Dr. Kemeny, NYT Article on the demise of the HAI pump

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radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Dr. Kemeny, NYT Article on the demise of the HAI pump

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

https://mobile.nytimes.com/2018/04/25/h ... ctionfront

I’m reposting my response here:
As I, and many others on here have said 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!
Last edited by radnyc on Tue May 01, 2018 5:19 pm, edited 1 time in total.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
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 2011
HAI Pump removed Dec 2015

risto
Posts: 54
Joined: Wed Jan 06, 2016 2:28 am
Location: USA

Re: Dr. Kemeny, NYT Article on the demise of the HAI pump

Postby risto » Thu Apr 26, 2018 8:25 pm

I am not seeing here anything about profit. Where do you see that? It says “Unfortunately, some of the suppliers that provide the materials, such as titanium rods required for production of these pumps, have elected to exit the business or have found that the required materials are no longer available,”
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Dr. Kemeny, NYT Article on the demise of the HAI pump

Postby mpbser » Tue May 01, 2018 5:45 am

Oh wow, that is unfortunate news. Hopefully the company that makes one that works on the spine picks up the mantle.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Dr. Kemeny, NYT Article on the demise of the HAI pump

Postby MissMolly » Tue May 01, 2018 10:17 am

Medical treatments and medical interventions that serve a low critical mass of needing patients are oft not profitable enough for health care companies to bring to market or sustain ongoing sourcing, production and design upgrade costs. It is a sad reality that people with rare conditions or low occurrence conditions face.

Most people are aware of new technology advances for individuals with diabetes. Real-time portable insulin pumps are now a reality for diabetes management, doing away with her need for frequent daily finger prick blood testing and insulin injections.

I have Addison’s disease, which is failure of the adrenal glands. Cortisol, produced by the adrenal glands, is a life-essential hormone. Addison’s is a rare condition, with an incidence of 1 per million people. Medical designers have created a prototype cortisol pump that will allow for real-time cortisol infusion for individuals with Addison’s and secondary adrenal insufficiency. The problem is a low market of patients and high start up costs associated with bringing the pump to market and educating endocrinologists and surgeons in its placement and use. There are only a handful of people in the United States using the cortisol pump. I am trying to gain access to a real-time cortisol infusion pump.

The last new medication introduced to treat Addison’s was in 1950. For those of us with Addison’s, the options for life sustaining treatment are limited and few.

My experience with medical care has been disappointing at best. My quality of life continues a downhill spiral despite optimal insurance and high out of pocket expenses. The reality of living with chronic illness is that it is expensive with an uncertain endpoint.

If you have to have a medical condition or illness, it is best to have a condition that has broad public recognition and that afflicts a large cohort group in order to have resources (financial capital, research and development, marketing) that bring about advances in active treatment and long term maintenance.

Good health is a gift that should never be taken for granted, as I am sure that everyone here can personally attest to.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Dr. Kemeny, NYT Article on the demise of the HAI pump

Postby NHMike » Tue May 01, 2018 12:16 pm

Well said.

I think about printer technology and building parts with just design work but the learning curve to using those things is steep.

Yet we are building medical parts with this technology.
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; 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, 2/12 1.2
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
2/19: Clean CT


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