HAI pump without Dr. K at MSK

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Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

HAI pump without Dr. K at MSK

Postby Spazzyjanet » Mon Nov 12, 2018 5:32 pm

Every time we get a new test or talk to a new doctor the news gets worse. I circled back to speak with our local surgeon and he says that with the latest MRI my 6 mets are now about 11, certainly not something that he could deal with in one surgery. Probably multiple. His personal experience with metastasis similar to mine is life expectancy from 2-8 years. Never anyone loner.

When I asked about the HAI pump available at OSU, he expressed doubt over that having a higher degree of success if monitored by anyone other than Dr. K at MSK.

What is your experience with this at other hospitals and centers? The figures I heard by the surgeon at OSU were possibly back to a 50 percent survival at 5 years, but chances of making it long term (more than 10 years) were pretty small.

All of this is independent of the possibility of peritoneal spread.

I've been told not to look too far ahead, but reading stories on here give me hope still of long-term life. Is that false hope?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: HAI pump without Dr. K at MSK

Postby Punky44 » Mon Nov 12, 2018 6:37 pm

I am so sorry you keep getting discouraging news. I really think you should look into the Dr K everyone keeps talking about. You are worth the very best and there is always hope, especially with the very best.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: HAI pump without Dr. K at MSK

Postby teri3 » Mon Nov 12, 2018 7:55 pm

I'd go with Dr. K just because as just as punky44 says you deserve the best. With that being said OSU is doing some great things. I've been going there and have had great luck.with them but I have lung mets.
Good luck
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: HAI pump without Dr. K at MSK

Postby ginabeewell » Mon Nov 12, 2018 8:13 pm

Have you ever been at a restaurant and asked about the fish special and had the waiter talk up an alternate dish, thereby alerting you to the fact that the fish there is not good?

I don't know if Dr K is the ONLY doctor who can oversee the pump, but your doctor's response suggests HE is not confident he knows how to do it.

There is a separate thread where I posted a link to all the places that offer the pump. If you don't want to go all the way to NY, maybe there is someplace else local like Cleveland Clinic that has more experience?
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: HAI pump without Dr. K at MSK

Postby Spazzyjanet » Mon Nov 12, 2018 8:41 pm

To be fair, the surgeon I am referring to is local and can't offer me the pump. He was casting aspersions on the likelihood of my success with the second opinion surgeon at OSU.

My husband is worn down and doesn't want to get an opinion from another doctor.and wants to go with the James and stick with it. I have two chemo cycles under my belt and at most would get to 6 before a surgical option to do something (end of December). Is that even enough time to get even get into another center?

It would really help to hear about success with the pump without having to go to MSK right now, but I'll take any honest feedback. We did like the surgeon at the James very much, but we don't know what their personal success with this is. It is going to take a lot to convince hubby to invest in a 3rd opinion vs. a plan at this.point.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: HAI pump without Dr. K at MSK

Postby ginabeewell » Mon Nov 12, 2018 10:41 pm

Check this link:

http://dev.haipump.com/haipumpfinder/

And then I would do a search of this forum and Google for HAI + OSU (or any of the other institutions listed).

I think I read only 300 pumps a year are used and more than 200 of them are at MSK which is why success stories outside of there aren't plentiful. But I feel like I read about someone who beat the odds who got the treatment in Grand Rapids, so it isn't impossible.

Read Cartech78's post below - he seemed to get an appt at MSK in a very quick window. And you don't have to stop your current plan to explore a redirect.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: HAI pump without Dr. K at MSK

Postby ginabeewell » Mon Nov 12, 2018 10:52 pm

I should add: I'm a 45 year old mom of two and a stepmom of two more, so I totally get your quandary and your husband's desire to just start.

I started FOLFOX + Vectibix, did my 4th round today. But I am asking my doc to do a scan now vs after #5 and refer me to MSK. At this point I think I will opt for the HAI if offered to me unless my response to systemic chemo is so off the hook that we look close to resection. But I had an 11 mm tumor and tons of other mets, so that feels unlikely.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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

Re: HAI pump without Dr. K at MSK

Postby radnyc » Mon Nov 12, 2018 11:31 pm

It seems that unless you’re able to basically move to New York to be under the care of kemeny, the pump might not be an option for you. There’s however another option that has been shown to have similar survival rate as the pump, LIVER TRANSPLANTATION. And, they’ve done it at Cleveland Clinic. Read this and research, you never know.

https://www.google.com/amp/s/consultqd. ... e-u-s/amp/
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

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ginabeewell
Posts: 565
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Re: HAI pump without Dr. K at MSK

Postby ginabeewell » Mon Nov 12, 2018 11:55 pm

I went to Cleveland Clinic for my 3rd opinion to ask about liver transplantation. They weren't exactly selling it as an option. When I asked about it, they said it was like talking to a college counselor when you were starting elementary school. Like, they would want to try everything else before they consider that.

My current doctor warned that you would still need chemo prior to a transplant. And a transplant is risky, because you may not be able to attack with chemo in the event of a recurrence, you need to give the liver ample time to heal.

In other words, an option, but probably not something to pursue immediately as opposed to HAI which you would do earlier in the process.

Also Cartech told me that Kemeny was willing to oversee chemo administration at Northwestern; guessing she would do the same with OSU.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: HAI pump without Dr. K at MSK

Postby cartech78 » Tue Nov 13, 2018 1:56 am

ginabeewell wrote:I went to Cleveland Clinic for my 3rd opinion to ask about liver transplantation. They weren't exactly selling it as an option. When I asked about it, they said it was like talking to a college counselor when you were starting elementary school. Like, they would want to try everything else before they consider that.

