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What's an acceptable delay for lymph node resection?

Posted: Thu Feb 08, 2018 11:44 pm
by jp81
Hello all,

My dear mom had a T3CN2M0 diagnosis, and we did excision surgery in August 2017. After a Jan 2018 CT scan showed a suspicious para-aortic node of 20x8mm (and a few others slightly enlarged), we did a whole-body PET scan and it showed a single node as positive.
The surgeon said it could be removed surgically, so that's what we're leaning towards. But surgery is only possible in 2-3 weeks.

I have two questions:
1: Mom has been off chemo for a month now. I am worried about whether the delay (without chemo) will mean further spread while waiting. Is 2-3 weeks a generally acceptable risk?
2: I have gone through posts discussing para-aortic recurrence on ColonTalk. But if anyone has any valuable insights to share, kindly do so.

I have no words to thank the people on the forum. I'm forever grateful.

Re: What's an acceptable delay for lymph node resection?

Posted: Sat Feb 10, 2018 10:17 am
by rp1954
I would consider at least getting some kind of chemistry on the PALNs, like the Life Extension stuff (cimetdine, celecoxib +specific supplements) For my wife, there was no substitute for oral 5FU too. Xeloda is the only oral 5FU drug in the US. My wife carried a PALN cluster for over a year, but we kept various chemistries on them the whole time.

WIth IV vitamin C infusions and some wound healing related supplements, she used her oral chemo to within a day before the surgery for the para-aortic lymph nodes, rather than the normal 3 weeks for 5FU. However your surgeon is likely not that conversant/friendly with perioperative chemo. I had found 10-12 papers, mostly Japanese papers translated, that showed perioperative 5FU chemos (close in before/after surgery) were feasible, and even beneficial. At least one paper had chemo for research purposes during a successful surgery. My wife is far and away the most successful of her doctors' patients with seriously metastatic para-aortic lymph nodes.

I've commented a lot on using more blood markers and nonstandard adjuncts, as we do. My usual initial suggestions are for newly dx'd patients with colon cancer, facing surgery before chemo. If you get the additional blood work you'll have something better to discuss and work with.

Some of us, have seen less distortion with milder, continuous chemo formulas and selected supplement routines. My wife seems well guided with extra blood markers, smoother data, and fewer scans. Our experience with resected metastatic para-aortic LN has been that you have to keep enough chemo and immune intensity on the residual cancers to keep the markers down. Below some threshold, the markers start to sprout and we have to re-up the nonstandard (but mild) stuff (e.g. celecoxib, PSK, IV vitamin C etc). Mild, continuous oral chemo is a given, or the markers start to sprout... and they are a little harder to beat down. Also, when they sprout, the markers may shift, e.g. CEA and AFP are fine right now, but CA199 is elevated; about seven years ago, CA199 was the first marker to retreat to baseline on improved chemo where CEA was still elevated, until we got the mets cut out.

Re: What's an acceptable delay for lymph node resection?

Posted: Sat Feb 10, 2018 5:32 pm
by chrissyrice
That's an acceptable amount of time ... I had the same recurrence in 2015 and successful surgery. There is a normal wait time between surgery and chemo and 2 to 3 weeks is not too long. My lymph nodes grew slow so it had been there for a while before it was even seen on a ct scan.

Best of luck

Chrissy

Re: What's an acceptable delay for lymph node resection?

Posted: Sat Feb 10, 2018 5:52 pm
by Lee
jp81 wrote:
. . . .Mom has been off chemo for a month now. I am worried about whether the delay (without chemo) will mean further spread while waiting. Is 2-3 weeks a generally acceptable risk?.


I was told chemo (5FU) will hang around your body for about 7 weeks.

Lee

Re: What's an acceptable delay for lymph node resection?

Posted: Sun Feb 11, 2018 9:50 am
by rp1954
Avastin is typically cause of the 6 week margin before/after surgery, beyond 2-3 week margins for 5FU. We used IV vitamin C and cimetidine instead with the 5FU for KRAS mutant inhibition. Because we were well prepared, used supplments for better wound healing, the surgery was successful and uncomplicated, we shrunk that preo-op/post-op margin to a day on either side of surgery with 5FU.

Re: What's an acceptable delay for lymph node resection?

Posted: Sun Feb 11, 2018 12:28 pm
by jp81
We're hoping we'll get our surgery dates after the tumor board meeting on Thursday. Mom has already been off chemo for a month and in good health; so she's well prepared for surgery if they decide to go ahead.
Hoping for the best. Thanks everyone.

Re: What's an acceptable delay for lymph node resection?

Posted: Tue Feb 13, 2018 12:44 am
by jp81
Mom's CEA has decreased to 4.36 now (from 6 three weeks back), with recurrence in a single 16x14mm para-aortic node (FDG update: SUV max 13). From what I read, lower CEA is a positive sign for attempting resection.

While talking to doctors, I was hoping they will unanimously agree on Para Aortic Lymph Node Dissection (PALND), but got two opinions instead:
1. Surgical Resection with Chemo/Radiotherapy
2. FOLFIRI with Avastin (older doctor; experienced but might lean towards conventional choices?)

Mom's last surgery was in August. Are there any complications with having a surgery immediately above previously resected area?

We'll be deciding this week. Will share all that we learn.

Re: What's an acceptable delay for lymph node resection?

Posted: Tue Feb 13, 2018 2:28 pm
by LPL
Hi jp81,
You wrote:
Mom's last surgery was in August. Are there any complications with having a surgery immediately above previously resected area?

If you look at my signature you will see that my husband had surgery in March, May and then again Sept 1st. In Sept the surgeon cut him open using part of the same entrance as in the previous surgeries. There were no problems for hubby healing the wound again.
Good Luck to you!

