Para-aortic node recurrence

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rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Para-aortic node recurrence

Postby rp1954 » Tue Feb 06, 2018 7:52 am

...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
We had the advantage of better wound healing, Kras mutant-chemo performance, and lower surgical complications that goes with IV vitamin C, cimetidine (when targeted correctly), and some of the other nutrients, along with the mild daily chemo. With these, we didn't need Avastin, with a 6 week penalty before and after surgery, either. I can imagine these may be fighting words with some of the MD, RD or nurses on several points. We wired around this as much as possible. That takes planning, personnel selection, action, off site support, and enforcement, where hospitals are often highly resistant to non-standard practices.

The biggest alignment of alternate cancer treatment we had with both surgeries, was that they already prescribed Celebrex/celecoxib for two weeks following surgery. The 5FU oral chemo we use, UFT, is long approved for CRC in UK and Japan, albeit we use it better.

...even if just 5fu to start)
It is important to modulate mild 5FU treatments with mild off-label and natural stuff, with personalization and targeting as possible. A number of molecules can help both the surgical recovery and the anti-cancer action. 5FU alone doesn't control my wife's biomarkers or mets' growth, although this may not directly correspond to reducing or stopping new metastases - but we have always tried to keep some 5FU present hell or high water, 24 x 7. This was possible for us with UFT, an oral 5FU drug with milder side effects than Xeloda, things like PSK, specialized high dose vitamers including IV vitamin C, and other mild dugs (celecoxib, targetable baby aspirin, or targetable cimetidine).
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

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Para-aortic node recurrence

Postby Siti » Mon Dec 09, 2019 11:02 am

Bumping this thread back up, hoping to learn from all of you.

How’s everyone doing? I really hope all of you are well :)

A bit of a background on my husband’s diagnosis:

CT scan revealed a cluster of swollen lymph nodes along the Para Aorta. The subsequent PET-CT scan done before surgery revealed a few other hot spots (hip and neck, but they’re tiny). Doctors gave him a choice of proceeding with surgery first or having chemo first, but my husband wanted surgery first, it was successful with clean margins but 30/31 nodes were tested positive.

Anyway before chemo, doctor ordered another round of CT (this was 5 weeks post surgery) and the lymph nodes along the para aorta appears the same as before. He had his first CT after 3 cycles of CAPOX+Avastin, and everything have shrunk. Doctor said the results are great and would consider him a healthy person if he didn’t know he had cancer :)

Our onc initially wanted him to have 9 cycle of CAPOX+Avastin but since his CT was good, he said he would like to drop Oxi after the 6th cycle and go on maintenance capecitabine + Avastin. Having said that, due to side effects, on his 5th cycle, Oxi has been reduced by 20% and capecitabine 30% (he was previously taking 4300mg, but is now taking 3000mg daily — 2 weeks on, 1 week off).

I noticed that almost all of you long term survivors had PALND and have been on maintenance chemo because it seems like the best way to control the spread.

Since his next scan would be early January (after his 6th cycle). I asked our onc if it’s best we do a PET instead but he seems resistant to the idea and said CT is the best way to determine if new tumours have developed. What do you think?

Finally, do you think I should push for PALND anyway even though all his lymph nodes have shrunk with chemo? Most published articles seem to suggest that PALND is the best way for long term survival.

As for supplements, he was taking turmeric and Vit D3 until the 4th cycle where he developed serious side effects. Now that the dose have been reduced, he continues D3 but doesn’t dare to take turmeric or PSK mushrooms.

I’m really so confused and worried these days till I’ve fallen sick!

I want to be ready to arm him with everything he needs so that he can have a long term survival. Any thoughts? I would be grateful if you could chime in with tips.

Thanks everyone!

Siti
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

Brearmstrong
Posts: 112
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Para-aortic node recurrence

Postby Brearmstrong » Tue Dec 10, 2019 7:59 am

Hi Siti,

My advice (as always not a dr) is that if they can be surgically removed, then go for the surgery. You are correct that in most studies (so few of them out there) that the only real long term success has been with PALND. Often times surgery is too risky but if it can be successfully done then I'd go for it! I have been NED for the last 19 months after successful removal. My oncologist is very sobering about my long term NED but I take every clean scan as a win. I'm on xeloda for maintanance. I wish too that I could have a PET scan again as my CT scans have never shown any of my cancer and the radiologist saw that my PALN's were increasing in size but didn't mention on my CT scan until a rising CEA and then PET scan showed the enlarged PALN's. I understand your request for one and I hope they reconsider.

