My CRC with liver mets journey

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juliej
Posts: 2995
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Mon Jun 17, 2019 5:33 pm

ginabeewell wrote:Just got my CT scan results to see progress after 2 rounds of pump chemo and 3 of systemic.

No change.

Ugh.

It's always hard to get news like this. You want to see progress, but Dr. K is right. Stable is way underrated! Most likely it means the chemo regimen that you're on now has done all it can do, but the cancer hasn't mutated yet, which would allow it to grow. Oxi is a good adjunct to Folfox, but it's the 5FU in it that does the heavy lifting so I wouldn't worry about it being taken out of the mix. Did you ever take Avastin? I took it for 14 months with Xelox prior to my pump implant and liver resection.

I was warned the dreaded plateau would happen to me too. It's just a matter of time, they said, and sure has heck, everything just kind of froze in place right before I had surgery. That's a critical juncture because the old chemo is just holding things at bay, so you need to mix things up a bit after surgery. You might get put on Irinotecan after your liver resection (as I was) and it could be the "shake up" that your body needs to start killing tumor cells again. And you've just had 2 rounds of pump chemo so give the FUDR more time.

Right now just concentrate on getting as healthy as you can prior to surgery. Eat well, sleep well, meditate. Think strong thoughts!

xo,
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 3/18/2019, CEA<1

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jun 17, 2019 5:58 pm

juliej wrote:
It's always hard to get news like this. You want to see progress, but Dr. K is right. Stable is way underrated! Most likely it means the chemo regimen that you're on now has done all it can do, but the cancer hasn't mutated yet, which would allow it to grow. Oxi is a good adjunct to Folfox, but it's the 5FU in it that does the heavy lifting so I wouldn't worry about it being taken out of the mix. Did you ever take Avastin? I took it for 14 months with Xelox prior to my pump implant and liver resection.


That’s really helpful. Dr K didn’t say those words but what you suggest isn’t inconsistent with the way she positioned it / addressed questions about dosage and resuming Oxi.

I’ve done Vectibix but not Avastin. I would be ecstatic if someone wanted to take me off the Vectibix and replace it, my rash is out of control!!

I’m glad I posted about this. I think I was having a tough time wrapping my head around what this meant, exactly. And now I’m feeling like I have a better handle on things. Which helps even if it’s still not where I want to be.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

martd
Posts: 102
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: My CRC with liver mets journey

Postby martd » Mon Jun 17, 2019 8:15 pm

For what it's worth, although my situation is different my two scans before surgery showed the tumors shrunk, the first scan showed 40% the second showed only 30%. Although the scan still showed tumor, pathology after resection showed they were dead. You mentioned having a good response in the beginning, possible maybe it's only scar tissue or dead tumor that's showing now?
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
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
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jun 17, 2019 9:31 pm

martd wrote:For what it's worth, although my situation is different my two scans before surgery showed the tumors shrunk, the first scan showed 40% the second showed only 30%. Although the scan still showed tumor, pathology after resection showed they were dead. You mentioned having a good response in the beginning, possible maybe it's only scar tissue or dead tumor that's showing now?


The largest mets look calcified, and that is why they are not shrinking. But there are smaller mets that appear to be alive. It’s possible they are dead, will know more after surgery. My CEA has had a really solid decrease, although it bounced up to 2.0 today from 1.3. But I know that kind of fluctuation isn’t anything to get too worried about, and the numbers still seem low in absolute vs where I started...

My husband says it’s like breaking even in Vegas on a second trip, after you killed it during a first. You’re still ahead of the game - but it doesn’t feel like that.
: )
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

hopefulandstrong
Posts: 23
Joined: Fri Apr 19, 2019 7:11 pm

Re: My CRC with liver mets journey

Postby hopefulandstrong » Mon Jun 17, 2019 9:49 pm

Stable is definitely better than progression. Also, still good news about the resection... that is progress in the right direction, right?

I'm curious of what they make of your very low CEA.

Only good wishes!
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
2/25/19 -- Scans to determine next steps -- HIA, Liver resect
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jun 17, 2019 11:39 pm

hopefulandstrong wrote:Stable is definitely better than progression. Also, still good news about the resection... that is progress in the right direction, right?

I'm curious of what they make of your very low CEA.


