My CRC with liver mets journey

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LPL
Posts: 595
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My CRC with liver mets journey

Postby LPL » Sun Mar 03, 2019 9:49 am

ginabeewell wrote:My platelets went up - by 2. Drinking all that carrot / beet / kale / spinach / orange juice must not have helped too much. So I didn't clear for my last chemo treatment.

Per Dr Kingham, don't want to push back surgery, and that last chemo less critical now that they want to hold on the liver resection. (He called the other day to confirm he wants to do HAI pump placement and colon first, and then the resection. I can't remember if I updated that.)

So here starts another 4 week chemo break leading up to 3/27 surgery. Trying to make plans to enjoy it. Eat some sushi once chemo has cleared my system and drink some wine before it's off limits with the pump installed!

Traveling to Costa Rica for a work offsite next week, so hopefully that will get me off to a strong start.

I’m just wondering why you are not allowed to drink wine when you have had the pump installed?
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Mar 03, 2019 11:37 pm

boxhill wrote:BTW, where is your colon primary tumor? Sounds like possibly the right side?


You'd think I would remember that. I had the tumor in one side and the infection in the other, and now I can't keep them straight! Does one side or the other make for easier recovery, etc?

LPL wrote:I’m just wondering why you are not allowed to drink wine when you have had the pump installed?


I think it is just a matter of not taxing the liver with anything "extra" to process. Which makes sense while you're going through chemo, certainly. What doesn't make sense to me is not drinking when you are just flushing it with saline every two weeks after chemo is done. That is something I want to double check when we have our pre-surgery consult on 3/11. It doesn't make sense to me...
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

Pyro
Posts: 196
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: My CRC with liver mets journey

Postby Pyro » Mon Mar 04, 2019 8:16 am

It’s funny how recommendations turn into facts. I’ve had about every treatment for CC not the pump!) and never been told I had to cut alcohol. Unfortunately, for a very large percentage of us, we will deal with these treatments forever, this is me living life. FWIW Gina, I have no idea what “side” my tumor was on. I’m not a Dr and it doesn’t really matter, take it out!
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
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, CEA @30(3), shit still here

FightCRC
Posts: 27
Joined: Fri May 25, 2018 10:39 pm

Re: My CRC with liver mets journey

Postby FightCRC » Mon Mar 04, 2019 9:48 am

ginabeewell wrote:I think it is just a matter of not taxing the liver with anything "extra" to process. Which makes sense while you're going through chemo, certainly. What doesn't make sense to me is not drinking when you are just flushing it with saline every two weeks after chemo is done. That is something I want to double check when we have our pre-surgery consult on 3/11. It doesn't make sense to me...


The chemo stays in the liver the entire time. The saline flush is to keep the pump filled (so it doesn't dry out) and the catheter clear. But the FUDR is still doing its thing in the liver.

Otherwise, yes, the liver is already under extreme stress due to the pump treatment so don't want to add to the burden. As well, it can impact values, which are crucial for Dr. K to get accurate reads. In the end, sucks to give up things we enjoy, but if you're going through the trouble of doing all this...gotta keep big picture in mind, always.

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Mar 04, 2019 1:56 pm

FightCRC wrote:
ginabeewell wrote:I think it is just a matter of not taxing the liver with anything "extra" to process. Which makes sense while you're going through chemo, certainly. What doesn't make sense to me is not drinking when you are just flushing it with saline every two weeks after chemo is done. That is something I want to double check when we have our pre-surgery consult on 3/11. It doesn't make sense to me...


The chemo stays in the liver the entire time. The saline flush is to keep the pump filled (so it doesn't dry out) and the catheter clear. But the FUDR is still doing its thing in the liver.

Otherwise, yes, the liver is already under extreme stress due to the pump treatment so don't want to add to the burden. As well, it can impact values, which are crucial for Dr. K to get accurate reads. In the end, sucks to give up things we enjoy, but if you're going through the trouble of doing all this...gotta keep big picture in mind, always.


That makes sense while treatment is happening. I'm wondering what happens post treatment when the pump is still in the body but ONLY getting flushed. That's what I am not quite understanding.
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

FightCRC
Posts: 27
Joined: Fri May 25, 2018 10:39 pm

Re: My CRC with liver mets journey

Postby FightCRC » Mon Mar 04, 2019 3:29 pm

ginabeewell wrote:That makes sense while treatment is happening. I'm wondering what happens post treatment when the pump is still in the body but ONLY getting flushed. That's what I am not quite understanding.


Ah, OK. I thought you were making a distinction between the two weeks with FUDR, vs. the two weeks without, during treatment.

Don't know if alcohol is allowed after treatment is done (fingers crossed for all of us to get there with good results!). I would guess that it may depend on each individual patient; for example, I know of patients who have had to continue on Ursodiol long after active treatment is completed, to help normalize liver values. I suspect that for those patients, alcohol is still probably not a good idea. But hopefully your doctor can tell you, one way or the other.

radnyc
Posts: 352
Joined: Tue Apr 06, 2010 6:32 pm

Re: My CRC with liver mets journey

Postby radnyc » Mon Mar 04, 2019 4:28 pm

On the drinking thing, as much as I enjoy an alcoholic beverage, for the first two years with the pump I abstained. Non-alcoholic beer occasionally. Yes the idea is to not stress the liver, it's getting hit with massive doses of poison, ehr chemo. After two years, you can pretty much go back to your old self, as long as you're not still getting chemo.
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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ginabeewell
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Re: My CRC with liver mets journey

Postby ginabeewell » Mon Mar 04, 2019 7:59 pm

radnyc wrote:On the drinking thing, as much as I enjoy an alcoholic beverage, for the first two years with the pump I abstained. Non-alcoholic beer occasionally. Yes the idea is to not stress the liver, it's getting hit with massive doses of poison, ehr chemo. After two years, you can pretty much go back to your old self, as long as you're not still getting chemo.


