Solitary lymph node metastasis: treatment options

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I_will_fight
Posts: 114
Joined: Mon Jun 29, 2020 3:38 pm

Re: Solitary lymph node metastasis: treatment options

Postby I_will_fight » Tue Jul 26, 2022 5:03 am

skb wrote:Dennyp,
Thanks for your concern, Dennyp.

A biopsy was done on lymph node which was positive. But when lymph nodes were removed during surgery, they were negative for adenocarcinoma.

Something is off. Either the biopsy was wrong. Or the pathology study of lymph nodes removed during surgery was wrong. If lymph nodes had no cancer, why put me on 6 months of Folfiri??

I had a horrible surgery.
Still cant walk properly after 9 months
Still have some brain fog from chemo

I dont know if the surgery was warranted.
I feel wronged



Wow normally getting a pathology that is negative for cancer is good news, but so sorry to hear the surgery and treatment were so horrible.
46 yo male Spain
06/2020 - 6cm T3N0M0 CC splenic flex
3 and 4 mm lung ground glass
lymp 0/37
dMMR MSH6
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, optimistic surgeon.
11/20 - 4 x CAPOX completed.
12/20 - Clear colonoscopy
02/21 - MRI liver lesion unchanged.
11/21 - Clear CT
02/22- Colonoscopy: Sessil polyp 3mm
05/22- Clear CT
06/22- Negative Signatera
12/22- Negative Signatera
01/23- Clear CT

skb
Posts: 97
Joined: Tue Mar 28, 2017 2:00 pm

Re: Solitary lymph node metastasis: treatment options

Postby skb » Tue Jul 26, 2022 9:42 am

rp,
I have answered your questions to the best of my ability.

rp1954 wrote:I'm working on a long answer of cumulative experiences.

Could you fill in some of the story gaps running up to surgery and chemo?
What kind of direct conversations and outside consults did you have with various surgeons before surgery.
Did you repeat our stories to them in the search for options?
what kind of uncertainties did you have and their changes/resolution in the run up to surgery?
What serial CEA readings (as well as any CBC, ALP, GTTP, LDH and CA199 panels) did you have in 3-4 months before surgery? (and after)
did you ask for (or they used) substitutions on opiates for surgery; cimetidine for proton pump inhibitors, and celecoxib for post surgical pain?
What kind of conversations and consults did you have with various oncologists before chemo actually started?
How many weeks after surgery before chemo?
what was your view of the hospital and doctors' stature and (special) quality before surgery and did you feel like there was much choice (vs work, timing, distance, big city/medical center access, HMO/insurance)?


-------------------------

Question: What kind of direct conversations and outside consults did you have with various surgeons before surgery? Did you repeat our stories to them in the search for options? what kind of uncertainties did you have and their changes/resolution in the run up to surgery?
I had conversation only with the one surgeon who performed my surgery. Now I regret it. During my prior diagnoses, I always sought second opinion at Mayo (which is only an hour's drive from here) but I did not take second opinion this time. I regret it badly now. My surgeon at the University of Minnesota is highly qualified and had great reviews and had known my case for 5 years. I trusted her. Having such a great surgeon close to where I live seemed like a good option. With this one surgeon who performed the surgery on me, I had a list of questions about the procedure and complication rate. She seemed very confident and did not give an impression that this would be a complicated surgery. At the time of surgery, I thought a lymph node had metastasis and removal of it would be simple and straightforward. But the surgery went 10 hours. The surgeon was hunting and pecking for cancerous tissue repeatedly.