Maybe progress. I think they could have done this same surgery in March - but they are willing to do it now because they see this plateau. I think they were hoping for enough progress that they would be able to do one surgery vs two. Oh well.

Dr Paty, the colon surgeon, seems most excited about the CEA: “This means not much active cancer in your body.” Dr Kemeny doesn’t mention it at all. Dr Kingham agreed (when I brought it up) that low CEA may mean tumors are dead but was still pretty non-committal about that. I think they value the scan above the CEA and the biopsy results above the scan, once they get them.

I guess we will know more in four weeks!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

AmyG
Posts: 185
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Tue Jun 18, 2019 9:26 am

I know that news must be disappointing, but you're doing fabulous! And there's a set date for surgery! Please keep us updated on how that goes. Personally, I'm terrified of liver resection. :shock:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection next step!

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Jun 19, 2019 2:09 pm

AmyG wrote:Personally, I'm terrified of liver resection. :shock:


I think I put two and two together early on and figured there would be no actual cure without surgery. That helped me to feel a LOT better about the idea of it!!

Now I need to get myself back in shape over the next four weeks so that my recovery is ok. I actually did pretty well with my pump placement / colon resection. I was out of the hospital in about four days, had stopped Rx painkillers a few days after that, and was walking 2-3 miles a day by the second week after surgery. I did a bunch of core workouts signed onto a friend's Peloton account. Time to resume that fun!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

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juliej
Posts: 2995
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Wed Jun 19, 2019 5:16 pm

ginabeewell wrote:
AmyG wrote:Personally, I'm terrified of liver resection. :shock:

I think I put two and two together early on and figured there would be no actual cure without surgery. That helped me to feel a LOT better about the idea of it!!

Now I need to get myself back in shape over the next four weeks so that my recovery is ok. I actually did pretty well with my pump placement / colon resection. I was out of the hospital in about four days, had stopped Rx painkillers a few days after that, and was walking 2-3 miles a day by the second week after surgery. I did a bunch of core workouts signed onto a friend's Peloton account. Time to resume that fun!


Good idea to get in shape before your next surgery! Make sure you wear compression tights to support the pump though. And make sure you work on good nutrition too, meaning lots of high protein foods plus veggies and fruit.

I was scared of the liver resection too. And even more scared of double lung surgery (how does someone handle two drain tubes coming out of their chest at once? :shock:)

I was a "surgery virgin" before my resection (never even been in a hospital before). But I pulled up my big girl pants and thought if this is what it takes to get rid of these tumors, then I'm IN ALL THE WAY! :D Some people opt for non-surgical methods for liver mets, but surgery is still the gold standard for curing cancer.

We need someone to donate money for Peloton or Mirror sessions so cancer patients can exercise at home! :D :D :D

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 3/18/2019, CEA<1

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Jun 19, 2019 8:28 pm

juliej wrote:And make sure you work on good nutrition too, meaning lots of high protein foods plus veggies and fruit.

Juliej


I’m going to pretend I didn’t just make a frozen pizza for dinner...

I find it so hard to eat healthy while I’m on chemo. The best I can do is try to make sure even the bad stuff is a “protein carrier.” I did have an eggplant and zucchini torta for lunch. But also a donut.

I tried to eat clean during my first five cycles but wound up losing almost 25 lbs and was down to 90 lbs total. Nothing appealed to me so I wound up just not eating. My husband convinced me I needed to be less strict to gain back the weight and maintain it. I’m still down about 5 lbs since my surgery but doing my best depending on the day.

It is a little depressing because my diet was really pretty good before this all hit: whole grains, lean proteins and lots of veggies. Now I’m suddenly craving McDonalds cheeseburgers when I hadn’t had one for a decade.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

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mobrouser
Posts: 143
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: My CRC with liver mets journey

Postby mobrouser » Wed Jun 19, 2019 9:01 pm

The thing with frozen pizza is that you can add your own toppings to them before they go in the oven.
I add sliced leftover chicken breast or other meats, peppers, tomato, mushrooms, cheese to the frozen ones. They're so much better and cheaper and tastier than take-out pizza......
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

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ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jun 20, 2019 11:56 am

mobrouser wrote:The thing with frozen pizza is that you can add your own toppings to them before they go in the oven.
I add sliced leftover chicken breast or other meats, peppers, tomato, mushrooms, cheese to the frozen ones. They're so much better and cheaper and tastier than take-out pizza......


