HAI pump criteria

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Kbee816
Posts: 8
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: 650
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 10 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: 139
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: 8
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: 338
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

Butt
Posts: 10
Joined: Mon Mar 11, 2019 10:48 pm

Re: HAI pump criteria

Postby Butt » Sun Mar 24, 2019 3:21 pm

I also had an ovarian met that was removed and after that had s liver surgery and the pump. Dr. Mark Bloomston in FL is the man.

FightCRC
Posts: 27
Joined: Fri May 25, 2018 10:39 pm

Re: HAI pump criteria

Postby FightCRC » Sun Mar 24, 2019 4:19 pm

Kbee816 wrote: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.


I definitely believe this. The demand from patients to see Dr. Kemeny is intense. Perhaps the gatekeepers (if you will) are trying to winnow the cases down to the ones that have the highest probability of success. But it's hard as patients to be reduced to a diagnosis. I know, on paper, my wife's situation might have been considered too difficult to bother. Thankfully, though, we were able to see Dr. Kemeny in person. It's very likely that my wife's relatively young age, and her overall good physical condition otherwise, may have tipped the scales in her favor to receive treatment. So I always encourage patients who are in good shape to consult in person whenever possible, even if they've been turned away initally based on medical records. That has to help doctors determine if you can physically tolerate the treatment.

As has been noted here frequently, do not expect much face time with Dr. Kemeny once you become a patient. But all really all that matters now, is that you can become a patient. Wish you all the luck!

User avatar
juliej
Posts: 2952
Joined: Thu Aug 05, 2010 12:59 pm

Re: HAI pump criteria

Postby juliej » Wed Mar 27, 2019 5:05 pm

One more tip: try getting a referral from your surgeon or oncologist. The referrals go straight to Dr. Kemeny so she'll read about your case. Have the referring doc mention that the ovarian mets have been dealt with and the only concern is the liver mets. Also, ask him to mention that you are in good health overall and might be a good candidate for the pump.

Technically speaking, Dr. K only takes patients with liver mets. However, in real life, she takes whomever she thinks she can help. I had liver and lung mets and she took me. My friend Eric had lung mets but no liver mets and she took him. So don't give up!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 2/1/2019, CEA<1

cartech78
Posts: 59
Joined: Thu Oct 25, 2018 6:22 pm

Re: HAI pump criteria

Postby cartech78 » Thu Mar 28, 2019 12:42 pm

There is a doctor named Paul Wright that does HAI pumps at spectrum health in Grand Rapids Michigan. You can try him.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

Butt
Posts: 10
Joined: Mon Mar 11, 2019 10:48 pm

Re: HAI pump criteria

Postby Butt » Tue Apr 02, 2019 9:12 pm

Mark Bloomston in Fort Myers, FL does liver resection and the pump. Awesome guy! Trained up North and internationally recognized.

LB10
Posts: 107
Joined: Tue Mar 17, 2015 5:25 pm

Re: HAI pump criteria

Postby LB10 » Fri Apr 05, 2019 8:57 pm

Hello all
Does anyone know if Dr. Kemeny will treat someone with liver mets from gastric cancer? I was diagnosed with stage 3 rectal cancer in 2014 and then a new primary of gastric cancer last August. I just found out that I now have liver metastasis. I haven’t seen my oncologist yet to make a plan. My appointment is Tuesday. I’m just trying to gather some information. Thank you.


LB
Stage III Rectal cancer
Dx 3/14
4/14-7/14 8 rounds Folfox
8/14-9/14 Radiation/Xeloda
1/15 APR colostomy
46 yo wife & mom

Kbee816
Posts: 8
Joined: Mon Mar 11, 2019 6:05 pm
Facebook Username: Karen.wayt

Re: HAI pump criteria

Postby Kbee816 » Mon Apr 08, 2019 1:56 pm

Thanks for the help,all! Seeing Dr K in a week and a half!! She agreed after finally being presented with my actual case. Excited/nervous for what this appointment means...
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.

Kbee816
Posts: 8
Joined: Mon Mar 11, 2019 6:05 pm
Facebook Username: Karen.wayt

Re: HAI pump criteria

Postby Kbee816 » Mon Apr 08, 2019 1:59 pm

Butt wrote:I also had an ovarian met that was removed and after that had s liver surgery and the pump. Dr. Mark Bloomston in FL is the man.


How are you doing in your treatment with HAI pump? We are having to make a decision whether to go that route or stay on maintenance chemo and continuing to ablate tumors that are growing resistant. Not sure what to do!!
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.

Butt
Posts: 10
Joined: Mon Mar 11, 2019 10:48 pm

Re: HAI pump criteria

Postby Butt » Mon Apr 08, 2019 8:35 pm

Pump is not having any side effects like a systemic chemo does. No fatigue or anything.

Kbee816
Posts: 8
Joined: Mon Mar 11, 2019 6:05 pm
Facebook Username: Karen.wayt

Re: HAI pump criteria

Postby Kbee816 » Mon Apr 08, 2019 9:02 pm

Butt wrote:Pump is not having any side effects like a systemic chemo does. No fatigue or anything.


That’s great! CAn I ask what limitations you have in terms of activity with the pump? I’m a fitness instructor/yoga teacher and am concerned that I won’t be able to keep my job if I get the HAI pump.
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.


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