My CRC with liver mets journey

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ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Aug 14, 2019 11:41 am

I am now four weeks past the resection surgery and by this weekend, I would say I was feeling about 80% recovered. Between being a few weeks out from surgery AND having had almost 8 weeks off from chemo, it's as good as I have felt in a long time - so we got a lot done around the house, walked to brunch and dinner, and I tried to do a ton of calorie loading knowing that I would start chemo this week.

On Monday when I went in, my weight was up 4 lbs since my post-op, so all those nachos I ate (don't ask me why I was craving nachos, but I had some version of them like three times over four days) must have made a big difference. My iron levels were low, so I was craving weird things, like oysters - which I think are seriously disgusting, so it is always a sign to me that my body must really need something when they suddenly feel like a good idea. I met a good friend for escargot and steak - and then before chemo yesterday, I found an adorable French place two blocks from MSK and had escargot and foie gras. I've also been pounding chocolate milk - Dr Kingham told me at the post op, "Don't put anything in your mouth that doesn't have calories - no water - drink juice or milk." I've taken that to heart. Can't handle those protein drinks, but a high quality chocolate milk does deliver both protein and calories so I think it counts!!

I really look back and laugh at how I thought going into this I would follow a mostly plant-based diet and try to cure myself that way. I still have lots of people who want to tell me that I can eat myself back into health, and I've started to laugh and say, Once you're on chemo and successfully eating a vegan diet, feel free to come back to me and let me know how that works for you.

I do think that there is room to improve my diet once I'm done with formal treatment. Before this all started, I actually ate a pretty healthy diet - lots of plants, whole grains and lean proteins, not much red meat or dairy, and I'd like to return to that. But it's just too hard to do when you feel hungover every day and you're trying to maximize calories going into your system.

It looks like I'll do 5 chemo treatments before my next surgery, which if my date counting is accurate, would be about November 6th. I did my first on Monday (today is my disconnect day), so mentally I think I can manage the idea of just four more. Then a final liver resection, and then mop-up chemo I suppose. This isn't my last leg of my journey, but it feels like the biggest / toughest leg, and mentally I'm in an OK spot to start it.

I've also decided that after the treatment is done, I'm going on a honeymoon with my husband - a real one. We got married five years ago and did a "mini-moon" to a nice resort within driving distance for just three days. We both fielded work emails through the whole thing. I just cannot say enough how amazing my husband has been as a caretaker, so it feels appropriate and right to mark the "end" of this journey with an amazing week or so together. Anyway, it's been fun researching destinations!!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

annieliz
Posts: 34
Joined: Fri Jul 26, 2019 5:13 pm

Re: My CRC with liver mets journey

Postby annieliz » Wed Aug 14, 2019 12:53 pm

Glad to hear that you are recovering well and planning a honeymoon! You will be my inspiration as I head to MSK on Friday for my first infusion. Kind of nervous, but looking forward to getting one in the "done" column.

Thank you for sharing your experiences and advice. All the best to you and your family.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

radnyc
Posts: 388
Joined: Tue Apr 06, 2010 6:32 pm

Re: My CRC with liver mets journey

Postby radnyc » Wed Aug 14, 2019 3:32 pm

Sounds like you're doing really well Gina, keep doing what you're doing. Enjoy life!

Peace Al
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Wed Aug 14, 2019 6:15 pm

ginabeewell wrote:On Monday when I went in, my weight was up 4 lbs since my post-op, so all those nachos I ate (don't ask me why I was craving nachos, but I had some version of them like three times over four days) must have made a big difference. My iron levels were low, so I was craving weird things, like oysters - which I think are seriously disgusting, so it is always a sign to me that my body must really need something when they suddenly feel like a good idea.

I had the weirdest food cravings after my liver resection! It was the season for fresh Atlantic salmon in NYC and I literally ate it every day. I also craved sweet potatoes/yams, so there was definitely an orange theme going on! :shock: :D That was basically all I ate for about a month. Afterwards I wondered if it had to do with the high amount of omega-3 fatty acids in salmon or all the minerals in both foods. It was almost a desperate feeling.