Question: What serial CEA readings (as well as any CBC, ALP, GTTP, LDH and CA199 panels) did you have in 3-4 months before surgery? (and after)
CEA- Oct 2020 - < 0.5
CEA- Jan 2021- 2.1
CEA- July 17, 2021- 15.6
CEA- July 22, 2021 (repeat measurement after a week)- 17.1
CT- July 2021- Clear scan, no evidence of metastatic disease
Colonoscopy- Aug 2021- clean- no evidence of disease
PET- August 2021- one hypermetabolic lymph node (right obturator lymph node)
Biopsy- August 2021 -lymph node is positive for metastatic adenocarcinoma
Surgery- Oct 1, 2021- pathology finds lymph nodes have no cancer, some nearby tissue had cancer!
CEA- Oct 6 2021 - 1.6
CEA - Jan 24, 2022- 0.6
CEA - Feb 7, 2022- 0.9
CEA- April 25, 2022- 0.8

CEA measurements until and including Oct 6, 2021 was performed on a Siemens device and since then, on an Abbott device
Other than CEA, only CBC readings were taken before surgery, It was normal.

CT result- April 29, 2022- No evidence of metastatic disease in the chest, abdomen, or pelvis.


Question: did you ask for (or they used) substitutions on opiates for surgery; cimetidine for proton pump inhibitors, and celecoxib for post surgical pain?
I am not sure, I had oxycodon prescribed after surgery, which I used for two weeks. I did not have much pain in the abdomen after the surgery, the pain was neuropathic pain on my foot for which I took Gabapentin for six months following surgery. Now the pain is gone, numbness and lack of dorsal flex (foot drop) persists.

Question: What kind of conversations and consults did you have with various oncologists before chemo actually started?
I only met with the one oncologist who has been treating me for five years. He was the one who prescribed Folfox for me in 2017. He understood my case. His opinion was to try Folfiri for two reasons (i) It is different from Folfox which I already tried in 2017 (ii) hitting the body hard with chemo would reduce chances for recurrences. So he prescribed 12 rounds of Folfiri which I thought was too much. I asked him about it but he was firm in his recommendation. He initially thought that he might add ongoing chemo but after seeing CT and CEA results from April 2022 (which he called excellent), did not prescribe further chemo.

Question: How many weeks after surgery before chemo?
Four weeks. Surgery was on Oct 1, 2021 and Chemo started the first week of November 2021. I was very weak and had had bowel control issues at the time of the start of chemo. But I decided to bite down on my difficulties and start the chemo to improve my chances of living longer. Now it is all a blur.

Question: what was your view of the hospital and doctors' stature and (special) quality before surgery and did you feel like there was much choice (vs work, timing, distance, big city/medical center access, HMO/insurance)?[/quote]
Both the oncologist and the surgeon were very cordial and supportive before and after the procedures. They have fellowships from Johns Hopkins, Cleveland Clinic etc. Both are teaching faculty as well. I had consulted a radiologist too but she said that the new tumor was in the same field as the prior radiation in 2017 and so it is not ideal to radiate there again. These three people met at a tumor board meeting at the hospital with other doctors and decided on my treatment plan. However I have alienated the surgeon now with my repeated communications with her office regarding my post-surgery complications. I also asked her why the lymph nodes removed during surgery had no cancer but the PET and biopsy indicated it. She responded that images are images and do not have 100% accuracy. I took time off work during surgery and six months of chemo. I was able to return to the same job, fortunately. This cancer center is about 15 miles from my residence. So I did not have much travel issues. But I could not drive after the surgery for many months due to 'foot drop'. My wife took me to most appointments. At other times, I used Uber. Now I have learned to drive with my left and right feet, the left foot compensating for right foot's issues. I did not have much trouble with insurance. I could have consulted more surgeons but I felt that time was slipping away and the more I wait for surgery, the more the cancer would spread. I was very upset and had lost my energy to run after more surgeons. I had trouble with Folfiri. I lost all hair, became bald and had frequent bowel issues- sometimes it was diarrhea, sometimes it was constipation. There were some accidents.


