Turned down for HIPEC

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

Turned down for HIPEC

Postby Cherie » Sat Jul 25, 2015 2:37 pm

Hi Everyone,

My doctor has turned me down for HIPEC. Although the cancer is only in my abdominal cavity he said its in too many different places for it to be effective. So now what? Has anyone had good outcomes with ADAPT or oil?

My cancer seems to be stable and the only treatment I am doing is vitamin C but I want it gone!

cherie
Last edited by Cherie on Sat Jul 25, 2015 5:19 pm, edited 1 time in total.
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

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Turned down for HIPEC

Postby KWT » Sat Jul 25, 2015 3:40 pm

Cherie , sorry that's not working out for you. It's great that you're stable while just doing vit.C maybe another doc would see your situation differently regarding hipec?

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

Re: Turned down for HIPEC

Postby Cherie » Sat Jul 25, 2015 5:19 pm

Cherie wrote:Hi Everyone,

My doctor has turned me down for HIPEC. Although the cancer is only in my abdominal cavity he said its in too many different places for it to be effective. So now what? Has anyone had good outcomes with ADAPT or oil?

My cancer seems to be stable and the only treatment I am doing is vitamin C but I want it gone!

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

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

Re: Turned down for HIPEC

Postby rp1954 » Sat Jul 25, 2015 5:22 pm

We think in terms of stepwise progress. If you could demonstrate enough receeding biomarkers maybe you could become a surgical candidate again, somewhere, or continue to find more adjunctive steps to reduce the biomarkers. ADAPT is an additive chemical backbone, not necessarily a complete treatment formula. A more complete treatment formula should usually increase MCV toward the 103-110 range, drop several markers in the CEA, CA199, AFP, LDH, ESR group. Also a better formula, or most of its useful components would not require discontinuance before/after surgery. e.g. only a nincompoop dr would withdraw the IV vitamin C or cimetidine components before / after surgery. Also it may be possible to have immunological tumor necrosis in some places with the right stuff.
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

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Turned down for HIPEC

Postby chrissyrice » Sun Jul 26, 2015 1:25 am

I agree with Kenny you might want to get a second opinion on the HIPEC.

Stable can change to active so I understand how you feel about wanting it gone.

You are in good health and not currently on chemo? Is that correct?

I would think this would be the right time to attack it with a bit more active treatment.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

scottg
Posts: 140
Joined: Wed May 31, 2006 8:27 am

Re: Turned down for HIPEC

Postby scottg » Sun Jul 26, 2015 7:20 pm

I am confused,, I had hipec done 2x and i am quite aware of the qualifications.. I would get another opinion..If there is cancer in the liver or too many tumors in other organs they might not do the surgery but if you have no visible tumors and no liver or other unresectable tumors i dont know why they wont,,,The omentum can be completey removed and they can even remove some larger tumors at the time of hipec,They only time they refuse hipec is if the outcome has a very low chance of complete removal of visible tumor,,Different doctors have different threshholds and qualifications. I would definately ask other hipec doctors,,P.S. 9 years cancer free

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

Re: Turned down for HIPEC

Postby Cherie » Tue Jul 28, 2015 2:28 am

I don't get it either...? All my markers are normal and there is no spread to other organs. I need medical literature to back up my argument. There is only one doctor in New Zealand who does this.
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

tigerpaw
Posts: 57
Joined: Sat Jun 20, 2015 1:34 pm
Facebook Username: kristin.lossius
Location: Norway

Re: Turned down for HIPEC

Postby tigerpaw » Tue Jul 28, 2015 2:59 am

Cherie
Sorry you were turned down. Proper patient selection is the key to success with the HIPEC procedure. You can read more about it if you follow this link.
http://hipec.med.nyu.edu/physicians/you ... -candidate

Good luck!

Kristin
63y female
dx July 13 resection of primary in sigmoid colon
Stage 3B cc, T3N1M0
KRAS mutant, codon 12/13, MSS
FLOX (FLV infusion 2 consecutive days + oxi) August 2013. Oxi stopped after 8tx
clear CT 6/14
peri mets + lung met 12/14
1/15 HIPEC
3/15 Lung resection
8/15 Subcutaneous met in midline abdomen-resected
8/15 Two lung nodules, observation, no chemo
2/17 enlarged lymph nodes hilus and mediastinum
5-8/17 FLV + Avastin
3/18 radiation to mediastinal and hilar lymph nodes

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: Turned down for HIPEC

Postby NZJay » Thu Jul 30, 2015 9:29 pm

So frustrated for you, Cherie.

So this was the NZ doctor (ie the only HIPEC one) who denied you?

Find a way to be evaluated in Australia or America. This procedure will give you the best (only???) shot at NED. I know you have enormous willpower - find a way to get the surgery you need. Make them listen to you.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

pfCml73183
Posts: 653
Joined: Sat Jun 22, 2013 7:49 pm
Facebook Username: Celeste Marie Comeau
Location: FL

Re: Turned down for HIPEC

Postby pfCml73183 » Thu Jul 30, 2015 10:15 pm

I am thinking and praying for you, Cherie.
I hope you can get what you want.
Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15


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