Help with advice for stage 4 newly diagnosed

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kirac
Posts: 258
Joined: Sun Jun 09, 2013 10:34 pm

Help with advice for stage 4 newly diagnosed

Postby kirac » Mon May 02, 2022 2:04 pm

Hi all:

It's been a long time since I posted. My ex-husband had colon cancer in 2013, stage 3b, diagnosed 3 weeks after our second child was born. Luckily he cured after surgeries, radiation, Oxy, 5FU, etc in a year. He was lucky and cancer free. He is lucky to be cancer free now.

I'm back asking now on behalf of someone dear to me. This is what I know.

He is stage 4, found out a week ago he has cancer because of severe back pain. Found out Saturday it is stage 4 and in his vertebrae and liver. I want to tell him to get second opinions at MD Anderson and Memorial Sloan Kettering. What would you suggest? He is located in Colorado. I'm putting together a list of resources for him.

Thanks.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/

roadrunner
Posts: 255
Joined: Sun Jan 12, 2020 8:46 pm

Re: Help with advice for stage 4 newly diagnosed

Postby roadrunner » Mon May 02, 2022 3:25 pm

Awesome on your husband’s story!

I think the first question in the “second opinion” category is evaluation of the “first opinion.” Does it seem open to debate/off for some reason? Is there a reason to doubt the sufficiency of the current team? How interested is the patient in pursuing a second opinion? (Well, those were a few “first questions” :D)

Still, some would regard a complicated Stage IV diagnosis as per se requiring a second opinion. Depending on the tendency of the patient to be open to pursuing/seeking out aggressive therapeutic approaches, trials, or even alternative therapies, I would lean toward that view.
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign

MadMed
Posts: 145
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Help with advice for stage 4 newly diagnosed

Postby MadMed » Mon May 02, 2022 3:35 pm

I agree with roadrunner, YES to second opinion but the first opinion has to be formed. ie, after CT/MRI/treatment recommendation, then get a second opinion to see if there's better/alternate recommendations. Also, which cancer ? colon, rectal ? The treatments for colorectal is more diverse now, even same cancer depending on MSS/MSI can be completely different.

We're not pushing back, just giving more food for thought and substance to getting second opinion.
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

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kirac
Posts: 258
Joined: Sun Jun 09, 2013 10:34 pm

Re: Help with advice for stage 4 newly diagnosed

Postby kirac » Mon May 02, 2022 3:53 pm

Good question. It just seems like his cancer is very advanced as it is in his vertebrae and it did something to his spine so he is in massive pain (has problems walking and sleeping). I need to find out more. I'm concerned that if he doesn't have aggressive/good treatment it will spread worse.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/

Claudine
Posts: 694
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Help with advice for stage 4 newly diagnosed

Postby Claudine » Mon May 02, 2022 5:38 pm

Welcome to the forum, I’m sorry you have to deal with this terrible disease again thought...
As you can see from my signature, my husband was diagnosed 4 years ago because of severe back pain which turned out to be a lytic met in his L4 vertebrae. He underwent 5 weeks of EBRT radiation locally, which didn’t work, before traveling to OHSU (Portland, OR) the following year where he had SBRT with much better success. So my advice is - definitely visit a large hospital where more advanced technologies are available!
Good luck with the fight xxxxx
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

Rock_Robster
Posts: 689
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Help with advice for stage 4 newly diagnosed

Postby Rock_Robster » Mon May 02, 2022 7:17 pm

Again good comments above. Personally for a CRC second opinion I’d pick MSK over MDA. If you’re travelling anyway, City of Hope in LA is very good too. However most important thing is being at an NCI centre, given the complexity of disease and need for a multidisciplinary treatment plan. In Colorado, this would be the University of Colorado Cancer Center.
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

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Peregrine
Posts: 97
Joined: Tue Mar 01, 2022 1:18 am

Re: Help with advice for stage 4 newly diagnosed

Postby Peregrine » Mon May 02, 2022 9:08 pm

Rock_Robster wrote:Again good comments above. Personally for a CRC second opinion I’d pick MSK over MDA. However most important thing is being at an NCI centre, given the complexity of disease and need for a multidisciplinary treatment plan.

