Thoughts on treatment approach - stage IV recurrent

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Markdale
Posts: 33
Joined: Wed Dec 02, 2020 4:45 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby Markdale » Thu Mar 03, 2022 5:46 am

Hope your surgery is successful, looks like you have the best possible chance of getting through tomorrow successfully.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4/24 lymph nodes. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule to confirm metastasis. Biopsy unsuccessful
1/1/21 thoracotomy (unsuccessful)
2/2022 sabr to 2 lung nodules

stu
Posts: 1561
Joined: Sat Aug 17, 2013 5:46 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby stu » Thu Mar 03, 2022 12:27 pm

All the very best with your surgery and hope for an excellent recovery .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Fri Mar 04, 2022 3:38 am

Sigh. I’m out of surgery and currently in ICU. There were more lymph nodes affected than they expected and the liver was going to be too risky, so they made the call to not complete the liver resection. It’s fair to say I’m very disappointed. They did however grab as many lymph nodes as they could, and I’m meeting the rad onc on Monday to plan for SBRT on the liver met (and perhaps more nodes).

Sigh. One step forward, two back. In the words of my previous surgeon, “you don’t have to win every battle - you just have to win more than you lose”.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

Claudine
Posts: 680
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Thoughts on treatment approach - stage IV recurrent

Postby Claudine » Fri Mar 04, 2022 10:19 am

Shoot, I’m very sorry RR - I understand your disappointment. But your treatment team seems to be quite active with a plan B already in place, that’s great! SBRT is a very precise way to target malignancy while minimizing friendly fire. Hopefully just a temporary setback.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

Rikimaroo
Posts: 394
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rikimaroo » Fri Mar 04, 2022 10:35 am

Argh!! So sorry my brother. The good news is they still have options. Hoping for the best!! We are all in this fight with you!!

Rikimaroo
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Markdale
Posts: 33
Joined: Wed Dec 02, 2020 4:45 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby Markdale » Fri Mar 04, 2022 8:06 pm

Sorry for the setback, On to plan b. You’ve got a lot of knowledge about CRC treatments Im Sure you’ll be able to advocate for another type of treatment after sabr.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4/24 lymph nodes. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule to confirm metastasis. Biopsy unsuccessful
1/1/21 thoracotomy (unsuccessful)
2/2022 sabr to 2 lung nodules

Gravelyguy
Posts: 378
Joined: Thu Jul 05, 2018 6:03 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby Gravelyguy » Mon Mar 07, 2022 12:53 pm

Darn, Hope SRBT can blast it all away.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Mon Mar 07, 2022 5:58 pm

Thanks for the well-wishes all. Looks like I’ll be heading home from hospital today, which is great.

We’re going to move ahead with the SBRT on the liver and possibly the remaining lymph nodes (if we can safely); I have a follow up in 2 weeks for that. Also going to get more scans done and decide on chemo based on that - ie whether there’s progressive/measurable disease on imaging or not. If they can’t hit the nodes safely now then may be able to at a later date. Similar with the lung nodule/s - was “tiny/invisible” on last scan according to rad onc, if it needs some targeted radiation then can do this too.

Tough discussion with my oncologist; obviously great that there’s possible targeted options and if we can keep the liver clear then I could live with this for a relatively long time. But it does seem to represent a different stage of disease where the goals of treatment are different. But as long as the scans aren’t too bad, it looks like I’m here to fight another day.

Thanks,
Rob
Last edited by Rock_Robster on Tue Mar 08, 2022 2:28 am, edited 1 time in total.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

Claudine
Posts: 680
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Thoughts on treatment approach - stage IV recurrent

Postby Claudine » Mon Mar 07, 2022 7:53 pm

That’s the spirit, RR! Another day during which cancer research makes progress, during which a new cure may be found.
Wishing you the best for upcoming tests and treatment.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

boxhill
Posts: 787
Joined: Fri Apr 06, 2018 11:40 am

Re: Thoughts on treatment approach - stage IV recurrent

Postby boxhill » Tue Mar 08, 2022 5:43 pm

I have a globe at my left elbow, and it appears that Maine is just about directly through the earth's core to Australia. I'm beaming positive energy straight through to you. :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Thu Mar 17, 2022 12:22 am

Got the surgical pathology back today; 5 of the 11 celiac nodes removed showed CRC cells. Obviously not great, but I must admit I was almost expecting worse from the way the surgeon described it. Interestingly it also described “areas of dirty necrosis” within the tissue sample; from what I can see necrosis is either bad (ie tumour cells being aggressive enough to outgrow their own blood supply), or good (eg an immune-mediated response which result in killed tumour cells). Given I have no way of knowing, I’m going to hope it’s the latter! Fortunately the visible liver lesion (and possible lung) has been largely stable since Nov last year without any treatment. Had a chest CT and liver MRI today to get an update on things, and am meeting with the radiation oncologist again on Monday. Hopefully what’s there is only what we know about, and it can be targeted with SBRT (incl. the remaining nodes). We’ll also discuss restarting systemic therapy again based on scan results.

