Re: New guy with old questions.

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Rock_Robster
Posts: 1028
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
3/24 VAXINIA (CF33 + hNIS) trial

JP66
Posts: 24
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: 1855
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: 24
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: 1028
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
3/24 VAXINIA (CF33 + hNIS) trial

rp1954
Posts: 1855
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

JP66
Posts: 24
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: New guy with old questions.

Postby JP66 » Thu Feb 29, 2024 5:09 pm

I consider my self fairly diligent in online homework when it comes to my health, but I have to admit your research and advocacy on behalf of your wife are simultaneously daunting and inspiring. Hopefully I can pick up on some of what you have learned before the time comes to decide on which surgery to push for.

Fortunately, I'm halfway through chemo and the side effects have been minimal and mostly on day 1-3, but I'm still at only 80% of max on the oxaliplatin although 100% on irinotecan. (spelling)

Anyways, just checking in today and wanted to say thank you for all the info.

Now to get reading :D
- 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: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: New guy with old questions.

Postby rp1954 » Thu Feb 29, 2024 7:01 pm

JP66 wrote:...your research and advocacy on behalf of your wife are simultaneously daunting and inspiring.

If you do the simple conversational interactions I've suggested with (y)our whole blood work, it shouldn't be so daunting - it really cuts the reading way down and allows normally delayed sequential actions sooner and faster. Like my wife did, learning by doing was a lot faster and easier and she could understand her better bloodwork for herself.

Hopefully I can pick up on some of what you have learned before the time comes to decide on which surgery to push for.

Probably the fastest way to learn is get your bloodwork now, share it all, and ask questions.
It should focus and reduce your reading requirement on a lot of important miscellany and obscure stuff.
We multi-tracked preparations where a lot of stuff overlaps. Actively doing is learning and preparing more effectively.

Fortunately, I'm halfway through chemo and the side effects have been minimal and mostly on day 1-3, but I'm still at only 80% of max on the oxaliplatin although 100% on irinotecan.

For us, being ready sooner, everything in place and running, was important because "stuff happens".
For us, doing IV vitamin C routinely meant we had more options with our own nurse ready to go, and ready to be world class.
For us, having oral chemo stockpiled was key to dodging surprise shortages that would have seriously knocked my wife off chemo. For you, it might be the only way to actively bridge chemo directly to surgery since standard protocols tend to create and leave gaps between chemo and surgery or miss open windows. On Folfoxiri for LN, (imo) one of the problems is them burning too long with exhaustion/injuries when they should have switched to continuous immunochemo for healing AND inhibition of spread, and done surgery sooner, with the cancer spread by floaters and small stuff more directly inhibited.
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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beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: New guy with old questions.

Postby beach sunrise » Fri Mar 01, 2024 7:12 pm

Reading your post and comments I believe you are on the right track.
For surgery I will say vitamin D levels drop dramatically so think about that. Inflammation can and most likely sky rocket so keep that in mind too. Both of these are important for recovery.
I went to Germany for Rolles laser lung surgery and it was successful. Maybe reach out to them on your case.
IVC is so helpful on many levels from wound healing, inflammation to cancer kill.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

JP66
Posts: 24
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: New guy with old questions.

Postby JP66 » Tue Mar 05, 2024 9:19 am

Two thoughts for today. First I will list all the items being tested every 2 weeks and ask if I should create a spreadsheet with these items or some sub-set and if there are tests not being performed that people here would recommend.

Items now being checked are: WBC, RBC, Hgb, Hct, MCV, MCH, MCHC, RDW CV, RDW SD, platelets, MPV, Neutro %, Neutro Absolute, Lymph %, Lymph Absolute, Mono %, Mono Absolute, EOS %, EOS Absolute, Base %, Base Absolute, CEA, sodium, potassium, chloride, HCO3, Anion gap, BUN Creatinine,eGFR,eCrCL, glucose, Ca, Mg, protein, Albumin, Globulin, Bilirubin, Alk phos, ALT, AST, Lipase

And, then on a totally separate note I found some more very very interesting write ups on lymphadenectomys:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8898625/
https://link.springer.com/article/10.10 ... 24-10730-0

Definitely need to start having some conversations with some surgeons.
- 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: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: New guy with old questions.

