Treatment options

Please feel free to read, share your thoughts, your stories and connect with others!
Tnguyen
Posts: 127
Joined: Wed Aug 24, 2016 6:47 pm
Facebook Username: Natalie Nguyen

Treatment options

Postby Tnguyen » Wed Oct 05, 2016 9:03 pm

Sorry for posting so much guys! Hope you don't mind.
I just wanted to ask if there are any more treatment option for stage iv with lung and liver mets. Her tumors are about 1.2 cm to the biggest in the lungs about 2.2 cm. so far I've been googling like crazy for the past 5 hours. Trying my best to find more options.
I want to ask my onc about puttin my mom on xeloda instead of stivarga, since I see that it had worked for a lot of people on here. Maybe look into RFA and VATS as well. There even a proton treatment center opening "soon" near Emory where mom is getting treated but it's not till January'...or so they claim.

So is there anyone who has tried xeloda and had good result?

Also is there any one who has also tried either RFA or VATs?

I know I'm probably not as smart as my onc, but I rather annoyed him with all the options there is , than sit my butt and cry.
Mom Diagnosed with CC stage iv with mets to liver and lung
16 rounds of folfox - failed
folfori- some growth, some shrank
folfori+vectibix- failed after 4 months (scans came back with some growth)
currently- (oct12/16) stivarga (2 pills a day)

Nik Colon

Re: Treatment options

Postby Nik Colon » Wed Oct 05, 2016 9:32 pm

Xeloda is just the 5FU in pill form.
Yes, there are others here who had VATS and/or RFA and/or SBRT. Hopefully they will see this and reply

Nik Colon

Re: Treatment options

Postby Nik Colon » Wed Oct 05, 2016 9:44 pm

If you put all the details in your signature (you can click the link in mine) about dx, tx, etc, it will help people be able to help more since there are different posts. We can then see it all on any post you make.

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Treatment options

Postby Pita » Thu Oct 06, 2016 1:37 am

I'm having Folfuri, Irinotecan and Avastin chemo with take home pump 5FU, all specifically to shrink/resolve lung mets. My biggest over 3cm.
Four more sessions then a CT scan to check on the nodules, if working then possibly more chemo and thoracic surgeon will analyze new CT with his opinion.
Possibly get a second opinion from another oncologist if you're not content with yours.
Best wishes and prayers for your Mom and you. ox
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Treatment options

Postby teri3 » Thu Oct 06, 2016 7:37 am

I'm in agreement with Pita, if you aren't happy with your oncologist get a second opinion, preferably at a NCI cancer center. Don't give up hope keep fighting for your Mom. Prayers for both of you.
HUGS,
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Treatment options

Postby Maia » Thu Oct 06, 2016 7:43 am

Tnguyen, maybe your mom could consider some immunotherapy trial --at the moment, immunotherapies are not standard of care for colon cancer, but there are already good results, in some cases (as you can see even reading about some fellows in this board). There are several types; Emory has a good clinical trials unit, so the doctors there surely will be able to guide you:

https://winshipcancer.emory.edu/patient ... index.html

"call (404) 778-1868 or send an email to winshipcto@emory.edu"

These might be some of the trials pertinent for your mom:

A Study of Nivolumab and Nivolumab Plus Ipilimumab in Recurrent and Metastatic Colon Cancer (CheckMate 142) https://clinicaltrials.gov/ct2/show/study/NCT02060188
(it's for both, MSI-H and non-H (i.e., MSS)
Emory University Recruiting
Atlanta, Georgia, United States, 30322
Contact: Bassel El-Rayes, Site 0008 404-778-1900

Phase 1/1b Study to Evaluate the Safety and Tolerability of CPI-444 Alone and in Combination With Atezolizumab in Advanced Cancers https://clinicaltrials.gov/ct2/show/study/NCT02655822

Winship Cancer Institute of Emory University Recruiting
Atlanta, Georgia, United States, 30322
Principal Investigator: Taofeek Owonikoko, MD

The following is not mainly immunotherapy but it's very interesting, since it's an initiative of the National Cancer Institute (NCI); it involves genetic testing for targeted therapy (many locations; I invite other persons, in other locations, to consider this one):

NCI-MATCH: Targeted Therapy Directed by Genetic Testing in Treating Patients With Advanced Refractory Solid Tumors or Lymphomas https://clinicaltrials.gov/ct2/show/study/NCT02465060

