Fairly new to this and needing advice

Please feel free to read, share your thoughts, your stories and connect with others!
skimom
Posts: 76
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Fairly new to this and needing advice

Postby skimom » Fri Mar 24, 2023 9:46 am

Hello - First I’d like to thank all of you that take the time to post information, offer opinions and most of all support! I am not one to use social media much or post anything online but seeing all of the hopeful stories on here has made such a big difference for me so I feel the need to do so now. One day I plan to post a fantastic survivor story! Anyway… now to my issue. I was dx 12/11/22 after going to the hospital only because it was a Sunday as I didn’t think my problem was anything dire but needed attention. I had a pain in my chest that was getting worse. Didn’t feel like a heart attack, thought maybe heartburn (which I’ve never had so don’t know what it feels like) at worst I was expecting my gall bladder had an issue. When the ER doc came and told me I had multiple tumors in my lungs and liver but she was unsure where the suspected cancer originated I was beyond words shocked! I am active, fit, seemingly healthy mom and wife. I had NO symptoms of colon cancer! And so thankful that I still don’t. After an endoscopy and colonoscopy they found the primary tumor in my transverse colon. Being as it was blocking the colon they decided to remove it and insert port to begin chemo ASAP. I know pretty much nothing about medical things as I’ve been blessed with a mostly healthy life and family, Thanks be to God! The oncologist told me there is no cure for this because it is so advanced but to give me the longest time the only thing to do was and start Folfox with Avastin, which I did in January, (Avastin added after 2 treatments as I was still healing from surgery) and continue Avastin for as long as I can tolerate it. (Basically the rest of my life). I’ve now completed 6 rounds and had a scan this week that showed significant decrease in the liver and lung tumors. I am very excited about this news and want to make sure I’m doing the right thing going forward. Does anyone have advice on if I should seek another opinion (and from who) if there is a possibility of surgery to remove remaining tumors or if it is best to finish the 12 rounds and see where I am then? I do greatly appreciate you taking the time to read this and would feel so blessed for any advice you have.

With many blessings to you,
~Sara~
47yo F at DX
DX 12/11/22 Stage IV (liver & lung mets) KRAS PIK3CA
12/15/22 Primary tumor removed from Transverse Colon (4.3x4.0x0.6cm G2 3/15 lymph nodes. Clear margins)
01/06/23 started Folfox (10 cycles)
Initial CEA 5608
CEA after 4 rounds 1319
CEA after 6 rounds 427
CEA after 9 rounds 95
HAI pump installed 06/20/23
Start FOLFIRI and FUDR 07/05/23
CEA down to 37
31
21
18
9/2023 Switch back to FOLFOX due to new lung nodules
11/23 FOLFOX fail CEA up to 62

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Fairly new to this and needing advice

Postby beach sunrise » Fri Mar 24, 2023 1:47 pm

Never take surgical advice from an oncologist, never take oncology advice from a surgeon.
If it were me I would consult with lung and liver surgeons to nail down what they need to see in order to become a surgical candidate and then work towards that goal.
This forum is a good one for info of all kinds.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Fairly new to this and needing advice

Postby saltygirl » Fri Mar 24, 2023 5:14 pm

Not truth there is no chance of cure. Please get 2nd and 3rd opinion. Where are you being treated? You are young. I am mid 40s. I have met people who had liver & lung Mets and are now NED - cancer free.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

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

Re: Fairly new to this and needing advice

Postby rp1954 » Fri Mar 24, 2023 7:54 pm

skimom wrote: After an endoscopy and colonoscopy they found the primary tumor in my transverse colon. Being as it was blocking the colon they decided to remove it and insert port to begin chemo ASAP. ..

The oncologist told me there is no cure for this because it is so advanced but to give me the longest time the only thing to do was and start Folfox with Avastin, which I did in January, (Avastin added after 2 treatments as I was still healing from surgery) and continue Avastin for as long as I can tolerate it. (Basically the rest of my life). I’ve now completed 6 rounds and had a scan this week that showed significant decrease in the liver and lung tumors. I am very excited about this news and want to make sure I’m doing the right thing going forward.

You do need to stay in some kind of advanced treatment(s) and try get better ones under time pressures to improve the prognosis.

To better use the knowledge here, tell us more specifics about yourself and the cancer's data, read more, and follow up after reading. Some recent threads that may help.

You have to actively take effective steps to go beyond standard expectations.

Does anyone have advice on if I should seek another opinion (and from who) if there is a possibility of surgery to remove remaining tumors or if it is best to finish the 12 rounds and see where I am t

Yes, you need a lot of information and opinions while taking focused actions to improve things. You need to move faster to find, create or use windows of opportunity and change things.
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

skimom
Posts: 76
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: Fairly new to this and needing advice

Postby skimom » Fri Mar 24, 2023 8:12 pm

Thank you so much for the advice. Unfortunately I don’t really know any more information than that.. I do know that i don’t have the mutation for Lynch syndrome and the cancer is Adenocarcinoma. What other information do I need to get from my records? I live in Medford Oregon and am being treated here locally for now.
47yo F at DX
DX 12/11/22 Stage IV (liver & lung mets) KRAS PIK3CA
12/15/22 Primary tumor removed from Transverse Colon (4.3x4.0x0.6cm G2 3/15 lymph nodes. Clear margins)
01/06/23 started Folfox (10 cycles)
Initial CEA 5608
CEA after 4 rounds 1319
CEA after 6 rounds 427
CEA after 9 rounds 95
HAI pump installed 06/20/23
Start FOLFIRI and FUDR 07/05/23
CEA down to 37
31
21
18
9/2023 Switch back to FOLFOX due to new lung nodules
11/23 FOLFOX fail CEA up to 62

Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

Re: Fairly new to this and needing advice

Postby Nor Cal » Sat Mar 25, 2023 10:51 am

Hi Sara - sounds like comprehensive care is in order. I would talk to a liver surgeon, and an interventional radiologist at minimum. The standard of care you should expect would be a team approach (and maybe that's already happening behind the scene). Ask if your cancer center has a tumor board, and if so, when will your case be heard? Get a 2nd opinion from the best hospital you can get into. Ask about genetic testing like Foundation One. Press your oncologist for the plan: what if the tumors keep shrinking? What if they don't? What is 2nd and 3rd line treatment? How can they help you research trials?
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 55 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: Fairly new to this and needing advice

Postby IM64 » Sat Mar 25, 2023 4:26 pm

Hi Sara, Really sorry hear your story. I'm not sure I can give you any helpful advice because we also just started this unwanted journey. My wife was diagnosed about month before you and our cases quite similar - also adenocarcinoma with multiple lung and liver metastases. CEA was 4163 and 417 now, but CT doesn't show any tumors size changes - that is bad. If you have significant decrease in lung and liver tumors that is really great news!

After a visit to a couple of lung/liver surgeons, we found the main problem is mets in two (or more) organs. So liver surgeon refuse the case because we have lung mets, and same with lung surgeon - will not consider due to liver mets. And that is not only in Canada (we are in Canada). I found lot of hospital oversea also don't want mets in different places. That can be a main problem.

The second big problem (on mine opinion) is a limited time. Things can change quickly and available opportunities may be closed.

If your liver or lung is not heavily damaged and you can clean it by SBRT or something like that, it may open more possibilities to treat second more damaged place. This is one of the ways that we are considering now.

If your liver is unresectable due to heavy damage, I would read that article to understand different surgical options and prepare to liver surgeon conversation - https://www.hindawi.com/journals/hpb/2012/454026/

Please do not consider my advices as ultimate truth, my experience is very limited. There are lot of people with great experience and outstanding results on this forum. Also this forum is a klondike of knowledge about colorectal cancer.

I wish you all the best on this difficult journey.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Fairly new to this and needing advice

Postby DarknessEmbraced » Sat Apr 01, 2023 10:36 am

I'm glad you're tumors are shrinking! :) I hope your chemo goes well. *hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

skimom
Posts: 76
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: Fairly new to this and needing advice

Postby skimom » Sun Apr 09, 2023 1:20 pm

Thank you all for the support and advice! After repeatedly hearing “don’t give up, don’t take no for an answer, keep seeking additional opinions” I truly took it all to heart and Thanks be to God I finally found a surgeon willing to help me!
This is what he has in mind so far:

1. Continue systemic therapy with Dr. Savage.
2. Present case at GI tumor board in two weeks and contact patient with recommendations.
Pegna/Mayo.K-ras mutated colon cancer with synchronous metastatic disease to bilateral liver and bilateral lungs. Review imaging, pathology, and discuss sequencing of treatment.
3. Referral to OHSU medical genetics.
4. Order OHSU read of CT chest, abdomen and
pelvis.
5. Recommend holding bevacizumab for cycle
10 in preparation for a potential operation.
6. Return to clinic after 3 more cycles of chemotherapy with HAI protocol CT, CT chest, and labs including a CEA, CMP, CBC, INR, and other preoperative liver labs.

I am beyond words excited about the possibility of surgery as from what I’ve heard it is the best option.

I would appreciate any input any of you may have to this plan. If it weren’t for the advice I’ve received on here I would have had no idea what to say or ask to help myself or even realize that there were other options besides what my local oncologist had planned.

From the bottom of my heart, thank you all and I’m continuing to pray for healing for everyone suffering from this awful disease

~Sara~
47yo F at DX
DX 12/11/22 Stage IV (liver & lung mets) KRAS PIK3CA
12/15/22 Primary tumor removed from Transverse Colon (4.3x4.0x0.6cm G2 3/15 lymph nodes. Clear margins)
01/06/23 started Folfox (10 cycles)
Initial CEA 5608
CEA after 4 rounds 1319
CEA after 6 rounds 427
CEA after 9 rounds 95
HAI pump installed 06/20/23
Start FOLFIRI and FUDR 07/05/23
CEA down to 37
31
21
18
9/2023 Switch back to FOLFOX due to new lung nodules
11/23 FOLFOX fail CEA up to 62

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Fairly new to this and needing advice

Postby beach sunrise » Sun Apr 09, 2023 10:29 pm

I am very happy for you and yours news of advocating for yourself and making a path.
You are a fast learner and that is a good thing! You will not find all the answers in one place.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Fairly new to this and needing advice

Postby ANDRETEXAS » Wed Apr 12, 2023 2:42 pm

I am wishing you the best of luck with your treatment. I was on FOLFOX when I had Stage IIIb colon cancer. I took the maximum oxy with all 12 rounds. I'm having my 5-year colonoscopy tomorrow. I would never disagree with a second opinion. But as you continue to do your research, please stay positive. Your anxiety will be less if you keep your eyes on your treatment and take it one day at a time. You are you and can't be compared to anyone else or anyone else's treatment.
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 97 guests