Para-aortic node recurrence

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

Para-aortic node recurrence

Postby Eternal optimist » Mon Dec 05, 2016 5:48 pm

Hi,

I have not posted before but have found this board really helpful, especially with information about lymph node only spread. I am not sure how to proceed after my latest scan results, so I would love to hear opinions on what I should do next.

I was stage 4 when diagnosed 21 months ago, with spread to 1 para aortic node. I now have a recurrence in my Para aortic nodes (I'm unsure whether it is a regrowth from the same node as the cancer was not fully removed, or a different node in the same area). It looks like 1 node again, and was enlarged but overlooked on my CT scan in July, and had mild uptake on my previous PET in Febuary. My oncologist wants to wait and do another PET in 6 weeks to see whether the node has changed, or if there is further spread, before giving any treatment. One possibility, I was told, is that it is reacting to the chemo rather than cancerous.

I currently just get my CEA tested, it was around 9 at diagnosis, and has remained below 2.5 since my operation a year ago. As well as chemo, I have been taking circumim and flax oil supplements, and over the last year have been having 3-monthly dendritic cell vaccines, with IV vitamin C and ozone therapy.

I can't get my head round waiting for the treatment, as to me it seems so unlikely it isn't cancer. But i'm also not sure what treatments to investigate. I've also asked about monitoring additional blood markers but my oncologist isnt keen, and i don't know whether they would be useful at this stage (after chemo and surgery).

Any advice would be really appreciated, thanks so much. I live in the UK but am considering getting an international second opinion too as I keep being told I'm unusual not to have had any more spread yet.
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

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Para-aortic node recurrence

Postby Swirdfish » Mon Dec 05, 2016 8:10 pm

Hi,

I don't really have any answers for you, but I had a para-aortic lymph node removed. Same mine was also mentioned by the radiologist twice, on my MRI and CT, but other then saying it was 4mm in size, he didn't say anything else about it. So my surgeon and i made the call to remove it anyway. It was non-cancerous. I believe nodes in this area are bigger then other nodes in the body.

I think anything over 1cm is considered high risk. Yours seems so small, unless its an unusual shape. They didn't even discuss my node until I brought it up and was worried about it after seeing my scans.

I'm no doctor or anything, this is just what happened to me.

Only thing that would worry me is that you have had it up there before. How easy would it be for them to remove?

either that or wait for any increase in size, id be getting it checked regularly.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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

Re: Para-aortic node recurrence

Postby WarriorSpouse » Mon Dec 05, 2016 8:12 pm

Has your Doctor used Avastin with you yet? My wife has a similar prognosis and has been on Avastin early on with 5FU and now Zeloda. She has been NED for several months now. Talk with your doctors about it. Good Luck!
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: Para-aortic node recurrence

Postby rp1954 » Mon Dec 05, 2016 9:12 pm

...sigmoid tumour with spread to para-aortic node.
Sounds familiar.

Our experience was that multiple adjuncts including IV vitamin C and daily oral chemo (and several/many others) were necessary to slow down or stop lymph nodes. The IV vitamin C also appears to attenuate the PET scan since dehydroascorbate looks like sugar to the cell transporters, accumulates and interferes with the tumor cells' sugar transport and metabolism. The choice of necessary adjuncts should be guided by measurement and individualization. If they have not measured CA19-9 and LDH, or the other blood panels I've discussed before (review my archived posts), you are being short changed, IMHO.

Many people here need(ed) more markers than just CEA to track their CRC beasties while off chemo.
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

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

Re: Para-aortic node recurrence

Postby Alessandria » Tue Dec 06, 2016 5:52 am

Hi there,

I was also T3N2M1 (para-aortic node). The node hadn't shown up on a CT before surgery (in fact nothing has ever shown up on a CT for me) and was removed almost by chance. Post operative PET showed mild uptake on another 9mm PA node and I subsequently had 6 months folfoxiri and avastin, which seemed successful, followed by 6 weeks radiotherapy (and Capecitabine). I only finished recently so I can't say how successful this treatment will be long long term, but can't see there was much more that could have been done treatment-wise up to this point. I think surgical removal of individual PA nodes is possible depending on location, but as my surgeon said, if it's in one, it's probably in others.

Do you know if your tumour had any mutations?
What do you mean when you say they didn't get clear margins on the node?

