CT Results – Need HIPEC recommendations

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michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

CT Results – Need HIPEC recommendations

Postby michellecairn » Fri Feb 24, 2017 6:07 am

I had my appointment yesterday morning to get the results of my CT scan. It was confirmed that the cancer has progressed. I am devastated yet again as one would be.

I was really hoping for a stable scan so that I could pursue a consult with a HIPEC surgeon. I should’ve done it sooner. I guess it still wouldn’t hurt to try though, so If anyone has any recommendations on who would be an experienced HIPEC surgeon, I’m all ears. I am willing to travel within the United States.

In a sense I really do not have measurable disease – there are no specific tumors that they can measure, but there are tumors on my peritoneal lining, and my right ovary – I actually have pictures of those from when my OBGYN had done a laparoscopy when I was diagnosed. My oncologist describes my cancer as a more fluid cancer because of the large amount of ascites that I have. My insides are stewing in what I like to call “cancer juice.” This results in thickening of my peritoneal lining and the pleural lining of my left lung and they are seeing increased thickening of these areas on my scans. Also when they look at my liver – there is what I can only describe as a ring within my liver where there appears to be two different densities. Again this is caused from the stewing in the “cancer juice.”

When I had my consult at Mayo, they were able to find a 4mm tumor in the mid transverse colon, yet all of the scans I have had locally do not mention this tumor.

My oncologist did speak with the oncologist that I saw at Mayo to come up with a new game plan. So as of this moment, going forward my treatment plan is to start on Erbitux next week. Then after seeing how I respond few infusions, I will be then admitted to the ICU to add Irinotecan for future infusions. The reason for this is to be closely monitored if I were to have another allergic reaction to it.
When I started chemo I was supposed to receive FOLFIRINOX, but when they ran the Irinotecan my tongue swelled up. They stopped the infusion, gave me Benedryl, and continued the infusion. My tongue swelled again, so then they completely stopped the Irinotecan, and the rest of my infusions I just received FOLFOX.

I’m NOT looking forward to the side effects that are sure to come. I’m also not looking forward to having to quit my job either, but at this point, I’d rather quit than get fired.

Best wishes to everyone!
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

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

Re: CT Results – Need HIPEC recommendations

Postby Maia » Fri Feb 24, 2017 8:23 am

Michelle, so sorry to hear. What about ADDING Avastin (bevacizumab) to Keytruda? The combo of anti PD-1/PD-L1 (Keytruda, Opdivo, atezo, durva, etc.) plus Avastin seems to pack a punch for MSI-H / Lynch. See the trial Stephen is on viewtopic.php?f=1&t=51990
and the recent news:

Atezolizumab/Bevacizumab Combo Attains 90% DCR in MSI-High mCRC
Published Online: Tuesday, Feb 07, 2017
- See more at: http://www.onclive.com/web-exclusives/a ... SQYED.dpuf

Sorry I don't have HIPEC recommendations. There is a trial you might want to keep an eye on (still not recruiting): Phase 1/2 Study to Investigate the Safety, Biologic and Anti-tumor Activity of ONCOS-102 in Combination With Durvalumab in Subjects With Advanced Peritoneal Malignancies (ColoRectal Cancer- Platinum-resistant Ovarian Cancer) https://clinicaltrials.gov/ct2/show/NCT02963831

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

Re: CT Results – Need HIPEC recommendations

Postby mike218 » Fri Feb 24, 2017 11:16 am

we thought I had Peritoneal mets -went to UMMC (Maryland) saw Dr Alexander--turned out to be residual colon tumor but we were very happy with him
I hope you find someone closer to home though-sick travel sucks

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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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: CT Results – Need HIPEC recommendations

Postby GrouseMan » Fri Feb 24, 2017 11:34 am

Its unfortunate that you seem to be allergic to Irrinotecan. Could it be a combination of it with Oxaliplatin and 5-FU perhaps from the Folfirinox combination therapy? For about 2 months my wife was on Folfiri and Avastin. This combination didn't help much, but her oncologist was doing a small trial to compare Irrinotecan, and Erbitux, with Irrinotecan, Erbitux and Avastin. Note - NO 5-FU this time. My wife found this to be an easy combination in terms of side effects - a piece of cake as she put it. We are pretty sure se was in the leg with Avastin. Of course she has always tolerated chemo very well compared to others experience. She believed actually that the 5-FU was responsible for most of her discomfort, when doing the Folfiri and Avastin treatment. This helped keep things stable for about 9 months until the Erbitux started to fail, as it always does. The EGFr pathway which Erbitux inhibits, tumors shunt into two very similar signaling pathways, that Erbitux doesn't inhibit. There are other EGFr inhibitors that do (Dacomitinib is one and a couple of new ones in trials right now that also target EGFr mutants and these other 2 pathways directly. I will have to look up their names for you if I can find the time and if your Oncologist is willing to refer you into a trial for try them. You may have to travel for a trial to gain access to them except for Dacomitinib. If it were me I would do straight to Dacomitinib instead of Erbitux (My personal opinion since I worked on the development of this one and think it a very superior drug in people that have not yet used an EGFr inhibitor yet). I wish we had done so, but the there are no trials available with Irrintotecan, Dacomitinib and Avastin. So no coverage via insurance, or a trial to pick up the costs.