About immuno at Emory: http://news.emory.edu/stories/2016/07/h ... ampus.html

How immunotherapy differs from chemotherapy: https://www.youtube.com/watch?v=OhJyBWjcpvA

User avatar
Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Treatment options

Postby Jack&KatiesMommy » Thu Oct 06, 2016 8:16 am

Hi there!
I had the HAI pump to administer chemo to my liver WHILE I continued with systemic chemo. (The liver mets are the dngerous ones....they are the ones that you have to get under control.) I take it that your Mom's oncologisit thinks she sin't a candidate for a liver resection. I would get at least one other opinion on that. (Are youclose to NYC? Memorial Slaon Kettering is a great facility when dealing with liver mets.) I also have had 8 RFA procedures to small mets in my lungs (some had to be done several times as they were not completely erradicated with the first rfa procedure.) I guess the most important thing is to be sure that you ahve an oncologist that is working toward curing and/or extending your Mom's life as long as possible and is opent o using a multidisciplinary approach to do it....not just stick to standard chemotherapy protocols (whch we know will not cure her.)

Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

Tnguyen
Posts: 127
Joined: Wed Aug 24, 2016 6:47 pm
Facebook Username: Natalie Nguyen

Re: Treatment options

Postby Tnguyen » Thu Oct 06, 2016 8:42 am

Thank you for everyone concern and advice! Our onc is really sweet and the reason we picked him was due to his caring personality. But I will definetly look for more opinion if he's not willing to look pass the standard treatments!
Mom Diagnosed with CC stage iv with mets to liver and lung
16 rounds of folfox - failed
folfori- some growth, some shrank
folfori+vectibix- failed after 4 months (scans came back with some growth)
currently- (oct12/16) stivarga (2 pills a day)

Tnguyen
Posts: 127
Joined: Wed Aug 24, 2016 6:47 pm
Facebook Username: Natalie Nguyen

Re: Treatment options

Postby Tnguyen » Thu Oct 06, 2016 8:53 am

Jack&KatiesMommy wrote:Hi there!
I had the HAI pump to administer chemo to my liver WHILE I continued with systemic chemo. (The liver mets are the dngerous ones....they are the ones that you have to get under control.) I take it that your Mom's oncologisit thinks she sin't a candidate for a liver resection. I would get at least one other opinion on that. (Are youclose to NYC? Memorial Slaon Kettering is a great facility when dealing with liver mets.) I also have had 8 RFA procedures to small mets in my lungs (some had to be done several times as they were not completely erradicated with the first rfa procedure.) I guess the most important thing is to be sure that you ahve an oncologist that is working toward curing and/or extending your Mom's life as long as possible and is opent o using a multidisciplinary approach to do it....not just stick to standard chemotherapy protocols (whch we know will not cure her.)

Cynthia


Hi Cynthia! I'm definetly looking into RFA treatments too. But how are you considered qualified for it? My mom scan states that she has innumerable low attenuating hepatic masses...which I'm guessing is pretty bad. I live in Georgia, but would definetly go to nyc if RFA was an option. Does the treatment take long? We like our onc because he's very caring towards my mom, but if he's say there no other option or if he's not open minded to other treatment, I'll definetly look at other option! Thank you. It would be great if you can give me more info on RFA!! Thank you Cynthia
Mom Diagnosed with CC stage iv with mets to liver and lung
16 rounds of folfox - failed
folfori- some growth, some shrank
folfori+vectibix- failed after 4 months (scans came back with some growth)
currently- (oct12/16) stivarga (2 pills a day)

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Treatment options

Postby mypinkheaven » Thu Oct 06, 2016 1:15 pm

Tnguyen wrote:Thank you for everyone concern and advice! Our onc is really sweet and the reason we picked him was due to his caring personality. But I will definetly look for more opinion if he's not willing to look pass the standard treatments!


I've found from my own experience and from reading other posts, there are many oncologists who only think of chemo. I got so frustrated after seeing 3 different oncs in my HMO, I'm now switching to a NCI cancer center. There are options besides chemo!
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Treatment options

Postby mypinkheaven » Thu Oct 06, 2016 1:18 pm

Jack&KatiesMommy wrote: I also have had 8 RFA procedures to small mets in my lungs (some had to be done several times as they were not completely erradicated with the first rfa procedure.)
Cynthia


Hi Cynthia,

I'd love to hear more about your RFA procedures too. I have several small lung mets and would really like to get rid of them.

