My CRC with liver mets journey

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ginabeewell
Posts: 269
Joined: Wed Oct 24, 2018 10:30 am

My CRC with liver mets journey

Postby ginabeewell » Wed Dec 19, 2018 1:11 pm

I have found reading other's journeys helpful, so starting to document my own.

I'm just out of the hospital after 5 rounds of FOLFOX + Vectibix gave me typhlitis (swelling of the colon and perforation that allows gas to pass into the abdomen). I spent seven days there under observation - they gave me round the clock IV antibiotics in hopes of avoiding surgery to remove half my colon. Thank goodness it worked well enough to avoid that!

The doctors think that the Vectibix put me over the top, so our new plan is a chemo break - well timed for the holidays, it's been 3 weeks since my last treatment and will be another two before I resume. They'll resume with FOLFOX and slowly reintroduce Vectibix depending on my response. I'll be getting more regular CT scans, since the only way the typhlitis was recognized was via scan.

So far they have been happy with my progress - my 14 cm largest met is down to 5 cm, and the doctors are calling the response amazing and remarkable. Not sure if I am just a good responder of if the Chinese medicines I was taking alongside chemo helped to push the balance for me, but I'm inclined to keep on doing what I've been doing!

At one point, they talked about stopping chemo and starting radiation. But I found out that radiation would eliminate the possibility of an HAI pump, something I want to keep open. My response to systemic chemo has been so strong that they do not think I should opt for the pump right now. The goal will be systemic chemo to get to a point where my liver is resectable, and then maybe do a resection and a pump placement at the same time. The doctor I spoke with at Northwestern in Chicago trained with Dr Kemeney and "practically has her on speed dial." Still, I think I will at some point request an MSK consult as they place and administer more pumps than anyone else, and I know they know it better than my doctor here does. I adore her, but with my life on the line I can't afford to think about feelings!

I'm so happy to be out of the hospital and back home - and with an appetite. I lost about 25% of my total body weight between the cancer and the chemo, so my focus next two weeks is to EAT (soft foods only for a while!) and try to gain back some weight so I am in fighting shape to resume chemo. Hopefully the break won't be too long and I can rely on the Chinese medicine to help me keep things at bay for the time being.
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

heiders33
Posts: 339
Joined: Sat Nov 04, 2017 11:08 am

Re: My CRC with liver mets journey

Postby heiders33 » Wed Dec 19, 2018 1:20 pm

Thank you for sharing! Would you mind sharing specifically what Chinese medicine you are using?
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU

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Jack&KatiesMommy
Posts: 589
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: My CRC with liver mets journey

Postby Jack&KatiesMommy » Wed Dec 19, 2018 1:23 pm

I would try to get your consult with MSK sooner rather than later. Sometimes you can be on chemo too long...and the liver is too stressed to go the HAI route. Please, contact MSK now.
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans

User avatar
ginabeewell
Posts: 269
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Dec 19, 2018 1:47 pm

There are literally too many Chinese herbs to list, and they are all combinations that Dr Guo in Chicago has concocted for himself - so no individual agents.

The only thing that is not a combination is PSK which I couldn't access in the US but bought on a recent trip to Hong Kong and started to take as well.

Thanks for the heads up on the HAI pump consult. I would like to get the consult sooner vs later even if we wait for pump placement. I know that doctors have a tendency to recommend what they know, so I would like to get Dr Kemeney's take on the whole situation to see if she is in agreement. For now, they seem to feel reasonably confident that I could get away with one surgery vs two based on my response to systemic, but I know that's a gamble. Also it would be nice to be in NY during the holiday / while I have an appetite!!
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

heiders33
Posts: 339
Joined: Sat Nov 04, 2017 11:08 am

Re: My CRC with liver mets journey

Postby heiders33 » Wed Dec 19, 2018 4:42 pm

Ok thanks. I used to take Turkey Tail coriolus extract, which I ordered off Amazon, but I guess that isn’t as good as what you can get directly in Hong Kong.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU

cartech78
Posts: 62
Joined: Thu Oct 25, 2018 6:22 pm

Re: My CRC with liver mets journey

Postby cartech78 » Sat Dec 22, 2018 9:44 pm

ginabeewell wrote:I have found reading other's journeys helpful, so starting to document my own.

I'm just out of the hospital after 5 rounds of FOLFOX + Vectibix gave me typhlitis (swelling of the colon and perforation that allows gas to pass into the abdomen). I spent seven days there under observation - they gave me round the clock IV antibiotics in hopes of avoiding surgery to remove half my colon. Thank goodness it worked well enough to avoid that!

The doctors think that the Vectibix put me over the top, so our new plan is a chemo break - well timed for the holidays, it's been 3 weeks since my last treatment and will be another two before I resume. They'll resume with FOLFOX and slowly reintroduce Vectibix depending on my response. I'll be getting more regular CT scans, since the only way the typhlitis was recognized was via scan.

So far they have been happy with my progress - my 14 cm largest met is down to 5 cm, and the doctors are calling the response amazing and remarkable. Not sure if I am just a good responder of if the Chinese medicines I was taking alongside chemo helped to push the balance for me, but I'm inclined to keep on doing what I've been doing!

