Stg 4 para aortic and Iliac Lymph Nodes

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Achilles Torn
Posts: 127
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Achilles Torn » Sun Apr 09, 2017 12:46 am

Thanks Maia,

I've read that one ! (I back read all the good stuff you post here) but I forgot to recommend reading your posts to Sarah for updates on trials and treatments. I will need a plan once I'm done the ol' FolFox (will probably be stopping Oxi after one more which is great but a little scary since it seems to have been working). I can certainly see how metro chemo makes sense and am going to ask my Onc. about Adapt as well.

I can't say it enough but thanks for all you do...

Cheers
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

User avatar
CRguy
Posts: 10246
Joined: Sun Feb 10, 2008 6:00 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby CRguy » Mon Apr 10, 2017 12:07 pm

Just FYI :
we have moved all of Fighting4Hubs discussion to her own topic
Sigmoid tumor & Para Aorta spread - Please help our little family -

Cheers
CRguy

Internal1
Posts: 8
Joined: Fri Aug 07, 2020 10:58 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Internal1 » Sun Aug 30, 2020 2:54 pm

Hi Achilles Torn,

I am from Ontario, Canada and recently joined the forum. I tried to PM you, but it didn’t allow me to use that feature. I was diagnosed at the end of April with recto sigmoid adenocarcinoma at the age of 44. I had surgery and a CT scan confirmed that I was stage IV with metastasis to distant lymph nodes including para-aortic nodes, virchow’s nodes, portacaval lymph nodes and others. I started chemo in June and I’ve had 6 cycles of folfox with avastin. A recent CT scan showed that most of them shrank a bit, but 3 portocaval nodes measuring up to 1.4 cm didn’t shrink but are stable. I saw in your signature that you have been on maintenance 5fu/Bevacizumab since July 2017. I was wondering at which point was it decided to have maintenance chemo and are you still on it? Did all of your lymph nodes shrink after 6 cycles? My oncologist said it’s very rare to see patients with distant lymph node have NED. He said even if they are NED radiologically, the cancer is still there. My oncologist wants me to continue with folfox and avastin even after the 12 cycles if I can handle it. Were you given the option between Xeloda or folfox for maintenance therapy, because I prefer to be on oral chemo? Sorry for all the questions. Thanks so much!

Achilles Torn
Posts: 127
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Achilles Torn » Thu Sep 03, 2020 2:47 am

Hi Internal1,
In my case the nodes shrank to normal size after 12 cycles of FolFox. My Oncologist and I agreed it was likely still there but just not visible so kept on going with maintenance chemo of 5FU and Bevicuzimab (Avastin). After a year or so of maintenance I switched the 5FU to Capecitabine (Xeloda) as I was sick of the pump. I continued on this for about another 2 years gradually reducing the Cap dose (but same Avastin dose) and it kept the cancer down. When Covid hit in March we decided to take a break. My PET scan in June showed the cancer was active and growing again in the lymph nodes so I resumed the maintenance dose in July. I have another PET scan coming up. In the meantime I met with a surgeon who believes he can do an extensive lymph node removal. So if the scan is ok that may happen as soon as next week. The maintenance decisions were my choice with advice from my Dr. Overall I found it pretty tolerable but everyone is different.

From what I can tell Chemo has a good shot at controlling some peoples lymph node mets for a long time. There are many new treatments in development keep hanging on and you never know what may happen.

I think when you are new to the board it takes a while to be able to PM people....? Anyways feel free to try to pm me again or ask questions here. I am happy to answer as best I can.

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

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby lovelife789 » Thu Sep 03, 2020 6:09 am

Hi AT,

Been reading your posts as mCRC patients with PALN spread is not common, I was trying to read some stories with positive energy and I saw yours :)

I have been trying to convince my doctor to do maintenance chemo with no luck. They said they don't do maintenance chemo there as researches did not show enough evidence that it works. Honestly I don't get it but when we discussed this, my platelets were not up to standard, so we kinda let it go on a wait and watch journey.

My spread is currently confined to a few lower abdominal LN including 2 PALNs. Was also trying to see if we can do a PALND but my doctor said it's not helpful :roll: :roll: where is yours if I may ask? And how did you convince him/her?

Thanks in advance!

Lovelife
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

rp1954
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby rp1954 » Thu Sep 03, 2020 10:11 am

lovelife789 wrote:I have been trying to convince my doctor to do maintenance chemo with no luck. They said they don't do maintenance chemo there as researches did not show enough evidence that it works.

Their firm objection means find other, less common drs to help you.
There is some circularity in their argument and experience because they miss on other biological principles needed to break out of the rut. It often takes multiple steps with a multiple modality plan that includes "maintenance chemo", beyond std-of-care, to break multi-site metastases.

