CRC Mets to liver and lungs

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Tri girl
Posts: 10
Joined: Sun Aug 06, 2017 10:26 pm

CRC Mets to liver and lungs

Postby Tri girl » Tue Mar 05, 2019 7:30 pm

My mom got diagnosed with Stage 3 CRC on 8/8/17. After chemo and radiation, she had surgery to remove the tumor. At the time of surgery, the cancer had not spread. She was only able to handle two rounds of post-surgery chemo. Fast forward to today: biopsy of the lungs and liver showed Mets to both.

My mom is 75 years old. I feel like her doctor has “written her off” . I want her to get a 2nd opinion. Does anyone have any experience with Cancer Treatment Centers of America? My mom lives in a small town in Iowa.

Does anyone have any experience with Mets to the liver and lungs? What was your treatment options?

I realize you need more information but her case is a very long case. It has been a rollercoaster ride to say the least. In and out of hospitals with C-diff, dehydration, CT scans, depression, etc etc. She now lives with a permanent colostomy bag which was an adjustment. Now, she realizes her bag saved her life.

Anyway, I have been lurking on this forum for the past year and have found it very comforting to know that there are many survivors with a lot of knowledge on here!! So, thank you for providing a place where one can find useful knowledge.

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: CRC Mets to liver and lungs

Postby kandj » Tue Mar 05, 2019 11:15 pm

My DH was diagnosed at 36 with stage 4 CRC with mets to the liver. So many they couldn't count them all. We sought out a second opinion from Memorial Sloan Kettering in NYC after MD Anderson gave us little hope for a cure or even longer term survival. We live 30 mins from Houston, so MD Anderson seemed like a god send. DH has had many ups and downs. He went from being a slim chance of surgery on the liver to a liver resection due to MSKCC. He did have a reoccurrence in the liver and that was treated with radiation (something that wasn't even an option 10 years ago) and so far, so good on the liver (he is 15 months post radiation). He did have a lung met pop up and that was resected before Thanksgiving. They have him on Xeloda right now. I will say, one of his saving graces when it comes to treatment is that he has tolerated it all very well. He has had 2 life threatening infections, but those were more likely liver complications then chemo related (chemo didn't help though!). Don't give up hope and definitely seek a second or third opinion.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

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

Re: CRC Mets to liver and lungs

Postby boxhill » Wed Mar 06, 2019 11:56 am

You should definitely seek a second opinion from a major cancer center, whichever is closest to you. Most likely Mayo or Cleveland Clinic, I would think.

I know I keep harping on this in various posts, but is your mother's tumor MSS or MSI? BRAF wild or mutated? KRAS wild or mutated? Right side or left side? You need to know these things in order to know what courses of treatment would be best for her. Especially if she couldn't tolerate chemo before. (What kind? What was the problem? There are solutions to intolerance such as lengthening infusion time and/or desensitizing.) For example, if her tumor was right-sided with KRAS mutation and MSI-H, it is less likely that a 5FU treatment will help her, but much MORE likely that Keytruda--which can be much, much easier on the body--will help her. It has been standard practice to force people to go through Folfox or Folfiri or the like before giving them access to immunotherapy, but that is changing rapidly and it is something you could advocate for IF her tumor genetics are suitable. Even if she is MSS, if her tumor has a high mutational burden, they are now trying keytruda on it.
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

Tri girl
Posts: 10
Joined: Sun Aug 06, 2017 10:26 pm

Re: CRC Mets to liver and lungs

Postby Tri girl » Wed Mar 06, 2019 10:05 pm

I am wondering what tumor you are talking about? The one on her lungs or liver? Or, the original tumor assoc. with CRC? Does the biopsy tell the mutation? Why wouldn’t the oncologist tell us this info?

The chemo drug that my mom had a very difficult time with was called Oxiliplatin.

We met with the oncologist today to go over options. If my mom does no treatment, she has less than 6 months. With chemo treatment (Folfox), she maybe has 1-2 years.

We are in a state of shock. My mom has decided not to get a 2nd opinion. I do not want to force the issue. She wants to go ahead with chemo. I will ask the oncologist about the various mutations. Thank you so much for providing your expertise.

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

Re: CRC Mets to liver and lungs

Postby Pyro » Wed Mar 06, 2019 10:26 pm

My main tumor as well as a liver met we’re both tested, I’m not sure biopsied is the correct word, genetically tested is better. Ask your Onc, sometimes insurance companies put up a fight to get the testing. And the Oxi is tough, by far the worst I’ve been on.
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!

Tri girl
Posts: 10
Joined: Sun Aug 06, 2017 10:26 pm

Re: CRC Mets to liver and lungs

Postby Tri girl » Wed Mar 06, 2019 11:17 pm

I would like to know how an oncologist makes a determination if someone is a surgery candidate. I feel that my moms age (75 yrs old) has something to do with it. I asked the oncologist why my mom can’t have surgery to remove tumors on her lung and liver. Oncologist response was she thought most likely the cancer was also in her blood so chemo would be only option.

How can the oncologist make that assumption? Does it show in blood work? My moms CEA levels have always been under 3. The doctor said that in some patients cases, CEA is not a good indicator of cancer cells. And that’s why my moms level is low...we can’t rely on it.

Also, since the cancer spread to both liver and lungs, she apparently cannot have surgery. Has anyone been told this before?

Thanks

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: CRC Mets to liver and lungs

Postby stu » Thu Mar 07, 2019 2:23 am

Hi ,

If you read my signature you will be able to see my mum’s story . Once cancer has spread they prefer to tackle it systematically to reign in other possible microdisease and to achieve shrinkage as soon as possible . This is a good plan on both fronts .However it does not mean surgery or radiotherapy options are ruled out for ever . It is merely a starting point . Once they see how a patient responds through scans they review everything . My mum is in a similar age bracket and I find myself torn wondering if more treatment is required in the future which apppriach would achieve maximum benefit in the kindest way so her quality of life is foremost . Not easy.
Thinking of you and your mum ,
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 .


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