Waiting for PET results & HAI pump issue

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mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Waiting for PET results & HAI pump issue

Postby mpbser » Sat Jan 05, 2019 7:34 am

We went to MSK yesterday for my husband's PET scan which the MSK oncologist ordered for the purpose of confirming malignancy of the spots the MRI shows in his liver. We probably won't hear until late next week as reviews of scans can take a little time.

In the meantime, I have been researching the HAI pump so I could provide my husband with as much information as possible if these are metastases to the liver. What originally seemed to be a no-brainer actually is far, far, far more complicated than expected. There are so many issues to consider. I will discuss them at a later time because if these are not mets, then the idea of a pump can be shelved for us. Let's just say if they are mets, then we're in a really tough position and my husband will have to make an extremely difficult decision. I'm praying for a Hail Mary.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

User avatar
LPL
Posts: 458
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Waiting for PET results & HAI pump issue

Postby LPL » Sat Jan 05, 2019 10:01 am

Oh this waiting.. it is so hard !! :(
Sending positive vibrations for benign spots.
Kind regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Sat Jan 05, 2019 10:45 am

Thanks, LPL!

The absolutely most crazy thing is that Mass General recommended biopsy/ablation. Said that it's too soon for another resection. Without PET scan to confirm.

We have an appointment scheduled for January 22nd at Mass General to get it done, but ever since we learned of possible mets from the December 3rd MRI, I started to think that we should really explore the HAI pump and got my husband an appointment with Dr. Kemeny at MSK. At/after our December 26th consultation with her, 1) she said my husband should have done mop up chemo (Mass General did not recommend, very equivocating on the issue), 2) she said no, it's not too soon for another resection, 3) my husband could be a candidate for the pump, 4) her team reviewed the MRI and they were not convinced that either spot was metastatic, and 5) MSK scheduled him for the PET to get confirmation.
Last edited by mpbser on Sat Jan 05, 2019 11:23 am, edited 1 time in total.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

hiker
Posts: 104
Joined: Thu Aug 09, 2018 10:15 am

Re: Waiting for PET results & HAI pump issue

Postby hiker » Sat Jan 05, 2019 10:55 am

MSK is consistently ranked either the #1 or #2 cancer center in the US. Dr. Kemeny is one of the top oncologists in the country for colon cancer with liver mets (I would argue she's the best there is). Trust her.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Sat Jan 05, 2019 11:22 am

The ranking of MSK and Dr. Kemeny's reputation are the very reasons we have sought her out. Right now, it's just a matter of transition from MGH to MSK.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

User avatar
LPL
Posts: 458
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Waiting for PET results & HAI pump issue

Postby LPL » Sat Jan 05, 2019 1:24 pm

It must feel odd to get such different views on this from 2 hospitals that are both high ranked? We trusted hubby’s CRC-liver specialist professor when he said (when resectable) 4-6 chemo before and 6-8 chemo after liver surgery. Yes I researched and saw that was the European recommendation. (We live in France). There is no such recommendations that all hospitals follow in USA?
Keeping my fingers crossed that the section ”4) ... not convinced that either spot was metastatic” will be a fact when you get the result !
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

hiker
Posts: 104
Joined: Thu Aug 09, 2018 10:15 am

Re: Waiting for PET results & HAI pump issue

Postby hiker » Sat Jan 05, 2019 3:05 pm

mpbser wrote:The ranking of MSK and Dr. Kemeny's reputation are the very reasons we have sought her out. Right now, it's just a matter of transition from MGH to MSK.


Then there's nothing more that you can do except trust them.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Sat Jan 05, 2019 5:04 pm

As far as the two different mop up chemo stances, there are "two camps" on that. Some research shows mop up chemo doesn't help more than just a couple percent of people and my husband's Mass General oncologist is on the conservative side (one camp) whereas MSK/Kemeny is known for being far more aggressive with chemo (other camp). So, that doesn't surprise me. What seems odd to me is that Mass General didn't seek some way of confirming (e.g. PET, liquid biopsy, etc) instead of such an invasive procedure such as the percutaneous biopsy. It was my husband who said, well, if you are in there anyway taking out a cm of tissue to biopsy it, why not just ablate a little more (spot is ~ 1.5 cm) while you are in there instead of waiting for biopsy results. We didn't even think to ask for a PET and are super relieved MSK ordered one. Now, once the results come back, if one or both spots are metastases, my husband has a huge decision to make whether to stay with Mass General for now and go ahead with the biopsy/ablation or to switch oncologists, going to MSK from now on. If he chooses the latter, he has an option of participating in an experimental HAI pump-catheter (the one kind currently available) clinical trial or just sticking with systemic chemo/resection/etc. There is no way to get a pump at Mass General at this time. Nor would he want to. Dr. Kemeny is the only person he would trust with that.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Tue Jan 08, 2019 1:20 pm