- missed M1/mCRC/high risk patients initially treated as std-of-care Stage II and III patients lose chances. Inadequate bloodwork is part of the early problem, around diagnosis.
- If the peak chemo dose is too low, not as many cancer (stem) cells get eradicated. So they blast all patients with cyclical chemo and take the statistical results.
- If the trough/off chemo level is too low, cancer cells may accumulate faster than normal cells, with greater resistance.
- If regrowth and re-seeding are not continually stopped by various chemistry, surgery with multiple sites is less likely to be curative.

We dealt with a lot of these problems by non standard means to sensitize and target the cancer cells with off label drugs, high potency supplements and a mild, oral 5FU chemo prodrug via daily immunochemo.
So our multiple modalities were:
a. neoadjuvant (pre-op) immune therapies, based on high potency supplements and targeted cimetidine, 4 weeks
b. Surgery no. 1,"R2" but strong immune response had destroyed much cancerous tissue;
....................cluster of para-aortic nodes not operated on, yet
c. continue immune and nutritional therapies, add IV vitamin C. 6 weeks (would have used 2 weeks now)
d. continue c; add daily oral 5FU chemo, adjustments/experiments based on blood profiles, 11 months
e. Surgery no. 2, remove metastatic para-aortic nodal conglomerate, restart immunochemo next day
f. 7 years immunochemo, adjusted based on bloodwork and cancer markers.
2+ years of no chemo as of today, after everyone but my wife gave up on "cure".

We carefully consult/doctor shop to get more information, and to get around problems and obsolescent practices.
Rather than a "1 stop shop", we had to use multiple doctors. Some for specific tasks like background information, pill scrips, insurance coverage, or 30+ yrs research and clinical experience on a specific vitamin application.

Unfortunately, there is limited experience in the US with mild, oral, daily (immuno)chemo approaches, that need extra ingredients beyond ADAPT to do the mCRC jobs best. So we, the caregivers and patients, often times have do homework to make things work or get pulled together, as discussed in the archives.

Honestly I don't get it but when we discussed this, my platelets were not up to standard, so we kinda let it go on a wait and watch journey.

Platelets might be helped by:
1. relentless removal of folic acid in your diet and supplements while on 5FU chemos. Supplements with natural type folate or leucovorin molecules are around. Pls research archived posts here over the last 8 years.
2. we used PSK and liver products to aid CBC results including platelets
3. Some chemo formulas are less destructive, not all are known in the US/NCCN/ASCO.
4. alkyl glycerols in bone marrow and shark liver oil are stated to help platelets
My wife finds bone marrows and soup too greasy for extended use. We never had to use the shark liver oil pills before we stabilized her platlets with steps 1-3, despite her also taking 1/4 aspirin too.

Also you may find biochemically oriented naturopaths and alternative MD that can help you with these.
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: 303
Joined: Thu Mar 05, 2020 7:14 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby beach sunrise » Sat Sep 05, 2020 1:49 am

Yes, all of what rp1954 wrote is so true!
I had to argue for about an hour for xeloda (with papers/research knowledge to back me up and was determined I wasn't leaving without it), but onc wouldn't include celebrex as he doesn't treat inflammation. He didn't even want to look at my "extra" bloodwork panels I got on my own, smh! But i got the xeloda for now anyway and on the hunt for a new onc that will be more flexible.
So, since onc wouldn't prescribe celebrex I found a gp who would (doc #3 was the bingo). The first two gp appts, I knew as soon as they walked in appt was over before it began because I checked the cancer box on new patient form and they didn't want any responsibility for a cancer patient ( I should have refused to pay, ha).
It took a minute to hunt for doctors who would help me in different areas I needed help with.
For platelets/HGB I ate liverwurst (up to 3-4 TBSP a day). Platelets were ok then I slacked off and platelets nose dived, HGB stayed ok. Back to eating it :) Part of the problem I believe is supply disruption in PSK also.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
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 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Internal1
Posts: 8
Joined: Fri Aug 07, 2020 10:58 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Internal1 » Sun Sep 06, 2020 11:33 pm

Hi Achilles Torn,

Thank you so much for your response, I’m really sorry for the late reply. I also got your PM, but I still can’t PM back. I was wondering, in your opinion do you think the effect of Xeloda is the same as 5fu infusion because my oncologist wants me to continue on folfox plus avastin once my 12 cycles in November ends and he didn’t give me the option of the pill. In terms of extended lymphadenectomy with isolated synchronous extra regional lymph node metastasis, it has been found to be effective in carefully selected patients and some surgeons in Japan are doing it. It’s very interesting to know that there are surgeons in Canada that are willing to do it. What is the criteria that needs to be met to do this surgery? I wish you all the best and hope it works out! Thank you again for all of your help!

