I was diagnosed with stage 4 colon cancer that has metastasized to my liver. Did not test liver to conclude that all 13 spots were cancerous but doctors assuming they are. Seeing a Dr at Sloan in NYC. Started folfirri and avastan treatment last week. Scheduled for three months and then will redo the scan and cea testing.
Any guidance? Thoughts? Insights? Is this the right course of treatment? Any advice? Thanks so much. Would love to connect with people on this board. Thanks so much!! Bret.

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby jep » Wed Dec 27, 2017 9:49 pm

Hello. Not sure what to say, but if you're being treated at MSK then you're at the right place. My mom's boss is stage 4 and was basically written off until she was treated by Dr. Kemeny at MSK....this doc saved her life and she is now NED. Kemeny would not see my husband as his liver has not been impacted, but we wish you all the best!
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby rp1954 » Wed Dec 27, 2017 11:30 pm

My usual initial suggestions are for newly dx'd patients with colon cancer, facing surgery before chemo.

I would still do the expanded bloodwork asap, (best right before the next treatment) because each Folfiri treatment distorts the blood work more and more. We have had important lifesaving use with the original expanded blood survey years later.

Parts of the off-label treatments and supplement info may be useful at different times, especially in the 3 - 6 weeks off chemo before and after any surgery. I might avoid cimetidine used with Folfiri+Avastin, as some others found it more harsh.

...Any guidance? Thoughts? Insights? Is this the right course of treatment? Any advice?
...Seeing a Dr at Sloan in NYC.

Good move but keep reading and researching.

...Started folfiri and avastin treatment last week.

You needed to get some kind of chemistry started, it's not clear why they started with Folfiri instead of Folfox. Did they mention any tissue or liquid biopsy genetics? There are other nonstandard possibilities e.g. Xeloda (capecitabine) + celecoxib + other stuff.

...Scheduled for three months and then will redo the scan and cea testing

Sounds a little slow. MSK might redo the scan sooner, or -est. Stage IV's on Folfiri get their blood tested every two weeks, some patients get some more CEA (+ CA199 LDH) data even though it gets more complicated while on heavy chemo.

Although there are a lot of unknowns right now, you have a serious situation that has several different technologies that may apply. Most patients who stay local probably never hear of them. Going to MSK can explore the important Hepatic Arterial Infusion option, which has helped save a number of members here when they were written off elsewhere. However, no doctor or institution has all the best technologies under one roof, much less a clearly optimal plan at their fingertips for multimodal treatment of all cases.

Especially in more advanced cases, you have to be your own advocate.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby Deb m » Thu Dec 28, 2017 11:35 am

Your getting treatment a one of the best places, if now the best. I hear nothing but great things from them.

Deb m

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

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby juliej » Thu Dec 28, 2017 5:26 pm

It sounds like you might be a good candidate for an HAI pump. I also was diagnosed Stage 4 with numerous liver mets. My local cancer center said I was inoperable. I went to Sloan, got an HAI pump, and am NED (no evidence of disease) now.

I would ask for a consultation with Dr. Nancy Kemeny at Sloan. She is the best doc for the pump. In fact, the technicians often refer to it as the "Kemeny pump." If you qualify for it, that would be the most aggressive treatment and your best chance (in my opinion) of killing those liver tumors. Also, you should have genetic testing which they automatically do at Sloan but I would check to make sure.

https://www.mskcc.org/cancer-care/doctors/nancy-kemeny

Hope this helps!
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

Bschreibs
Posts: 13
Joined: Wed Dec 27, 2017 9:22 pm

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby Bschreibs » Thu Dec 28, 2017 8:47 pm

Thank you all who have responded! I find all of your information helpful!

Does anyone know why the doctors would choose Folfirri + Avastan vs Folfox?

Thanks again to all

e_enyedy
Posts: 29
Joined: Sat Nov 25, 2017 5:28 pm

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby e_enyedy » Thu Dec 28, 2017 9:18 pm

The first scan will tell how effective your treatment is working. Until the scan - unless something spectacular happens- nobody really knows what is going on
(remember: everything is happening on the inside)
As far as side effects go - you must have seen the list of possible side effects - from the most common to the most exotic.
Once again, the issue is: nobody knows what will you experience until you are on the treatment. (I have the feeling that secondary reactions are genetic)
Personally, I feel that I am extremely lucky - I did not experience any of the side effects of Oxaliplatin. After those 8 sessions I am a 3-weekly schedule;e of
Capecitabine (5FU) and Avastin - once again, thankfully with no side effects whatsoever.

