Waiting for PET results & HAI pump issue

Please feel free to read, share your thoughts, your stories and connect with others!
mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Thu Jan 10, 2019 10:16 am

Here's the section pertinent to the liver:

HEPATOBILIARY: Pattern of diffuse mild heterogeneous uptake in the liver probably related to statistical noise. No definite focal increased uptake corresponding to hepatic lesions which are better characterized on MR abdomen December 3, 2018. Note that assessment of metabolic activity may be limited in view of background of diffuse heterogenous hepatic uptake and/or size of these hepatic lesions.

Interesting.... I don't know what to make of all this.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Waiting for PET results & HAI pump issue

Postby LPL » Thu Jan 10, 2019 1:21 pm

mpbser wrote:
Calling Mass General today to reschedule the biopsy-ablation which is definitely premature at this point. Friday's MRI at MSK will be extremely helpful.

mpbser, Good Luck tomorrow!
I hope you will get more answers and a clear MRI.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Thu Jan 10, 2019 1:50 pm

Thanks! Let us know how your scan this week went!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Waiting for PET results & HAI pump issue

Postby LPL » Thu Jan 10, 2019 2:06 pm

Thanks - Yes I will. The PET is Thursday next week. We see Onc the Monday after. Reading now about different scenarios.. as ‘we’ do ;| trying to be prepared...
Last edited by LPL on Tue Jan 15, 2019 4:29 pm, edited 1 time in total.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Tue Jan 15, 2019 12:18 pm

Damn it. I had gotten my hopes up. MSK's MRI confirmed that segment 6 has a met. Going to meet with surgeon Dr. D'Angelica on Monday.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Waiting for PET results & HAI pump issue

Postby LPL » Tue Jan 15, 2019 3:04 pm

Oh :( I did not see that coming.
But you are in good hands ! Thinking about you.
Hoping you will get a good plan on Monday.
Last edited by LPL on Wed Jan 16, 2019 11:12 am, edited 1 time in total.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Tue Jan 15, 2019 3:30 pm

I am pretty shocked. My husband is now set on the pump. He wants to double his chances of recurrence-free survival.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Waiting for PET results & HAI pump issue

Postby LPL » Tue Jan 15, 2019 4:06 pm

mpbser wrote:I am pretty shocked. My husband is now set on the pump. He wants to double his chances of recurrence-free survival.

I totally understand that. If we lived in the USA and DH had the same results, that would be what I wished he would decide to do. All the best to you going forward.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

User avatar
juliej
Posts: 3049
Joined: Thu Aug 05, 2010 12:59 pm

Re: Waiting for PET results & HAI pump issue

Postby juliej » Wed Jan 16, 2019 8:16 pm

mpbser wrote:Damn it. I had gotten my hopes up. MSK's MRI confirmed that segment 6 has a met. Going to meet with surgeon Dr. D'Angelica on Monday.

D'Angelica is brilliant, as I've mentioned before. He is also very handsome. So be prepared. :D
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

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Thu Jan 17, 2019 7:22 am

julie,

I just noticed that you got the HAI pump although you had lung mets. For some reason (in addition to the fact that extrahepatic cancer disqualifies people from the pump trial at MSK) I thought that one cannot get the pump if there are lung mets.

I am curious because a family friend had two lung ablations recently and just yesterday a scan found another tumor on his liver which had been worked on a few months ago. She is at UPenn where Dr. DeMatteo now is and I have heard that he has wanted to start a pump program there. I'm wondering if she might be a candidate.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
juliej
Posts: 3049
Joined: Thu Aug 05, 2010 12:59 pm

Re: Waiting for PET results & HAI pump issue

Postby juliej » Thu Jan 17, 2019 5:12 pm

mpbser wrote:julie,

I just noticed that you got the HAI pump although you had lung mets. For some reason (in addition to the fact that extrahepatic cancer disqualifies people from the pump trial at MSK) I thought that one cannot get the pump if there are lung mets.

I am curious because a family friend had two lung ablations recently and just yesterday a scan found another tumor on his liver which had been worked on a few months ago. She is at UPenn where Dr. DeMatteo now is and I have heard that he has wanted to start a pump program there. I'm wondering if she might be a candidate.