Achilles Torn
Posts: 127
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Achilles Torn » Mon Sep 07, 2020 2:36 pm

As far as I know 5FU and Xeloda are thought to be equivalent as Xeloda is essentially converted to 5FU after ingestion (at least that’s my understanding). They have a bit different side effect profile but efficacy is supposed to be the same.

In terms of extensive lymph node dissection the surgeon told me he wants to operate because over 4 years the disease was well controlled by chemo so his belief is it may be contained to those lymph nodes (key word “maybe) He told me this surgery is often done in other cancers (pro state and bladder I believe).

I’m supposed to go in tomorrow and am optimistic but also realistic in that they might find more disease once they open me up.

I will try and update afterwards.

Whatever my result I hope this demonstrates that there is always possibilities for hope.
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

Internal1
Posts: 8
Joined: Fri Aug 07, 2020 10:58 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Internal1 » Mon Sep 07, 2020 3:57 pm

Hi AT,

I could see that most of the olymphian’s on the forum have only para-aortic node disease. In my situation, on top of para-aortic, I have lower posterior mediastinal lymph nodes that had decreased from 1.2 cm to 7 mm. Also, I have small scattered retrocrural lymph nodes. Also, I have left supraclavicular lymph nodes that went down from 9 mm to 7 mm. Maybe in my situation a surgery isn’t feasible. I’m not sure if anyone on this forum has a similar situation like me with nodes other than para-aortic which were melted by chemo and could answer this question as well. I’m glad I found this forum! I read your story and the story of others and they are truly inspirational!!

Achilles Torn
Posts: 127
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Achilles Torn » Tue Sep 08, 2020 12:14 am

No two of us are the same its true. I can tell you that my spread was the right and left Illiac nodes all the way up to the Para-aortic nodes and chemo worked well on them for years. I also know of people who, given the right systemic chemo treatment have seen many nodes wiped out. Is it the most likely thing ? no....is it possible ? yes.

I know its hard to maintain hope and I struggle with that myself...but there is still reason for it in both our cases.

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

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby lovelife789 » Wed Sep 09, 2020 5:31 am

Achilles Torn wrote:No two of us are the same its true. I can tell you that my spread was the right and left Illiac nodes all the way up to the Para-aortic nodes and chemo worked well on them for years. I also know of people who, given the right systemic chemo treatment have seen many nodes wiped out. Is it the most likely thing ? no....is it possible ? yes.

I know its hard to maintain hope and I struggle with that myself...but there is still reason for it in both our cases.

AT


I can't agree with you more on how hard it is to maintain hope. I almost saw my doctor's face turned grey when he saw para aortic LNs met on my scan report. He tried to hide it but I saw. But I keep reading medical journal on para aortic LN resection, AND there in those journals I saw people who did NOT go through a resection but went on disease free for 5 years. The percentage is low but they exist. Those who went through a resection has a higher chance to have longer disease free survival period. This small bit gave me hope. Either or, there are people who survive this!!!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

Achilles Torn
Posts: 127
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Achilles Torn » Wed Sep 09, 2020 1:50 pm

I’m in recovery from surgery today. The PET scan just before showed the maintenance chemo had held me stable
For three months. The surgeon said it went well and they removed a lot of nodes. I was reading up on surgical options for lymph nodes and found this example of a patient with multiple lymph node surgeries who did well.


https://pubmed.ncbi.nlm.nih.gov/26640350/
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

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby lovelife789 » Wed Sep 09, 2020 3:13 pm

Achilles Torn wrote:I’m in recovery from surgery today. The PET scan just before showed the maintenance chemo had held me stable
For three months. The surgeon said it went well and they removed a lot of nodes. I was reading up on surgical options for lymph nodes and found this example of a patient with multiple lymph node surgeries who did well.


https://pubmed.ncbi.nlm.nih.gov/26640350/


Oh AT, I am soooo insanely happy for you!!! The surgeon being able to remove a lot of nodes sounds promising to me! Success is a lot of small wins put together, this is one of many for you! Keep us posted on your progress when you feel better :) your fight gives people (certainly me) a lot of hope!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

Internal1
Posts: 8
Joined: Fri Aug 07, 2020 10:58 am

Re: Stg 4 para aortic and Iliac Lymph Nodes

Postby Internal1 » Thu Sep 10, 2020 6:12 pm

Hi AT,

I’m so happy that the surgery went well. I’m praying for your speedy recovery and hoping that you get positive results. Thank you for keeping us updated.


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