I actually make my own pizza pretty regularly. I make my own sauce and just add cheese for the kids. But my trademark "Gina's pizza" is a recipe I picked up from a guy I dated when I was 24: thinly sliced sandwich pepperoni goes down first, then thin-sliced Roma tomatoes laid side-by-side, covering as much of the dough as you can - no sauce, the tomatoes are your substitute on this pizza. A little thinly sliced red onion, then a little mozzarella (maybe 1/4 cup per pizza) and a lot of high quality Parmesan. Top with chopped Kalamata olives and a sprinkling of oregano and red pepper flakes.

If you try this, you will thank me!! I didn't like any of these toppings before I tried this pizza, but somehow they all hang together into a really special combination. My stepdaughter went pescatarian recently, but she makes exceptions for her dad's Norwegian meatballs (our Christmas tradition) and my pizza!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

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juliej
Posts: 2995
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Fri Jun 21, 2019 7:26 pm

ginabeewell wrote:
I tried to eat clean during my first five cycles but wound up losing almost 25 lbs and was down to 90 lbs total. Nothing appealed to me so I wound up just not eating. My husband convinced me I needed to be less strict to gain back the weight and maintain it. I’m still down about 5 lbs since my surgery but doing my best depending on the day.

It is a little depressing because my diet was really pretty good before this all hit: whole grains, lean proteins and lots of veggies. Now I’m suddenly craving McDonalds cheeseburgers when I hadn’t had one for a decade.

I had trouble losing too much weight too. I tried to force myself to eat but that usually ended in tears. I didn't crave any bad foods - I just didn't have any appetite at all.

The hardest part was post-surgery. Even 2 months later I was still down 15 pounds. My MSK nurse told me "to put cream on everything" (yuck!), but I also learned that if I kept up the protein part of my meals, my incisions healed so much faster. So she was right about that.

The best part was about 4 months after my last chemo session. I was in a restaurant eating a Greek salad. All the sudden I realized I could actually taste the tomatoes after months of everything tasting like cardboard!

Remember the scene in the movie "When Harry Met Sally" where they're at Katz's deli and she's demonstrating how she fakes an orgasm??? Well, that was pretty much me at the restaurant! Moaning and ranting and raving! Needless-to-say, I got some stares, but I didn't care because that was the best damn tomato I've ever had in my life! :D :D :D

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 3/18/2019, CEA<1

User avatar
ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sat Jun 29, 2019 5:11 pm

I am so angry and I need to write it down somewhere.

A few years back, my husband’s partner got accused by his wife of having a fling with an employee. Partner asked my husband to speak with her and that backfired in a big way. Long story short, she turned on him and has attacked him in public several times with baffling accusations like he’s “trying to break up her family.”

Partner was his best friend in addition to creative partner / boss. Obviously that changed the tenor of their relationship, and ever since then, things have been different. Last blowup was about a year ago when my husband put 4 days on the calendar as vacation so he could take his kids to Lolla (Thurs - Sun) and was then accused of not being committed when he tried to protect his weekend and didn’t want to travel Sat-Sun.

The latest is a note that basically sets him up to be fired for cause (he’s a partner so if he’s fired for cause, he loses his stake in the company). Among the Lolla incident, it questions his “commitment to the company and his craft” and basically says things haven’t worked out since my diagnosis. That he and the partners feel “frustrated and taken advantage of.”

He did take a week off to be with me during my first surgery and worked from NY the week after. But he’s been working his ass off - traveled 42 of the last 56 days for example, and pretty much works every night after dinner and parts of every weekend - and nobody has said ANYTHING about him not getting his job done or clients being unhappy or anything.

I am just so crushed for him. He knew when he had the falling out with the wife that it would probably come to this. But the fact that it is happening now and they are linking it to my cancer is absolutely heartbreaking.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

stu
Posts: 1132
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Sat Jun 29, 2019 6:11 pm

That’s horrible . I have witnessed such behaviour before . They almost capitalise on the painful situation without compassion . It’s frightening.

Some people go through life , successfully treating people badly . I would hate to be them . My observation is they are never satisfied . They eventually isolate themselves from all that is meaningful . Have everything and nothing in equal measures .

With regards to his job , I hope he gets it resolved soon .
You 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 .


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