Just heard from Dr. Kemeny’s office. PET scan results were “indeterminate.” They want my husband to come back for a MRI with their machine, their contrast, and their technicians. So, another trip in the near future down to NYC. I guess this is better than bad news for now :/ :)
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

User avatar
LPL
Posts: 458
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Waiting for PET results & HAI pump issue

Postby LPL » Tue Jan 08, 2019 2:06 pm

Oh this waiting... and not knowing :(
Pet scan next week for hubby...
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Tue Jan 08, 2019 3:39 pm

LPL,

Good luck with the PET next week!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

User avatar
LPL
Posts: 458
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Waiting for PET results & HAI pump issue

Postby LPL » Tue Jan 08, 2019 4:23 pm

Thank you mpbser <3
(They are checking lung nodules)
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Tue Jan 08, 2019 5:31 pm

I was trying to figure out from your signature what the PET was for. Did you have a CT scan recently that detected lung nodules that had not been noted previously? Fingers crossed they are benign. 90% of the time, they are!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

User avatar
juliej
Posts: 2904
Joined: Thu Aug 05, 2010 12:59 pm

Re: Waiting for PET results & HAI pump issue

Postby juliej » Tue Jan 08, 2019 5:36 pm

It's interesting Mass General didn't recommend mop-up chemo. Medical journal articles frequently quote the statistic below (J Med Life. 2015; 8: 12–14):

Nevertheless, tumor recurrence after curative resection of colorectal liver metastasis remains a major problem. 50% to 75% of the patients develop a recurrence of the disease within two years.

With those kind of odds, it just seem prudent to do adjuvant chemo. However, some oncs do a less stringent follow-up for various reasons: advanced age of the patient, severe comorbidities, or what I suspect happened in your husband's case - favorable genetic test results (KRAS wild, normal MLH1, MSH2, MSH6, PMS2, etc.) That isn't the safest approach, but their thinking is that it prevents the patient from unneeded chemo. It's a gamble though, anyway you look at it.

In my case, the prognosis was pretty grim. A recent population-based study (BMC Cancer. 2018; 18: 78) involving 1,026 patients (so not a small study) came up with the following statistic.

Patients without any metastatic disease had a 5-year OS of 75.1% compared to 25.2%, 45.7% and 12.7% respectively for patients with liver-only metastases, lung only metastases, and liver and lung metastases combined.

That puts me in the 12.7% category. I know MSK and the HAI pump are what made the difference in my (hopefully) long term survival. Things are fairly simple when you're a low stage, but treatment for Stage 4's is all over the map, unfortunately. My advice: Do your research, decide what's best, and then find an oncologist/cancer center who is in accord with your thinking.

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 9/14/2018, CEA<1

mpbser
Posts: 590
Joined: Wed Apr 19, 2017 11:52 am

Re: Waiting for PET results & HAI pump issue

Postby mpbser » Thu Jan 10, 2019 9:53 am

PET scan results just in:

IMPRESSION:
1. No definite PET correlate corresponding to hepatic lesions characterized as suspicious for metastases on foreign MR abdomen December
3, 2018. Consider MR follow-up as clinically indicated.
2. Non-FDG avid punctate left upper quadrant soft tissue nodules are below the threshold of PET resolution, possibly splenules, less likely
implants.
3. No significant focal increased uptake in the mildly prominent periportal nodes, possibly reactive.
4. Nonspecific punctate left pulmonary nodules, better seen on dedicated CT December 26, 2018 are likely below the threshold of PET resolution, possibly infectious/inflammatory or possibly metastatic. Surveillance with CT recommended.
5. Mild FDG avidity associated with a skin papule in the right axillary region, probably infectious/inflammatory. Correlate clinically.
6. Mildly FDG avid neck lymph nodes, nonspecific, probably reactive.

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.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED


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