All the best

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

Re: Para-aortic node recurrence

Postby Eternal optimist » Wed Dec 07, 2016 2:42 am

Thanks everyone, sorry I didn't get a chance to reply yesterday, my son had a christmas concert that seemed to take up most of my day, and I scheduled the rest of the day to feel sorry for myself!

I've realised I have put an errant dot in my signature, the node was 17mm. I did also speak to my surgical tram yesterday, and they were keen to be more proactive, today I'm going to start motivating my oncologist.

I hadn't thought of avastin at this time, so thanks for that I will definitely raise this. I am thinking to get the extended bloodwork done privately, at a different clinic if necessary, so will explore this today. Rp1954 your comment about IV vit C is very interesting (as are all your posts, i have read them with much interest). In your experience how long did the vitamin C effect the appearance of the nodes?

Thanks again all of you
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

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

Re: Para-aortic node recurrence

Postby Eternal optimist » Wed Dec 07, 2016 5:35 am

Alessandria wrote:Do you know if your tumour had any mutations?
What do you mean when you say they didn't get clear margins on the node?


Sorry I forgot to reply to this! I have no mutations found. The pathologist found cancer cells less than 1mm away from the edge of the node where it was dissected, so it was considered that there would be cancer cells that werent removed.
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

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

Re: Para-aortic node recurrence

Postby rp1954 » Wed Dec 07, 2016 11:10 am

In your experience how long did the vitamin C effect the appearance of the nodes?
Over 6 years, with other adjuncts - chemo and CAM.

...I have no mutations found.
The genetic material tested are point tissue samples on a tumor separate from the residual mets. Heterogeneity is hard to assess from a limited sample. We had one lymph node sample analyzed from 5 years ago, KRAS wild with elevated CEA (the KRAS mutants had been recently killed then, after a CA19-9 nose dive) but funny thing now we're dealing with a CA19-9 source from probably KRAS mutants, and the CEA remains below Upper Limit as "normal". This one more reason that I am careful to check for serum markers that may circulate due to leakage from many sites.
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

emzee
Posts: 5
Joined: Wed Jun 08, 2011 3:49 pm

Re: Para-aortic node recurrence

Postby emzee » Thu Jan 05, 2017 3:13 pm

Hi, I just posted today regarding my own PALN recurrences over the past 3 years. Mine are not resectable, have not responded to chemo, got some traction with SBRT but since I've had it there twice, I am unable to have it there again. I've been on 5FU, FOLFOX, FOLFIRI (I have an intolerance to Irinotecan so it is now permanently off the table) and Stivarga. My oncologist is thinking maintenance chemo either back to low dose 5FU infused or Xeloda oral...I'm thinking I'll go with 5FU as I already have neuropathy from FOLFOX and do not want the HFS that comes with Xeloda. I kinda did OK with 5FU before, not that it stopped anything long term, but I managed it fairly well while undergoing radiation at initial diagnosis.

I've been scouring the 'net trying to find more intel about PALN and colorectal cancer and cannot find much. It seems to be more prevalent with other types of cancer (breast, prostate). Interestingly and sadly, my 76 year old dad passed from bladder cancer last April. His mets were expected to be in the PALN area but he was clean there, his spread was to his liver and spine. I've already had liver mets so I'm thinking there is definitely some kind of weird deviation from "normal" CRC mets. My oncologist (I'm in Chicago at an academic center) treats nothing but CRC and said that my mets are not typical and that I should not expect anything we do to be curative. It sucks (well, all cancer sucks regardless of where and stage) since I'm 52 and been slugging this out for over 6 years AND am in good health otherwise. If anyone has some info, personal experience, etc. please post. Thank you!

Best, Emzee
Dx Nov'10 Stage III rectal CA
Dec'10-11 F5U & 25 rad Txs
Mar'11 res,temp ostomy,pos nodes
Mar'11-Nov '11 FOLFOX 12 Txs
Feb'12 CEA elev;liver tum,Stage IV
Mar'12 Liver res, gallbladder out,ostomy rev
Feb'14 Elev CEA Pos para-aortic lymph nodes
May '14-Aug'14 FOLFIRI + Avastin (6 rnds, red. dose)
Sept-Oct '14 SBRT nodes
Sept'15 CEA elev,new PALN pos
Oct-Nov '15 SBRT nodes
Feb '16 CEA elev,new PALN pos
Apr-May Red dose Stivarga
Oct '16 CEA elev,new PALN pos
'18 mult sm lung mets, PALNs; CEA UP, maint. 5FU

