To all HEPATIC pump users - Dr. Kemeny

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mymom
Posts: 1249
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

To all HEPATIC pump users - Dr. Kemeny

Postby mymom » Fri Apr 20, 2018 7:27 pm

This has been communicated to me by a fellow Hepatic Pump patient of Dr. Kemeny. As you know, my mother uses the hepatic pump:

"It has been brought to our attention from Dr. Kemeny that Johnson
&Johnson (makers of the Codman Hepatic Pump) have decided to discontinue
making the pump. MSK has bought up the last ones -about 100 of them.
It seems absurd because the new findings are that those that used the
pump seem to have a higher survival rate than those that just had
systemic chemo. For those that use the pump, Please take a minute and jot them a quick memo stating
how you feel about this and to have them reconsider their decision."

See below for contact info.

Many of those that use the pump strongly feel that it has increased the survival rate. This pump can help thousands in the future. I do not know any further information than this. I hope the patent is picked up elsewhere.

CONTACT:

William Hait
Global Head of Johnson &Johnson Innovation - JJDC, Inc.
410 George Street
New Brunswick, NJ 08901
Telephone: 732-524-3218 Ext. 3218


Johnson & Johnson Innovation, Janssen Business Development
1 Johnson & Johnson Plaza
New Brunswick, NJ 08901
Telephone: 609-730-4532
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16 NED

radnyc
Posts: 299
Joined: Tue Apr 06, 2010 6:32 pm

Re: To all HEPATIC pump users - Dr. Kemeny

Postby radnyc » Sat Apr 21, 2018 10:47 am

That’s unfortunate, I had the pump five years before having it removed. I’m certain it aided in my being NED. Probably not profitable enough for J&J. This technology is kind of old and cheap by today’s standards. Also the chemo used with it, FUDR is not expensive, it’s been around for decades. The cost comes in the implantation and maintenance of the treatment which is borne by the patients and their insurance. It’s much more profitable to use the newer chemotherapeutic drugs, which can run into the hundreds of thousands a year for a single drug. MSKCC is a well funded institution they should take over the manufacturing of the pump. They’re pretty much the only ones in the country that use it, and very successfully at that.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

mariane
Posts: 624
Joined: Sun Sep 13, 2015 6:16 pm

Re: To all HEPATIC pump users - Dr. Kemeny

Postby mariane » Tue Apr 24, 2018 10:07 pm

Thank you very much for this message.
I will certainly send a letter/email to J&J. Such a bad news for new patients.
I have recently had another completely clear scan and good labs. I am 2 years past resection, almost 3 years after diagnosis and my check ups are becoming less frequent. I was given less than 2 years if I responded to chemo. I am really doing good and enjoying every day.
J&J should give others the same chance I received in 2015.
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!

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juliej
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Joined: Thu Aug 05, 2010 12:59 pm

Re: To all HEPATIC pump users - Dr. Kemeny

Postby juliej » Wed Apr 25, 2018 7:01 pm

This is very bad news, especially since medical interest in the pump has started to rebound. I know of one large teaching hospital on the west coast that just started an HAI pump program. They sent physicians and surgeons to MSKCC for training. What are they supposed to do now?

Even my liver surgeon, Dr. D'Angelica, implored Cerenovus (that's who makes the pump, they are a subsidiary of Johnson & Johnson) to continue making it for "ethical reasons" if nothing else. But nope. They declined.

The decision seems to be based on the fact that some suppliers of pieces of the pump have exited the business. Cerenovus doesn't want to find new suppliers for a low volume product (they sell about 300 pumps a year in the US). The pumps cost $7,000 to $11,000 so it isn't a huge profit maker for them, I guess.

But how much is a life worth?

This thing saves lives. It saved my life. We have to convince someone to keep making it.

Here is a good article about the decision if you want to read more:

https://www.nytimes.com/2018/04/25/health/liver-pump-cancer-medical-device.html

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 7/13/2018, CEA<1

njf
Posts: 12
Joined: Mon Jan 08, 2018 9:32 pm

Re: To all HEPATIC pump users - Dr. Kemeny

Postby njf » Wed Apr 25, 2018 8:57 pm

I am so scared now. My mom is scheduled to meet with two surgeons at MSK this weekend to discuss getting the pump. This is her BEST chance and now it may not even be available to her. I just don't even know what to think.

ranger
Posts: 334
Joined: Sat Nov 14, 2009 2:02 pm
Facebook Username: cancerIsSOfunny
Contact:

Re: To all HEPATIC pump users - Dr. Kemeny

Postby ranger » Wed Apr 25, 2018 9:57 pm

Today the bad news was reported in the New York Times:
A Lifesaving Pump for Cancer Patients Is Being Phased Out https://nyti.ms/2KhnJIu
colon resection 3/09
liver resection and takedown 8/09
11 rounds of folfax, avastin. plus AM655 or placebo, completed jan 2010
hernia repair 3/11
http://cancerissofunny.blogspot.com/
https://m.facebook.com/Cancer-is-SO-fun ... 100303900/
@cancerissofunny
age 67, never thought I'd make it. happy.
NED a long time.
Essential Thrombocytosis, monitoring
still here.

radnyc
Posts: 299
Joined: Tue Apr 06, 2010 6:32 pm

Re: To all HEPATIC pump users - Dr. Kemeny

Postby radnyc » Thu Apr 26, 2018 5:23 am

WOW! I’m going to post the Kemeny nyt Times article separate.
As I, and many others on here have said they in the past, cancer treatment has to do ONLY about profit for the industry that services it. From the article:
“Mindy Tinsley, a spokeswoman for Cerenovus, said demand was “very low,” with sales of about 300 pumps a year in the United States.” In other words they are not making enough money to bother!
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

rp1954
Posts: 1379
Joined: Mon Jun 13, 2011 1:13 am

Re: To all HEPATIC pump users - Dr. Kemeny

Postby rp1954 » Thu Apr 26, 2018 9:49 am

I would think Plan A is to have a fund raiser for seed money to get MSKC to get an additional production run out of J&J, say another 1000 - 10,000 units.

