Re: New guy with old questions.

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Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: New guy with old questions.

Postby Rock_Robster » Mon Feb 12, 2024 12:30 am

I guess everyone has to make their own decision here based on risk and benefit, but I’m inclined to agree with RP that a 2-3 month chemo break before surgery is more risk than I’d probably be prepared to take on. A month is quite normal, and I’d probably be ok with stretching it a couple of weeks further. But in the context of metastatic spread, small changes can happen fast and close an otherwise narrow surgical window.

The primary tumour is less of a concern as it will almost certainly still be undergoing shrinkage from the radiotherapy. But speaking as a guy who missed out on a liver resection because of distant lymphatic spread while waiting for a PVE to work, you really don’t want to give those buggers an inch or they’ll take a mile.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

JP66
Posts: 21
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: New guy with old questions.

Postby JP66 » Mon Feb 12, 2024 7:49 pm

My gut feeling in asking the question was that the likely proper response is NOT to wait on surgery. I think I'll still discuss the topic with my doc, but I also think I'm leaning heavily towards just "get 'er done" and live with an ostomy this summer. If it means I'm otherwise healthy and cancer free all summer I'll take it :)

There was a lot that I'll respond to at a later time as well, but I will just say that my meeting with my surgeon will be face to face. I meet with one of my 3 docs every two weeks face to face. I will add that the team here in Norwalk, CT is really attentive, and I couldn't be happier with them.
- Male 57 y/o
- TIIIbN+M1
- Stage IV (diagnosed 10/23)
- MSI status - ?
- KRAS non-mutant
- surgery - TME planned post chemo
- Modified Neo-adjuvant Therapy (I'm not sure why they call it "modified" although my guess is the chemo is FOLFIRINOX and not FOLFOX)
- tumor 3.9 cm craniocaudal length, 7.4 cm from AV, moderately differentiated
- 01/24 completed 27 treatments radiation+Xeloda
- CEA 8,10,11/23 1.8,1.3,1.6
- dihydroxi vit D 70.9 pg/ml

rp1954
Posts: 1846
Joined: Mon Jun 13, 2011 1:13 am

Re: New guy with old questions.

Postby rp1954 » Tue Feb 13, 2024 2:21 pm

JP66 wrote:My gut feeling in asking the question was that the likely proper response is NOT to wait on surgery.

Knowing what I've seen, read, and all we did, I would say the biggest question is about optimum - WHICH surgery and conditions.
Because we took the initiative and aggressively went beyond "standard" on common points of failure, we were able to brush off doctors' writeoffs ("chemo forever" to terminal failure) and still stay in the cure game. Distant lymph nodes need better than standard or average talents for best results, and probabilities - where there are biological differences to navigate.

I think I'll still discuss the topic with my doc

We had a number interviews with various kinds of drs, and not just the first to agree.

but I also think I'm leaning heavily towards just "get 'er done" and live with an ostomy this summer.

I would seriously investigate LN removal first with continuous chemo for best QoL and probabilities.
But you would have to seriously work and prepare for several months to pull it off.
My wife was pretty fully functional a few weeks after better surgery conditions - better talent, better chemistry even though both (former) surgeon #1 (consulted month before surgery #2) and surgeon #2 (5 days after surgery #2) were writing her off. She actually was in surprisingly good shape 5 days after surgery #2. Treatment and support wise, we went beyond anything they had experience with even though #2 really was a hot shot.

If it means I'm otherwise healthy and cancer free all summer I'll take it :)

success is never guaranteed but our experience with the best talents we could find/get (I emphasize search and interviewing), the PALN surgery and recovery was rapid

... but I will just say that my meeting with my surgeon will be face to face.

More than one interview can be important for learning and pre - arranging, even if you switch surgeons or procedures.

I meet with one of my 3 docs every two weeks face to face. I will add that the team here in Norwalk, CT is really attentive, and I couldn't be happier with them.

New faces with different experience and talent is important for best options.
Most doctors have been 1-2 time interviews with only a few keepers.