At one point, they talked about stopping chemo and starting radiation. But I found out that radiation would eliminate the possibility of an HAI pump, something I want to keep open. My response to systemic chemo has been so strong that they do not think I should opt for the pump right now. The goal will be systemic chemo to get to a point where my liver is resectable, and then maybe do a resection and a pump placement at the same time. The doctor I spoke with at Northwestern in Chicago trained with Dr Kemeney and "practically has her on speed dial." Still, I think I will at some point request an MSK consult as they place and administer more pumps than anyone else, and I know they know it better than my doctor here does. I adore her, but with my life on the line I can't afford to think about feelings!

I'm so happy to be out of the hospital and back home - and with an appetite. I lost about 25% of my total body weight between the cancer and the chemo, so my focus next two weeks is to EAT (soft foods only for a while!) and try to gain back some weight so I am in fighting shape to resume chemo. Hopefully the break won't be too long and I can rely on the Chinese medicine to help me keep things at bay for the time being.

Hi Gina, im sorry to hear about your recent hospital stay! Glad to hear your back on track. I just got back from my second appointment at MSK and it looks like im getting the pump at the end of January. I have had 3 FolFox treatments so far and they think my liver mets have all shrunk. Im still not resectable yet but hopefully that pump will push me over. Did you ever join those Facebook groups i told you about? There are 2 specifically that you can learn a lot more about the pump if your interested. One is Liver mets from CRC and the other is a sub group inside Colontown called the HAI pump people. Good luck and Happy Holidays.
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: 269
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Dec 27, 2018 11:27 pm

I called for my consult with Dr Kemeney today, sent all my files and waiting to hear back. My onc is confident that Dr K wouldn't place a pump right now given my strong response to systemic chemo and the recent colon infection which makes surgery out of the question for the time being. I'll be interested to see if Dr K agrees.

My onc says she would want to place the pump once my liver is ready for resection, assuming we can get there.

In he meantime it's been four weeks since my last chemo. I am feeling good and eating like it is my job. I'm up 14 lbs from just over a week ago. I think some of that is fluid retention, but not all.
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

DoninOrlando
Posts: 1
Joined: Mon Dec 31, 2018 11:48 pm

Re: My CRC with liver mets journey

Postby DoninOrlando » Tue Jan 01, 2019 12:42 am

I just wanted to agree with cartech about those 2 groups on FB, Liver Mets from CRC, and HAI Pump people on Colontown. I have been in both groups since they started and learned a lot. There are several medical professionals in the "Liver Mets From CRC" group including a surgical oncologist who installs HAI pumps. He answers questions from time to time. And there are quite a few MSK/Kemeny patients with HAI pumps.

User avatar
ginabeewell
Posts: 269
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Jan 01, 2019 6:33 pm

My husband belongs to those groups, and that has been his place to get info and support. So I'm not on Colontown myself, but he's been reading everything pump-related out there and feeding it back to me!

I know myself well enough to not sign up on a Facebook related group. I would be sucked in all day! I think a board like this is better for me. : )
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

Ehut
Posts: 206
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: My CRC with liver mets journey

Postby Ehut » Thu Jan 03, 2019 4:08 pm

I used to take Coriolus Versicolor PSK from mushroomscience.com. Is that not as good as the stuff you get from Asia? I don't need it anymore, but just wondering.
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 7+ years and counting!

User avatar
ginabeewell
Posts: 269
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Jan 04, 2019 9:59 pm

I don't know that one is better than another. I just had trouble finding PSK here and happened to be in Hong Kong, so I purchased it there.

My appointment with Dr Kemeney is next Wednesday. I'll keep everyone posted on how that goes!
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

rlevin66
Posts: 4
Joined: Wed Nov 14, 2018 11:35 am
Facebook Username: Rebecca Perini

Re: My CRC with liver mets journey

Postby rlevin66 » Sat Jan 12, 2019 11:13 am

Hello All,

I am reaching out as my husband (32 years old, I am 28) has been diagnosed with stave 4 colon cancer spread to liver. He has now undergone 5 chemo treatments through his metaport and responded fantastically well, thank goodness. His tumor is almost unidentifiable now in the colon and his liver mets shrunk 50%. He is in a good position to move forward with the remaining treatments and has been resectable from the start. His doctors at MSK (Dr. Balachandrain, Dr. Garcia Aguilar, Dr. Raj) and his team would like to proceed with the HAI pump, liver resection and colon wall surgery (even though colon may not need it, just to be safe). My husband is very healthy, very active and loves his life. It has been very hard to swallow and we are obviously devastated. He is very concerned about the restrictions associated with the pump (e.g. limited physical activities that can push it out of place, no running, jogging, contact sports etc) and visits every two weeks. We are extremely lucky to live in NYC quite close to MSK but still, he struggles to wrap his head around 2x per month visits to re-fill the pump, and all the restrictions to his lifestyle given that this is still a phase II trial. We know there is no crystal ball but he has favorable genetics (RAS/RAF Wild, not inherited/inheritable, etc) and has had a stellar chemo response, so he fears that the pump will impact his quality of life/future liver health when he could possibly achieve a cure with systematic chemo & resection. We know that the likelihood of recurrence is high, so we would never risk not getting the pump, but see that most people who do receive the pump were not resectable and had disease slightly more advanced than his. Can anyone speak to their experience tolerating the pump or long-term survival as a result of the pump, vs. long term survival without the pump and systematic chemo/resection only? Keep fighting everyone