Postby rp1954 » Tue Mar 05, 2024 12:19 pm

JP66 wrote:....if I should create a spreadsheet with these items or some sub-set and if there are tests not being performed that people here would recommend.

A well formatted spreadsheet saves time, helps clear thinking, and communicates faster and better.
I just spent some minutes updating it every few weeks, and about 15-20 minutes on her changes and next steps. Then several more weeks of reading, research, mapping and planning out various possibilities. :shock: (goggle eyed)
We had the full spreadsheet, in all its glory after 6-7 years, a 12+" trifold (three sheets of 8.5" x 14" cut down and overlapped) and various shorter, summary versions over time. The big, hi-res screens of today should be a nice improvement; I preferred a 17" laptop to smaller laptops.

Items now being checked are: WBC, RBC, Hgb, Hct, MCV, MCH, MCHC, RDW CV, RDW SD, platelets, MPV, Neutro %, Neutro Absolute, Lymph %, Lymph Absolute, Mono %, Mono Absolute, EOS %, EOS Absolute, Base[ophils] %, Base Absolute

CBC with differentials (and platelets). Kind of "standard" with minor variations and added services.
Some places you have to pay to add platelets to get the actual platelet count, vs merely an (in)sufficient, + or -.

sodium, potassium, chloride, HCO3, Anion gap, BUN Creatinine,eGFR,eCrCL, glucose, Ca, Mg, protein, Albumin, Globulin, Bilirubin, Alk phos, ALT, AST,

a common, fairly standard blood chemistry - aka Comprehensive Metabolic Panel (~the Medicare version); some places have a slightly bigger "CMP"
To me, it's missing some panels that we found useful: e.g. LDH, hsCRP, ESR, ceruloplasmin, GGTP, fibrinogen with mild chemo - heavy chemo is likely to elevate these from cumulative injury during a long treatment series. Even 40+ years ago, CRC patients would occasionally get more extended blood tests, like a "Chem25". ( I have some billing records).

Budget and information pressures usually dictate the final choices.
I wanted a good baseline survey, a smaller frequent maintenance level of blood tests, more periodic tests (1-4 months). and annual or event driven levels of testing.
See prior lists and discussions on initial blood survey, then cut down for the biologically relevant ones, and budget.
CEA - the standard CRC marker in the US. Some other countries add a routine CA199; failure to do any is a marker for incompetence.
Lipase - I assume this is an injury or progression monitoring, or special needs item.

And, then on a totally separate note I found some more very very interesting write ups on lymphadenectomys:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8898625/

The japanese surgeons apparently have (had?) a longer, grueling internship (more specialized?) for what they called sharp dissections, and clearly looked at the US practice levels with some disdain in some papers, ~2000-2011.

As for longest OS, with curative cumulative surgeries and multimodal treatments, what's really missing is the "glue" of better testing, better biochemical/nutrient support, and aggressive immunochemo.
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

PainInTheAss
Posts: 678
Joined: Tue Jul 02, 2013 3:08 am

Re: New guy with old questions.

Postby PainInTheAss » Fri Apr 05, 2024 6:03 pm

JP66 wrote: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


I'm not sure if you're still following this thread, but I had a lymph node "light up" near my sacrum that they told me could not be removed with surgery and that I was as close to a stage IV you could be without actually being a stage IV.

My onc told me that we would check it again after treatment and see if it was still there.

I asked what options there were to remove it if we couldn't do surgery. He mention a number of things, even freezing it. I think Gamma radiation was an option.

Once I could finally do another PET scan to check it after treatment, it was gone and I'm still NED 11 years later.

I've always been worried it would came back since they couldn't take all of it, but if your cancer is the type that is programmed for cell death, chemo and radiation alone will kill all of it. This is why people with a complete response to chemo-rad have such a high survival rate.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation


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