Stage 4 - liver mets disappeared

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Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 - liver mets disappeared

Postby Pyro » Fri May 03, 2019 7:40 am

Brearmstrong wrote:Timely post as I've been struggling with this same question the last few weeks. I've been NED for almost a year but have been on xeloda. My onc also says no to Avastin if no active disease and it caused a nasty pulmonary embolism when I was on it so I'm ok with his stance. However, xeloda has been increasingly very difficult for me. He has had to reduce dosage twice now and I've struggled to keep much needed weight on. My hand/foot syndrome has been extreme. I went from running marathons to having to use a cane. Dermatologist/oncologist gave me tons of different cremes but nothing has helped. I just had to take another 2 week break as my feet were so swollen and had lost so much skin that I was at real risk from infection. So frustrating as I don't even believe chemo works on my particular situation. It stopped my recurrence from growing but no shrinkage with folfiri and avastin. I wonder if I'm just feeling horrible most of the time for NO real benefit and won't change the final outcome of this disease.. then throw in there that onc's disagree on maintenance chemo and it's a real mind game as to what to do... Please keep us posted on your decision and how you make out.


I’ve been thinking along the same lines, if Keytruda fails me I may ask the Onc, if the cancer is going to take me away anyway, why suffer in the chemo. The again, I may chicken out and do it but be pissed off the whole time, and sick.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Rgp
Posts: 22
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Fri May 03, 2019 11:28 pm

Pyro wrote:I’ve been thinking along the same lines, if Keytruda fails me I may ask the Onc, if the cancer is going to take me away anyway, why suffer in the chemo. The again, I may chicken out and do it but be pissed off the whole time, and sick.


I wouldn't call it chicken out. It's the fight. I know it's hard. But we have to do it, if not for us, for the people who care about us.
I am really hopeful that keytruda will work for you. I will pray for you. You will be fine.
40 yr m
3/18 stage 4a, T3, N0, 3 liver Mets
3/18-7/18 6 chemo-folfox and avastin, radiation of colon
6/18 MRI- liver mets disappeared
7/18 rectal resection. No liver resection
10/18 adjuvent chemo, folfox
7/19 2 liver mets
8/19 liver resect, HAI pump, ileostomy reversal
9/19 bile duct surgery, fistula, new colostomy
9/9-12/19 adjuvent chemo FUDR
9/20 2 liver mets
9/20-11/20 FUDR & irenotecan
12/20 ablation of 2 liver mets
9/21 same 2 liver mets back
9/21-11/21 FUDR & irenotecan
12/21 SBRT

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 - liver mets disappeared

Postby Pyro » Sat May 04, 2019 6:45 am

Rgp wrote:
Pyro wrote:I’ve been thinking along the same lines, if Keytruda fails me I may ask the Onc, if the cancer is going to take me away anyway, why suffer in the chemo. The again, I may chicken out and do it but be pissed off the whole time, and sick.


I wouldn't call it chicken out. It's the fight. I know it's hard. But we have to do it, if not for us, for the people who care about us.
I am really hopeful that keytruda will work for you. I will pray for you. You will be fine.


I appreciate it, I pray all the time, when I’m not pissed at God but I guess that’s a type of praying. I did my last 2 rounds for the kids, 80 rounds is a bit much, I know people have done more. I had a blood test yesterday, results Monday, we will see.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Rgp
Posts: 22
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Wed Jul 31, 2019 9:42 pm

So my liver mets showed up again; after almost an year of hiding. I talked to two liver surgeons so far. Dr Fishbein with Georgetown and Dr Jin He with Hopkins. Both are saying the Mets are resectable. I am not sure who to go with. If any of you ever had an experience with either of these doctors, please help me out. I am looking into MSK also, but don't know liver surgeons there.
40 yr m
3/18 stage 4a, T3, N0, 3 liver Mets
3/18-7/18 6 chemo-folfox and avastin, radiation of colon
6/18 MRI- liver mets disappeared
7/18 rectal resection. No liver resection
10/18 adjuvent chemo, folfox
7/19 2 liver mets
8/19 liver resect, HAI pump, ileostomy reversal
9/19 bile duct surgery, fistula, new colostomy
9/9-12/19 adjuvent chemo FUDR
9/20 2 liver mets
9/20-11/20 FUDR & irenotecan
12/20 ablation of 2 liver mets
9/21 same 2 liver mets back
9/21-11/21 FUDR & irenotecan
12/21 SBRT

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 4 - liver mets disappeared

Postby boxhill » Thu Aug 01, 2019 2:47 pm

Sorry to hear they are back, Rgp. Are they the "same" mets; that is, in the same place? I am wondering whether treating the whole liver with the HAI pump might be more effective in the long term. Certainly something to look into.
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

Rgp
Posts: 22
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Thu Aug 01, 2019 3:41 pm

boxhill wrote:Sorry to hear they are back, Rgp. Are they the "same" mets; that is, in the same place? I am wondering whether treating the whole liver with the HAI pump might be more effective in the long term. Certainly something to look into.


I was told it's the same mets in the same location. I am wondering about the HAI pump too. Is it possible to get the pump after the resection or I have to do it at the time of resection?
Thanks
40 yr m
3/18 stage 4a, T3, N0, 3 liver Mets
3/18-7/18 6 chemo-folfox and avastin, radiation of colon
6/18 MRI- liver mets disappeared
7/18 rectal resection. No liver resection
10/18 adjuvent chemo, folfox
7/19 2 liver mets
8/19 liver resect, HAI pump, ileostomy reversal
9/19 bile duct surgery, fistula, new colostomy
9/9-12/19 adjuvent chemo FUDR
9/20 2 liver mets
9/20-11/20 FUDR & irenotecan
12/20 ablation of 2 liver mets
9/21 same 2 liver mets back
9/21-11/21 FUDR & irenotecan
12/21 SBRT

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 4 - liver mets disappeared

Postby boxhill » Thu Aug 01, 2019 3:55 pm

I'm not one of those who are super-well-informed about HAI, but I have the impression that if you are opting for HAI at MSK that you put yourself in their hands and they take care of everything liver-related.
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


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