Of course this is only anecdotal. All I can say, do the recommended course and the scan, and after that decide (with your onco's guidance)what to do.
All the best

E
77 yrs male (73 at Dx)
2/13 Dx Carcinoma, Sigmoid Colon
3/13 Sigmoid Colon Hemicolectomy,( 12"+)
3/13 Pathology Staging: T1N0M0; no follow-up chemo
5/15 Recurrence: in pre-sacral space -no other mets detected (Instantly became Stage IV)
5/15 Started 8 sessions of Folfox + Avastin
11/15 Finished chemo, PET/CT: NED
11/15 Started Xeloda+ Avastin every 3 weeks. Still Doing it.
Still NED -(Hope treatment keeps working)

turtle
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Location: Encinitas, CA
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Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby turtle » Sun Dec 31, 2017 11:27 pm

Bschreibs wrote:Does anyone know why the doctors would choose Folfirri + Avastan vs Folfox?


The oxaliplatin in FOLFOX can and often causes permanent, disabling painful neuropathy. I came back to this Internet forum tonight just in case I'd get the opportunity to warn somebody about possible long-term side effects from the oxaliplatin in FOLFOX.
Feb. 2015 at age 39: Dx stage IIIb cecal cancer extending into appendix
March 2015 at age 40: Began FOLFOX, discontinuing early after 10 cycles due to suicidal ideation and difficulty moving
Oct. 2016 at age 41: Dx stage IV with 3 metastases to lungs (one 3.7 cm x 2.2 cm) and 1 to liver
KRAS-mutation positive

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby Tim UK » Tue Jan 02, 2018 9:21 am

I was 43 when I got my stage 4 in early '15. Look through my old posts and footer to see what I have tried but in summary I'd recommend

- get a full gene panel done ... will highlight whether you're a candidate for non-chemo genetic treatments
- I'm BRAF mutant so did triplet therapy with dabrafenib, panitumumab, trametinib
- I started with folfoxiri plus avastin (I.e not either folfiri or folfox, but both)
- I did cyber knife (SBRT) on the liver mets. Amazing
- I had HIPEC for the peritoneal mets. Not sure I would again, see posts
- take frequent advice for side effects ... skin, guts, malabsorption etc. It's all manageable but you need to focus
- I'm on a good immunotherapy trial now (see posts)
- stay fit if you can ... my thing was biking and running ... invaluable for mind and body
- get mental help ... I did a couple of courses of CBT and regularly talk to Macmillan (a UK support charity)
- talk to your friends, don't be shy of enlisting their support and company

Good luck and best wishes
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

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cptmac
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Facebook Username: Dorothy McGrath

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby cptmac » Thu Jan 25, 2018 11:36 pm

I was a healthy 43 year old who had a colonoscopy as a fluke. I was told I had 6 months to live but that I could die at any minute. I found great doctors and the right clinical trial for me. And here I am 13 + years and counting with no signs of cancer.

MSK is a great place. You're in good hands. You found the colon club, a place with great advice.

Just know that everyone's journey is different, but the clinical trial I was able to do, has met with great success. Back in the day, people - even some people on this board - thought I would be a guinea pig for going on this trial - but I assure you I was never treated this way.

And here are the lastest findings on this trial - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5076474/ the odds are now a lot better.

Ask us any questions, we'll do anything to help.
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby LPL » Fri Jan 26, 2018 2:01 pm

cptmac,
Thank you very much for posting what you have done!
It gives great hope for others that are in the beginning of this journey.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

ppanamared
Posts: 12
Joined: Wed Jun 28, 2017 5:47 pm

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby ppanamared » Fri Jan 26, 2018 7:28 pm

You are young, im surprised they didnt go with the oxa right off the bat, but your mix is good also. You will do fine with the chemo dont worry you are young. Just keep working and keep busy if you can and the treatment will fly by.

Bschreibs
Posts: 13
Joined: Wed Dec 27, 2017 9:22 pm

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby Bschreibs » Fri Jan 26, 2018 8:03 pm

cptmac wrote:I was a healthy 43 year old who had a colonoscopy as a fluke. I was told I had 6 months to live but that I could die at any minute. I found great doctors and the right clinical trial for me. And here I am 13 + years and counting with no signs of cancer.

MSK is a great place. You're in good hands. You found the colon club, a place with great advice.

Just know that everyone's journey is different, but the clinical trial I was able to do, has met with great success. Back in the day, people - even some people on this board - thought I would be a guinea pig for going on this trial - but I assure you I was never treated this way.

And here are the lastest findings on this trial - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5076474/ the odds are now a lot better.

Ask us any questions, we'll do anything to help.


Thanks, I appreciate your insight and I’m happy to hear about your journey and the success you had.

Bschreibs
Posts: 13
Joined: Wed Dec 27, 2017 9:22 pm

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby Bschreibs » Fri Jan 26, 2018 8:05 pm

ppanamared wrote:You are young, im surprised they didnt go with the oxa right off the bat, but your mix is good also. You will do fine with the chemo dont worry you are young. Just keep working and keep busy if you can and the treatment will fly by.


Thanks for the positive inspiration. I’m feeling good and going for my fourth treatment next week!

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henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: Healthy 42 year old diagnosed with stage 4 colon cancer

Postby henry123 » Sat Jan 27, 2018 10:58 am

They would have probably already done it but if not then get your msi and Lynch status checked.
It changed the whole course of things for me.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok


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