Best,
R

heiders33
Posts: 339
Joined: Sat Nov 04, 2017 11:08 am

Re: My CRC with liver mets journey

Postby heiders33 » Sat Jan 12, 2019 2:20 pm

I decided to get the pump as adjuvant therapy even though I had just one liver spot pop up after my initial stage III treatment. I decided this because: 1) I live in NYC as well, close to MSK!; 2) I am young (36 years old); 3) I have the KRAS mutation which makes certain treatments unavailable to me; 4) I want to do everything I can do avoid further chemo and surgeries down the road by killing off any micrometastases in the liver. Yes, going in every two weeks to have my pump filled for as long as I have it is certainly limiting. However, I have not found the pump to be much more limiting than that. Yes, Dr Kemeny is strict about running and jogging, but actually my surgeon (Kingham) says it is no problem, so I have jogged a little (don't tell Dr K!). I don't really play contact sports anymore so that is not an issue. Other than those things, I wouldn't worry about it limiting your lifestyle. With the Medtronic pump, you can ski, scuba dive, sit in a hot tub. I prefer the few limitations now to the more extreme limits and struggles of further chemo and operations down the road. I am still in the middle of treatment so I can't speak to long term NED status, but I am hoping to get there! If I were you I would list out all the pros and cons and go from there. I don't want to tell you one way or the other, just wanted to share my decision process.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU

mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: My CRC with liver mets journey

Postby mpbser » Sat Jan 12, 2019 4:44 pm

My husband has very similar reasons for being reluctant about the pump. We are not conveniently located to MSK, so there's that as well. We are waiting for his January 11th MSK MRI results to see if he has a recurrence in the liver. The PET scan he had a week ago ruled out everywhere else (lung nodules appear benign, etc., thank goodness!). If we get confirmation next week that he does have a recurrence (liver spot shown on MGH MRI that Dr. Kemeny questioned), we will be making this very difficult decision. We are praying it's not malignant and just a hemangioma. Good luck deciding!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

rlevin66
Posts: 4
Joined: Wed Nov 14, 2018 11:35 am
Facebook Username: Rebecca Perini

Re: My CRC with liver mets journey

Postby rlevin66 » Mon Jan 14, 2019 6:41 pm

Thank you so much for your response to this an for sharing your story with us. We are so hopeful that you will achieve NED status and hope you update us. How funny to connect with another NYC/neighborhood resident in a similar position. I have a few follow up questions for you -- we have actually never met Dr. K, we are working with surgeon Dr. Balachandrain. Should we make it a point to ask to see Dr. K or does she silently oversee everyone's cases? Second question, we were just sent a document saying we couldn't scuba, hot tub or anything of the sort, has that actually changed now that they have the Medtronic and they just haven't updated their educational documents? I am So happy to hear you jog a little. My husband needs that level of freedom as it is a passion of his, even a slow jog would make his heart happy, though I recognize we need doctor sign off on this :-p we'll definitely be asking about that at our next f/u. Thirdly, this my be too personal a question so feel free not to answer, but my husband is also concerned about the visibility of the pump and all of the associated scarring.I recognize that this is such a vein component considering he is fighting for his life, but, as you know, the body is the only thing we have that's totally ours, and through this process you can feel a bit dehumanized. I'm wondering if his imagined version of the pump pushing the skin super far out is too dramatized. Fourth--are they brief when you go in for the pump re-fills, or do they end up taking a large chunk of time-my husband's just trying to figure out how that will work with his job and what kind of time goes into all this!!!

Again, thank you thank you thank you.

Best,
Rebecca


heiders33 wrote:I decided to get the pump as adjuvant therapy even though I had just one liver spot pop up after my initial stage III treatment. I decided this because: 1) I live in NYC as well, close to MSK!; 2) I am young (36 years old); 3) I have the KRAS mutation which makes certain treatments unavailable to me; 4) I want to do everything I can do avoid further chemo and surgeries down the road by killing off any micrometastases in the liver. Yes, going in every two weeks to have my pump filled for as long as I have it is certainly limiting. However, I have not found the pump to be much more limiting than that. Yes, Dr Kemeny is strict about running and jogging, but actually my surgeon (Kingham) says it is no problem, so I have jogged a little (don't tell Dr K!). I don't really play contact sports anymore so that is not an issue. Other than those things, I wouldn't worry about it limiting your lifestyle. With the Medtronic pump, you can ski, scuba dive, sit in a hot tub. I prefer the few limitations now to the more extreme limits and struggles of further chemo and operations down the road. I am still in the middle of treatment so I can't speak to long term NED status, but I am hoping to get there! If I were you I would list out all the pros and cons and go from there. I don't want to tell you one way or the other, just wanted to share my decision process.


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