My continued walking problems (I use a walking stick now and cant walk fast) and my poor bowel control in the morning (up to 10 am) have me frustrated. These are due to two nerves injured during the surgery. EMG tests say that the nerves were injured but not severed. I am double thinking everything, overanalyzing. Perhaps all my treatments were correct and were the best course of action for me. I know that I have been more fortunate than many cancer patients in the world and I should be grateful for the treatment I received. I am not a very outspoken person. Sometimes I think that this trait has prevented me from being a very good advocate for myself.
3/21/17: Dx T3N0M0-mid rectal 4.5cm
4/18 to 5/22/17: chemoradiation- Xeloda and daily radiation (25 doses)
6/28/17: clean biopsy, clean scans
8/09/17: MRI - no evidence of tumor, no surgery, starts wait and watch
8/17/17 to 12/1/17: Folfox
8/19 VATS wedge - 1cm lung nodule
7/17/21- Clean CT, CEA 15.6 !
8/24/21- PET , biopsy finds metastasis along obturator lymph nodes
10/1/21- Surgery to remove metastasis , 12 rounds of FOLFIRI -ended 4/22
4/15/22, 9/6/22. 1/20/23- Clean scan, normal CEA

rp1954
Posts: 1688
Joined: Mon Jun 13, 2011 1:13 am

Re: Solitary lymph node metastasis: treatment options

Postby rp1954 » Tue Jul 26, 2022 12:04 pm

First, let me say I empathize with your doubts about decisions and outcome.

My mom was operated on twice in one summer in the early 60s in a small city, 100,000+. We nearly lost her.
First an exploratory surgery (horrors now superceded, largely by various imaging and tests) and then a protracted operation by a youngish, over aggressive FMG ob-gyn that apparently bulled mom's operation through when his more senior partner, and my mom's primary doctor, was out of state for several weeks. For a while he was a real butcher in his career development, with many victims with unhappy, quietly scandalized families whispering. Her operation was similarly a long snipe hunt thru lymph nodes over 9 hours for nonexistant mets, where she "died" three times on the table and re-started. She suffered serious damage and complications during 2 months unsteady recovery in the hospital, at the point of dying with both kinds of out of body experience, going toward the Light, and the eiditic recorder in corner of the room observing everything. It was about 6 years before she recovered to a plateau, but still not well as before.

The surgery appeared unnecessary as it turned out - no cancer detected in the pathology work up.
Just some hot words from the senior dr when he got back, and not long after, disassociated from the senior dr.
----
Fast forward almost 50 years, and we are shopping for that 2nd surgery, for PALN. After several strikes and a line ball, we got a lead from one my wife's friends, from a large family of doctors, on who's best in the region. This was the top surgeon at the top hospital (duh!), specially trained in Japan, with thousands of LN dissections, where other local surgeons' arrogance melt or whither at this guy's name, including the insurance company's consultant surgeon (nasty and discouraging but he signed off on insurance's paper quickly). The "line ball" was an ex-MD Anderson thoracic surgeon at the previous generation's top hospital. "Our" surgeon teamed with another senior surgeon who would first try his robotic surgery station for a laproscopic resection. When adhesions slowed the robotic surgery, they switched to an open surgery where "Zorro" took the lead, they gutted her, got the para-aortic conglomerate out in under 45 minutes (35 min??) for my visual inspection, and they replaced her intestines. I was amazed, I had barely settled into the couch for a much longer wait.
----
Although your drs nominally confirmed the elevated CEA reading, my personal view is that they missed a lot of blood data for a such likely mCRC case.
We were pulling blood for chemo at three week intervals the previous year and two week intervals going into surgery for non-standard extra options and total awareness. Under favorable sampling conditions (low inflammation and cell damage), the extra tests might help resolve those questions up front and after. My advice to others is, do more consults (three per critical specialty if possible - difficult for working patients) and more bloodwork.

Surgeons often have surprises that require decisions in real time. We are largely at their mercy and skill.
Your surgeon will simply want to move on once she runs out of helpful answers, and especially if you are restive - a threat to her standing.
I think the lawyers would want a slam dunk case, and the recovery of any cancerous tissue muddies the judgement issue, likewise the elevated CEA at 15-17 that then returns to baseline of CEA ~ 1. Table time simply translates to risk and surgical injury.