It was hard gaining back the weight though. I got the same speech about loading up on calories, but that isn't easy when your stomach says "no" to almost everything. The nurse mentioned it takes a lot of calories to grow back a liver. After I finished a meal I could feel a warm spot in my abdomen around my liver, like all the calories were going there! I also felt like napping after every meal (unusual for me) so I think that was my body's way of trying to hang on to the calories.

ginabeewell wrote:I've also decided that after the treatment is done, I'm going on a honeymoon with my husband - a real one.

What a brilliant idea! :D :D :D Plus it gives you something to research and look forward to while you're undergoing treatment. Make it somewhere special because you're going to feel on top of the world when you finish treatment!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

Mohrfamily
Posts: 168
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Wed Aug 14, 2019 6:41 pm

That is so great Gina. DH and I celebrated 6 years this year and likewise didn't really honeymoon but I did tell him, God knows he won't let me forget,
Me: You beat cancer and you can buy whatever sports car you want.
DH: Really!?
Me: Yes, but beat cancer first
Researching lead to a goal of a dodge viper.

Here's to hopeful and happy endings, or beginnings depending on how you look at it.
DH dx officially stage IV with liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection

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ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Aug 15, 2019 4:01 pm

juliej wrote:I had the weirdest food cravings after my liver resection! It was the season for fresh Atlantic salmon in NYC and I literally ate it every day. I also craved sweet potatoes/yams, so there was definitely an orange theme going on! :shock: :D That was basically all I ate for about a month. Afterwards I wondered if it had to do with the high amount of omega-3 fatty acids in salmon or all the minerals in both foods. It was almost a desperate feeling.


At least you were craving something healthy! I've got this bizarre combination of nachos, escargot, and McDonald's cheeseburgers happening.

Last night the ONLY thing I wanted to eat in the world was stir-fried Udon noodles with ground pork. Never mind that I had NEVER EATEN that before in my life, I had to have it. Once our order came, I was all about the crab Rangoon - again something I probably haven't had in about 20 years - but I'm guessing those little calorie bombs did me some good! I went to bed feeling super full. I guess that medical marijuana mint did its job!

Tonight I hope I feel good enough to cook - I had our nanny help to prep a black bean / corn / toasted hazelnut taco recipe with lime crema that is really delicious and healthy too. We were supposed to have it yesterday but I felt too tired to finish cooking it all up - and too desperate for Udon noodles. Weird body!!

Mohrfamily wrote:Me: You beat cancer and you can buy whatever sports car you want.


I read this aloud to my husband last night. He blinked and then said, "If you want a car, it's all yours." He knows my dream car is a 1980's Mercedes convertible, lucky for him they only run about $10K or so. We had a fun time talking about it for a bit until we agreed that with our family of 6, a convertible that only seats 2 comfortably probably isn't the right call. We agreed that maybe instead we would get a pontoon boat for our new cottage - which should be ready in just a few more weeks! Hooray!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Gravelyguy
Posts: 228
Joined: Thu Jul 05, 2018 6:03 pm

Re: My CRC with liver mets journey

Postby Gravelyguy » Thu Aug 15, 2019 6:01 pm

Cars are good incentives! I had some strange cravings during chemo too. I have absolutely no desire to ever eat any of them again so be careful and don’t eat anything you really like!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

AmyG
Posts: 258
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Thu Aug 15, 2019 7:37 pm

Glad to hear you're doing so well, it gives me hope I'll do the same!

Question: what happens after your last infusion/disconnect?
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 8/28/19
NED!! CEA 2.3

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ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Aug 15, 2019 8:20 pm

AmyG wrote:Question: what happens after your last infusion/disconnect?


I want to make sure I’m understanding your question: do you mean what happens after I’m done with my infusions at MSK?

They hook me up to the external pump. I fly home that evening, and when the pump is done two days later, my husband disconnects it. I usually give myself fluids that same evening, and sometimes in the next day or two as well. And then my husband (or me if he’s not around) will de-access my port for me.