-Brenda
50 F diag 1/17
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Nov 17 PET p aortic nodes Stage IV
Folfori w/avastin
May 18 surgery on nodes xeloda 2yr
Aug 18-May 20 NED
July 20 hysterectomy
July 21 vats right lung
Clinical trial- failed liver Mets biopsy shows now poorly differentiated carcinoma.
HAI pump at MSK may 2022
Nov met to pancreas- causing pain
Radiation ablation to pancreas Dec 22
New lung Mets watch and wait

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Para-aortic node recurrence

Postby Siti » Tue Dec 10, 2019 11:07 am

Brearmstrong wrote:Hi Siti,

My advice (as always not a dr) is that if they can be surgically removed, then go for the surgery. You are correct that in most studies (so few of them out there) that the only real long term success has been with PALND. Often times surgery is too risky but if it can be successfully done then I'd go for it! I have been NED for the last 19 months after successful removal. My oncologist is very sobering about my long term NED but I take every clean scan as a win. I'm on xeloda for maintanance. I wish too that I could have a PET scan again as my CT scans have never shown any of my cancer and the radiologist saw that my PALN's were increasing in size but didn't mention on my CT scan until a rising CEA and then PET scan showed the enlarged PALN's. I understand your request for one and I hope they reconsider.

-Brenda



Thanks for your reply Brenda — now the real question is, since his nodes have shrunk and if the PET scan is clean, should I still push for surgery? Our colorectal surgery did try to “harvest” a few nodes around that area but it came back negative and he said they were difficult to identify as they were very small and not obvious at all.

On your end, were your nodes still enlarged when you went ahead with surgery? Did it require a lot of persuasion for it to be approved?
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

Brearmstrong
Posts: 112
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Para-aortic node recurrence

Postby Brearmstrong » Tue Dec 10, 2019 12:01 pm

Tricky situation you are in. I know that some on here (warrior spouse being one of them) had good results on xeloda keeping those PALN's shrunk and then after about 3 years or so they started to grow again and now she's back on chemo. If your husband's PALN's have shrunk then that's great news and I can see why they are probably just going to watch and wait. In my case, I had a rising CEA while your husband's doesn't appear to be good indicator for him? My CT scan showed 1-2 nodes were slightly enlarged at around 1cm. The PET scan though lit up at a 12SUV (high for sure) and so they decided then that I was inoperable and incurable... rough to hear.. and put me on folfiri w/ avastin. I had 9 rounds of that and the next CT scan showed the nodes were stable- not bigger or smaller and that's when I asked for the chance on surgical removal. My original surgeon made the call that he'd try. When he got in there it ended up having spread to 5 lymph nodes and they grew considerably the month off chemo but they had not wrapped around the aorta or kidney and could still be resected safely. My understanding is that IF he knew they had gotten so large and that there were 5 of them, he likely wouldn't have tried for removal. The magic number I've seen in studies is 4 nodes or less = longer term NED but no success in those with 5 or more nodes. Again, I'm bummed but I plan on being an outlier ;-) I'd see what the next CT scan shows especially since they've shrunk and likely won't light up much on the PET. Maybe he's lucky and the chemo actually knocked all the cells out. Best of luck and keep us updated on how the next steps go! Thinking of you both.

-Brenda
50 F diag 1/17
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Nov 17 PET p aortic nodes Stage IV
Folfori w/avastin
May 18 surgery on nodes xeloda 2yr
Aug 18-May 20 NED
July 20 hysterectomy
July 21 vats right lung
Clinical trial- failed liver Mets biopsy shows now poorly differentiated carcinoma.
HAI pump at MSK may 2022
Nov met to pancreas- causing pain
Radiation ablation to pancreas Dec 22
New lung Mets watch and wait

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: Para-aortic node recurrence

Postby Achilles Torn » Fri Dec 13, 2019 1:54 pm

Hi Siti,

I had many lymph node mets up to the PALNs at diagnosis. Both Oncologist and Surgeon agreed it was too widespread to attempt surgery and to go on Chemo and re-evaluate. I did FolFox for 6 months which shrank the lymph nodes to virtually normal although my Oncologist and I agree the cancer is still present. Surgery is still not possible as they can't tell where it is on scans anymore. I suppose this is a good problem to have...I have been on maintenance Xeloda and Avastin (Cap and Bev) ever since. I know it is a matter of time before it comes back but my hope is that it will be more limited and then we can try surgery.

For what it's worth it took a PET scan to properly see the lymph node mets in my case. My position has been to push for a PET scan every 6 months as I believe it better for activity in Lymph nodes.

Hope that helps
AT
Diagnosed as 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 + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Para-aortic node recurrence

Postby WarriorSpouse » Sat Dec 14, 2019 12:50 pm

I agree with AT's position on this too... Proper scanning schedule, including PET scans are important on being successful in fighting off active PALN issues. About a year ago my wife had PALN recurrence, but going back on her initial treatment plan, as well as some SBRT radiation, it appears to be doing the trick at keeping cancer down and living her life up! :)

All the best to the close followers to the PALN issues here... Enjoy the holidays with family and friends. Don't forget that part of post diagnosis survival, that is LIVING a purposeful LIFE! Every day is an opportunity to make a good memory for all around us.