My two lung mets (a giant one in each lung!) didn't disqualify me for the HAI pump. I had a liver resection, removal of my primary tumor, and the pump implanted in a huge triple 7 1/2 hour surgery shortly after my consultation at MSK. I went back on chemo a few weeks after I recovered. Then three months later, I had double lung surgery plus an ileostomy reversal (another triple procedure). After a short recovery I went back on both chemo in the pump and systemic chemo until I finished my adjuvant treatment.

I would definitely bring this up with Dr. DeMatteo (who's a really great doc!) and see if your friend is a candidate for an HAI pump. If his lung mets have been ablated there's no reason he couldn't have it, as far as I know. He could bring me up as an example and DeMatteo could check with Kemeny for my case file. A lot depends on his current state -- is his current chemo regime working to keep things under control? is his CEA getting lower? what is his genetic profile? etc. -- but it's definitely worth a try.

I think lung mets only really disqualify someone from the pump clinical trial (because trials are very rigid in their requirements), and otherwise it's up to the oncologist and her team to decide if it's a good move for a particular patient. Aggressive treatment isn't for everyone, but when it works, it's a freaking miracle!

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

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Thu Jan 17, 2019 6:30 pm

I will make the suggestion to my aunt. It's actually my aunt's best friend who is going through this. Someone on one of the colontown groups on facebook told me that Dr. DeMatteo canceled the pump program when the Codman production stopped. I'm not sure if they are doing the Medtronic-Codman adaptation "off label" like some places are currently doing.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Fri Jan 18, 2019 3:22 pm

....
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Fri Jan 18, 2019 3:37 pm

My husband just said to a surgeon friend of his, "I can’t stand the emotional roller coaster. Why schedule a surgical consult if it’s still indeterminate?"

Here’s what the MSK report (we just got it this afternoon) says relative to the liver with my comments in brackets:

HEPATOBILIARY: Mild patchy steatosis. [fatty liver] No definite new lesions have emerged. Unchanged relatively T1 hyperintense (hemorrhagic) peripheral segment 4a lesion measuring 2.4 cm. [scarring/etc from his liver surgery to take out the 4a tumor] Slightly increased rim-enhancing lesion in inferior segment 6 measuring 1.3 cm (series 1203 image 103 and series 10 image 66). [this spot was noted was 1.3 cm on MGH's Dec 3rd MRI, this is the most concerning/suspicious spot] Poorly defined diffusion weighted hyperintensity with geographic hypervascularity (series 1202 image 93) is unchanged. [not sure what this might mean] Other previously new lesions lesions in segment 6 such as on series 1205 image 93 are much less prominent [this was just a "we don't know what it is, it's so small" spot on segment 6 that MGH noted Dec 3] and the caudate lobe lesion previously identified (December 3, 2018, series 15, image 53) is no longer clearly seen. [caudate lobe spot was not so suspicious and not a major concern of MGH's] A lesion with delayed rim enhancement and diffusion weighted hyperintensity in medial segment 5 is unchanged measuring 1.5 x 1.2 cm previously 1.6 x 1.1 cm when remeasured on the prior exam similar fashion (possibly a hemangioma given stability since January 2018). [yeah, this was biopsied and it is a hamartoma - benign]

IMPRESSION: Since December 3, 2018
1. Slightly increased inferior segment 6 lesion suspicious for metastasis. NO ACTUALLY NOT SLIGHTLY INCREASED – EXACTLY THE SAME!
2. Other lesions in segments 6 and caudate lobe of uncertain etiology are either unchanged or more poorly seen. GOOD NEWS
3. Segment 5 lesion also unchanged (since January 2018). GOOD
4. Unchanged segment 4A resection/ablation site. GOOD

ARGH!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Waiting for PET results & HAI pump issue

Postby LPL » Fri Jan 18, 2019 4:01 pm

mpbser, what do You want MSK to do/say?
Surgery to remove the suspicious/uncertain spots? Or watch & wait? A surgical consult to discuss this must be good ‘in my book’. Wishing you peace of mind.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: ginabeewell and 54 guests