In need of advice ... it's back!

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hummingbird3
Posts: 56
Joined: Sat Sep 14, 2013 5:11 pm

In need of advice ... it's back!

Postby hummingbird3 » Fri May 15, 2015 12:57 pm

:shock: I have been lucky to have a few years since my last recurrence, but sadly it is back. Fortunately, it is a local recurrence. I am in need of some advice from the experts ...

Seems like I have (at the moment) two options.
Standard pelvic radiation/chemo/surgery or HIPEC.

HIPEC doc says if I do radiation now and need HIPEC for peritoneal met. later it would "muck things up", but it is doable. His thoughts are HIPEC first and deal with anything that may pop up with liver/lungs with SBRT later.
Onc. thinks it is radical for local recurrence and traditional may be the way to go first.

I know I am very lucky so far with both recurrences being localized. But, now it is time to get this gone once and for all.

Any advice would be greatly appreciated!
9/11 dx CRC, colectomy/ileostomy, Stage IIIC :shock:
11/11 - 6/12 FOLFOX/nulasta
7/12 watching possible cyst on ovary ... 8/12 it grew
10/12 hysterectomy, oophorectomy, complications/blockage, TPN
Stage IVa
12/12 small bowel resection
3/13 -9/13 FOLFIRI/nulasta
NED
10/14 - 2/15 close monitoring
4/15 it grew
PET/biopsy .. local recurrence
8/15 surgery
NED ... No chemo!
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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: In need of advice ... it's back!

Postby vilca11 » Fri May 15, 2015 1:36 pm

Very little info for any sound advice. You do not have your signature and details in email. And what do you mean by localized - do you have mets only in peritoneum? It is just that you mention liver/lung/SBRT and in the same time you are using word "localized".
Anyway, I am sorry to hear it is back - that horrible news is very hard to accept in the beginning... Hang in.
Hugs, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home
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hummingbird3
Posts: 56
Joined: Sat Sep 14, 2013 5:11 pm

Re: In need of advice ... it's back!

Postby hummingbird3 » Fri May 15, 2015 1:42 pm

So sorry for the confusion, the recurrence is local to past surgical site of rectum and pelvis from hysterectomy. The mention of liver/lung is the assumption of HIPEC doc that it will later return there (as he does not think he can CURE me) .. and if we get the abdominal cavity washed now, we can deal with those later pop ups as they occur.
9/11 dx CRC, colectomy/ileostomy, Stage IIIC :shock:
11/11 - 6/12 FOLFOX/nulasta
7/12 watching possible cyst on ovary ... 8/12 it grew
10/12 hysterectomy, oophorectomy, complications/blockage, TPN
Stage IVa
12/12 small bowel resection
3/13 -9/13 FOLFIRI/nulasta
NED
10/14 - 2/15 close monitoring
4/15 it grew
PET/biopsy .. local recurrence
8/15 surgery
NED ... No chemo!
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rwightman
Posts: 211
Joined: Sat Jan 17, 2015 6:50 pm
Location: Southwest

Re: In need of advice ... it's back!

Postby rwightman » Fri May 15, 2015 1:46 pm

Why is the doctor just assuming it will come back to the liver or lungs? That seems like an odd statement to make that predication as you are trying to deal with the here and now.
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU
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Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: In need of advice ... it's back!

Postby Delinda2 » Fri May 15, 2015 1:53 pm

Hummingbird, I don't have the expertise to address your question but had to say how rotten it is that you have to deal with this again. Best of luck to you & know that I'll be sending good vibes your way. Take care. XXOXO, Delinda
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."
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hummingbird3
Posts: 56
Joined: Sat Sep 14, 2013 5:11 pm

Re: In need of advice ... it's back!

Postby hummingbird3 » Fri May 15, 2015 6:27 pm

rwightman wrote:Why is the doctor just assuming it will come back to the liver or lungs? That seems like an odd statement to make that predication as you are trying to deal with the here and now.


Probably because I asked about SBRT and that is likely used there.
The HIPEC doctor does not think he can "cure" me in his honest opinion. I am stage IV and this is my second recurrence since DX in 2011, telling him it is likely to return. He said he feels he can get me a long remission however, and that if I recur later to the liver or lungs .. or anywhere I suppose he just mentioned there in our conversation, radiation may be an option at that point (SBRT is a form of radiation). He feels HIPEC is the way to go forward right now before "mucking" things up with radiation.

I am just really confused right now and was hoping for a bit of advice/experience.
9/11 dx CRC, colectomy/ileostomy, Stage IIIC :shock:
11/11 - 6/12 FOLFOX/nulasta
7/12 watching possible cyst on ovary ... 8/12 it grew
10/12 hysterectomy, oophorectomy, complications/blockage, TPN
Stage IVa
12/12 small bowel resection
3/13 -9/13 FOLFIRI/nulasta
NED
10/14 - 2/15 close monitoring
4/15 it grew
PET/biopsy .. local recurrence
8/15 surgery
NED ... No chemo!
Top
User avatar
rwightman
Posts: 211
Joined: Sat Jan 17, 2015 6:50 pm
Location: Southwest

Re: In need of advice ... it's back!

Postby rwightman » Fri May 15, 2015 6:39 pm

I don't know your history, but I have a pelvic met too and two small suspected peri mets so we are doing HIPEC. My onc said other option is chemo for life, which is not a good option so I am going for it. Don't know if that helps....
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU
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User avatar
vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: In need of advice ... it's back!

Postby vilca11 » Fri May 15, 2015 6:50 pm

Hey, birdy, I wrote advice for you but somehow it is not here... I said that I would go with HIPEC first and explained why. I wonder if moderators banned it or where did it go...
Hugs, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home
Top
hummingbird3
Posts: 56
Joined: Sat Sep 14, 2013 5:11 pm

Re: In need of advice ... it's back!

Postby hummingbird3 » Fri May 15, 2015 7:19 pm

rwightman wrote:I don't know your history, but I have a pelvic met too and two small suspected peri mets so we are doing HIPEC. My onc said other option is chemo for life, which is not a good option so I am going for it. Don't know if that helps....


I think that is a great decision for you! I am glad to hear you are a candidate and wish you the very best outcome!
We may be going through this at the same time!
9/11 dx CRC, colectomy/ileostomy, Stage IIIC :shock:
11/11 - 6/12 FOLFOX/nulasta
7/12 watching possible cyst on ovary ... 8/12 it grew
10/12 hysterectomy, oophorectomy, complications/blockage, TPN
Stage IVa
12/12 small bowel resection
3/13 -9/13 FOLFIRI/nulasta
NED
10/14 - 2/15 close monitoring
4/15 it grew
PET/biopsy .. local recurrence
8/15 surgery
NED ... No chemo!
Top
DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: In need of advice ... it's back!

Postby DarknessEmbraced » Sat May 16, 2015 12:11 pm

I'm sorry the cancer has returned. I wish you luck with your treatment!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)
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