Recurrence in retroperitoneal nodes, spine

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

Re: Recurrence in retroperitoneal nodes, spine

Postby Claudine » Tue Mar 16, 2021 11:50 am

I just hope these become available at a quicker pace than is typical for drug development


Many of us in the same boat!! FYI there's a Facebook group called KRAS mutated colorectal cancer. It's pretty new, but there are regular posts about clinical trials and other things aimed at KRAS mutated patients.
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

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

Re: Recurrence in retroperitoneal nodes, spine

Postby catstaff » Wed Mar 17, 2021 7:11 am

I avoid Facebook but may consider it for that. But I can generally keep up with this at clinicaltrials.gov and through other sources.

KRAS mutations are extremely common, even dominant, in pancreatic ductal adenocarcinoma (by far the most common kind of pancreatic cancer) so that's driving some of the research in this area. The frequency pattern is pretty similar to what occurs in CRC (G12D, G12V most common followed by other G12 mutations, others much less common).
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 » Wed Mar 17, 2021 4:44 pm

In my experience the Facebook groups focused on colon cancer trials can be very helpful. You get info on how to get into trials, individual trial experience, anecdotal accounts of success and failures etc.

I think there used to be a more vibrant community discussing trials on this board but those members have moved on or are no longer with us.

Just my 2 cents

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 » Thu Mar 18, 2021 7:08 am

Well, the pickings are mighty slim for a patient who hasn't done second-line treatment yet. We applied for such a trial, but were rejected on the grounds that his recurrence occurred too long after the end of first-line treatment. The eligibility criteria can be quite stringent. Most trials are for third-line or even later.

I have an idea of what trials I will really want him in, we'll see how that goes.
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-

Bianca10
Posts: 94
Joined: Thu Jun 29, 2023 4:46 pm

Re: Recurrence in retroperitoneal nodes, spine

Postby Bianca10 » Fri Jun 30, 2023 3:33 am

Hey everyone,

First time on this forum. It sadly my partner that is affected.
Some really interesting and inspiring stories. Seems like techniques, advances, medicines and surgeons generally tend to be more creative overseas. We’re based in the UK.
I don’t think I am able to directly message anyone so I find myself here… and not sure I’m doing this right - Achilles Torn, and anyone else with previous/current PALN, just curious to see if you’re ok/still around? How are you faring?

Achilles Torn wrote:
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

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

Re: Recurrence in retroperitoneal nodes, spine

Postby Achilles Torn » Tue Jul 04, 2023 10:46 am

I’m still here. Had some lungs Mets with the biggest removed by surgery and still on chemo. But above ground for now.
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

Bianca10
Posts: 94
Joined: Thu Jun 29, 2023 4:46 pm

Re: Recurrence in retroperitoneal nodes, spine

Postby Bianca10 » Tue Jul 04, 2023 10:50 am

Achilles Torn wrote:I’m still here. Had some lungs Mets with the biggest removed by surgery and still on chemo. But above ground for now.


Awesome, so glad you’re still doing alright on the whole! Glad you got surgery on the lung as well, were the smaller ones dealt with by chemo/radio?
How are you finding the maintenance/Avastin?

Sorry for all the questions!

drmike
Posts: 3
Joined: Tue Jul 25, 2023 9:49 pm

Re: Recurrence in retroperitoneal nodes, spine

Postby drmike » Wed Jul 26, 2023 4:07 pm

Achilles Torn wrote:I’m still here. Had some lungs Mets with the biggest removed by surgery and still on chemo. But above ground for now.


Hi Achilles Torn (and All)- I am new to this forum but have been fighting since my stage 3 sigmoid cancer diagnosis (5/13 positive local lymph nodes) in December 2021. I was grateful to make it through 6 months of chemo with an all clear from my Onc that next August. Unfortunately, my most recent CT scan showed 3 retroperitoneal nodes increased in size (confirmed cancer with PET). I will admit, I am scared to death but came across this forum and your posts...through detailing your journey ~7 years post your initial distant lymph node diagnosis, you have given me added hope that I have years (hopefully many) left to spend with my family...thank you. Once I've been on this site long enough, I look forward to posting my updates as well as embracing the support of you and all the hero's here fighting the good fight.

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

Re: Recurrence in retroperitoneal nodes, spine

Postby Achilles Torn » Mon Aug 14, 2023 11:07 pm

Hi Dr Mike,

From what I can tell you still have a lot of options open and a good shot at being here just as long as I have if not longer.

Hi Bianca,

The other small mets are just chilling there for now. I have had some issues keeping me off chemo for the last little while but in my experience Cap and Bev are highly tolerable in the right dose and kept me stable for years.

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

Bianca10
Posts: 94
Joined: Thu Jun 29, 2023 4:46 pm

Re: Recurrence in retroperitoneal nodes, spine

Postby Bianca10 » Tue Nov 14, 2023 4:52 am

Achilles Torn wrote:Hi Dr Mike,

From what I can tell you still have a lot of options open and a good shot at being here just as long as I have if not longer.

Hi Bianca,

The other small mets are just chilling there for now. I have had some issues keeping me off chemo for the last little while but in my experience Cap and Bev are highly tolerable in the right dose and kept me stable for years.

Cheers
AT


Thinking of you AT, just wondering how you’re getting on? X

saltygirl
Posts: 143
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Recurrence in retroperitoneal nodes, spine

Postby saltygirl » Tue Nov 21, 2023 5:04 pm

I had distant retroperitoneal nodes. Had chemo, radiation and surgery. Cancer free since I completed treatment almost 3 years ago.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023


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