If I’m super dehydrated, sometimes on week two I will go by Northwestern and ask them to re-access me. Depending on how much time I have, I’ll get fluids there or just do them at home again.

If I’ve totally misunderstood your question let me know!!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

AmyG
Posts: 258
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Fri Aug 16, 2019 9:53 am

Lol, I meant after chemo is finished. Are you declared NED? Wait and watch? Frequent scans? Do you still have to go see your oncologist still?
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 8/28/19
NED!! CEA 2.3

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ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Aug 16, 2019 12:45 pm

AmyG wrote:Lol, I meant after chemo is finished. Are you declared NED? Wait and watch? Frequent scans? Do you still have to go see your oncologist still?


Got it!

I am hoping after my next surgery in November - second liver resection - they will declare me NED. Then I would have 3-6 months of mop-up chemo. I know some institutions believe in chemo for life, but MSK is not one of them, so I am assuming that from there, they will just put me on a schedule for regular scans and maybe CEA pulls, as that has been a good marker for me and could be done locally.

All that said, I'm making giant assumptions about all of that based on what I've read for others who have gone through treatment with Dr Kemeny. She's not one to be talking about stuff too far in the future. The only thing she's confirmed for me is that I won't have to be on Vectibix forever. I guess I was happy to hear that at least!!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

AmyG
Posts: 258
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Fri Aug 16, 2019 3:17 pm

Our journeys are somewhat similar and I'm not too far behind you in treatment. I was just wondering what might be next for me!

After this liver resection, I have 5 more rounds of chemo. After that....?????? No clue.
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 8/28/19
NED!! CEA 2.3

cartech78
Posts: 65
Joined: Thu Oct 25, 2018 6:22 pm

Re: My CRC with liver mets journey

Postby cartech78 » Mon Aug 19, 2019 1:13 am

ginabeewell wrote:
AmyG wrote:Lol, I meant after chemo is finished. Are you declared NED? Wait and watch? Frequent scans? Do you still have to go see your oncologist still?


Got it!

I am hoping after my next surgery in November - second liver resection - they will declare me NED. Then I would have 3-6 months of mop-up chemo. I know some institutions believe in chemo for life, but MSK is not one of them, so I am assuming that from there, they will just put me on a schedule for regular scans and maybe CEA pulls, as that has been a good marker for me and could be done locally.

All that said, I'm making giant assumptions about all of that based on what I've read for others who have gone through treatment with Dr Kemeny. She's not one to be talking about stuff too far in the future. The only thing she's confirmed for me is that I won't have to be on Vectibix forever. I guess I was happy to hear that at least!!



Its pretty rare to see Dr.Kemeny keep people on maintenance chemo for life when you are declared NED. Her general road map with most people seems to be systemic for 6 months after being declared NED and HAI pump treatments unless the luver enzymes start to climb. If you are NED by way of liver resection she is really conservative about giving you fudr and watches those numbers like a hawk. For me my ALK phos had been in the 330 range and she just keeps on giving me the fudr in my pump- lol, I did not have a liver resection though! I know that she generally has people with active cancer scanned every 2 months and people who just hit NED every three months! Another thing that is new is that MSK has been slowing down the rate of infusion in the pump to every 3 weeks for people who are NED and off chemo completely to ease the burden of the maintenance. Rumor has it they are testing it to try and get it to 4 week intervals for that. The general data shows that its split down the middle on Oncs who think you should be on maintenance chemo for life or not when you are NED. Im glad she falls under the category of no Chemo for life. The data is pretty cloudy if it really helps or not as there are just so many factors that go into reoccurrence rates and such. She’s aggressive as hell when she needs to be but she really seems to know when to put the brakes on as well when its needed and I love that about her. Glad to hear you doing well. Good luck with your upcoming Chemo.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.