My question is how much time and effort can and will you invest to achieve a better summer, and for better results?
Last edited by rp1954 on Thu Feb 15, 2024 12:27 am, edited 1 time in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

JP66
Posts: 21
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: New guy with old questions.

Postby JP66 » Wed Feb 14, 2024 8:35 am

RP,

Thank you for that thoughtful and helpful reply, very interesting. It brings to mind a couple of my own thoughts and questions.

First, before settling on my current team of doctors I did engage a team from Memorial Sloan Kettering in NY. Initially their plan included Total Neo-adjuvant therapy of radiation/chemo/TME surgery. The lead doctor very explicitly outlined they would NOT be removing the two Common Iliac lymph nodes. The team at Whittingham center in Norwalk Connecticut is on that same plan and have NOT mentioned removal of the metastatic lymph nodes either. Finally, I recall reading a Japanese study as regards my exact situation i.e. metastasis in the Common Iliac lymph nodes where they looked at patients who had surgery to remove said lymph nodes versus patients who did not and the result was no observable improvement in overall survival rates.

Question: Does anyone have links on research related to distant lymph node removal?
Question for RP specifically: When you write of "preparing" for surgery, what exactly do you mean? I do currently try and maintain the highest level of fitness I can, and exercise at least 4 times a week, and my body did recover faster than normal from a double hernia repair I had last August. Is that what you mean or are you talking about taking daily Xeloda for months before surgery along with other aspects?

Joe
- Male 57 y/o
- TIIIbN+M1
- Stage IV (diagnosed 10/23)
- MSI status - ?
- KRAS non-mutant
- surgery - TME planned post chemo
- Modified Neo-adjuvant Therapy (I'm not sure why they call it "modified" although my guess is the chemo is FOLFIRINOX and not FOLFOX)
- tumor 3.9 cm craniocaudal length, 7.4 cm from AV, moderately differentiated
- 01/24 completed 27 treatments radiation+Xeloda
- CEA 8,10,11/23 1.8,1.3,1.6
- dihydroxi vit D 70.9 pg/ml

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: New guy with old questions.

Postby Rock_Robster » Wed Feb 14, 2024 9:46 am

This was the main source I was looking at when convincing my surgeon to complete a lymphadenectomy of the celiac nodes. Encouraging results but only a quite small cohort unfortunately.

https://www.sciencedirect.com/science/a ... 8415001244

This is also a good piece I referenced which covers lymph node cytoreductive surgery, amongst many others:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6422355/
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

rp1954
Posts: 1846
Joined: Mon Jun 13, 2011 1:13 am

Re: New guy with old questions.

Postby rp1954 » Wed Feb 14, 2024 3:08 pm

JP66 wrote:First, before settling on my current team of doctors I did engage a team from Memorial Sloan Kettering in NY. Initially their plan included Total Neo-adjuvant therapy of radiation/chemo/TME surgery. The lead doctor very explicitly outlined they would NOT be removing the two Common Iliac lymph nodes. The team at Whittingham center in Norwalk Connecticut is on that same plan and have NOT mentioned removal of the metastatic lymph nodes either.

Yep, it's all discouragement until you find a big league lead surgeon that is interested, willing and capable to push your case, and preferred tx. Our final choice was a Japan trained oncological surgeon where they routinely did LN dissections for cervical cancer. He appreciated my research on Japanese oncology papers. When I told him about my wife's initial "neoadjuvant" necrosis event, he was extra interested.
I studied and prepared for each new interview to state her case better and better.
No. No. NO. No. No, maybe, then yes. Yes enthusiastically.

Our second place, initial choice was an alum from MD Anderson, but he was hesitating (the no/maybe thoracic guy, I had to spontaneously get an outside radiology opinion on LN-aortic non-involvement), far less flexible, capable, and experienced than our final choice. Our first place/final choice surgeon was more positive, more supportive, and more ready for unplanned difficulties, like an aortic block cut and patch for LN involvement if necessary. Just what we wanted.

Still there's backbiting and potential interference even then.
e.g. our insurance's (dis)approving consultant (one of the hospital's staff surgeons) was a "Dr No" except that our surgeon was like god to all the rest for several large hospitals around, kind of a national champ, so although the insurance consultant was being negative about my wife's PALN surgery he signed off anyway. Regular chemo and RT folks were still eager to assert tx primacy, too.

