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Re: ...progression...

Posted: Mon Aug 26, 2019 4:43 am
by Mohrfamily
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.

Re: ...progression...

Posted: Tue Sep 10, 2019 4:45 am
by Mohrfamily
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.

Re: ...progression...

Posted: Tue Sep 10, 2019 6:20 am
by Rock_Robster
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.

Re: ...progression...

Posted: Wed Sep 11, 2019 4:34 am
by Mohrfamily
The onc at OSU made it seem like either choice would cancel out the other. Leaves a predicament what if we choose wrong.

Re: ...progression...

Posted: Wed Sep 11, 2019 5:25 am
by Rock_Robster
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

Re: ...progression...

Posted: Wed Sep 11, 2019 3:00 pm
by kandj
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)

Re: ...progression...

Posted: Fri Sep 13, 2019 4:44 am
by Mohrfamily
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?

Re: ...progression...

Posted: Fri Sep 13, 2019 11:58 am
by ginabeewell
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.

Re: ...progression...

Posted: Sun Sep 15, 2019 11:19 pm
by kandj
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.

Re: ...progression...

Posted: Mon Sep 16, 2019 5:47 pm
by juliej
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

Re: ...progression...

Posted: Tue Sep 17, 2019 4:42 am
by Mohrfamily
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!

Re: ...progression...

Posted: Tue Sep 17, 2019 6:53 am
by Gravelyguy
That is great news! I am sure October 9th can’t get here soon enough for you guys!

Re: ...progression...

Posted: Tue Sep 17, 2019 7:24 am
by Mohrfamily
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!