As Maia has indicated MSI-H tumors respond well to Avastin and one of the PD-1/PD-L1 inhibitors. But it looks like Keytruda has failed for you now. Maybe one of the others in combination as Maia suggested? Unfortunately my wife's tumors as far as we know are MSS (no biopsy as yet possible for the mets). She hope to start a trial next week with a new more advanced single agent drug similar to Avastin that also inhibits the formation of Cancer Stem Cells, which I hope will eventually be a replacement for Avastin in other combination therapies.

I think you have a some options available to you yet. Don't despair! Keep advocating for yourself.

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

Leighann Sturgin
Posts: 54
Joined: Sat Jan 25, 2014 9:35 am

Re: CT Results – Need HIPEC recommendations

Postby Leighann Sturgin » Fri Feb 24, 2017 7:01 pm

Both of my HIPEC surgeries were done by Dr. Herb Zeh in Pittsburgh, PA at UMPC.
F 44 yo
3/04 dxd colon cancer stage IV (Lynch)
4/04 colectomy
chemo
8/04 hyserectomy
1/05 debulking, HIPEC, ileostomy
short bowel syndrome- TPN and IV fluid dependent
1/06 HIPEC
07 splenectomy
Vaccine trail
12 right nephrectomy
NED since 07
2015 Colondar 2.0 Miss May
2016 Kidney disease
2016 permanent left nephrostomy


The Kimberly Fund Director

michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Re: CT Results – Need HIPEC recommendations

Postby michellecairn » Sun Feb 26, 2017 11:29 am

Maia,
Thank you very much for your recommendations. I will definitely keep my eye on the trial.
As far as adding the Avastian to the Keytruda – I’m not sure that would make a difference since my oncologist feels that the Keytruda possibly stopped working around October. When I had my consult at Mayo they did a CEA which was elevated, and my oncologist ran it again about a week later. It was still elevated, but not as high as the result from Mayo. I realize this more than likely was due to different tests. My CEA increased even more with this last round of testing. Actually my CEA is the highest it has ever been now.
When I was on FOLFOX I did have 4 rounds with Avastian. I guess at the moment I’m a bit hesitant to go back to the Avastian only for the fact that I want to obtain a surgical consult, and if surgery is possible then I don’t want to have to wait for the Avastian to get out of my system.

Grouseman,
It is possible that I had the allergic reaction to the combination of drugs in FOLFIRINOX. My oncologist has mentioned this as well. That’s why she wants to re-introduce the Irinotecan, but in a hospital setting – just in case.
I feel I tolerated the FOLFOX pretty good. Granted I had a bit of fatigue, but I was also going in 3-5 times a week for fluids with Aloxi and Dexamethasone to try to help combat that. Although looking back – I really did nothing but sit at home, but the fluid combination really helped with not having much nausea or vomiting.
I will call my oncologist tomorrow and ask about the Dacomitinib to see what her opinion is.
I hope your wife is able to get into the trial. I will keep my fingers crossed for her.

Mike218 and Nobuttgirl,
Thank you for telling me about Dr. Alexander and Dr. Zeh. I have already started researching both of them. Whenever I’ve searched HIPEC in the past – not many doctors’ names come up – so I really appreciate it.

Best wishes to everyone!
Michelle
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

User avatar
Cowgirl918
Posts: 326
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: CT Results – Need HIPEC recommendations

Postby Cowgirl918 » Sun Feb 26, 2017 10:19 pm

Indiana University Medical Center in Indianapolis did my friend's HIPEC. She had mucinous cancer of colon and appendix. She is NED 5 years later. They were amazing. I will pull name of surgeon tomorrow but you call directly and ask for consult.
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery

Jmjen76
Posts: 1
Joined: Wed Mar 01, 2017 12:15 am

Re: CT Results – Need HIPEC recommendations

Postby Jmjen76 » Wed Mar 01, 2017 12:18 am

Dr. Turaga at University of Chicago.

Best of luck to you!


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