My current doctor warned that you would still need chemo prior to a transplant. And a transplant is risky, because you may not be able to attack with chemo in the event of a recurrence, you need to give the liver ample time to heal.

In other words, an option, but probably not something to pursue immediately as opposed to HAI which you would do earlier in the process.

Also Cartech told me that Kemeny was willing to oversee chemo administration at Northwestern; guessing she would do the same with OSU.

What Gina said is true! I went to MSk cause they were the pioneers and seem to have the pump dialed in. I met with Kemeny and her team and was very impressed. More pump programs are popping up all over the place by the day it seems. Duke was shaddowing her the day we met cause they are making a pump program. The facts I have found about the pump are these: most programs are using the pump with the algorithm Kemeny developed. More people seem to choose MSK because of the surgerons there. They have installed the most pumps and even they have to redo them sometimes. Some people can not handle the pump and it has the potential to destroy your liver, namely the bile ducts. I know of two and have spoken with them about this. One got a liver transplant and the other is on the list.
The pump gets somewhere between 40 to 45% percent to resection. The pump reduces the risk of reaccuranse from somewhere in the 70% range to the 50% range. These were mostly answers i got from Kemeny her self and from other paitens on other groups. Kemeny did ask if I could travel to NorthWestern for maintenance of the pump every two weeks but i would have to see her every 4 weeks. The Northwestern thing was talked about but no guarantees have been made yet. I hooe if i get this pump it can happen. I would suggest anyone interested in this pump join two specific Facebook groups. One is Liver mets from CRC the other is in the group which is part of Colontown called the HAI pump people. There you will see both sides of the pump. The good and the bad. You can also learn about other treatments that may help you if the pump is not an option. Finally, as much as we need other hospitals to get good with these pumps (and we really do) for now MSK seems to be the best and installing and using them. Thats my opinion personally. As a caregiver of his wife who has the pump told me,what makes MSKCC the best at it is Kemeny has the feel mastered. She knows when to step on the gas and slam on the brakes. Also there surgeons have the most experience in installing them. I urge you to join those other groups as they will help you make the decision that is right for you in how and with whom to proceed. I am obviously heavily favored of MSK so dont use me alone because that doesn’t make it work for you- obviously. There are people who had this pump done at other locations in those groups. I know i was long winded here but i hope it helps you even if just a little. GodBless.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: HAI pump without Dr. K at MSK

Postby stu » Tue Nov 13, 2018 3:03 am

Sometimes there is no substitute for experience . This type of medicine is both an art and a science. She is artful at her science .

Remember the number of Mets matters less than your response to treatment . My mum has seen off over ten Mets in her liver . It took two years and her liver has been clear for seven and a half years . She saw her oncologist yesterday and she is doing great, winging her way round to ten years . We sought out the most experienced people to help her .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: HAI pump without Dr. K at MSK

Postby Spazzyjanet » Tue Nov 13, 2018 6:15 am

It doesn't sound likely that I will be able to get my treatment managed locally in Ohio by MSK. I think I am going to have to call the nurse practitioner and see whether I can get information on who they have on staff that manages the chemo aspect and whether it is influenced by an algorithm or someone who has worked with her.

I'm still hoping that someone with success outside MSK can chime in. I put in a request to join the CRC liver mets group. Maybe there will be some answers there as well.

I think that yesterday was the day that my hope finally broke.

All of the "you are thinking too far ahead" "your chances of surviving long-term" and "I've never personally seen anyone live past 8 years" hit me about the same time I was reading the MRI report.

Today I have to figure out where I go from here from a psychological standpoint- especially with peritoneal sword of Damacles continually swaying above me. Every new test seems to bring more bad news.

Any hope or suggestions on how to keep it together would help. My 8-year old caught me crying uncontrollably last night and I just can't keep doing that to him.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: HAI pump without Dr. K at MSK

Postby ginabeewell » Tue Nov 13, 2018 10:42 am

I can understand how you feel. I was there a few weeks ago. I finally ended up switching oncologists, because I didn't feel like it was my job to give my doctor a pep talk that I planned to stay alive. The new onc I am working with is not a colorectal specialist but her attitude and approach has made a world of difference (and I do have a specialist who "consults" on my team).

My acupuncturist referred me to a therapist who has been great. One of the first topics we covered was the difference between optimism and denial. I want to be realistic about what could happen, but focusing on that vs optimism isn't helping me. We got life insurance and will stuff out of the way the first few weeks so I know that's done and I can focus on healing.

Also the book Radical Remission has been an uplifting bible for me on how to approach all this.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: HAI pump without Dr. K at MSK

Postby cartech78 » Tue Nov 13, 2018 1:09 pm

When you join these groups Janet, you will find everyones onc has told them what your told you, mine included. These local oncologist treat all kinds of cancer in many different stages so they pretty much just regurgitate the same old stats to you regardless of current health and age. At MSKCC they take a different approach. If they think they can treat you it will be with a curative intent and it will be agressive. Also what about Cleveland clinic? You are in ohio right? My real name is Erich Horton. Once you get into those other groups on facebook let me know if there is any advice i can point you too. There are manygreat people in those groups. Also, Gina you should join as well.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: HAI pump without Dr. K at MSK

Postby Spazzyjanet » Tue Nov 13, 2018 4:02 pm

The Cleveland Clinic is an option. However it still isn't MSK. And I can tell you that my husband will not be on board with traveling to NYC from Ohio every two months. We only have so much time off work to spare.

I like the surgeon at the James so really the question is whether others outside MSK have had success. I am still not seeing anything and that doesn't exactly make me feel better :(
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.


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