All Chemo's have stopped working

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neesha
Posts: 3
Joined: Tue May 19, 2020 10:57 pm

All Chemo's have stopped working

Postby neesha » Tue May 19, 2020 11:14 pm

My mother is 63. She had colon cancer which spread to her lungs and recently there were few mets found in brain.

1. FOLFOX regimen - Oxaliplatin - Stopped working
2. Xeloda + Avastin - Not effective any more in containing as the tumor in lung grew from 3 cm to 5 cms
3. Irinotecan + Xeloda + Avastin - Tumor is lung is still progressing and is 8cm now

Immunotherapy is not an option as pdl1 and MSI tests came negative.She got radiation for Brain. Dr has suggested Regorafenib is the last option. She has very bad reaction when
she took 80mg. Dr has told to reduce to 40mg and try. We are losing hopes. What are the options she has now ? Any positive stories would help.

boxhill
Posts: 520
Joined: Fri Apr 06, 2018 11:40 am

Re: All Chemo's have stopped working

Postby boxhill » Wed May 20, 2020 6:50 pm

People here have had cyber knife (I think that's the term) for brain mets, and wedge resections and other treatments for lung mets.

Was your mother's colon tumor resected?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes 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
5/19 MRI stable/NED
Suspend treatment

Rock_Robster
Posts: 495
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: All Chemo's have stopped working

Postby Rock_Robster » Wed May 20, 2020 10:04 pm

I agree that at this stage, long-term stability is more likely to be achieved via targeted radical treatments like SBRT/SABR and/or local resections or ablations. Has she had a referral either to a specialist thoracic surgeon (for the lung), and a radiation oncologist (for the brain)? I do know of several people who have been “cured” after lung surgery, and some who are still around and happy a long time after targeted brain radiation.

Good luck,
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

neesha
Posts: 3
Joined: Tue May 19, 2020 10:57 pm

Re: All Chemo's have stopped working

Postby neesha » Thu May 21, 2020 10:10 pm

Yes my mother had surgery done for her colon in 2009. Is surgery possible for her Lungs now given her age.
She being international patient we are waiting for second opinion from MSKCC. Not sure when MSKCC will respond given the situation.

Claudine
Posts: 346
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: All Chemo's have stopped working

Postby Claudine » Fri May 22, 2020 9:06 am

63 is young! Like others I’m surprised surgery hasn’t been brought up, if she only has one lung met. Hopefully you get a second opinion from MSKCC.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

boxhill
Posts: 520
Joined: Fri Apr 06, 2018 11:40 am

Re: All Chemo's have stopped working

Postby boxhill » Fri May 22, 2020 10:57 am

I totally agree with Claudine!

When I was diagnosed a couple weeks before my 65th birthday, my surgeon referred to me as "young and healthy." :D

There is no way she is too old for surgery or targeted radiation, and I am also surprised that it has not been discussed, at least. Time for some consults, IMHO.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes 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
5/19 MRI stable/NED
Suspend treatment

User avatar
Rob in PA
Posts: 2003
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: All Chemo's have stopped working

Postby Rob in PA » Tue May 26, 2020 5:31 am

I've had cyberknife on my lungs with great success and would recommend it to anyone as a treatment option...especially if your Mother "only" has on lung met. I'm assuming that since she has brain mets they won't do a lung resection since there is more than one organ involved.

I made a personal choice to stop chemo years ago because of it ineffectiveness for me and I put all my chips in the SBRT procedure which, ultimately, got me to the point where i went from having multiple mets in both lungs to having zero mets in one lung and 2 mets in the other. At that point, I was approved for VATS lung surgery which was successful....and here i still am today :D

Best to you and your Mom

Rob in Pa
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

Claudine
Posts: 346
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: All Chemo's have stopped working

Postby Claudine » Tue May 26, 2020 10:48 am

That's really great to read, Rob. My husband's oncologist does not plan to do any maintenance chemo, and although I know my husband is pretty happy about this (I can understand why), that gets me worried about recurrence (he had lung mets like you, among other things). It's great to know that you haven't experienced recurrence after your lung SBRT and cyberknife, even without maintenance chemo! Cheers to a long chemo-free life!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

zephyr
Posts: 283
Joined: Thu Aug 18, 2016 7:31 am

Re: All Chemo's have stopped working

Postby zephyr » Wed May 27, 2020 4:34 pm

neesha wrote:Yes my mother had surgery done for her colon in 2009. Is surgery possible for her Lungs now given her age.


Assuming she has good lung function and no other pre-existing conditions that might interfere with a successful surgery, being 63 shouldn't be an issue. As others have mentioned, she might have other options like targeted radiation (SBRT), maybe ablation too. If she can get rid of the brain mets, you might want to consider going to Germany for the laser surgery.

https://www.fachkrankenhaus-coswig.de/zentren/laserzentrum/laser-centre.html
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Continue Xeloda/Avastin

neesha
Posts: 3
Joined: Tue May 19, 2020 10:57 pm

Re: All Chemo's have stopped working

Postby neesha » Thu May 28, 2020 6:58 pm

Hello All,

Since my Mom had reaction to oxaliplatin, they have advised to do Oxaliplatin desensitization protocol to reduce her lungs mets which are growing. Has anyone gone through this protocol. Has it helped in getting rid of tumor. Her Tumor is 8 cm in left lung now. Any advices will help,


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