Sally
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

User avatar
Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Treatment options

Postby Jack&KatiesMommy » Thu Oct 06, 2016 2:17 pm

Tnguyen:
I would think that the first measure would be to address the liver masses. If possible, I would see if she is a candidate for the Hepatic Arterial Infusion pump. You can reasearch it a bit (it is often referred to as an HAI pump). It delivers concentrated chemo directly to the liver and that is the main concern when the liver is involved. MSKCC is a leader in use of the HAI pump in conjunction with systemic chemo. How many lung mets does she have? It can be hard to focus on one organ (and address the cancer there) when there are multiple sites involved. The RFA's that I had were to the lung mets....those popped up on me mostly after I had addressed the liver via HAI. Perhaps this could be an option?
Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

Tnguyen
Posts: 127
Joined: Wed Aug 24, 2016 6:47 pm
Facebook Username: Natalie Nguyen

Re: Treatment options

Postby Tnguyen » Sat Oct 08, 2016 2:24 pm

MaiaW wrote:Tnguyen, maybe your mom could consider some immunotherapy trial --at the moment, immunotherapies are not standard of care for colon cancer, but there are already good results, in some cases (as you can see even reading about some fellows in this board). There are several types; Emory has a good clinical trials unit, so the doctors there surely will be able to guide you:

https://winshipcancer.emory.edu/patient ... index.html

"call (404) 778-1868 or send an email to winshipcto@emory.edu"

These might be some of the trials pertinent for your mom:

A Study of Nivolumab and Nivolumab Plus Ipilimumab in Recurrent and Metastatic Colon Cancer (CheckMate 142) https://clinicaltrials.gov/ct2/show/study/NCT02060188
(it's for both, MSI-H and non-H (i.e., MSS)
Emory University Recruiting
Atlanta, Georgia, United States, 30322
Contact: Bassel El-Rayes, Site 0008 404-778-1900

Phase 1/1b Study to Evaluate the Safety and Tolerability of CPI-444 Alone and in Combination With Atezolizumab in Advanced Cancers https://clinicaltrials.gov/ct2/show/study/NCT02655822

Winship Cancer Institute of Emory University Recruiting
Atlanta, Georgia, United States, 30322
Principal Investigator: Taofeek Owonikoko, MD

The following is not mainly immunotherapy but it's very interesting, since it's an initiative of the National Cancer Institute (NCI); it involves genetic testing for targeted therapy (many locations; I invite other persons, in other locations, to consider this one):

NCI-MATCH: Targeted Therapy Directed by Genetic Testing in Treating Patients With Advanced Refractory Solid Tumors or Lymphomas https://clinicaltrials.gov/ct2/show/study/NCT02465060

About immuno at Emory: http://news.emory.edu/stories/2016/07/h ... ampus.html

How immunotherapy differs from chemotherapy: https://www.youtube.com/watch?v=OhJyBWjcpvA


Thank you so much for all the information and links. It warms my heart that you would take the time out to find all of these for me so thank you! I'll definetly look into these and I'm also very interested in immunotherapy
Mom Diagnosed with CC stage iv with mets to liver and lung
16 rounds of folfox - failed
folfori- some growth, some shrank
folfori+vectibix- failed after 4 months (scans came back with some growth)
currently- (oct12/16) stivarga (2 pills a day)

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Treatment options

Postby Maia » Sat Oct 08, 2016 6:54 pm

Tnguyen wrote: Thank you so much for all the information and links.(...)I'll definetly look into these and I'm also very interested in immunotherapy


So glad if that helps your mom/you! If you're interested on immunotherapies, these sites (from the Cancer Research Institute) have plenty of clear and up-to-date information:
http://www.theanswertocancer.org/

http://www.cancerresearch.org/cancer-im ... tal-cancer

Might you keep on the good path! : )

deebashari
Posts: 16
Joined: Wed Feb 07, 2018 2:51 am

Re: Treatment options

Postby deebashari » Mon Mar 12, 2018 12:49 am

Nik Colon wrote:If you put all the details in your signature (you can click the link in mine) about dx, tx, etc, it will help people be able to help more since there are different posts. We can then see it all on any post you make.


Are you NED right now? My mom has exact same KRAS mutation G12V and MSS. If not, are you undergoing any treatments? Have you considered immunotherapy?


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



Who is online

Users browsing this forum: No registered users and 128 guests