Scan Results? Kinda Sorta... (hey HIPECkers, please read)

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Phuong
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Scan Results? Kinda Sorta... (hey HIPECkers, please read)

Postby Phuong » Fri Sep 12, 2014 11:18 am

Repeat CT/MRI didn't tell us anything except that the spot grew a little. Blood tests came back with a slightly elevated CEA. It's been undetectable for about a year but this time around it went from <0.5 to 0.7. The nurse tried to tell me that while there is an increase, the number is so low that I don't need to worry yet. With the growth, the increase in the CEA, and my history, I'm pretty sure it's a tumor. I will have an ultrasound guided biopsy on Monday - my onc is on the same page as I am with looking at this as a confirmation of our suspicions. He told me that this time around it will probably take a week to get my results. The biopsy itself should be straightforward, but since the tumor doesn't look like a typical focal nodular hyperplasia, so he anticipates that samples will be sent to TX (I'm assuming MD Anderson) and results will be presented to tumor board. I've made such an appearance to those meetings so frequently over the last 7 years I feel like I should just show up and say hello, I'm the freak that you've been studying for some time. Figured I might as well meet all of you since you've gotten to know my insides so well! :D

Anyhow, I asked the usual questions about treatment and here's where it gets a little more challenging. We can't clearly see how much (or little) room I have from the tumor to the portal vein. RFA is unlikely because the portal vein would be a heat sink. Surgery would be "tricky" but the good doctor did not rule it out. And SRS would come with concerns about the radiation doing damage to the portal vein. So, my question to the HIPECkers would be how many of you failed out of chemo and still had HIPEC? FOLFOX worked for me for a while, but the tumor came back later. FOLFIRI didn't work for me - cancer came back with new mets while I was on this regimen.

The good news is that this blasted thing is slow-growing, although that's been my brand. Slow-growing but persistent. It keeps wanting to come back. But the slow growth means that theoretically I have a little more time to look at the options and decide on a course of action (not that I'm going to lollygag). Ha! I love that word. I know, I'm a dork. As you can see, my spirits are fine. I figured that at some point it was likely to come back. It was more of a when than if I think. So we go back to the very odd routine of hurry up and wait with pauses in between to shuffle the feet forward with blood draws, biopsy, results, etc. until I get to determining what's next. Kind of mind-numbing, like standing in line at the DMV. Only in my line, I'm making stops at some local wineries (I'm just a skip from Napa) and taking advantage of this Indian Summer with wine and charcuterie tasting. I was given the ok to do so. In fact, I was told to have an extra glass. :twisted:
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

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

Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby radnyc » Fri Sep 12, 2014 11:33 am

Irreversible Electroporation (IRE). This seems to be a promising option for tumors close to major blood vessels.

http://www.medicalnewstoday.com/releases/259132.php

There is a doctor at MSKCC who is an expert on the procedure, Constantinos T. Sofocleous, M.D. I would look into this.

Al
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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Phuong
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Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby Phuong » Fri Sep 12, 2014 12:10 pm

Whoa - very cool Al. Thanks!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

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Jack&KatiesMommy
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Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby Jack&KatiesMommy » Fri Sep 12, 2014 12:16 pm

Hi Phuong.

I actually had Irreversible Electroporation (IRE) on a tumor in my liver that was close to the portal vein.

My IRE was done in February 2013....and so far so good. Dr. Steven Solomon was my physician at MSKCC and he is the Chief of Interventional Radiology.

He told me that there have only been about 2,000 IRE procedures worldwide done to date (as ov 2-2013) and that MSKCC had done over 1,000 of them.
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

SkiFletch
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Location: Buffalo, NY

Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby SkiFletch » Fri Sep 12, 2014 2:46 pm

Huh, that IRE sounds really cool. Phuong, remind me again where your met is? Is it inside the liver near the portal vein, or is it outside the liver where the portal vein meets the inferior vena cava?
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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Phuong
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Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby Phuong » Fri Sep 12, 2014 4:57 pm

Fletch, it's inside the liver near the portal vein. Cynthia, thank you for the heads up. Al and Cynthia, do either of you know if this is considered experimental therapy? Just curious and would want to plan the whole insurance business and coverage.