Ok that makes me feel better! Not (too) worried about abstaining during chemo. Have one trip to Italy where I may be a little sad, but manageable. : )
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

boxhill
Posts: 212
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Tue Mar 05, 2019 1:06 pm

FWIW Gina, I have no idea what “side” my tumor was on. I’m not a Dr and it doesn’t really matter, take it out!


Well, actually there is a growing body of research and information about the difference between right and left side tumors, and it definitely CAN affect course of treatment.

But if you don't want to know, that's completely up to you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda

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

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Mar 05, 2019 1:52 pm

boxhill wrote:
FWIW Gina, I have no idea what “side” my tumor was on. I’m not a Dr and it doesn’t really matter, take it out!


Well, actually there is a growing body of research and information about the difference between right and left side tumors, and it definitely CAN affect course of treatment.

But if you don't want to know, that's completely up to you.


I actually remember talking about it at the beginning of my journey. We talked about sigmoid which means one side or the other, and it did impact my treatment as I recall - he thought it was likely that my genetic testing would be what it did turn out to be as a result. Just now can't remember which side that actually was!!
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

boxhill
Posts: 212
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Wed Mar 06, 2019 12:22 pm

The sigmoid colon is on the left side.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda

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LPL
Posts: 595
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: My CRC with liver mets journey

Postby LPL » Wed Mar 06, 2019 3:06 pm

ginabeewell wrote:
boxhill wrote:
FWIW Gina, I have no idea what “side” my tumor was on. I’m not a Dr and it doesn’t really matter, take it out!


Well, actually there is a growing body of research and information about the difference between right and left side tumors, and it definitely CAN affect course of treatment.

But if you don't want to know, that's completely up to you.


I actually remember talking about it at the beginning of my journey. We talked about sigmoid which means one side or the other, and it did impact my treatment as I recall - he thought it was likely that my genetic testing would be what it did turn out to be as a result. Just now can't remember which side that actually was!!

What did your genomic testing show Gina?
It sounds as you know even if it is not in your signature.
I mean MSI status, Kras mutant?, Braf mutant? etc. Important things to know as I understand it. Also what kind of cancer? Adenocarcenoma or ...
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Mar 07, 2019 5:50 pm

LPL wrote:What did your genomic testing show Gina?
It sounds as you know even if it is not in your signature.
I mean MSI status, Kras mutant?, Braf mutant? etc. Important things to know as I understand it. Also what kind of cancer? Adenocarcenoma or ...


Adenocarcenoma
KRAS and BRAF negative / wild type
MSI stable / low with 90-95% of tumors stable / low

I can add to my signature if that's helpful background for readers.
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

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juliej
Posts: 2952
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Thu Mar 07, 2019 7:04 pm

ginabeewell wrote:Adenocarcenoma
KRAS and BRAF negative / wild type
MSI stable / low with 90-95% of tumors stable / low

I'm the same: KRAS and BRAF negative and MSI stable. That's a good genetic profile in general, even if MSH patients have more immunotherapy options right now.

Sorry you can't have wine when the pump is in place. It's a small sacrifice to get rid of the cancer, although it's hard to imagine a wine spritzer on occasion would hurt that much! :D You also can't scuba dive, sky dive, or use hot tubs/saunas. Just think of your cancer-free future though and you can get through it!

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 2/1/2019, CEA<1

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ginabeewell
Posts: 177
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Mar 08, 2019 1:20 am

juliej wrote:I'm the same: KRAS and BRAF negative and MSI stable. That's a good genetic profile in general, even if MSH patients have more immunotherapy options right now.

Sorry you can't have wine when the pump is in place. It's a small sacrifice to get rid of the cancer, although it's hard to imagine a wine spritzer on occasion would hurt that much! :D You also can't scuba dive, sky dive, or use hot tubs/saunas. Just think of your cancer-free future though and you can get through it!

Juliej


No alcohol during chemo is ok by me. And I can live without a hot tub for a few years! Plenty of inconvenient stuff associated with chemo in general, come to think of it, and so far dealing with it all.

All that said, I plan to enjoy my chemo break pre-surgery as much as possible. I've been in Costa Rica for a corporate leadership conference, and the food at this resort is amazing - they grow 70% of what they need on the farm here, so the vegetables have been amazing, and I have been enjoying them all!

I also called ahead to book two personal training classes to start strengthening my core. So glad I did that and hoping to maintain the momentum at home.

One of our sessions involved a meditation session, and afterwards the facilitator asked us about our experiences. I talked about how I had such a clear sense of purpose and direction at work, but sometimes felt I didn't have the same with my family, and I worry it's why I lean into work. In my head I was thinking, what if I don't have enough time to raise my kids?

The poor facilitator didn't have the context, but everyone else in the room did - as tears were streaming down my face. I looked around and saw each of my direct reports crying as well, and a few others among the group. Several people came up to me before the breakout session, and I got hugs and Kleenex and love.

It was hugely emotional and apparently powerful for everyone to see me being vulnerable and frankly thinking of their own family thru my lens - several people told me this later. One direct report told another, "We have been taking cues from Gina, she's been so strong, and that's how we have interacted with her. It was so good to be able to feel this and be in it with her in that vulnerable moment."

I feel so lucky to work in an organization that honors this type of experience and is supporting me through it. The folks in the NY office (whom I don't know as well) were all asking what they could do while I was in town for surgery. I told them find me good bone broth for my post surgery liquid only diet! They also promised to figure out business reasons for me to be in NY so they my company covers my travel for upcoming chemo treatments there. : )
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!


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