What to do. please offer advice.

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

What to do. please offer advice.

Postby Cherie » Tue Aug 18, 2015 2:53 am

What to do?
Today I saw my HIPEC surgeon who told me have some cancer spots on my small bowel above my illeostomy, most are at the bottom of my pelvis with two under my diaphragm. He has told me that the surgery would mostly not work and the cancer would come back and if I did it, it may or may not buy me some time. As for now I’m doing o.k. Each day I take long acting morphine and work most days and live a somewhat "normal" life. I have terrible neuropathy thanks to chemo i did over a year ago. My surgeon wants me to do more chemo after the surgery (if I have it), which I know, will kill me.
I want to live. I have a six year old with a chronic illness who needs her mother. I just feel like I have no options. I do very poorly on chemo and have nearly died while doing it. Please send me your advice or HIPEC stories. Is there anything out there working to keep pelvic spread at bay?
Cherie
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

Nik Colon

Re: What to do. please offer advice.

Postby Nik Colon » Tue Aug 18, 2015 5:03 am

Sorry :( I have no advice but wanted to say hugs and best wishes

DarknessEmbraced
Posts: 3528
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: What to do. please offer advice.

Postby DarknessEmbraced » Tue Aug 18, 2015 7:55 am

I have no advice but just wanted to wish you the best and send hugs! Sorry you are going through this!
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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Rob in PA
Posts: 2005
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: What to do. please offer advice.

Postby Rob in PA » Tue Aug 18, 2015 8:22 am

Cherie, I'm so sorry to hear of this spot you are in. Have you checked out any clinical trials?
Hope some hipec'ers chime in.
rob
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

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: What to do. please offer advice.

Postby lpas » Tue Aug 18, 2015 8:33 am

Cherie, did the surgeon provide any rationale for why he thinks HIPEC wouldn't work for you? Is it because he thinks there's too much cancer? In bad places? If it was me, I'd want more information before making a decision. Did he reference any research on HIPEC outcomes? If HIPEC was potentially my last shot at a cure, I'd expect a very thorough and well-supported explanation for why I shouldn't try it.

Is it possible for you to get a second opinion from a different HIPEC surgeon? Maybe someone in Australia or the States? It strikes me that doctors disagree on this stuff all the time and some surgeons are considerably more aggressive than others. Even if you end up going back to your original doctor for the surgery, it would be good to hear what another provider thinks about your chances for success.

As far as the chemo is concerned, I wonder if you could do a reduced dose along with your IV Vitamin C, since that seems to have really helped you. Either way, I'm sorry you're facing this and good luck with your decision.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

bitchslapped
Posts: 1531
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: What to do. please offer advice.

Postby bitchslapped » Tue Aug 18, 2015 11:58 am

Cherie, I would recommend that the word HIPEC be added in your subject line to draw attention to this thread for those that may have had it. People are not spending as much time on here during the summer months.
Other than that I agree w/lpas & Rob. Any doctor worth his/her salt will welcome a second opinion. You may need to search this forum for the top docs in HIPEC recommended here in the States or elsewhere as I have seen on here before, have your surgeon or you send your charts for a phone consult w/you and/or your surgeon if traveling for a procedure such as this is doable for you...AND maybe even if it isn't.

Best Wishes
bitchslapped
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: What to do. please offer advice.

Postby teachpdx » Tue Aug 18, 2015 1:14 pm

Cherie I'm sorry for what you are going through and know that you are in my thoughts and prayers. I feel for you re. chemo - my body did not react to it as well. Peace and love - Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

rp1954
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

Re: What to do. please offer advice.

Postby rp1954 » Tue Aug 18, 2015 2:47 pm

Cherie wrote:...the cancer would come back...Each day I take long acting morphine and work most days and live a somewhat "normal" life...

You need all the immune function you can mount, before and after the operation. It might be possible to still improve several ways there. Things we've found useful: MegaD3 (+ menaquinone-4) at 4-8 min. One of these beta-glucans.
Life Extension discusses replacing opoids with Tramadol for surgery. Is it possible to use a non-opoid pain killer now, since opoids depress immune function? High dose ascorbate interrupts some morphine effects, do you separate the morphine and iv vitamin C time wise (hrs?), or did you go off iv vitamin C ?

my surgeon wants me to do more chemo after the surgery (if I have it), which I know, will kill me.

Maybe, mild Apatone (US FDA approved salvage cancer therapy with menadione, vit K3, we use MK4 instead)+ lowest DPD inhibited dosing of 5FU (e.g. 60-80 mg of tegafur per day, imported from asia/indonesia and recapped for small dosage) +- celecoxib, cimetidine, IV C ???
What do they say about DPD inhibition possibly being the problem, or if it's some other toxic metabolism? e.g. folic acid is bad, natural folate reduces 5FU-LV side effects.
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 to almost nothing mid 2018, mostly IV C

orcasres
Posts: 836
Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: What to do. please offer advice.

Postby orcasres » Tue Aug 18, 2015 7:32 pm

Cherie,

I can't give advice on HIPEC, but if it is at all possible, a second opinion seems to be a good idea. HIPEC opinions seem to vary a lot from surgeon to surgeon so another opinion might be quite different.

Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far


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