terminal or not??

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mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

terminal or not??

Postby mike218 » Mon Dec 05, 2016 3:26 pm

2nd colon resection surgery planned in August was cancelled after they went in and saw liver tumors (not expected) so promoted to stage 4
and decided to put me on Folfiri (with 4 rounds of Avastin) and shrink or stabilize them
had MRI this past Thursday, saw surgeon Friday -was expecting date for surgery --still with tumor in colon and have at least 8 (prob 10-12 peppercorn nodules on liver )-very small, right and left sides, I mentioned SIR, he felt tumors to small to be treated yet with it
now surgeon saying keep on Folfiri, surgery not an option or not needed at this point-we actually asked is this going to be a chronic situation (maybe I should be happy) or is it terminal --he said we are all terminal, I don't think he meant anything harmful but he truly seemed on edge, we are very happy with him and the hospital (UMMC)-he will present to his tumor board Tuesday to see if anyone there would have another option, we see oncologist next week-routine visit
he offered/suggested a 2nd opinion to verify/alleviate our fears and suggested Univ. OF Penn-he will get us a name--we live in NJ (-not going to MSK-saw them initially as 2nd opinion in 2014-they suggested same course local oncologist was using, (and that it was fine with them to proceed with him) when we reached out to them in 2016 with new colon tumor , they said thanks but no thanks-because we had our treatment elsewhere
it just seems he feels why do surgery now when chemo keeping the tumors at bay--I just want them gone!!
Question:
anyone in this situation with prolonged Folfiri treatment
opinions Univ. of Penn

MIke
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: terminal or not??

Postby WriterGirl1969 » Mon Dec 05, 2016 9:44 pm

mike218 wrote:it just seems he feels why do surgery now when chemo keeping the tumors at bay--I just want them gone!!
MIke


Hi Mike. Sorry to hear your staging was advanced to IV. I have no expertise in your specific question, but would say that if you are at all questioning the treatment and have a chance to get a second opinion, why not do that? At the most it could provide you with options, and at the least it would give you more peace over the decision. As good as any doctor or treatment center is, this is your life.

I was really disappointed to hear what MSK told you, but not entirely surprised. I've heard similar stories from others to that effect. Dana Farber in Mass is supposed to be EXCELLENT, and very compassionate. I don't know U of P, so will refrain from an opinion on that.

Whatever you decide to do, I hope that it goes well for you and gets you NED! Prayers and Hugs from me,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: terminal or not??

Postby mike218 » Wed Dec 07, 2016 3:08 pm

WriterGirl1969 » thank you--sometimes your head just keeps spinning-got apt 1/4/17

mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

User avatar
ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: terminal or not??

Postby ktwmn » Wed Dec 07, 2016 4:04 pm

Mike, I think Brownbagger has been on prolonged folfiri with good results for years, although I think his mets were in lungs rather than liver. Perhaps he will chime in...

Definitely good to consult with other research hospitals, U of Penn is very good.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

mymom
Posts: 1288
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: terminal or not??

Postby mymom » Wed Dec 07, 2016 4:20 pm

Have you contacted dr kemeny at Msk in NYC about HAI pump
Mom has stage 4
Diagnosed may 2011
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: terminal or not??now SIRT

Postby mike218 » Thu Dec 08, 2016 2:00 pm

just got news now they want SIRT----I think that's kind of "increasing survival changes" vs. cure
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

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

Re: terminal or not??

Postby Maia » Thu Dec 08, 2016 2:18 pm

I'm so glad for you!!

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Rob in PA
Posts: 2005
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: terminal or not??

Postby Rob in PA » Thu Dec 08, 2016 11:47 pm

Not
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: terminal or not??

Postby JDMNYC » Fri Dec 09, 2016 9:06 pm

Rob in PA wrote:Not


That's what I'm talking about.
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

Lee
Posts: 6202
Joined: Sun Apr 16, 2006 4:09 pm

Re: terminal or not??now SIRT

Postby Lee » Sat Dec 10, 2016 3:50 pm

mike218 wrote:just got news now they want SIRT----I think that's kind of "increasing survival changes" vs. cure


Sounds like a plan. Hope it's successful and puts you in NEDville.

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 - 16 years and counting!

jens22
Posts: 1012
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: terminal or not??

Postby jens22 » Sat Dec 10, 2016 5:42 pm

Think you should ask for a consult at MSK with Dr. Kemmeny. She is the who handles metastatic disease to the Liver and does the HAI Pumps that so many members have had sucess with. Being that you live in NJ...I would push this also. Its sad that they told you this, but if she reviews it directly you might stand a better case of getting reviewed.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.

Lee
Posts: 6202
Joined: Sun Apr 16, 2006 4:09 pm

Re: terminal or not??

Postby Lee » Sat Dec 10, 2016 10:48 pm

jens22 wrote:Think you should ask for a consult at MSK with Dr. Kemmeny. She is the who handles metastatic disease to the Liver and does the HAI Pumps that so many members have had sucess with. Being that you live in NJ...I would push this also. Its sad that they told you this, but if she reviews it directly you might stand a better case of getting reviewed.


Yes to what Jen wrote, Dr. Kemmeny may be the route to NEDville.

All the best,

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 - 16 years and counting!

kandj
Posts: 308
Joined: Sun Sep 27, 2015 11:29 am

Re: terminal or not??

Postby kandj » Sun Dec 11, 2016 11:23 am

mike218 wrote: (-not going to MSK-saw them initially as 2nd opinion in 2014-they suggested same course local oncologist was using, (and that it was fine with them to proceed with him) when we reached out to them in 2016 with new colon tumor , they said thanks but no thanks-because we had our treatment elsewhere

MIke


I would try again. Skip the entire referral route and go right to Dr. Kemenys people. She isn't the type to give a crap if you went somewhere else first. If you fit her treatment protocol, she will see you (and by see you, I mean she will run your treatment, your total face time with her will be limited, lol). Dh's surgeon was Dr. DeMatteo and he is a life saver. Literally. He saved my husbands life. MD Anderson wouldn't touch my husbands liver with a 10 foot pole. Dr. DeMatteo put in the HAI pump, and 6 months later removed over 15 tumors/lesions. Some he removed, some he ablated. I don't know what the long haul holds for us, but we never thought we would be even here. And we are here because of Drs. Kemeny and DeMatteo.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 11/2020 New liver met to deal with

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: terminal or not??

Postby mike218 » Mon Dec 12, 2016 12:03 pm

thanks for going straight to Dr K--its an alternative .... will look into SIRT (after choosing location) and then Dr. K
fortunately my wife is a great advocate (better then I am)

mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor


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