No to Hipec

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Apple1291
Posts: 68
Joined: Mon Jul 04, 2011 2:14 pm

No to Hipec

Postby Apple1291 » Wed Jan 25, 2017 11:10 am

My dad was diagnosed with a recurrence in June of 2016 after an original 2b diagnosis in 2011. I will figure out how to update my signature today, I promise. He completed 12 tx of Folfiri and Avastin at the end of November 2016 in hopes he would be a candidate for Hipec, since his cancer has only spread to the peritoneum. The ct scan he had in November showed no evidence of disease so we were very hopeful. Unfortunately his doctor at Mt Sinai in Toronto told us today after his laparoscopy that although the cancer is responding to chemo it is too widespread for Hipec. We are devastated and really unsure of our next step. He is 62 years old and in great shape. Does this mean that Hipec is off the table forever? I've just spoken to someone at Cancer Treatment Centres of America. What else should I do? Just looking for some advice and maybe a little encouragement as I am so very sad right now. Thanks in advance.
Daughter to Dear Father 57 years old at diagnosis
T4N0MO July/11
12 rounds folfox completed March/12
Recurrence June/16 peritoneal carcinomatosis
12 rounds folfiri and avastin completed November/16
Many more rounds of chemo and 12 tx radiation

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: No to Hipec

Postby Lee » Wed Jan 25, 2017 12:09 pm

So sorry to read about your dad's recurrence, especially so far out. Usually at the 5 yr mark, the chances of anything happening is slim. Are you in Canada?

Because he is dealing with a recurrence, get 2nd opinion(s) at major cancer treatment centers. It sounds like your dad is mostly in good health, thus they can treat him aggressively. Yes Cancer Treatment Centers of America would be a good choice. Not sure where you are, butt Sloan Kittering in NYC might also be a good place. Mayo Clinic in Minnesota might be another place. MD Anderson in Texas.

If you are in Canada, hopefully others will chime on places to see there.

DON'T give up the hope. Others have made it to NEDville after a recurrence. Yes surgery is his best option, which is why you want to get him to major cancer treatment center. Get several opinions.

Good luck,

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!

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

Re: No to Hipec

Postby Maia » Wed Jan 25, 2017 12:17 pm

Apple1291 wrote: Does this mean that Hipec is off the table forever? I've just spoken to someone at Cancer Treatment Centres of America. What else should I do? Just looking for some advice and maybe a little encouragement as I am so very sad right now. Thanks in advance.


He might continue responding to chemo and become resectable, a candidate for CRS/HIPEC : ) Also, you could look for an immunotherapy trial, in case he's lucky to respond to it with a more durable response (like this, with a remarkable immunotherapy that is in trials in Canada only: https://clinicaltrials.gov/ct2/show/NCT02285816). You can look for more immonotherapy trials filling with "Canada" the search box in the clinical trials finder in my signature (not mine! I'm just linking to it). And since you consulted in other country and you might be willing to travel, you might want to take a look at this new procedure (sadly, not available in Canada neither the States, but very relevant for his situation): viewtopic.php?f=1&t=56641&p=448006
I'm sorry you had such news but hopeful that you'll find a course of action that will help your dad!

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

Re: No to Hipec

Postby Maia » Wed Jan 25, 2017 12:19 pm

Since Lee mentions Mayo... apparently, PIPAC will be FDA approved and available first in Mayo this year. So, strategically, it might be a good place where to consult.

Apple1291
Posts: 68
Joined: Mon Jul 04, 2011 2:14 pm

Re: No to Hipec

Postby Apple1291 » Wed Jan 25, 2017 1:50 pm

I'm so glad to be a member of this forum! Thanks Lee and Maia for responding so quickly. This morning's news was a big blow to my family and I still feel a little like I've been punched in the stomach. However, you taking the time to offer advice is very reassuring. I've since been in touch with Roswell and Mayo. I guess keeping busy and taking action is helping me feel a lot better. Thank you Maia for the link, I am going over it now, but I wanted to say thank you first. I have 2 daughters who love their grandfather so much and I love him more than I can properly express in words. We are not giving up.

Anne
Daughter to Dear Father 57 years old at diagnosis
T4N0MO July/11
12 rounds folfox completed March/12
Recurrence June/16 peritoneal carcinomatosis
12 rounds folfiri and avastin completed November/16
Many more rounds of chemo and 12 tx radiation

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

Re: No to Hipec

Postby Maia » Wed Jan 25, 2017 2:09 pm

Good luck, Anne. It's not easy but there is very much that can be done and things are changing for good, since a couple of years ago, and even more faster since past year. Keep us posted!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: No to Hipec

Postby Lee » Wed Jan 25, 2017 6:15 pm

Maia wrote:Good luck, Anne. It's not easy but there is very much that can be done and things are changing for good, since a couple of years ago, and even more faster since past year. Keep us posted!


Ditto to what Maia said.

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!

User avatar
SEWHAPPY
Posts: 86
Joined: Tue Nov 15, 2016 4:25 pm

Re: No to Hipec

Postby SEWHAPPY » Wed Jan 25, 2017 6:31 pm

Good luck and prayers for your whole family! Your Dad is lucky to have your support and advocacy on his side.
Female age 51.
CC diagnosed 10/13/16 at first colonoscopy.
Lap colon resection 11/21/16, removed ovary & fallopian tube.
T4N0M0, stage IIC.
Lynch negative.
Power port installed 12/19/16.
12 rounds FOLFOX done 6/16/17.

Canada777
Posts: 62
Joined: Mon Mar 28, 2016 6:24 pm

Re: No to Hipec

Postby Canada777 » Wed Jan 25, 2017 6:57 pm

My boyfriend had a similar situation. Toronto told him no to hipec after 12 Rounds of FOLFOX that showed stability. He only had peritoneal mets too. We had our oncologist on board for second opinions. Calgary has apparently accepted patients that Toronto said no to. Roswell did my boyfriends hipec successfully. HIPEC is very expensive so we applied to the ministry of health for funding. Luckily we got approved. Please send me a pm if you need more details. I would be happy to answer more questions.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX & then successful HIPEC in 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis 9 months later.
Years of chemo.
At rest. Sept 2021.


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