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

Re: Para-aortic node recurrence

Postby Eternal optimist » Thu Jan 05, 2017 4:05 pm

Hi Emzee,

I must have been reading your original post as you were writing this one! I will post my reply there as I have already started it. I'm planning to come back and update this thread, but had the christmas and new year off from thinking too much about cancer. Im seeing my radiologist early next week to sort out the details of my treatment plan.
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

Brearmstrong
Posts: 93
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Para-aortic node recurrence

Postby Brearmstrong » Thu Dec 21, 2017 8:22 am

Bumping this back up because I too have PALN recurrence and I'm wondering how Eternal optimist, Emzee and Alessandria are doing with their PALN's? Thanks for any updates and hoping you are all doing well!

-Brenda
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, nov 17 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Clear CT's Nov 18, Feb 19, May 19, Aug 19,Nov19, May 20

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

Re: Para-aortic node recurrence

Postby Eternal optimist » Mon Jan 29, 2018 4:10 pm

Hi Brenda,
Sorry its taken me so long to to reply, I had a busy christmas and haven't been on the site much.

I've updated my signature, so as you can see I had another recurrence last summer, but I'm doing ok in that am feeling well on the treatment and seem to be responding. I had felt foolhardy not being on maintenance chemo and have at least proved myself right that it was a bad idea! I have 3 more cycles of folfiri and cetuximab, then if my scan results are ok I will start some form of maintenance, probably 5fu and cetuximab. I haven't used avastin at all yet- I will have to pay for it when I do so am keeping in reserve for now, and hoping the price drops next year when the UK patent expires! A friend of mine, whose cancer has been aggressive with multiple recurrences in the past, and also has PALN spread has been stable for 18 months now on 5fu and avastin.

How are you doing Brenda, is your PALN spread a recent diagnosis? I find it always takes me a few months to dust myself off after each bit of bad news. Do you have a treatment plan?
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

Brearmstrong
Posts: 93
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Para-aortic node recurrence

Postby Brearmstrong » Mon Feb 05, 2018 3:46 pm

Thank you Eternal Optimist! Yes, my recurrence showed up just 30 days after finishing 12 rounds of folfox making me stage IVB. I'm now on folfori w/ avastin. I am angered that you have to pay for avastin yourself. That is discouraging for sure. I'm so sorry to hear about your recurrence. My surgeon said that if they stay stable for six months on folfori then he will remove surgically as they are not impacting my aorta or more than 2-3 on the PET scan. I had a CT scan last Tuesday and I've decided to wait to hear the results during my next infusion on Wednesday. For some reason, I'm paralyzed with finding out the results. This stage IV business is just devastating to me. Please keep me posted on how you are doing and I will do the same.
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, nov 17 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Clear CT's Nov 18, Feb 19, May 19, Aug 19,Nov19, May 20

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

Re: Para-aortic node recurrence

Postby rp1954 » Mon Feb 05, 2018 4:30 pm

Brearmstrong wrote:...My surgeon said that if they stay stable for six months on folfori then he will remove surgically as they are not impacting my aorta or more than 2-3 on the PET scan. I had a CT scan last Tuesday and I've decided to wait to hear the results during my next infusion on Wednesday.

My wife had lots of PALN mets in a single site. It is presumed that seedlings are likely elsewhere, so we kept 5FU and various immune and anti-cancer chemistry on them until the last minute, as long as possible - longer than is doctor recommended. We restarted asap after surgery too, along with wound healing chemistry. My wife is far and away her doctors' most successful PALN patient.

I think that it is breathtakingly unfortunate that they don't automatially do this for patients with CA199 and KRAS/BRAF mutant mCRC to make distant LN surgery a more common option.
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

Brearmstrong
Posts: 93
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Para-aortic node recurrence

Postby Brearmstrong » Tue Feb 06, 2018 7:37 am

Thank you rp1954, I agree, just take them out if possible. My oncologist originally said inoperable until two days later at the tumor board, my original surgeon said that he would do it if no spread in 6 months on folfori. I realize that it means that cells are all through out my lymphatic system at this point and considered incurable but seems like it might be more time if they can take them out. Who knows. Looks like cancer can take off at lighting speed whenever it wants- that's what is the scariest part for me at least. I agree that IF I can have the surgery, I need to stop chemo as late as possible and then start right back on (even if just 5fu to start) chemo as soon as possible.
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, nov 17 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Clear CT's Nov 18, Feb 19, May 19, Aug 19,Nov19, May 20


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