For wound healing and recovery, we felt that enhanced nutrition, beyond "std", made a difference, including IV vitamin C and home made super"Ensure". There are number of nutritional claims for some neurological recovery that are nonstandard but that I found credible possibilties.

As for chemo, our surgeon indicated getting the major masses would likely improve or re-sensitize our oral 5FU formula.
I remain an advocate of ADAPT+++ for small residual masses as a potential option with low side effects. Similar chemo served us well too.
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 to almost nothing mid 2018, mostly IV C

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beach sunrise
Posts: 851
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Re: Solitary lymph node metastasis: treatment options

Postby beach sunrise » Tue Jul 26, 2022 5:54 pm

Absolutely agree with ADAPT+++.
Also, cleared it with my surgeon and potential thoracic surgeon who is also monitoring my scans (I have 2 nodes that have been there since dx but not growing) that to be proactive I will stop xeloda maintance for 24hrs before surgery if needed at some point and restart day after surgery along with celebrex, cimietidine and high dose vitamin C.
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 APR -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
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
3/30/23 14.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

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Thedruid
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Facebook Username: theDruid

Re: Solitary lymph node metastasis: treatment options

Postby Thedruid » Fri Nov 25, 2022 5:48 pm

Team, where can I get more info about the Adapt+++ protocol?
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX 08/18 - 2/2019
Liver met in 01/20. Stage 4. RadioAblation in 02/20
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy removed 04 PALN in 11/2021
Folfox (again) 11/21 - 05/22
Removed single lung met in 11/22
2 new "suspicious" nodules of 4mm in both lungs.. no growth until 04/23

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Jacques
Posts: 677
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

ADAPT+++

Postby Jacques » Fri Nov 25, 2022 6:57 pm

Thedruid wrote:Team, where can I get more info about the Adapt+++ protocol?

One way to get more info on the Adapt+++ protocol is to search rp1954's past posts with keyword ADAPT. The way to do that is described here:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57693&p=454654#p454654

Once you have the list of rp1954 past posts with keyword ADAPT then look for the posts that mention Adapt+++ and see what is involved. For example, the following post gives some of the background information

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65808&p=510124&hilit=adapt#p510124

As I understand it, ADAPT+++ is the original ADAPT protocol that targets colon cancer stem cells, but with an added selection of carefully chosen supplements given in a chronomodulated fashion.

Also, to get an idea of the kinds of foods and supplements that can be meaningfully added to the ADAPT protocol for improved outcome, you can read the relevant sections of this Life Extension Foundation article on colorectal cancer:

https://www.lifeextension.com/protocols/cancer/colorectal

You can also search for ADAPT in beach sunrise's past posts and look for the description of what is involved in her customized version of ADAPT++++

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=66006&p=510991&hilit=ADAPT#p510991
.

NOTE: The ADAPT+++ protocol is essentially a do-it-yourself (DIY) protocol whereby a patient, with the help of various Integrative Medicine specialists, will develop a customized version of the original ADAPT (capecitabine+celebrex) regimen by adding various re-purposed medications, foods, and supplements relevant for their particular tumor profile (mutations, tumor burden, MSI status, etc.).

Thus, for ADAPT+++, there is no "one-size-fits-all" protocol that everyone in a particular clinical stage can adopt. I think the usual way of arriving at a personalized version of ADAPT+++ is for the patient to find an Integrative Medicine specialist somewhere who can help design an appropriate protocol. In the U.S., there are several clinics that specialize in this kind of personalized service. For example:

Last edited by Jacques on Sun Nov 27, 2022 12:14 am, edited 4 times in total.

