HAI Pump Folks - Insight Appreciated

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junderhill
Posts: 8
Joined: Fri Feb 03, 2017 6:52 am
Facebook Username: Jeremy Underhill

HAI Pump Folks - Insight Appreciated

Postby junderhill » Thu Mar 16, 2017 2:33 pm

Alright HAI pump folks, I know you are plentiful on here as so many of you have recommended my wife see Dr. Kemeny @ Sloan. I'd love to hear your experience, specifically:

- Did you go through MSK or elsewhere? (both for pump install & chem admin)
- How long have you been undergoing targeted chemo?
- What drugs are you receiving?
- Systemic chemo simultaneously? If so, what cocktail?
- What kind of response have you seen?
- Have you experienced any bile duct scarring?
- Anything else I should know?

Thanks so much for your willingness to share. Your insight is invaluable!
Husband of wife with CRC
DX CC 2/1/17
2.5 cm Adenocarcinoma in sigmoid colon with 10+ liver mets, lungs clear
Stage IV, T4bN0M1a G2
MSS, KRAS & BRAF wild, possible BRCA2 mutation
CEA = 147 - 2/1/17
2/14/17 - Started FOLFOX + Avastin

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juliej
Posts: 2647
Joined: Thu Aug 05, 2010 12:59 pm

Re: HAI Pump Folks - Insight Appreciated

Postby juliej » Thu Mar 16, 2017 6:25 pm

Jeremy,

1. I had my HAI pump implanted at MSK and had FUDR in the pump along with systemic chemo (Irinotecan and Xeloda) at MSK following surgery.

2. Originally I had 14 months of chemo at my local cancer center before going to MSK for a second opinion. I had an additional 9 months of chemo at MSK.

3. I am currently NED so I am not receiving any chemo. However, I have had Xeloda, Oxaliplatin, Avastin, Irinotecan, and FUDR.

4. While I was receiving FUDR in my HAI pump, I was also taking Irinotecan for 3 months and then Xeloda for another 6 months.

5. Excellent response! :D My liver has been clear for 5 years now. I was diagnosed with tumors in every lobe of my liver, so this is truly amazing!

6. No bile duct scaring whatsoever. I did have very elevated Alk Phos following treatment. I took Milk Thistle on the advice of an Integrative Doctor and that brought my levels back down to normal, but it did take over a year for them to come down. All my liver counts are normal now.

7. The pump isn't obvious (it only shows up in my tightest workout clothes) and since the FUDR goes straight to the liver, there are almost no side effects. They only side effects I experienced were from the systemic chemo. However, the pump does set off the metal detector at airports so it's easier to go through the whole body scanner. I just tell them I have "an implant" and there's never been a problem. They give you a card to show TSA but I've never been asked for it.

The HAI pump is truly a life saver for many patients and no one is more experienced than Dr. Kemeny and MSK in HAI treatment. I would not be here now typing out these words if not for Dr. K and her team of brilliant docs at MSK.

Let me know if you have any questions!
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 2/20/2017, CEA<1

mariane
Posts: 485
Joined: Sun Sep 13, 2015 6:16 pm

Re: HAI Pump Folks - Insight Appreciated

Postby mariane » Thu Mar 16, 2017 9:21 pm

1- Did you go through MSK or elsewhere? (both for pump install & chem admin)
2- How long have you been undergoing targeted chemo?
3- What drugs are you receiving?
4- Systemic chemo simultaneously? If so, what cocktail?
5- What kind of response have you seen?
6- Have you experienced any bile duct scarring?
7- Anything else I should know?
1. I started FOLFIRINOX - systemic chemo in August 2015 at MSKCC. Dr Kemeny was the oncologist, who chose my chemo. I had 4 systemic treatments, got re- scanned, and had pump implanted in October 2015 with 1 met removal.
2. I had 3 FUDR treatments + 2xFOLFOX and 1xFOLFIRI - got 1 large met from my left lobe removed, than 3 more FUDR + 7xFOLFIRI- surgery- mets from right lobe removed. After surgery in May 2016, I had 5xFUDR and 10x5FU until October 2016
3. Currently I take only Ursodiol and Cimetidine, no chemo
4=2
5. I had 95% pathologic response after systremic chemo and 100% after FUDR. Clean scan in February 2017
6. No bile duct scarring until now, temporary liver enzymes increase in 12/2015, enzymes down after switching oxaliplatin with irinotecan, flushing pump with steroids 2x, adding ursodiol BID orally
7. Dr Kemeny knows more about colon cancer than anybody else. She has great experience with the pump, fantastic surgeons, knows more than anybody else about current treatments, there is nobody who has guts to refuse her. She can get surgery even for patients with disseminated cancer.

Good Luck!
mom of almost 8 years old twins, dx @ 40 with stage 4 upper rectal cancer with liver mets on 6/26/2015, CEA 140
8/2015 - beginning chemo: 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, 12xFUDR
4 surgeries complete pathological response
CEA<2 since 10/2015
NED since May 2016

Praise God for every day with my family!

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HopeForJesse
Posts: 203
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: HAI Pump Folks - Insight Appreciated

Postby HopeForJesse » Fri Mar 17, 2017 7:37 pm

junderhill wrote:Alright HAI pump folks, I know you are plentiful on here as so many of you have recommended my wife see Dr. Kemeny @ Sloan. I'd love to hear your experience, specifically:

- Did you go through MSK or elsewhere? (both for pump install & chem admin)
- How long have you been undergoing targeted chemo?
- What drugs are you receiving?
- Systemic chemo simultaneously? If so, what cocktail?
- What kind of response have you seen?
- Have you experienced any bile duct scarring?
- Anything else I should know?

