Stage 4 - liver mets disappeared

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Rgp
Posts: 6
Joined: Thu Nov 15, 2018 3:08 pm

Stage 4 - liver mets disappeared

Postby Rgp » Thu Nov 15, 2018 4:29 pm

Hi all
I wanted to see if anybody is the same boat as me. I was diagnosed with stage 4 in March of this year. Pet/CT on 3/12 showed one liver met 2 cm in size. MRI a week later showed two more liver mets both are little bigger than 1 cm. Also some enlarged perirectal lymph nodes. Started the neo adjuvent chemo on 3/26 folfox/ avastin. Avastin was stopped after 4 cycles to prepare for surgery. After 6 cycles did an MRI on 6/12. MRI showed that the liver mets disappeared. Also did a chest CT which was also clear. Pelvis MRI showed the tumor has shrunk and the lymph nodes are back to normal size.

My colon resection and liver resection was scheduled on 7/23 at the same day. I signed the consent for both and went into the OR only to wake up after 12 hours to realize that the liver surgeon decided not to do the liver resection. He couldn't see any mets and he didn't want to resect a perfectly healthy liver. I had some complications from the surgery such as an abscess and probable fistula. So they installed a drain to treat the abscess. This delayed the adjuvent chemo by a month. So my oncologist decided to another scan on 9/13 which showed no evidence of disease in my liver.

Started my adjuvent chemo last month. My oncologist kept on insisting on doing a liver resection. He likes to be aggressive in his treatment. So I met with another liver surgeon and two other oncologists including Dr Saltz with MSK, for a second opinion. They all recommended not doing the liver resection. So I conveyed that to my oncologist and he is on board. But now he is recommending going on maintenance treatment after the adjuvent chemo. He is recommending pills every three weeks for the next five years. I don't know if it's going to be an overkill. But I would like to trust my oncologist as he is the first one to assure me it was a curable disease even though mine was stage 4. His logic is that there may be microscopic cancer left in the liver since we didn't do a resection. I am hoping I can get some advice from people who had a similar experience as me; disappearing liver mets.
Thanks
Last edited by Rgp on Fri Nov 16, 2018 8:04 am, edited 1 time in total.
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. Liver resection was scheduled, but in the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
10/26/18 drain removed

Nohogirl
Posts: 87
Joined: Sun Oct 14, 2018 12:15 am

Re: Stage 4 - live mets disappeared

Postby Nohogirl » Thu Nov 15, 2018 10:07 pm

Wow. What a turnaround! In my opinion this means your cancer responded very well to chemo and perhaps is not an agressive kind. Sorry I can't give you any advice on adjuvant chemo but I do want to say Congrats on your No evidence of disease.
04/18 DH 49 diag.stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm including entire rectum out
Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
Regression Grade 3
10/29 Started Folfox

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 - live mets disappeared

Postby stu » Fri Nov 16, 2018 2:41 am

Hi ,
That’s fantastic news. Very occasionally you do read of someone having a complete pathological response to chemo .
My mum responded so well the tumours would no longer be visible on her scan but within a month would start growing again .
I can see where your oncologist is coming from but I wonder where he is getting the five years from . But it’s great he is so positive .
You can always review the duration as you go along .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rgp
Posts: 6
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - live mets disappeared

Postby Rgp » Fri Nov 16, 2018 7:39 am

Thank you Nohogirl and Stu. There is no way to know if it's a complete pathological response other than wait and find out. Some of the things that are going for me are:
1) The response was after just 6 rounds of chemo, not the standard 12 cycles.
2) I went without almost 4 months of chemo due to surgery and chemo and scans were clear after that.
I am really hoping it stays that way. Doctors are thinking there is no point of doing the liver resection even using the original MRI as guidance.
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. Liver resection was scheduled, but in the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
10/26/18 drain removed

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 - liver mets disappeared

Postby stu » Fri Nov 16, 2018 10:50 am

Quite remarkable that you can go four months and still be clear . One thing for sure either way your prognosis is looking good when you get a response like that . You must be up there in the top 2% of responders .
Enjoy every minute ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rgp
Posts: 6
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Fri Nov 16, 2018 11:53 am

Thank you Stu for those kind words. That's definitely encouraging for me. I was devastated when I got the diagnosis. I got two boys 7 and 9 . Also I had just started my own company which was doing pretty good. All of sudden this happened. But I am definitely going to fight this now. All the great stories I read hear are giving me a lot of hope. And the way everybody props up each other here is amazing :D
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. Liver resection was scheduled, but in the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
10/26/18 drain removed

Ehut
Posts: 197
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Stage 4 - liver mets disappeared

Postby Ehut » Fri Nov 16, 2018 3:18 pm

I don't think I would want to be on a long term chemo regimen if there's no sign of active disease. I would probably opt for stopping chemo and want VERY close surveillance. If something comes back in the liver, then go for the surgery and more chemo. Just my uneducated opinion.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

Rgp
Posts: 6
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Fri Nov 16, 2018 4:44 pm

Thank you Ehut. I am really confused at this point as what to do. My oncologist asked what if it comes back in an inoperable way or in other places. But MSK oncologist thinks my cancer is not a very aggressive one and we may get a window for surgery if we closely monitor it and if it ever comes back. It's kind of an uncharted territory for my oncologist as he never had any patients with a response like mine. And he also agreed that the maintenance treatment is very non-standard approach. He is from Georgetown and I see online that they are one of the biggest proponents of maintenance chemo. I don't know if that's one of the reasons he is pushing for it
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. Liver resection was scheduled, but in the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
10/26/18 drain removed