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beach sunrise
Posts: 851
Joined: Thu Mar 05, 2020 7:14 pm

Re: Solitary lymph node metastasis: treatment options

Postby beach sunrise » Fri Nov 25, 2022 11:30 pm

My ADAPT+++

ADAPT = Dr. Lins xeloda/celebrex combo

+ equals extra base rx's of high dose IVC at 75g twice a week, Ivermectin at 36 mg every 72 hrs, Itraconazole, Mebendazole (not sure if Rp agrees with azoles with xeloda but maybe he will chime in), trying to convince onc now to give Clindamycin a try.

+ equals supernutrition to reach max cell health and detoxify the body of the unwanted. Common things are PSK, sulforaphane, vitamin E with selenium, niacinamide, niacin, vitamin D3, K2,theraflavin, B complex, melatonin, astragulas, zinc. flavanoid drinks with fruit powders like black raspberry, strawberry, bilberry, pomegranite, pineapple. Second morning cup of coffee includes geinko bilboba, astragulas, ginseng, dandelion, Grapeseed extract, ashwaganda, lemon peel, phyto-cyto 7 days on 5 days off. Also, resveratrol and beta glucan 1,3 1,6. Whey protein and oat fiber. R-ALA. Butyrate.

+ equals the cancer pathway blockers based on bloodwork. My targets are IL8, Wnt, vWF and a few others in the LDH 1-5 area (LDH 1 & 2). I take Vascustatin, Imm-kine, benagen, onkobel pro, apigenin, Sea Iodine, genestein, CoQ10, IP6, IsoQuercetin, Siliphos, Fisetin, Berberine, Turmeric, Tri-salts, Hepagenesis, TCMs (3) to hit the target problem panels. VEGF, EGFR and those common ones have not been my problem so far.

Right now I am hitting the small lung nodes with higher dose vitamin D3+K2 (MK7 form), NAC, Bromelaine, Aloe Ace, Reishi, Coryceps, ginger, higher dose vitamin C on IVC off days (was taking 10g bumped to 15g now)

I might be missing a few things as I dont have my protocol in front of me. I am at work at the moment. If I think of anything I will comment again.
Last edited by beach sunrise on Sun Jan 15, 2023 11:27 pm, edited 8 times in total.
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 APR -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
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
3/30/23 14.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

Rock_Robster
Posts: 780
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Solitary lymph node metastasis: treatment options

Postby Rock_Robster » Sat Nov 26, 2022 6:59 am

Solid answer. Saved
41M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA Nov18: 14>2
Jun22: 5
Dec-Apr23: 17>22
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, tiny lung mets
3/22 PVE, lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Stable. Lymph/peri undetectable
4/23 Minor progression. XELIRI+Bev

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beach sunrise
Posts: 851
Joined: Thu Mar 05, 2020 7:14 pm

Re: Solitary lymph node metastasis: treatment options

Postby beach sunrise » Sat Nov 26, 2022 8:09 pm

I interviewed with all the above mentioned intergratives and NDs.
I found Belanger's niche is molecular which is so important to get to the root of bloodwork.
Mederi is about whole body which is good and I do use him every now and then for elixers, teas and advice when I think he might could add to my case.
Life Extension is good aslo and FREE consults. Better have your questions ready upfront as the free consult doesn't last long. They have been doing this a very long time and know their stuff.
Mark Rosenberg, boca roton FL is a constant researcher and a so out of the box thinker.
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 APR -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
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
3/30/23 14.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

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Thedruid
Posts: 18
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Solitary lymph node metastasis: treatment options

Postby Thedruid » Wed Nov 30, 2022 8:42 am

Hello, team

Thanks to you all about he Adapt+++ protocol. I think I will have a lot to read... and then maybe some questions to ask :-)

theDruid !
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX 08/18 - 2/2019
Liver met in 01/20. Stage 4. RadioAblation in 02/20
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy removed 04 PALN in 11/2021
Folfox (again) 11/21 - 05/22
Removed single lung met in 11/22
2 new "suspicious" nodules of 4mm in both lungs.. no growth until 04/23


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