User avatar
ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Aug 19, 2019 9:15 am

cartech78 wrote:
Its pretty rare to see Dr.Kemeny keep people on maintenance chemo for life when you are declared NED. Her general road map with most people seems to be systemic for 6 months after being declared NED and HAI pump treatments unless the luver enzymes start to climb. If you are NED by way of liver resection she is really conservative about giving you fudr and watches those numbers like a hawk. For me my ALK phos had been in the 330 range and she just keeps on giving me the fudr in my pump- lol, I did not have a liver resection though! I know that she generally has people with active cancer scanned every 2 months and people who just hit NED every three months! Another thing that is new is that MSK has been slowing down the rate of infusion in the pump to every 3 weeks for people who are NED and off chemo completely to ease the burden of the maintenance. Rumor has it they are testing it to try and get it to 4 week intervals for that. The general data shows that its split down the middle on Oncs who think you should be on maintenance chemo for life or not when you are NED. Im glad she falls under the category of no Chemo for life. The data is pretty cloudy if it really helps or not as there are just so many factors that go into reoccurrence rates and such. She’s aggressive as hell when she needs to be but she really seems to know when to put the brakes on as well when its needed and I love that about her. Glad to hear you doing well. Good luck with your upcoming Chemo.


That’s super helpful Cartech, thank you!!

Does the HAI pump chemo extend beyond the 6 month mop up cycle? Or does that shift to saline at the 6 month mark?

A Medtronic rep told me the devices can go up to 180 days without a refill! When I mentioned this to Sandy, Dr K’s nurse, she all but shushed me out of the office. So it doesn’t surprise me to hear they are testing 3-4 week increments. It would make a big difference to have a cycle longer than 2 weeks if the pump stays in for ~5 years.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

cartech78
Posts: 65
Joined: Thu Oct 25, 2018 6:22 pm

Re: My CRC with liver mets journey

Postby cartech78 » Mon Aug 19, 2019 10:43 am

ginabeewell wrote:
cartech78 wrote:
Its pretty rare to see Dr.Kemeny keep people on maintenance chemo for life when you are declared NED. Her general road map with most people seems to be systemic for 6 months after being declared NED and HAI pump treatments unless the luver enzymes start to climb. If you are NED by way of liver resection she is really conservative about giving you fudr and watches those numbers like a hawk. For me my ALK phos had been in the 330 range and she just keeps on giving me the fudr in my pump- lol, I did not have a liver resection though! I know that she generally has people with active cancer scanned every 2 months and people who just hit NED every three months! Another thing that is new is that MSK has been slowing down the rate of infusion in the pump to every 3 weeks for people who are NED and off chemo completely to ease the burden of the maintenance. Rumor has it they are testing it to try and get it to 4 week intervals for that. The general data shows that its split down the middle on Oncs who think you should be on maintenance chemo for life or not when you are NED. Im glad she falls under the category of no Chemo for life. The data is pretty cloudy if it really helps or not as there are just so many factors that go into reoccurrence rates and such. She’s aggressive as hell when she needs to be but she really seems to know when to put the brakes on as well when its needed and I love that about her. Glad to hear you doing well. Good luck with your upcoming Chemo.


That’s super helpful Cartech, thank you!!

Does the HAI pump chemo extend beyond the 6 month mop up cycle? Or does that shift to saline at the 6 month mark?

A Medtronic rep told me the devices can go up to 180 days without a refill! When I mentioned this to Sandy, Dr K’s nurse, she all but shushed me out of the office. So it doesn’t surprise me to hear they are testing 3-4 week increments. It would make a big difference to have a cycle longer than 2 weeks if the pump stays in for ~5 years.


Once she stops chemo she generally pulls you off everything. Usually the pump stops first for most Because of those liver enzyme issues. What I believe MSK is worried about the mist with making the pump to slow is the catheter clotting off because of the environment its in. It would be great if we didn’t have to get stabbed in the stomach every couple weeks wouldn’t it? Im not sure how much Chemo i still have ahead of me because my case is unique but man, I hope it almost over! I need a chemo break big time!
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.


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