Thanks so much for your willingness to share. Your insight is invaluable!



hello!

For my DH:
1- YES -MSK and Dr K for HAI pump! But systemic chemo continued locally just for travel convenience
2- 11 months of systemic chemo 2/2017 to 12/2017 and 5 months FUDR via pump 8/2017 to 12/2017
3 & 4 - no chemo currently - just Ursodiol capsule for liver -prior Avastin, 5FU, FOLFOX
5- NED as of 7/2017 post liver resection surgery and pump install - next scan 3/22/17
6- no scarring
7-keep the faith, stay strong and get to Dr K ASAP

Julie who replied above was my inspiration from when I first found ColonTalk and I had the pleasure of meeting Mariane at MSK.
Let us know any other questions as they come up and how things go.

Ps - see signature below - very similar with MSS, BRCA2, etc
Mary
DH DX 01/16 49 YO inoperable RC stage IV liver mets
MSS, mod dif adenocarcinoma, high grade dysplasia, TP53 APC,BRCA2
12/15 CEA 241, 4/16 CEA 22.3 >6 FOLFOX (2/16-4/16) 7/16 CEA 4.3 :D 8/10 5.3 11/17 1.8
LAR/ileo 5/17/16 Clear margins 1/29 nodes
HAI, reversal, liver (some wedge) resections (7) & ablations (3) 7/12/16
FUDR 8/10/16 FOLFOX resume 8/24 reaction to oxy -just 5FU 12/28/16 No more chemo :D
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

gfpiv
Posts: 144
Joined: Tue May 25, 2010 9:24 pm

Re: HAI Pump Folks - Insight Appreciated

Postby gfpiv » Fri Mar 17, 2017 8:43 pm

I went to MSK for the pump install (and colon primary resection), didn't have Dr K as my onc, but a colleague of hers who was fantastic (as were the colon and liver surgeons I had.) I was lucky to live less than 4 hours away, but knowing what I now know, I would have gladly taken a plane if I needed to. Good news is that draining the FUDR after 2 weeks and refilling with saline was not too difficult, so my local onc agreed to learn to do the drainage, and also bi-weekly systemic FOLFIRI at the same time.

At dx I had over half my liver cancerous, and 2 portal lymph nodes; no lung involvement. I didn't find out about HAI until halfway through 12 txs of FOLFIRI+Avastin, so MSK told me to wait to see them til all 12 were done (though it can be slightly more effective in many cases to do the pump as first-line.). Near-miraculous reduction from first line for me; over 90% reduction in size of mets and CEA - but still some live cancer.

MSK agreed to resect colon, 2 portal lymph nodes and install HAI. 2 weeks full of FUDR (basically 5-FU), then 2 weeks of saline drip in pump. Every 2 weeks I also did systemic chemo - FOLFIRI in my case - to address micro cancer cells in lymph nodes also.

About 1.5 years of HAI and FOLFIRI, all mets in liver calcified on scans, unsure if any cancer cells left, but liver numbers (AST, ALT and AlkPhos) got too high to continue treatment, and remain high to this day (though I can't tell any bad effects from it). I also had bile duct damage which caused skyrocketing liver #s including bilirubin. Another great MSK interventional radiology surgeon found the issue on a scan (my local onc couldn't), and she fixed it with a stent...which had to be replaced / cleaned out 2 more times...before they finally said that, due to my good cancer prognosis otherwise, they wanted to do a permanent biliary bypass procedure. That worked great, brought bilirubin down and stabilized other liver #s.

I stayed off chemo for another year or so, then my CEA started creeping up so we did a PET and found one pesky liver met was still active. It was burnt out with RFA at MSK, and I've been in the clear for the past 2 years since (knock on wood).

Lastly-
I have been absolutely blessed beyond belief to be here 7 years after getting a 2-yr life expectancy from my local onc. I am so very thankful, and I really wish everyone undergoing treatment would do even half as well as I did. But not everyone is a candidate for HAI, and even then, not everyone will have a dramatically positive response. That said, if it weren't for HAI, I firmly believe I wouldn't be here today. By making me aware of this treatment option, the folks on this board, in essence, saved my life. You are doing a great thing by taking "control" of your family's cancer challenge, and educating yourselves on your options.

So PLEASE(!!!) do not simply take as gospel the opinion you will hear from the vast majority of oncologists that are not personally experienced with HAI...because they will almost certainly "poo-poo" its potential effectiveness. I, and many others here, will testify that it can be life-changing under the right circumstances. Many times I look at the joyful smile of my 2-year old daughter and realize that miracles do happen. Regardless of what treatment choice you make, here's to you and your wife finding your own miracle in this difficult time!

Don't hesitate to PM if you'd like to talk about any of this further.
-Chip
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

Jacques
Posts: 301
Joined: Sun Dec 28, 2014 10:38 am

Re: HAI Pump Folks - Insight Appreciated

Postby Jacques » Sat Mar 18, 2017 3:16 am

juliej wrote:... no one is more experienced than Dr. Kemeny and MSK in HAI treatment...

Here is some additional information on Dr Kemeny:

Dr. Nancy Kemeny

Image

Dr. Nancy Kemeny - Biography

Dr. Nancy Kemeny - VIDEO
.
.
DX(2012): RC
Stage II, T4 N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0
----
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