Plan B is whether J&J could spin it off or the old employees could do it.

Otherwise start looking at the other HAI pumps.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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ktwmn
Posts: 349
Joined: Tue Aug 02, 2011 9:41 am

Re: To all HEPATIC pump users - Dr. Kemeny

Postby ktwmn » Thu Apr 26, 2018 10:05 am

Wouldn't it be innovative of J&J to update the technology to a faster, smarter and lighter-weight model? (That goes for other chemo drug paraphernalia, including the clunky ca. 1990 5FU device). Clearly, patients--their survival and their comfort --are not a priority!
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

Kathy
Posts: 113
Joined: Sat Mar 14, 2009 8:28 pm
Location: New Jersey

Re: To all HEPATIC pump users - Dr. Kemeny

Postby Kathy » Thu Apr 26, 2018 10:49 am

I received my hai pump in November 2008. There is no doubt in my mind that I would not be here without Dr. Kemeny and the pump. Statistically,if I remember correctly, the five year survival rate was 35% in 2008. Now I believe it is 78% at five years. The pump is proven, but the lives of the patients alive and kicking are not enough for the drug companies. I just had my scan and check up and I do not have to follow up for a year! Nine and a half years NED! Please write to J&J AND JUST maybe others can be given the same chance that we have received. Every September,there is a fund raising walk for Dr. Kennedy's research and we have a wonderful team of survivors that have it, or had the pump who get to celebrate what good cancer research can do. Too bad profits are more important than lives.
Stage 1- resection 9/ 05
Recurrence-2/ 2008 chemo/radiation 5 FU/oxi
APR surgery 7/ 2008- Found spread to liver-Margins not clean
chemo between surgeries
Liver resection and HAI pump-11/ 08 Chemo 6 months
NED 11/08

NED since 11/2008

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: To all HEPATIC pump users - Dr. Kemeny

Postby NHMike » Thu Apr 26, 2018 11:42 am

ktwmn wrote:Wouldn't it be innovative of J&J to update the technology to a faster, smarter and lighter-weight model? (That goes for other chemo drug paraphernalia, including the clunky ca. 1990 5FU device). Clearly, patients--their survival and their comfort --are not a priority!


If they're selling 300 at $11K each in the US, then that's only $3.3 million a year. They indicated that they are having problems sourcing the parts for the pump too. A redesign would be great. They could probably make something lighter and more efficient and smaller with materials and process today. But they'd have to spend on R&D and I don't know whether or not they would need FDA approval which could be expensive. It seems that the HAI was just expanding to more hospitals when this hit. Perhaps that would have increased demand to the level where they could make a business at it.

Here's a chart of JNJ: http://stockcharts.com/h-sc/ui?s=jnj&p= ... 6428891677 and it's not looking great.

I'd love to see someone with the skills to design something like this just do it as a side-project and find someone to test and make it.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

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juliej
Posts: 2859
Joined: Thu Aug 05, 2010 12:59 pm

Re: To all HEPATIC pump users - Dr. Kemeny

Postby juliej » Thu Apr 26, 2018 5:07 pm

Agree with the concept of redesigning it, but that would call for FDA approval of the new design, which would take years. Also, if the parts are just more expensive to make and that's why they're harder to source, then just up the price for gods sake, but don't leave patients hanging!

My feeling is it's a business decision for them - difficulty of sourcing parts for pump plus low sales volume. They closed a similar business line - insulin pumps - 7 months ago (October, 2017) due to increased competition. Medtronic took over the patient load so there wasn't an issue there.

Interestingly, though, Medtronic is the one mentioned in the NY Times article. It makes a similar pump but it's only approved for the spine, not the liver. It seems to me like Medtronic could take over the HAI pump market too, like it did with the former J&J insulin pumps. Maybe MSK could use their considerable influence to persuade J&J to let Medtronic make the pump (with J&J maintaining the patent). I can dream, right?

Also, there is currently an application for a patent for "hepatic arterial infusion of car-t cells" - which is pretty interesting! Perhaps that company will see this as an opportunity to acquire the pump. But my biggest hope is Medtronic since they're already in the pump business.

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 7/13/2018, CEA<1

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ktwmn
Posts: 349
Joined: Tue Aug 02, 2011 9:41 am

Re: To all HEPATIC pump users - Dr. Kemeny

Postby ktwmn » Fri Apr 27, 2018 7:02 pm

From what I gather from the FB group, Codman is out but Medtronic is the leading supplier that will be picking up the contracts for HAI pumps. This from a patient of Dr. DeMatteo at Penn.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin


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