Merry Christmas and a blessed New Year!
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

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Para-aortic node recurrence

Postby Siti » Sun Dec 15, 2019 3:26 pm

Thank you so so much for everyone’s feedback :)

I think everyone here concur with a PET scan since his last one was 5 months ago. Our oncologist has proposed to drop Oxi after the 6th cycle and go on maintenance (Capecitabine+Avastin). I think we need to be extra vigilant and ensure there’s no activity before going on maintenance.
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Para-aortic node recurrence

Postby Siti » Sun Dec 15, 2019 3:29 pm

WarriorSpouse wrote:Don't forget that part of post diagnosis survival, that is LIVING a purposeful LIFE! Every day is an opportunity to make a good memory for all around us.

Merry Christmas and a blessed New Year!
WS


You’re absolutely right. I thank god for every extra day I have with my husband and we try to live life to the fullest. Happy Christmas and a blessed 2020 to you and your family :)
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Para-aortic node recurrence

Postby Siti » Wed Dec 18, 2019 11:52 am

Hey everyone,

Sorry it's me again -- so our oncologist insisted that a PET scan is not necessary at this stage (despite persistent persuasion). He says that even if there's still activity, the treatment remains the same, because he says that continuing Oxaliplatin would result in severe/permanent nerve damage.

Our intuition tells us that if there's high SUV uptake detected, we should continue Oxilaplatin or at least consider other treatment options like SBRT or equivalent. It seems logical to be proactive, not reactive.

We're obviously not doctors and our oncologist is the head of a major cancer center in Netherlands, he is also a member of the ESMO council. So we're really confused at this point because some of his suggestions seem rather illogical -- for example, after surgery, he told us not to do chemo and wait for progression before starting.

TOTALLY CONFUSED. What would you do if you were in our position?

Thanks so much!

Siti
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

AlexandraZ
Posts: 178
Joined: Fri Aug 23, 2019 8:25 am

Re: Para-aortic node recurrence

Postby AlexandraZ » Fri Dec 20, 2019 6:44 pm

Dear Siti,

I have zero experience with enlarged lymph nodes, sorry! But I totally understand the confusion and frustration...I get that feeling often!! I know I'm not a doctor and I want to trust their judgement, but sometimes it just doesn't make sense at all and seems illogical.

I hope there's someone on here with some experience who can help you out!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

MetastaticEquilibria
Posts: 74
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Para-aortic node recurrence

Postby MetastaticEquilibria » Fri Dec 20, 2019 9:05 pm

I also have no experience with lymph node issues, but agree this is a tricky/frustrating decision. One issue is that oxaliplatin is pretty damaging stuff, and only adds a few extra percent survival to plain chemo (like 5fu/xeloda). Overdoing it can limit one’s options in the future — it can clobber platelet production, for example, which could prevent the use of any chemo at all.

Like you, I also tend to like to be as aggressive as possible. My oncologist understands my preferences, but also warns to avoid using up all of one’s bullets too early. At some point I have become comfortable that he is balancing my concerns with his experience in seeing lots of other cases, and his access to the institutional knowledge of the cancer center he works at. Having trust in one’s relationship with one’s oncologist is very important.

In your case, it sounds like your onc is in a great position as far as having the knowledge and access to other experts to consult with. Does he seem to understand your treatment preferences? Do you respect each other’s opinions? If you think you can get to such a place, good, but if not you may want to consider changing doctors if possible. But given his position as head of a major cancer center, I would be inclined to try to work with him.

If his recommendations seem illogical, can you get him to explain his reasoning in more detail? Maybe you will be convinced, or else find once and for all that his goals and yours just don’t match. Either way would be valuable info.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Para-aortic node recurrence

Postby Siti » Sat Dec 21, 2019 5:27 am

Thank you everyone for your feedback.

MetastaticEquilibria — you’re spot on. He said he wants to keep oxaliplatin for the future since it worked so well on him. And indeed on our first meeting, he says that we need to trust him. He continued by saying that if we can’t trust, then we should change doctors. He said that he’s dealt with many people like us (my husband and I), whom are used to being in control and with cancer, we’re never in control. There’s definitely truth in that statement and we appreciated his directness.

I think I need to let go because clearly this isn’t good for my sanity, I’m constantly worrying about my husband and trying to find what’s best for him. The good thing is our nurse agreed to add additional cancer markers, so CEA + CA19-9. CEA has never been a good indicator for him but I’m thinking no harm including that to the blood test which he’s going to do once every 3 weeks anyway.

Thank you all for being such a great support :)
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)


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