Recurrence in retroperitoneal nodes, spine

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catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Recurrence in retroperitoneal nodes, spine

Postby catstaff » Wed Mar 03, 2021 12:22 pm

Hello. I have been lurking since my husband was diagnosed in October 2019, but have just now joined. As indicated in my signature, he was Stage IV due to distal lymph node mets. He had CRT which seemed effective, especially on the lymph nodes, but his oncologist went with total neoadjuvant treatment so next was FOLFOX, which failed and the primary grew back. He had exenteration but with a LAR rather than an APR. He had a temporary colostomy instead of an ileostomy due to the creation of an ileal conduit after the bladder was removed, but the anastomosis has been healing rather slowly and he has not had the reversible ostomy converted yet. (He had had a colostomy previously to relieve blockage by the rectal tumor, so it was just moved to a different location on the colon.) At his six-month postop checkup his CEA had suddenly jumped from 2.7 to 9, so he had a PET scan which showed three new spots, two more distal lymph nodes and a bone met in the L5 vertebra. He is scheduled for biopsies next week although the mets are very small; they are not sure the bone met is large enough to biopsy but they may try. We are not convinced this is worthwhile since there's little doubt of what they'll find, but it seems to be necessary for them to proceed. I was not allowed to accompany him to the PET scan and subsequent meeting with his oncologist, but he says the plan is SBRT on the mets. After that they may do FOLFIRI but I'm hesitant about that, assuming the radioablation is successful and his CEA returns to normal. They would have no way to check whether it's working in that case, and with this type of spread there is little clinical research and, as far as I can tell, no evidence that "mop up" chemo would be helpful. It could just hasten resistance. I will be allowed to attend his oncology appointment week after next to discuss that.

I take some comfort from some members of this board who seem to have managed mets of this type with success. My goal is to try to achieve aggressive management, including removal or destruction of mets. I am concerned they will just throw up their hands with the view it's "systemic disease, just do chemo." Other types of resectable mets are routinely removed, but our local hospitals don't do so for lymph nodes. I am also considering a request to go to a larger cancer center than our local one.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Achilles Torn
Posts: 139
Joined: Fri Dec 16, 2016 2:41 pm

Re: Recurrence in retroperitoneal nodes, spine

Postby Achilles Torn » Thu Mar 04, 2021 7:04 pm

Hi Catstaff,

I had a surgery in Sept 2020 to remove Para-aortic lymph nodes. First PET scan after was clear but my most recent in February showed more lymph nodes active. They would only do the surgery because they believed they had a chance to remove all the cancer (sadly not so). It does and can happen though.

I had good results with a very tolerable maintenance chemo of Capecitabine and Bevacizumab for 3 years before the surgery.

I am hopeful you find your way to surgery and perhaps a better result than I had.

Cheers
AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

Siti
Posts: 257
Joined: Thu Aug 01, 2019 10:58 am

Re: Recurrence in retroperitoneal nodes, spine

Postby Siti » Fri Mar 05, 2021 3:03 am

Achilles Torn wrote:Hi Catstaff,

I had a surgery in Sept 2020 to remove Para-aortic lymph nodes. First PET scan after was clear but my most recent in February showed more lymph nodes active. They would only do the surgery because they believed they had a chance to remove all the cancer (sadly not so). It does and can happen though.

I had good results with a very tolerable maintenance chemo of Capecitabine and Bevacizumab for 3 years before the surgery.

I am hopeful you find your way to surgery and perhaps a better result than I had.

Cheers
AT


At — sorry to hear about your active LN. Are you going back on maintenance.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

Siti
Posts: 257
Joined: Thu Aug 01, 2019 10:58 am

Re: Recurrence in retroperitoneal nodes, spine

Postby Siti » Fri Mar 05, 2021 3:06 am

catstaff wrote: Other types of resectable mets are routinely removed, but our local hospitals don't do so for lymph nodes. I am also considering a request to go to a larger cancer center than our local one.


