Stg 4 para aortic and Iliac Lymph Nodes

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Achilles Torn
Posts: 120
Joined: Fri Dec 16, 2016 2:41 pm

Stg 4 para aortic and Iliac Lymph Nodes

Postby Achilles Torn » Fri Jan 06, 2017 2:33 pm

Hi guys,

I was expecting this (but still held a tiny amount of hope). My PET scan results 3 weeks after surgery came back....spread to para aortic lymph nodes and Iliac lymph nodes - largest being 2cm. Just wondering if anyone has any insight into the best way to fight these ? My Oncologist already told me to forget about surgery.

Please let me know if you have any advice.

Thanks
AT
Last edited by Achilles Torn on Fri Jan 06, 2017 8:51 pm, edited 1 time in total.
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 Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

Alessandria
Posts: 37
Joined: Wed Apr 06, 2016 3:18 am

Re: Stg 4 ParaArotic and Iliac Lymph Nodes

Postby Alessandria » Fri Jan 06, 2017 5:02 pm

Hi there

Sorry to hear about your PET result. I had a para-aortic node light up on a PET after my resection surgery in Feb 16. I had chemo and then radiotherapy on the area in question. I've had 3 clear PET scans since mid-chemo. Hoping it stays that way. Perhaps chemo & then radio could be an option? My advice would be to make sure you go on the most aggressive chemo you can, depending on whether your cancer has any mutations. I was on folfoxiri & avastin as BRAF+

Best of luck.

CLD
Posts: 206
Joined: Fri Mar 27, 2015 7:16 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby CLD » Fri Jan 06, 2017 9:16 pm

Sorry for the bad news. I have no advice, but I hope your dr is able to find a good chemo to help you get rid of these tumors. :cry:
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently

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CRguy
Posts: 10171
Joined: Sun Feb 10, 2008 6:00 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby CRguy » Fri Jan 06, 2017 10:16 pm

1. have the scans RE-reviewed by another Rad/Onc/ pathologist
... are they ACTIVE nodes or RE-active nodes post-op ?

2. consider 2nd opinion

3. IF surgery is a NoGo = >>> chemo

4. Biopsy ?????
why not ????

Get Oncs feedback because PET + is not always MET +

BE your own best advocate
BE AGGRESSIVE !

Harmony on the Journey
CRguy ... you know where to reach me bro'
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Achilles Torn
Posts: 120
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Achilles Torn » Sat Jan 07, 2017 1:48 am

Thanks so much for the advice. Al/Crguy.

They are adding Avastin now to my Folfox chemo which starts on Monday. I'm guessing thats standard pending the results of the mutation testing I requested which might open or close some chemo options for me.

Regarding the LN being mets...My oncologist read me the radiologist report over the phone. In my mind there is little doubt about the 2 Para-aortic nodes (size of 2cm and SUV over 5). The Iliac nodes were lower SUV (3.5) and size so there is a slight chance they are reacting to the surgery 3 weeks prior.

My Onc is going on vacation after today so I will be seeing a new guy anyways so I will start 2nd opinion discussions with him. I do plan on asking for a surgical consult regardless just to be certain they can't be removed (although that would wait till after Chemo anyways). I also asked if I could get into the BCCA POG (personal Oncogenetics program) based on a tip from one of CRguys older posts. Apparently that is a possibility in the future but they need a fresh met to test and currently I have nothing to resect (I guess thats a good thing).

Feels like the bad news train never stops sometimes....Went skating with my kids on a lake today during our rare cold snap....too bad I spent most of the time worrying about how long I will have with them.

Can't say enough about the information on this site and the help I've received.
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 Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

WarriorSpouse
Posts: 217
Joined: Tue Aug 16, 2016 9:02 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby WarriorSpouse » Sat Jan 07, 2017 12:52 pm

AT,
I am sorry to read of your situation... I am about ten years older than you and remember the days playing with my kids at that age who have no idea what is going on inside both your body and mind. I know these times are difficult for you and your wife.

Being young does have its advantage for you though... 1.) You are physically in better shape to handle an aggressive treatment plan of 5FU/Zeloda and Avastin every two weeks with one week off after your initial treatment plan is complete. My wife's experience with this treatment plan has been good and what I can see from this forum (search tools) it will almost double your life expectancy if your body handles the drugs well. Avastin made the PALN disappear (shrink) after the introduction for her treatment. She has been NED now for about two years. Two good years of parenting and memories for our family with more expected ahead.

My wife had similar PALN and VIRCHOW node issues and no other signs of metastases. YES they can do a biopsy on the left super clavicle LN to see if it is positive. It is a day surgery and it can be done the same day they put your chemo port into your chest. Ask about it and get it done before going on the Avastin, which is not allowed prior to surgery. Although this prognosis is different to most in the CRC community it is all that I know, because it is the only thing I have personally experienced caring for my wife.