CatzinDJ
Posts: 45
Joined: Thu Dec 22, 2016 12:06 pm

Re: Stage 4 - liver mets disappeared

Postby CatzinDJ » Sat Nov 17, 2018 10:51 am

I don't have enough experience to answer this question with any wisdom but that hasn't stopped me from replying before! You responded so well with so much speed and you are young. I would probably opt for the 3 pills per week for all 5 years to know I did everything I could to try to prevent it from coming back.
53 & Female
DX: Rectal Cancer (RC) diagnosed in Thailand
Tumor Location: Rectum
Tumor type: invasive adenocarcinoma
Tumor size: 4 mm
Tumor grade: low grade
Baseline CEA value (4.46) 5/2016
CEA 6/2/2016 4.8
Lynch- Negative.
LAR 7/13/2016 in Seatle, Wa
Home 7/18/2016.
CEA 12/9/2016 2.8
CEA 6/8/2017 5.6
Colonoscopy and Cat scan June 2017 NED
CEA 3/2018 2.9
TB latent recently diagnosed.

martd
Posts: 61
Joined: Tue Nov 21, 2017 3:48 pm

Re: Stage 4 - liver mets disappeared

Postby martd » Sat Nov 17, 2018 12:22 pm

Oncologist typically lean towards treatment. That is good advice your's gave you. Maybe an option might be to continue the maintenance chemo for at least a year or two and then choose to stop if the monitoring goes well. It's a fine balancing act with risk vs reward. Maybe talk with the oncologist about that. If the health risks are relatively low with the maintenance chemo that could help you with making a decision.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

User avatar
betsydoglover
Posts: 940
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Stage 4 - liver mets disappeared

Postby betsydoglover » Sat Nov 17, 2018 12:47 pm

Your case sounds a lot like mine - solitary liver met that was gone from CT, PET and MRI after 6 treatments of Xeloda/oxaliplatin/Avastin - that was back in 2005 and I am still here. While I did have 1 lung recurrence, my liver has been clear since then.

My oncologist did not think I should I should pursue liver resection at that time. I decided to consult with a liver surgeon at Johns Hopkins - he said flat out that he would not operate at that time. In the Spring of 2006, I was evaluated for a clinical trial at NIH that involved liver RFA. I was turned down because they could find no evidence of any liver disease. The surgeon at NIH who was running the trial told me that were he still in private practice, he would not operate on me. So, one onc and 2 liver surgeons all agreed on not having surgery.

It is usually said that chemo alone cannot eliminate liver mets, but I am proof that it can (although it isn't the norm).

Good luck,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Rgp
Posts: 6
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Sat Nov 17, 2018 5:40 pm

Thank you all for the inputs. And Betsy looks like not only that our cases are similar, we almost went through the same hospitals. The surgeon who refused to do my liver surgery on the scheduled day was from Hopkins. I went to Dr Fishbein with Georgetown for a second opinion and he also said the same thing. He wouldn't mess with the liver if there is no eveidence of disease. In fact he was so sure that my liver met would've returned after for months no chemo. When he saw clear scans, he was comparing case to another partient who had similar experience. Anyways your whole experience gives me a lot of hope.
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. Liver resection was scheduled, but in the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
10/26/18 drain removed

mariane
Posts: 635
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4 - liver mets disappeared

Postby mariane » Sat Nov 17, 2018 6:33 pm

It sounds in a way like my situation. I had complete pathological response and complete radiological response in smaller metastases. However, my oncologist suggested using the HAI pump. I would recommend it highly. There is much less recurrence. I posted a few articles about complete radiological and complete pathological response. Still I had 6 months of pump chemo and 5FU systemic after complete pathological response. No I have been off chemo for 2 years. So far so good. Good luck!
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

caregiverinSD
Posts: 2
Joined: Sun Mar 11, 2018 10:55 pm

Re: Stage 4 - liver mets disappeared

Postby caregiverinSD » Sun Nov 18, 2018 12:19 am

So glad to hear of your response! My husband, who was a week away from turning 40 last year, was also diagnosed Stage 4 CCR cancer with a tumor in the liver and suspected tumor(s) in the lungs. Did a course of low dose chemo/ radiation to rectal tumor, then RFA was done to the liver and lungs, then 3 months Oxy/ Avastin, then surgery (including liver resection). No sign of cancer anywhere. Complete pathological response. The only reason they knew where to look in the liver was because a marker had been placed there early on. He did an additional 3 months of chemo and has been off chemo for the last 6 months. So far, so good. We also have little kids. Cancer is a nightmare but with a response like this, it gives hope that we'll be able to keep making memories as a family. Congrats on the response!

Rgp
Posts: 6
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Sun Nov 18, 2018 9:16 pm

caregiverinSD wrote:So glad to hear of your response! My husband, who was a week away from turning 40 last year, was also diagnosed Stage 4 CCR cancer with a tumor in the liver and suspected tumor(s) in the lungs. Did a course of low dose chemo/ radiation to rectal tumor, then RFA was done to the liver and lungs, then 3 months Oxy/ Avastin, then surgery (including liver resection). No sign of cancer anywhere. Complete pathological response. The only reason they knew where to look in the liver was because a marker had been placed there early on. He did an additional 3 months of chemo and has been off chemo for the last 6 months. So far, so good. We also have little kids. Cancer is a nightmare but with a response like this, it gives hope that we'll be able to keep making memories as a family. Congrats on the response!


I missed out on the marker part. There was some initial talks from the oncologists on that, but some how we didn't end up doing it. So liver resection is not a possibility for me now. So I am going to take advices I got here and ask my oncologist about HAI pump or go with maintenance chemo. Either way hearing all your stories definitely giving me some peace of mind. I was wreck when diagnosed, but I am much more positive about it. Thank you all
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. Liver resection was scheduled, but in the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
10/26/18 drain removed


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