Finally, I recall reading a Japanese study as regards my exact situation i.e. metastasis in the Common Iliac lymph nodes where they looked at patients who had surgery to remove said lymph nodes versus patients who did not and the result was no observable improvement in overall survival rates.

illiac nodes are lower down than para-aortic.
Usually the drs outlook is that LN higher up are harder to get and worse for cancer spread risks.
There are often a lot of pitfalls or qualifications in negative statements like "no significant" improvement. After comparing everything, often they just reflect bias, poor protocols, positives masked by the large std deviation of small sets, and/or lack of talent. When dealing with small heterogeneous datasets with many effects, the better means of analysis is modeling not simple zero/one dimensional elementary statistics.

Question: Does anyone have links on research related to distant lymph node removal?

It's a series of western papers since 2010 and mostly asian/japanese surgery or RT before that. Some earlier japanese papers (pre 2011) quoted size and NED/failure stats with UFT (oral chemo) done out to three years of oral chemo.
The typical western LN papers since 2010 often try to establish limits for significant LN (or sites!) size and number for candidate surgeries. This is because "standard" has been so wrongheaded about the perioperative conditions needed to suppress metastasis, recover, and be successful for a higher metastatic LN count. Our surgeon, although pleased at her long survival, still did not think she could be cured when followed up at six years post surgery. She eventually proved everybody wrong, although it took 7 years immunochemo after surgery #2.

I have not read ($$) the recent paper Peregrine linked but I have seen a fair number of its referenced papers (a common paper pool, mostly since late 2000s) - they replow the ground in similar but slightly different ways and modalities. Perhaps it's advertising, a "we'll take up to 4 big ones" group vs "we'll take up to 2 big ones" groups +-some chemo. By "big ones" (my argot for "significant size" LN, or with 1-2 LN sites, like my wife's conglomerated cluster), they'll usually set 10 to 15mm short diameter as a "significant" LN size. So by CT scan counts, my wife had perhaps one big met ~36mm depending on hospital readers, whereas my radiologist said two, 1.1 cm + 3 cm. The physical reality was a conglomerated cluster ca 6.2 x 3.1 cm with three big (~2cm) LN sticking out 40%-60%, and about 10-12 small cancerous LN (1 - 7 mm) inside (three more LN mets inside a quarter section for the official pathology, from a bulging bag of BBs~4-5mm + micromets[1-2mm]). The big LN had extensions. Outside the operating room, I studied/stared at that conglomerate for several minutes. So on post-op interview at 5 days, our surgeon was panicky about my wife getting on chemo immediately, not after 2-4-6 weeks wait (wow!). Since we had tracked detailed blood work, I was not overly precommitted to focally contained LN mets for success, we just needed cooperative medical support to get the PALNs out as well as possible. We were ready and going with oral chemo at 24 hours after a favorable surgery and recovery, with post surgical IV vitamin C started ASAP, daily for a little while.

I might point out the lung met analogy for non-standard surgeries.
In the most of the US, with more than 5-7 lung mets, surgeons will write you off.
Go to East Germany for the Rolles' laser resection and they've done successful cases with more than 100 lung mets removed.

Question for RP specifically: When you write of "preparing" for surgery, what exactly do you mean? I do currently try and maintain the highest level of fitness I can, and exercise at least 4 times a week, and my body did recover faster than normal from a double hernia repair I had last August. Is that what you mean or are you talking about taking daily Xeloda for months before surgery along with other aspects

All our treatment/chemical/nutrient extras, blood panel conditioning, and support personnel were in place and ongoing.
Immunochemo closer in to surgery is one potentially favorable aspect to LN suppression. Modified Xeloda use is now possible to extend what my wife did so comfortably with UFT.

No individual hospital regimes are optimized for LN success, so our final support plan was optimized off the cumulative of medical interviews, specific experience, extra data, and global papers.
You have to be your own advocate, and enforcer.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements


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