Thanks,
Phuong
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

NWgirl
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Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby NWgirl » Fri Sep 12, 2014 5:33 pm

I have nothing to add other than enjoy the wine. Napa is "the" place to be for wine. We recently settled on Walla Walla because it's a closer drive, but given the choice, I'd be in Napa. Swinging some chickens your way that whatever news comes your way, is good.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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

Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby radnyc » Fri Sep 12, 2014 5:53 pm

Hey Phuong, I don't know about that. I'm an MSK patient, but did not have this procedure. I'm sure Cynthia will get back to you with some good info. Good luck with everything.

Al
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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CheeseHead
Posts: 1171
Joined: Sat Jul 31, 2010 2:36 pm
Location: Netherlands

Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby CheeseHead » Fri Sep 12, 2014 11:44 pm

Hi Phuong,

Just dropped in and saw your post. Hope you'll find something that works for you and zaps the sucker back to where it belongs.

Meanwhile, cheers!

All the best,
Cheese
    2008
    10 Stg 4 colon srgry
    12 Xelox/Avast
    2009
    05 Liver srgry
    -12 Xelox
    2010
    05 Xelox
    08 Iri/Vect
    11 Liver srgry
    2011
    01-05 Iri,Vect,Xeloda
    09 CyberKnife
    2012
    03-07 Ph I trial
    08-11 Regorafenib
    2013-
    Xeloda
    Vecti
    Iri
    Xelox

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jgall
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Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby jgall » Sat Sep 13, 2014 7:54 am

Hey Phuong!

If your met is inside the liver then HIPEC isn't really an option I think. It is more for people with peritoneal mets. But, that IRE really sound s interesting and like it might be a great option for you.

If you end out coming to MSK, we must finally meet!

Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

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Phuong
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Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby Phuong » Sat Sep 13, 2014 1:54 pm

Cheese! It's nice to "see" you. Feels like it's been forever.

jgall wrote:Hey Phuong!
If your met is inside the liver then HIPEC isn't really an option I think. It is more for people with peritoneal mets. But, that IRE really sound s interesting and like it might be a great option for you.
If you end out coming to MSK, we must finally meet!
Julia


Thanks Julia - this is the piece that I was missing. Chemo brain after all these years! But yes my sister from another marriage, we most definitely would have to meet!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby Maia » Sat Sep 13, 2014 6:37 pm

Check on IRE/NanoKnife technology, yes -at the MSK or at the University of Maryland, for example. There, you have Dr Fred M. Moeslein. You have here a fellow from the forum that got the procedure done with him: Unresectable mets in liver - great solution. I'm sending his contact info on PM to you.

And, a little time ago, I wouldn't have mentioned this -it was available, for the liver, only in China, some places in Europe- but it has became available, apparently, at two USA locations in the last months: MRI-guided-fus (Magnetic Resonance Guided Focused Ultrasound Surgery). (It is more available for bone mets and brain tumours). No radiation, no incision.

What it is : Ultrasound surgery — healing without cuts (please, do watch! I like to imagine a near future where the mainstream treatment for cancer is this 'surgery' and the systemic treatment is immunotherapy :) )

For the liver: http://www.fusfoundation.org/diseases-a ... ver-cancer

In USA: *maybe* Dr Damir B. Khismatullin (New Orleans) Researchers test treatment for late-stage cancer, and *maybe* in Ohio, at the HIFU / FUS lab at the University of Cincinnati : http://www.ultrasound.uc.edu/

Keep strong, Phuong. Lots of love!

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: Scan Results? Kinda Sorta... (hey HIPECkers, please rea

Postby Maia » Sat Sep 13, 2014 9:06 pm

MRI-guided FUS (for other conditions):

Revolutionary scalpel-free surgery (Brain, essential tremor, Canada)

Noninvasive Brain Surgery (Brain, essential tremor, Israel)

North American first in children: SickKids doctors destroy bone tumour using incision-less surgery (Leg, bone; osteoid osteoma, USA, Aug 6, 2014)


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