Re: What's an acceptable delay for lymph node resection?

Posted: Wed Feb 14, 2018 8:07 am
by Brearmstrong
I have 2-3 para aortic lymph nodes that lit up on PET (12 uptake) and my CEA rose from 3.6 to 8.1 in just 30 days after ending Folfox. I am doing 6 months of folfori w/ avastin. IF the nodes don't grow or IF the cancer doesn't spread, my surgeon said he can remove them. I think he's worried about agressive spread so really wants me to stay on folfori for 6 months- I'd like to have them taken out NOW but understand the risk. He said need to be off avastin 6 weeks and chemo 3 weeks which seems reasonable. Please let us know how it goes!

Re: What's an acceptable delay for lymph node resection?

Posted: Thu Feb 15, 2018 12:25 pm
by jp81
Hi Brearmstrong,

For Mom, they just decided to do surgery first followed by chemo. Surgery is set for February 26th. Having said that, your treatment plan seems quite logical too - and both could give us the right results. We wish you and your family the best.

I'll post later how the surgery goes. Hang in there for a couple of years, there are very promising treatments in the pipeline.

Re: What's an acceptable delay for lymph node resection?

Posted: Fri Feb 16, 2018 1:25 am
by rp1954
jp81 wrote:...with recurrence in a single 16x14mm para-aortic node (FDG update: SUV max 13)

At that SUV, you really, really, really want to get CA19-9, LDH added to the CEA, once or twice before the operation and then 5-7 days after.
To be more clear about potentially changing / interfering marker conditions, hsCRP, ESR, HgbA1C should be added to normal CMP, CBC with dif etc.
I would ask the doctor once. If dr's not agreeable with alacrity, we pick up the phone and order them ourselves. You can too.

While talking to doctors, I was hoping they will unanimously agree on Para Aortic Lymph Node Dissection (PALND), but got two opinions instead

Unanimous ?!? Ha, that's a good one. We interviewed around, got many different opinions in 2011, and got more background info.
Only an outstanding surgeon doing the operation really counts.

1. Surgical Resection with Chemo/Radiotherapy

We chose surgery with immunochemo - daily oral chemo + cimetidine, later with celebrex plus potent levels anticancer supplements.
What RT target, source machine and field is a big question. We steered a wide circle around the eager RT docs, others said too big or possibly too big and serious side effects. (IRL, the PALN cluster turned out to be way too big)

2. FOLFIRI with Avastin (older doctor; experienced but might lean towards conventional choices?)

That's basically all he has to offer per NCCN and ASCO. Probably might as well be a gas station attendant. Experience and fundamentals seem to show cyclic heavy chemo are a fundamentally limited approach for uneradicated distant LN...

Brearmstrong wrote:I have 2-3 para aortic lymph nodes that lit up on PET (12 uptake) and my CEA rose from 3.6 to 8.1 in just 30 days after ending Folfox.

My wife's CEA would jump ~5 units in less than 14 days, every time a small LN (say 2-6mm) blew up to a big one, say 20-23 mm, just by 1/4 reduction of her minimum daily chemo dose.


....I am doing 6 months of folfori w/ avastin. IF the nodes don't grow or IF the cancer doesn't spread, my surgeon said he can remove them. I think he's worried about agressive spread so really wants me to stay on folfori for 6 months- I'd like to have them taken out NOW but understand the risk. He said need to be off avastin 6 weeks and chemo 3 weeks which seems reasonable....

Actually if you were to replace the Avastin with IV vitamin C, high dose vitamin D3 and vitamin K2, and then perhaps replace the irinotecan with celebrex and/or cimetidine until close to surgery, I'd vote for sooner than later too. Some PALN are hard to kill, surgical removal is the sure answer.

The problem with standard treatment is that they are simply not aiming at stopping the metastases' spread via milder continuous treatments like immunochemo (e.g. ADAPT plus immune building supplements and mild adjuncts). The sooner you can cut the little grenades out, the better - after a year, "ours" were starting to break out through the LN wall, that's bad, very bad. You need enough (immuno)chemo to stop the microclusters' spread and transition, and to preferably stop any micromet LNs' blowup from 2-4 mm to ca 20mm.

Btw, "no" really means you need to keep shopping and talk to better prepared or better suited surgeons if you can't turn them around on the PALNs. Also practice can make you a better presenter.

Re: What's an acceptable delay for lymph node resection?

Posted: Sat Mar 03, 2018 2:42 am
by jp81
Thanks rp1954. Mom had started Vitamins based on your suggestions. We're discussing all your recommendations with her physicians this week. Immensely grateful.

Now for how it went. The surgery had to be converted to open, since the node was very close to the ureter. She's getting discharged today (1 week from surgery). The pathology report says that malignancy was found in 1 node out of 12 retrieved. There's a tumor board meeting next week to discuss findings and suggest chemo regimen.

Re: What's an acceptable delay for lymph node resection?

Posted: Sat Mar 03, 2018 9:48 pm
by rp1954
Were you able to add CA199, LDH tests and cimetidine before the surgery?

Re: What's an acceptable delay for lymph node resection?

Posted: Thu Mar 08, 2018 3:56 am
by jp81
Hi rp1954, unfortunately we weren't able to get the tests done. I had to be away for a bit, and it got missed out. We were just told that chemo begins next week, not sure what the regimen is. I'll post once I know, but most likely involves avastin since they sent the excised node for BRAF mutation tests.

Also wanted to add that mom had recovered quite well after open surgery, and is almost back to normal. Perhaps because of the vitamins. Thanks again.

Re: What's an acceptable delay for lymph node resection?

Posted: Thu Mar 08, 2018 4:18 pm
by Brearmstrong
That is wonderful that she bounced back quickly! I hope she is now NED forever!!!