My thoughts are with you and this forum is outstanding in all aspects of support, knowledge, and treatment advances that are being used around the world. Major cancer centers are also a big push on this forum for some of the best second opinions and confirmation of treatment plans. Many get their treatments locally and deal with the larger centers to confirm protocols and best practices.

We are here for you during your journey to better health and peace of mind. The search tools will give you a better history of what others have experienced with similar circumstances.

Best wishes and stay in touch.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

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CRguy
Posts: 10171
Joined: Sun Feb 10, 2008 6:00 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby CRguy » Sat Jan 07, 2017 3:13 pm

Glad you picked up on the POG info.
Keep pushing on that as it won't be first line go to for most of these Oncs
DESPITE it being a homegrown potential world beater .... and game changer !

Harmony
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Eternal optimist
Posts: 20
Joined: Sun May 01, 2016 9:26 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Eternal optimist » Sat Jan 07, 2017 4:22 pm

Hi there,

When i was diagnosed my illiac lymph nodes were enlarged (i dont know whether they lit up on the PET). They were still slightly enlarged before my surgery 9 months later, but have been normal ever since (12 months), so were reactive even before surgery or chemo. My tumour was in my sigmoid colon, from which the lymph nodes do no feed into the illiac so spread there for me would have been highly unusual I was told. They do go from the rectum into the illiac so depending on where your tumour was you can work out wheter they are more likely to be Mets.

I also have para aortic node spread, and did at diagnosis. Definitely get a second opinion on surgery- 1 had 1 yes and 1 no for surgery, the no was infact their opinion that the cancer would spread while off chemo forsurgery- which I weighed up and went ahead with the surgery. I am about to start radiation for more para aortic mets but i'm well, life is good 2 years after diagnosis, and I have seen my son grow from a baby into a little person who walks and talks.

Best wishes
Diagnosed age 34 in Feb 2015, sigmoid tumour & PALNs
CapOx Mar-Oct 15
Resection of colon and PALNs Dec 15 -T3a N2 M1a
Xeloda Apr- Nov 16
Dec 16 - PALN recurrence, Radiotherapy
Aug 17 - FDG uptake in para aortic and retro peritoneal nodes, peritoneum, ovary plus small nodues on lungs. Only enlarged PALNs and small lung nodules visible on CT, but possible spine mets seen.
Sept 17 Folfiri and Cetuximab
April 18 NED
July 18 -surgery to examine what turned out to be a benign peritoneal inclusion cyst

Achilles Torn
Posts: 120
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Achilles Torn » Wed Jan 11, 2017 8:37 pm

they can do a biopsy on the left super clavicle LN to see if it is positive.


(sorry If I used the quotes wrong....I'm a little new to this)

WS do you think I should ask for this despite no uptake on the PET. I get that there is likely further spread but not sure if I need to have it done. My port went in a couple weeks ago and I start Avastin in 2 weeks so its probably a no go anyway ?

Should I be exploring radiation SBRT on the 2cm node. 2 Cm seems really big for a lymph node.....

Thanks
AT
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 Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby rp1954 » Wed Jan 11, 2017 10:05 pm

We had several para-aortic LN up to 2.2 cm removed in a salvage operation, with continuous chemistries throughout.
"We" - I arranged it, without breaking any fingers... I try to engage interest
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

Achilles Torn
Posts: 120
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Achilles Torn » Wed Jan 11, 2017 10:13 pm

Thanks RP....was the pre-chemo able to shrink the nodes ? Where were you able to have the surgery ?

I know it won't be curative but I would like to try and get rid of the largest nodes if I can.

I also am concerned about tracking the progress of my current Chemo. My blood work pre-chemo came back within the normal range except for CEA at 2.8 (its not clear but one report on my medical file has be pre-surgery CEA as 3.5 but the lab report doesn't show it) so I don't have a baseline to track effectiveness. I have read a study where a PET scan can be used to determine chemo effectiveness within 2 weeks of Chemo but I am guessing my Onc won't be keen on that.

I know from reading your posts that you tracked CA19-9/ESR and LDH but these were in the normal range pre-chemo so should I just be wary of a rise in any of these numbers or is there another way ?
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 Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

WarriorSpouse
Posts: 217
Joined: Tue Aug 16, 2016 9:02 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby WarriorSpouse » Wed Jan 11, 2017 11:21 pm

Since you are already rolling with chemo and Avastin, I would just stay with the treatment plan. Chemo and Avastin should shrink the positive LNs and your next scan should confirm this, if all is working as planned. I only suggested the removal of the Virchow LN because it is accessible and is not close to the heart where most doctors get nervous to remove them.