FYI, there is an NCI centre in Aurora, Colorado:

How to Find an NCI Designated Comprehensive Cancer Center:
https://www.cancer.gov/research/nci-rol ... nters/find

NCI Designated Comprehensive Cancer Center, Aurora, Colorado
https://www.cancer.gov/research/infrast ... /ucolorado

====
Also, your friend might want to check out this web-site:

The Second Opinion Project
https://paltown.org/second-opinion/


    "Most stage iv crc patients are considered terminal by their care teams, and the standard of care is “chemo for life.” Some stage iv patients can benefit from more aggressive treatment, however; these patients can survive well past 5 years, and can even achieve a durable “no evidence of disease” response. In most cases, patients need to seek out a second opinion to understand and access these more aggressive treatment options.”

    Felix Lu
    The Second Opinion Project provides reimbursement of up to $500 for expenses for patients seeking a second opinion on treatment options.
    Applications are open to COLONTOWN members who are currently stage IV. Patients with primarily liver involvement will be given top priority; other stage iv patients will be considered as resources are available.
    This program is administered by PALTOWN on behalf of the Lu Family Fund. Applications are reviewed and approved by the Lu Family Fund.
    How the Program Works
    Once your completed application is submitted, it will be reviewed by PALTOWN staff and forwarded to the Lu Family Fund for consideration. You will be contacted about the status of your application within 10 business days.

    If approved, we will ask you to submit receipts via email within 5 business days of your appointment; these can be photos or screenshots. Eligible expenses include:

    Travel, including air or train fare, parking, gas, rideshare or taxi
    Lodging (Hotel, AirBnB) for up to 2 nights
    Out-of-pocket expenses for the appointment itself
    You will receive reimbursement from the Lu Family Fund via PALTOWN as soon as your receipts have been submitted and processed. Reimbursement can be paid via check or PayPal"

Rock_Robster
Posts: 689
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Help with advice for stage 4 newly diagnosed

Postby Rock_Robster » Mon May 02, 2022 9:57 pm

Thanks Peregrine. I must have edited my post while you were writing yours - nice work.
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

Vana3
Posts: 56
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Help with advice for stage 4 newly diagnosed

Postby Vana3 » Mon May 02, 2022 10:02 pm

I see Dr. Christopher Lieu at UC health in Denver. He is very kind and an “out of the box” thinker. They have treated me aggressively and gotten me to stable. I have been a patient at Dana Farber and MSK. MSK is wonderful too but I think Dr.Lieu would be a great local place to get started right away with good treatment. In retrospect with what I know now, I would start at MD Anderson as they have soooo many good trials but to get into many of them the patient has to have been initially treated there….
Sending your friends good thoughts.
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5
5 cm tumor in cecum removed, 17 + out of 45 LN
Cea 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET liver spots
9/19 - 3/20 FOLFOX
1/20 CEA 3.6,4.4, 4.6, 4.6
Liver resect 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB CRC
post surgery cea 2.6
11/20 clear scans
2/21 clear scans
4/21 spleen met
5/21 pet scan picks up subtle concerns in liver as well as confirms spleen
Cea 4.6
5/21 to current folfiri
Cea 10

zephyr
Posts: 327
Joined: Thu Aug 18, 2016 7:31 am

Re: Help with advice for stage 4 newly diagnosed

Postby zephyr » Fri May 27, 2022 7:41 pm

Because you mentioned Stage IV and massive pain, your friend might benefit from working with a palliative care team that also knows the medical system really well and can help your friend navigate all the different parts (treatment decisions, pain management, communication, stress management, etc). One such group I recently came across is Mettle Health. It's a small, unique group of doctors, nurses, and therapists who have all been patients or caregivers themselves and have extensive experience working with people who have chronic and/or life-threatening illnesses. You can book a free 20-minute consult to see if it's a good fit. BTW, I have NO financial or other interest in Mettle Health except as someone who uses (and recommends) their services.

https://www.mettlehealth.com
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS, inop lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Dec-2020 Progression
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy


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