...progression...

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Mohrfamily
Posts: 195
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Mon Aug 26, 2019 4:43 am

HAI discussion is coming up on September 9th. We had a follow up with our oncologist this past Friday who supported the notion DH was otherwise reluctant about. But after her insistence to have the conversation its kinda like "ok, if I have to" mind set.

I get it he's nervous I also see someone finally said YES instead of just automatically saying NO (IR doctor) and he wants to jump all over it before they change their mind and we have the mapping scheduled for SIRT at the end of September, AFTER, the pump consult. I expressed I'd feel more comfortable asking the final questions before proceeding and after the doctor said the same he was finally on board.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery

Mohrfamily
Posts: 195
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Tue Sep 10, 2019 4:45 am

So we talked to an oncologist at Ohio State James cancer center (Wexner). We got some good feedback, some things we knew already.

He suggested keeping our scheduled SIRT in place and advised we talk to their surgeon on HAI.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: ...progression...

Postby Rock_Robster » Tue Sep 10, 2019 6:20 am

I’m sure someone has mentioned this already but my understanding is that liver SIRT rules out future HAI therapy - at least at MSK. So all else being equal, HAI first would perhaps make more sense? Perhaps someone more knowledgeable than me can confirm this though.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Mohrfamily
Posts: 195
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Wed Sep 11, 2019 4:34 am

The onc at OSU made it seem like either choice would cancel out the other. Leaves a predicament what if we choose wrong.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: ...progression...

Postby Rock_Robster » Wed Sep 11, 2019 5:25 am

Mohrfamily wrote:The onc at OSU made it seem like either choice would cancel out the other. Leaves a predicament what if we choose wrong.

Interesting; I hadn’t heard of it the other way around (ie couldn’t SIRT after HAI), but I suppose that’s possible. I guess the range of folk offering SIRT is much broader than HAI, however.

Personally if I were considered a candidate for HAI I would prioritise this over SIRT. I can go into the rationale if you like, but it’s really just one guy’s view.

Good luck,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

kandj
Posts: 264
Joined: Sun Sep 27, 2015 11:29 am

Re: ...progression...

Postby kandj » Wed Sep 11, 2019 3:00 pm

With the amount of mets your husband has, I would think the possibility of liver resection gives him the best chance at a cure. HAI is the way to do that. I would not do SIRT until you have met with someone about HAI (preferably at MSKCC if you can swing it)
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19
New spot seen in lungs and adrenal gland 11/2019

Mohrfamily
Posts: 195
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Fri Sep 13, 2019 4:44 am

I'm sure I know but can't quite remember but what kind of side effects does one have after HAI placement? What are the chances that they will resect (the colon) during that surgery?
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery

User avatar
ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: ...progression...

Postby ginabeewell » Fri Sep 13, 2019 11:58 am

Mohrfamily wrote:I'm sure I know but can't quite remember but what kind of side effects does one have after HAI placement? What are the chances that they will resect (the colon) during that surgery?


They did resect my colon when they placed the pump. I think they often try to do this. Obviously my liver wasn't ready yet.

Side effects are mostly lifestyle related - e.g. no more alcohol, you have to be careful with exercise, no hot tubs or heating pads, that kind of thing. My pump is very visible but I think that's just because I'm so thin. Both MSK and NW like to train on me because my pump is so prominent, so I don't think I'm the norm. I have what I call my "pump bump" and sometimes I feel like it looks like I have a lopsided pregnancy!

The cycle I just did pump chemo, I felt nothing from the chemo - like literally nothing. And I don't notice any difference with cycles where I have pump chemo versus those that don't. It's the systemic that seems to drive the side effects.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

kandj
Posts: 264
Joined: Sun Sep 27, 2015 11:29 am

Re: ...progression...

Postby kandj » Sun Sep 15, 2019 11:19 pm

Mohrfamily wrote:I'm sure I know but can't quite remember but what kind of side effects does one have after HAI placement? What are the chances that they will resect (the colon) during that surgery?


To be honest, the actual side effects of the pump chemo are not noticeable. You are also on systemic at the same time so you will notice that more. FOr DH the biggest pump related issue was elevated liver enzymes. They had to put steroids and saline in for several months due to his being so elevated. This was after he got to the point of resection and had it done. DR. K likes to do 6 months of pump chemo after resection and I think DH got like 3-4. He ended up with a recurrence (albeit much smaller amounts then the original) 14 months after resection. Not sure if the two are related.

As far as I know, they always resect the primary during the pump surgery. I want to say that part was first, then the pump surgery was second in what was a very long day.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19
New spot seen in lungs and adrenal gland 11/2019

User avatar
juliej
Posts: 3052
Joined: Thu Aug 05, 2010 12:59 pm

Re: ...progression...

Postby juliej » Mon Sep 16, 2019 5:47 pm

Mohrfamily wrote:I'm sure I know but can't quite remember but what kind of side effects does one have after HAI placement? What are the chances that they will resect (the colon) during that surgery?

There is a very good chance they will resect the colon during the HAI pump placement surgery. It's pretty standard. I also had a liver resection at the same time, so essentially 3 surgeries at once: colon resection, liver resection, and HAI pump placement.

As others have mentioned, there aren't really any side-effects from the chemo (FUDR) in the HAI pump. However, you are given a systemic chemo at the same time (like 5FU, Irinotecan, Xeloda, Erbitux, etc), and that does cause side-effects. But they are controllable to some extent with meds. The pump itself is a dream though - it kills the tumors and you don't feel a thing. :D

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

Mohrfamily
Posts: 195
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Tue Sep 17, 2019 4:42 am

I have some POSITIVE news to share

Drum roll please

DH has given the green light to OSU to place an HAI pump! While he was not impressed with the oncologist we saw last week the surgeon we spoke to was totally different, she spoke to us not at us. She also studied at MSK so not only is she familiar with their strategies but knows Dr. Kemeny! Her name is Mary Dillhoff.

With the pump issue of switching over from codeman and Medtronic they had 3 original pumps left that won't require a lot of extra push through! The downside is we have to wait till October 9th to talk to the surgeon again but also see a colorectal surgeon, Dr. Arnold, and do a scan for them all the same day.

Dillhoff explained that we CAN still get SIRT after the pump as well!
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery

Gravelyguy
Posts: 263
Joined: Thu Jul 05, 2018 6:03 pm

Re: ...progression...

Postby Gravelyguy » Tue Sep 17, 2019 6:53 am

That is great news! I am sure October 9th can’t get here soon enough for you guys!
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

Mohrfamily
Posts: 195
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Tue Sep 17, 2019 7:24 am

Gravelyguy wrote:That is great news! I am sure October 9th can’t get here soon enough for you guys!


No it can't but I'm grateful not to miss so many hours on my paycheck at the same time. Hoping and praying we can do the surgeries before the end of the year!
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery


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