My husband visited 2 hospitals in Singapore and Netherlands, plus offline consultation from an Oncologist in Belgium, unfortunately all recommended chemo for life. The only way for a PALND is if you’ve less than 3 distant LN and contained in the same location.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Recurrence in retroperitoneal nodes, spine

Postby catstaff » Fri Mar 05, 2021 8:24 am

Achilles, I followed your case. I was encouraged that you were able to have the surgery and disappointed that it didn't work out for you. I hope you stay stable on maintenance chemo. Hubby had a G3 mtKRAS primary which was very resistant to FOLFOX, so it's unclear that maintenance chemo would help him.

Siti, I think the recurrence is sufficiently isolated, and the mets small enough, that they are planning SBRT on the two nodes as well as the spine. I'll know more when we meet with the oncologist week after next. They used EBRT on the original PALN. We'll have to see what his CEA is afterward--it is apparently an excellent marker for him. If it's low and stays low, we may be able to delay FOLFIRI.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Claudine
Posts: 799
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Recurrence in retroperitoneal nodes, spine

Postby Claudine » Fri Mar 05, 2021 12:24 pm

Hello Catstaff,
Welcome to the forum, hopefully you can find support and valuable information here, as many of us have!
As you can see from my signature, my husband received SBRT two years ago for a met to his 4th lumbar vertebrae, after EBRT did not work. SBRT was a lot more effective although it did not kill all the cancer cells since things spread a bit over time and he and underwent partial corpectomy last May. But, it really helped with pain, mobility, etc. He had 6 rounds of Xelox as adjuvant chemo after the original EBRT radiation 3 years ago and that did not work either - he developed mets in lungs and adrenal gland and now has permanent neuropathy in his feet from it, so like you I would be leery of adjuvant chemo! When he developed the adrenal gland met, his oncologist put him on Folfiri + Avastin instead of having surgery right away - this way, he had a way to gauge the efficiency of the new regimen by following the shrinkage of the met.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22

Achilles Torn
Posts: 139
Joined: Fri Dec 16, 2016 2:41 pm

Re: Recurrence in retroperitoneal nodes, spine

Postby Achilles Torn » Fri Mar 05, 2021 6:50 pm

catstaff wrote:Achilles, I followed your case. I was encouraged that you were able to have the surgery and disappointed that it didn't work out for you. I hope you stay stable on maintenance chemo. Hubby had a G3 mtKRAS primary which was very resistant to FOLFOX, so it's unclear that maintenance chemo would help him.

Siti, I think the recurrence is sufficiently isolated, and the mets small enough, that they are planning SBRT on the two nodes as well as the spine. I'll know more when we meet with the oncologist week after next. They used EBRT on the original PALN. We'll have to see what his CEA is afterward--it is apparently an excellent marker for him. If it's low and stays low, we may be able to delay FOLFIRI.


Hey Catstaff,
You mention FolFox but not Avastin (Bevicuzimab). Some seem convinced that it works well to control lymph nodes (not much study behind that belief though) is why I ask.

In Response to Siti - I am going back on Xeloda and Bev next week. I basically been off chemo for almost a year so I guess I did get a nice break. Hope it works again !

Cheers
AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Recurrence in retroperitoneal nodes, spine

Postby catstaff » Sat Mar 06, 2021 8:36 am

The oncologist called after the tumor board meeting. They must have looked more closely at the PET because it's worse than we were initially led to believe. Five or six nodes, not two, with some spread beyond the initial region. Also his CEA doubled in three weeks to 18. So radiation is off the table -- too many nodes, and some too close to the EBRT field. I may be able to work out something with them for the spinal met since as I understand it, chemo doesn't reach those well. We would have to travel for proton therapy but we could do that if they would refer us.

He had FOLFOX without Avastin initially, since they were following the IIIC TNT protocol and he was going to have "curative" (ha) surgery. I lobbied hard to get the affected nodes and their neighbors out then, but the surgeons said they "don't do that" so here we are. Now he's second line, which will be FOLFIRI+bevacizumab. That would be good if the bev helps lymph nodes particularly. It may be possible, since they are small mets and it could inhibit them from growing further. The onc did suggest that surgery might be an option down the road if this chemo helps. I guess mtKRAS doesn't have much impact on response to FOLFIRI+Bev, perhaps it would be more the "G3" aspect there.