On the plus side, my mild hyperbilirubinemia seems to have completely resolved by itself - which is a relief.

In the meantime I’m just doing my usual complementary routine, plus adding in THC/CBD and IR saunas for the sake of it, and possibly some IVC. Might look into combining some hyperthermia treatment with the SBRT if it goes ahead. I asked my onc about combining a PD-1 checkpoint blockade with the radiation in the hope of an abscopal response; his view was that it isn’t even confirmed that this exists, and he can’t prescribe a PD-1 inhibitor without an indication given it also has risks. I’m also concerned it could exclude me from I/O trials later, which would likely be my preference if available.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

stu
Posts: 1561
Joined: Sat Aug 17, 2013 5:46 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby stu » Fri Mar 18, 2022 2:44 pm

Hi ,
Hope the results from the CT scans goes well and you can get moving forward with your new plan . Back when my mum was treated they gave very little information and after one consultation they said “We found what we expected ..cancer !” . I often wonder what exactly the extent of that was at that point but without that information she had to press on regardless through the next window of opportunity open to her !
Hope this window takes you where you need to go !
take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Mon Mar 21, 2022 8:52 pm

OK scans are in; not perfect but definitely could be worse. There’s the larger awkward liver met that we knew about, plus two new smaller liver lesions toward the edge of segment V. Nothing noted on lymph nodes (unsurprising given everything macroscopic was theoretically removed and there’s still fluid/inflammation from surgery 2 weeks ago). Good news is the lung thing is either stable at 2.8mm or not a met - either one is fine with me right now. Other good news is the surgeon clarified that he believes he got all the lymph nodes he could see, though is still concerned for residual microscopic disease.

The 3 liver things are suitable for SBRT (or SBRT/RFA mix), which is great. However given the new liver lesions have come up relatively recently, the rad onc is concerned about a lack of systemic control and wants me to do some chemo before the radiation treatment. Surgeon agrees.

However, my usual oncologist (now in another state) is recommending SBRT on everything now, then surveillance. Reckons the chance of an amazing chemo response is relatively low now, and given we can treat everything we can see directly, he doesn’t like administering chemo for disease he can’t see and can’t measure a response. He accepts it’s almost guaranteed something else will appear in time, but feels that if all I’m left with is microscopic peri-nodal disease then that may be quite indolent, and we would deal with anything when it happens. More chemo now is unlikely to change the course, and just make me feel worse with more side effects.

He did concede that some chemo now would be reasonable/arguable (eg maybe 4 cycles and scan), but that he wouldn’t be pushing it and he certainly wouldn’t be delaying SBRT to do it.

I’m with meeting the (new) local oncologist on Thurs evening. I doubt he’ll agree with my usual onc, so this should be interesting.

My personal view is it’s hard to argue against doing some chemo now, but it’s tough to go against my oncologist. This guy is good. He’s a colorectal / liver cancer specialist, university professor and Lab Head / PI in CRC trials and research. Well-recognised as one of the best in the country (Australia) for CRC. He’s done an amazing job of balancing risk and benefit, and keeping me not just alive but also with an extremely good quality of life throughout my 3+ years so far since stage IV diagnosis.

Aiming for a plan by end of the week.

Thanks again for all the messages of support and well wishes!
Last edited by Rock_Robster on Mon Mar 21, 2022 10:15 pm, edited 10 times in total.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

MadMed
Posts: 123
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Thoughts on treatment approach - stage IV recurrent

Postby MadMed » Mon Mar 21, 2022 9:05 pm

Quite the battle RR, wish you good success. Is Chemo after sbrt an option ? According to my googling it seems to be beneficial.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Mon Mar 21, 2022 10:11 pm

MadMed wrote:Quite the battle RR, wish you good success. Is Chemo after sbrt an option ? According to my googling it seems to be beneficial.

Thanks MadMed - yes definitely; most of the docs here are suggesting chemo then SBRT, but I feel like I could convince them to do SBRT then chemo (or perhaps squeeze the SBRT in between cycles with maybe a week delay. It’s only a 3 fraction / 6 day treatment).
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5


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