HAI pump criteria

Please feel free to read, share your thoughts, your stories and connect with others!
Kbee816
Posts: 5
Joined: Mon Mar 11, 2019 6:05 pm
Facebook Username: Karen.wayt

HAI pump criteria

Postby Kbee816 » Mon Mar 11, 2019 9:12 pm

Has anyone had HAI pump treatment/surgery anywhere besides Dr Kemeny at MSK? Her nurse said I’m not a candidate because I had ovarian mets a year ago (removed with surgery). Have had only liver mets for a year now. I am hoping to find a surgeon/oncologist willing to be aggressive with my treatment, but not sure where to look next. Anyone have a suggestion or recommendation?
2/17-diagnosed stage IV Mets to liver
2/17-colon resection
3/17-Folfox 8 rounds
8/17-liver resection and ablation
9/17-Folfox 4 rounds
12/17-CT showed mets to ovaries and new mets on liver
12/17-ovaries removed
3/18-clinical trial-pembro and cetuximab
3/19-tumors showing resistance.

mariane
Posts: 649
Joined: Sun Sep 13, 2015 6:16 pm

Re: HAI pump criteria

Postby mariane » Mon Mar 11, 2019 10:32 pm

My husband tried to make an appointment for me with Dr. Kemeny back in 2015. The first nurse refused him because I didn't have all the necessary scans. I had only abdominal and pelvis scans and resonance, no chest. I was recovering from the colon surgery in the hospital in Europe at that time. My husband called a few days later again. This time a very nice nurse answered and showed all my scans to Dr. Kemeny herself. Dr Kemeny wanted to see me immediately. A week later I was flying to NY. Some nurses are more open than others. I think you may try to call once more and ask nurses to show your medical documentation to Dr. Kemeny herself. On my first appointment I asked Dr. Kemeny whether she will refuse to treat me if my chest scans show extra hepatic disease. She promised to help me no matter what my scans showed. I know a few patients of dr. Kemeny who had ovarian and hepatic mets and they got the pump.
Good luck!
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

hiker
Posts: 137
Joined: Thu Aug 09, 2018 10:15 am

Re: HAI pump criteria

Postby hiker » Tue Mar 12, 2019 7:12 am

Hey Kbee816,

I second what mariane recommended - call back a second time, or a third if needed. Regardless of what some think of Dr. Kemeny, she is actually a very kind, caring person (she's just all business when it comes to treating cancer which I love). Some people say they've never seen her smile. I've had her laughing and at one point I swear she started tearing up when I was telling her how much my kids appreciated her saving their daddy.

I wish you the best.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Kbee816
Posts: 5
Joined: Mon Mar 11, 2019 6:05 pm
Facebook Username: Karen.wayt

Re: HAI pump criteria

Postby Kbee816 » Tue Mar 12, 2019 7:39 am

Thanks for the encouragement to keep pushing! I will call again today and have my husband start working on it, too. The nurse I talked to said she’d pass along my records to “the team” just to have them double check if it’s a possibility, but she said she was pretty certain their answer would be no. Not sure if “team” means Dr Kemeny herself would look them over? I wish they would let me have an appointment with her in person so she could decide. My local oncologist said drs are sometimes more willing to treat/do surgery if they meet you in person and see that you are in good health.
2/17-diagnosed stage IV Mets to liver
2/17-colon resection
3/17-Folfox 8 rounds
8/17-liver resection and ablation
9/17-Folfox 4 rounds
12/17-CT showed mets to ovaries and new mets on liver
12/17-ovaries removed
3/18-clinical trial-pembro and cetuximab
3/19-tumors showing resistance.

heiders33
Posts: 336
Joined: Sat Nov 04, 2017 11:08 am

Re: HAI pump criteria

Postby heiders33 » Tue Mar 12, 2019 5:19 pm

I never trust that the nurse has the final answer. Definitely try to get an answer from Dr K herself.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: patrickt and 36 guests