After something like 40 years of research, there are several drugs in the pipeline for mtKRAS. The one that's furthest along is for G12C, which is uncommon in CRC. He has the most common, G12D, but there are some coming up for that (and G12V). There is also something for CEA-secreting tumors. But a breakthrough always seems just out of reach, especially for those of us who don't have a lot of time to wait.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Achilles Torn
Posts: 139
Joined: Fri Dec 16, 2016 2:41 pm

Re: Recurrence in retroperitoneal nodes, spine

Postby Achilles Torn » Sat Mar 06, 2021 6:49 pm

Hi Catstaff,

During my surgery they removed 19 cancerous lymph nodes from up near my heart to down near the bowel. For me it came back but I do know others for who are at least 2+ years NED from similar surgery. So while 2 is better than 5...5 isn't the end of the world. I also know several who have gotten multiple lymph node mets to NED via Folfiri+Bev.

There are clinical trials that have a 20-30% responding well and adding many months or years of stability. Long shots maybe but still shots you can take.

If he has not had Avastin yet that alone is reason for hope.

AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Recurrence in retroperitoneal nodes, spine

Postby catstaff » Sat Mar 06, 2021 7:04 pm

Thank you, AT. I appreciate your perspective. I am fearful due to the KRAS mutation, which generally has a poorer outcome and shorter survival, but I've seen members here with mtKRAS who have survived for quite a while or have even achieved long-term NED. I am hoping we can hold out till some of the KRAS inhibitors are generally available, and/or they crack the "cold" tumor problem for immunotherapy. I suspect the former may come more quickly than the latter.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Claudine
Posts: 799
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Recurrence in retroperitoneal nodes, spine

Postby Claudine » Mon Mar 08, 2021 2:05 pm

I may be able to work out something with them for the spinal met since as I understand it, chemo doesn't reach those well


I agree; my husband had 3 SBRT fractions for his spinal met, with minimal side effects and a much better response than the less precise EBRT.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22

TestTheyDontStop

Re: Recurrence in retroperitoneal nodes, spine

Postby TestTheyDontStop » Sat Mar 13, 2021 6:53 am

Hey Catstaff, I will make this short and sweet for you. Please PM if you want to talk more about this. I am not sure if you have been told about Vectribix (Panitumumab). I also had 3-4 Retro-lymph nodes show up on a scan after my 2 time on chemo and 3 surgeries. Only after 3 rounds of Vectribix only no other drugs my CEA level went from 9.8 down to 3.4. My Jan scans showed NED. My CEA level since going down to 3.4 has been fluctuating in the 3’s. The skin issues are my biggest issues but I can’t complain because I’m still here! You are MSS which is good because this drug does not work on MSI cancer. God is good!!!!

Blessings

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Recurrence in retroperitoneal nodes, spine

Postby boxhill » Sat Mar 13, 2021 9:56 am

TestTheyDontStop, unfortunately vectibix doesn't work for those of us with KRAS mutations.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

TestTheyDontStop

Re: Recurrence in retroperitoneal nodes, spine

Postby TestTheyDontStop » Tue Mar 16, 2021 7:12 am

Catstaff, my apologies. I should have read better in your topic. I just saw you were MSS and got excited to share my experience with Vectribix. Like many people on here say they are always finding new things out and new drugs are being developed or are developed for other cancers to find out its working for colon cancer. My best wishes and prayers go out to you, keep up the good fight.

Shane

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Recurrence in retroperitoneal nodes, spine

Postby catstaff » Tue Mar 16, 2021 8:41 am

My husband is the patient, not me, but thanks regardless. EGFR inhibitors like Vectibix not only don't work in cases of KRAS mutations, they may be harmful. We may be close to an explosion of options for KRAS mutations, however. The G12C drugs are able to directly bind (chemically) to the mutated KRAS protein, whereas the G12D and G12V are more resistant to access by small-molecule inhibitors. But there are several drugs in development to block other parts of the signalling cascade involving KRAS, proteins called PLK1 and CDK4/6 as well as MEK. MEK inhibitors alone don't work (rapid development of resistance possibly leading to greater aggression) so combination therapies are in trials. There are also a couple of vaccines for the most common mutations in development. I just hope these become available at a quicker pace than is typical for drug development. (Some are already available, just not yet approved for application in this way to this cancer.)
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-


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