My guess is that, based on your provided footer information, the treatment plan will not change if this LN is positive or not... You are going to get an aggressive treatment plan regardless and because of your youth, you should be able to handle the plan well. I am sorry that your "new normal" is not a fun road, but if you are as fortunate as my wife, you should adjust well and have many memories with your wife and kids for the coming years. Small steps equals many miles... See Brow Bagger's posts for some real motivation on his bike! :)

Keep using the search tools to learn more and look for similar people, such as my wife, to learn from along the way. You are in my thoughts and prayers. Keep us posted and good luck!
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby rp1954 » Thu Jan 12, 2017 2:13 am

... CA19-9/ESR and LDH....were in the normal range pre-chemo...

Actually LDH and CA19-9 persistently in the upper half of the normal lab ranges tend to be problematic for patients previously dx'd with advanced CRC and really need to be tracked. Elevated CA19-9 is more common with distant lymph nodes.

LDH and ESR could be ordered with the CBC with differentials and CMP (extended chem), perhaps without much fight. Maybe hsCRP too. US doctors tend to resist on the CA19-9, because of misconstructed diagnostics (ASCO et al evaluated overall CRC detection sensitivity for stages 1-4 against CEA, vs CRC severity and cheap therapeutic targeting). This is unfortunate for a lot of CRC patients. Especially upon initial CRC dx, before surgery, and immediately after surgery for early information and therapeutic options that are life changing and life saving.

Other doctors have recomputed some diagnostic cutoffs for CRC with CA19-9 at 25 to 27 units, instead of the usual 34 to 40 unit cutoff for pancreatic cancer diagnostics. Personally I think CA19-9 patients should be further tested at 19 units and above once already dx'd with CRC, to maximize longevity for stage 2,3, and 4 CRC patients with higher CA19-9 values, and for CRC patients that would probably benefit from longer term, targeted cimetidine. Also CA19-9 enhanced diagnostics may help toward formulas with superior survival without the disability of oxi- for the personalized, sialyl Lewis targetable patients. This potentially represents a majority of stage 3 and 4 CRC pts at initial dx.

'...so I don't have a baseline to track effectiveness.

So start one. We find drs that cooperate or we order for ourselves.

...was the pre-chemo able to shrink the nodes ?

The first time, before 1st surgery, "pre-chemo" wiped out a lot of stuff, most clearly in the peritoneum, and seemed to have slowed or stopped the spread from existing PALN.

The 2nd surgery, we used the pre-surgical period to test chemo chemistry until some marker activity dropped substantially but the PALN didn't actually shrink, we just needed to stop their spread and transformation to more mets. The CA19-9 mostly dropped to baseline (past and future values); the CEA stabilized high but was not steel resistant.

I know it won't be curative but I would like to try and get rid of the largest nodes if I can.

That's what we did with continuous chemistry (= 5FU + off label stuff), much of it even during surgery.
Drugs like cimetidine and celecoxib can continuously bathe susceptible nodes and mets 24 x 7 for years without the side effects and disability of oxi-.
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

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby rp1954 » Fri Apr 07, 2017 8:24 pm

With stage 4 colon cancer, the guidelines usually divert immediately to chemo rather than do surgery unless there is a bowel obstruction. These guidelines are built around a particular set of technologies, experience, influences and assumptions that are not necessarily optimal. Patients have to advocate for themselves, and self initiate better options.

We used immune boosting formulas and anti-cancer adjuncts, starting with most of the Life Extension protocols immediately, and ever since, very successfully. We then used IV vitamin C for faster surgical recovery and stressing cancer cells, along with daily (metronomic) chemo with extra adjuncts, mostly even more potent nutriceuticals. Eventually a second surgery, with closely timed chemo, cimetidine, post operative celecoxib, and high potency supplements, removed the para aortic lymph nodes without additional spread. This is not a common level of treatment and has to be self initiated.

If you want to do something different, ADAPT with extras is a possibility and it could be done much closer to basic abdominal surgery (been there, done close to that with another oral 5FU). You will see I've mentioned other lab tests that have been useful, especially adding CA199, LDH to the blood markers before treatment/surgery, and after. CA199 is a cimetidine targetable risk factor, little understood or used in US medicine but an important item, among several cheap, off label adjuncts.
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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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Maia » Sat Apr 08, 2017 9:07 pm

rp1954 wrote:Drugs like cimetidine and celecoxib can continuously bathe susceptible nodes and mets 24 x 7 for years without the side effects and disability of oxi-.

For lymph nodes, I agree with that --celecoxib + cimetidine on top like something like capecitabine, in a low dose, continuous metronomic regime. I don't have enough literature to prove it, but I feel I have seen enough people 'keeping things at bay', when the cancer is quite indolent, like many times lymph spread is, during a good time. Putting the link to an old thread specially for you, Achilles Torn.


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