liver, colon, HAI, what to expect

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mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

liver, colon, HAI, what to expect

Postby mike218 » Tue Mar 28, 2017 1:35 pm

again quick thanks to all who suggested pushing past MSKCC front desk and contacting Kemeny directly--surgery next week, colon tumor out , hopefully attack liver and add pump, I searched on site looking to see peoples experience with the pump-
when is 1st infusion, how frequent, how long does it run and have you gone anywhere other then NYC for pump refills--I honestly dislike the city-stress level through he rough (with blood pressure)
1) how long does chemo run? does glycerol get added right away
2) most importantly-how were the side effects of HAI chemo-I would think less then systemic chemo but prob. wishful thinking
3) was there a time limit on how long you could get HAI chemo

obviously we have not had this discussion in NYC-it was all surgical focus
9 days to surgery
mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

gfpiv
Posts: 157
Joined: Tue May 25, 2010 9:24 pm

Re: liver, colon, HAI, what to expect

Postby gfpiv » Tue Mar 28, 2017 8:49 pm

Congrats Mike, glad things look promising for you with MSK/Kemeny/HAI. Just a few quick responses:
1 - once you start HAI chemo (maybe about a month after install), you'll get FUDR (essentially 5-FU) in the pump for a 2-week slow-drip. Likely you will do systemic (in your case, maybe FOLFIRI, with or without Avastin?) that same day to address non-liver cells...and maybe even start 2 weeks earlier. After 14 days of FUDR in pump, you'll get it drained and they'll put saline/glycerol just to keep the pump primed; at that time you will likely also get your systemic chemo too. Then 2 weeks after that, drain glycerol and refill with FUDR, another 2 weeks on that (and systemic).
2 - I had essentially ZERO noticeable side effects from HAI...I honestly couldn't have told you the difference between FUDR and glycerol/placebo. My understanding is that this is common.
3 - Of course, HAI delivers like 6 times the concentration of 5-FU/FUDR directly to your liver that systemic would, so it can...and almost certainly will, over a long enough time period...cause some sort of temporary or permanent damage to liver and/or bile ducts, etc. Luckily they are VERY cognizant of this, and do a great job monitoring you (and esp. liver labs), so they can reduce or stop HAI when your body/liver can't take it any more. After about a year and a half on HAI, my liver labs became too escalated, and coupled with what they determined was bile duct damage/blockage, they eventually had to reduce and then stop HAI. In many cases liver labs return to normal after stopping...though almost all my liver labs have stayed greatly elevated to this day. Luckily however, my bilirubin is back to basically normal, so there is no jaundice/itching that was frustrating for a short time. Again, in my specific case I had bile duct damage which was heading me towards liver failure - until a great MSK radiology doc (not my local one) found it, put in a stent or 2...and then eventually my amazing hepatic surgeon at MSK did a permanent bile duct / small intestine bypass that has made my life great ever since. I was concerned that stopping chemo due to liver damage would result in a recurrence...but turns out almost all the nasty stuff had been killed/calcified by then (except for one pesky liver met that we burned out a couple years later).
4 - My local onc was able to be trained (relatively easy) to drain the last drops of FUDR from the pump, and refill with saline/glycerol. So that saved me one of my 8-hour round-trips to MSK each month. You'll likely need to go to MSK to get the pump refilled with the good stuff though.

Best of luck with your surgery and recovery!
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

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: liver, colon, HAI, what to expect

Postby mike218 » Wed Mar 29, 2017 11:59 am

THANK YOU so much-those were all nagging questions we had but couldn't think about because of surgical focus
one less thing to worry about

mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: liver, colon, HAI, what to expect

Postby kandj » Thu Mar 30, 2017 11:02 am

mike218 wrote:when is 1st infusion, how frequent, how long does it run and have you gone anywhere other then NYC for pump refills--I honestly dislike the city-stress level through he rough (with blood pressure)
1) how long does chemo run? does glycerol get added right away
2) most importantly-how were the side effects of HAI chemo-I would think less then systemic chemo but prob. wishful thinking
3) was there a time limit on how long you could get HAI chemo

mike


DH's first pump fill (with chemo, they fill it with glycerol before you are discharged) was 3 weeks after surgery. Stays in for 2 weeks, then comes out and they put saline/heparin in. That part can be at your doctors. The actual FUDR is done in NY and there is no way around that. She will not let others do it.

1. 2 weeks in, 2 weeks out (or longer if you need more time to recover)

2. As for the side effects, they were pretty negligible compared to Systemic. He did have some hair thinning he didn't have just on systemic. And there is a concern for stomach ulcers, so they have you take a stomach acid reducer.

3. Depends on what your end game is. If you are going to have your liver resection when they put it in, then 6 treatments after surgery is typical. If you are trying to shrink things to get to surgery, then it is more. DH had 4 FUDR treatments to shrink things. He had to skip one month due to high liver numbers. Then they did the resection, and he had 6 additional treatments. To be honest, I think that is his max. He had his last one in December and has had trouble getting his liver numbers normal. Most likely this is caused by scaring.

Who is your surgeon? DH had DeMatteo and he is amazing. Dr. Paty was the colorectal surgeon and did a phenomenal job. All their surgeons are top notch
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: liver, colon, HAI, what to expect

Postby mike218 » Fri Mar 31, 2017 10:42 am

thank you too--this has answered so many questions
Paty is colo rectal, Kingham is liver- I forget who's going 1st-(I think liver d/t positioning for colon resection) , one of them called it "an all day affair"-hopefully liver is resection when pump go in -I think there are 12 or so 2mm issues scattered across liver
I'm honestly starting to freak out a bit original colon surgery was emergent, with this I have another 7 days to get crazy--was happy with MD's and MSKCC and just want this part over for now-just to survive the surgery
thank for explaining the chemo too, I'm hoping they let the satellite offices do it (basking Ridge or Middletown ) less stress

mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: liver, colon, HAI, what to expect

Postby kandj » Thu Apr 06, 2017 6:50 pm

Hey Mike,

If I can count, your surgery was either today or yesterday (I think they do surgeries on Tuesdays and Thursdays). Hopefully it went well and you are on your way to an uneventful recovery. And Dr. Kingham is great. He came in and assisted Dr. DeMatteo when my DH had his pump put in. They ran into a problem with his hepatic artery (much smaller then they were anticipating). I doubt surgeons of lesser expertise would have accomplished the HAI insertion
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.


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