Symptoms of Advanced Liver Metastasis / Liver Failure?

Please feel free to read, share your thoughts, your stories and connect with others!
jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Symptoms of Advanced Liver Metastasis / Liver Failure?

Postby jortego128 » Mon Nov 09, 2015 4:59 pm

I have been reading up on liver function / failure as I believe my mom is exhibiting some of the symptoms. She missed the last 2 FOLFOX/Avastin chemo treatments due to poor blood work (I dont have the exact details on that). We are scheduled to meet with the oncologist tomorrow to discuss CT scan taken last Friday. Although I dont know for sure yet, I suspect she is exhibiting liver ascites and poor liver function. Despite the 3 week break from chemo, she continues to be extremely fatigued, has almost no appetite, some shortness of breath, and has some noticable confusion / absentmindedness. Her abdomen also appears to be quite swollen and somewhat hard-- I just read up on liver ascites and the symptoms seem to match hers very closely.

Has anyone here, caregivers or patients, seen or dealt with this before? As positive as I am trying to stay about everything, I cant help but think this is what we are going to hear tomorrow. It seems the FOLFOX/Avastin combo was holding her CEA steady in the mid 30's for a while, but the last blood test result showed a reading in the 50's. I think they are thinking of switching to FOLFIRI, but if her symptoms are due to ascites / poor liver function, I'm going to press the onc very hard on the living donor liver transplant. I just read that Ochsner New Orleans does indeed have Living Relative Liver transplantation. Metastatic cancer is listed as a contraindication to standard liver transplants, but I am hoping with all my heart that we can circumvent that by going the living donor route. This facility is just a 3 hour drive from our home-- the logistics just absolutely do not get any better for us. I am the same blood type and believe I will be a match in a workup-- I am just hoping the doctors dont stand in our way.

Liver Ascites - http://www.merckmanuals.com/home/liver- ... se/ascites
Liver Failure - http://www.merckmanuals.com/home/liver- ... er-failure
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

User avatar
exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: Symptoms of Advanced Liver Metastasis / Liver Failure?

Postby exaussie » Mon Nov 09, 2015 5:21 pm

I will pm you
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

User avatar
dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Symptoms of Advanced Liver Metastasis / Liver Failure?

Postby dianetavegia » Mon Nov 09, 2015 5:57 pm

One member, who died a number of years ago, shared privately with me her battle. Another woman posted on her husband's death and it really traumatized me for years.

From what I've read, death from liver involvement can be very ugly including the mental concerns you mentioned. I would suggest you contact Hospice and talk with them. They now help with a lot of symptoms well before time of death.

I remember one member posting that hospice had come by that morning and after they left, he made a huge pot of his homemade chicken soup for supper and straightened up the house before the wife was to be home from work. He wasn't in pain and was able to live every moment to the fullest, thanks to hospice and palliative care.

Regarding the liver transplant, they would test the ascites and if any cancer cells were present (which I'm sure there is), there is no way they'd put a healthy liver into a diseased abdomen so don't get your hopes up. Unfortunately, your mom sounds like she's very ill.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: Symptoms of Advanced Liver Metastasis / Liver Failure?

Postby jortego128 » Mon Nov 09, 2015 10:21 pm

dianetavegia wrote:
Regarding the liver transplant, they would test the ascites and if any cancer cells were present (which I'm sure there is), there is no way they'd put a healthy liver into a diseased abdomen so don't get your hopes up. Unfortunately, your mom sounds like she's very ill.


Even if it was a portion of my self-donated liver? You may be right, but I dont understand that logic-- we would not be taking a good deceased-donor liver which would be better served in a hepatitis or HCC patient-- if the operation went well, we would be directly saving my mothers life and extending it for an as of yet unknown amount of time, possibly years.
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Symptoms of Advanced Liver Metastasis / Liver Failure?

Postby Bev G » Mon Nov 09, 2015 11:57 pm

Hello Jortego.

Hi I so admire you for being willing to donate a portion of your liver to your beloved mother. A couple of things that could be tremendous hurdles, butt perhaps ones that could be overcome. Having the same blood type as your DM in no way means your liver would be a match for her....there are many. many matches that must be exact for it even to be a possibility. Next, were your mom to receive a portion of your liver, she would have to be on immunosupressants for life to try to prevent rejection of your liver. These drugs can be really tough, and may even promote her cancer recurrence risk, so a double-edged sword. Also, though perhaps less of a concern, is whether insurance would cover this. Is is NOT the standard of practice in the US, and I would suspect they would deem it experimental (which it is). It's also possible that your mom is too ill to withstand the surgery, although anyone receiving a liver transplant is, by definition, critically ill.

How fortunate she is to have such a loving, selfless caregiver. I wish you all good fortune in your further exploration of this potential option. I hope you will keep us posted.

Hugs to you.

Bev

PS I think somewhere in Denmark is doing this? I will try to find the paper I read about it and will post it here for you if I can track it down.

Hi again, Jortego.

http://www.medscape.com/viewarticle/802908

Here's the paper I mentioned. The CRC transplant work was done in Norway. It seems they are much more likely to attempt transplant for neuroendocrine tumors (which CRC is NOT) I hope this paper may help.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: Symptoms of Advanced Liver Metastasis / Liver Failure?

Postby jortego128 » Tue Nov 10, 2015 8:03 am

Thanks for your kind words Bev. I'm trying to be realistic about the chances of getting doctors to agree to the procedure, me being a match, etc. I anticipate there will be a lot of skepticism and not taking it into serious consideration. If I can at least get my onc to refer us to Ochsner for consideration that would be a major step. They may still deny it outright, but I'd rather hear it from a prominent transplant center/doctor than our young local oncologist. I have read the paper by Morten Hagness about the SECA study done in Norway. To me it seems pretty conclusive that transplantation is superior to chemotherapy for non-resectable CLM. That said, there is definitely a window/timeframe and certain conditions where they saw better results than others.

We should find out a lot more regarding her condition today. I have still heard no mention of signs of extra-hepatic metastasis, but to be honest Im not even sure they are looking for them, which concerns me. Im concerned about the swelling of her abdomen and what they can do about it, if it can be drained, etc.


They will probably want to begin a FOLFIRI regimen if there is a potential benefit. Im skeptical of that though, if the FOLFOX/Avastin did little to no good.
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Symptoms of Advanced Liver Metastasis / Liver Failure?

Postby mariane » Tue Nov 10, 2015 8:22 am

Jortego,

Beverly is right it is not easy to match donor and patient however I know many situations when a parent donated a part of his/her liver to a sick child. It is quite common procedure in Poland. Even a thought of giving your mom part of your liver is very generous but....I do not think your mom even agrees. Being a mom I would reject this gracious gift. Liver transplantation is not a completely safe procedure.

I read and posted about Norwegian study. They transplant liver to crc patients but reject the ones with extra hepatic disease. Their results are quite good. They add 5 years of life to the half of the patients. It does not mean a cure for most. Patients very often experience recurrance but gain time, new possibilities etc.

Fluid in your mom's belly could be either liver failure or peri mets :( Is her skin, eyes yellowish? Either situation means she does not have much time left. I am very, very sorry. Praying for you.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: Symptoms of Advanced Liver Metastasis / Liver Failure?

Postby jortego128 » Tue Nov 10, 2015 4:12 pm

Update from our visit with oncologist today. I was expecting the worst, but the actual news was better than I expected. Lungs clear, mets showed stability since last CT in late August. CEA rising though, now around 60. Its been a solid month since last chemo treatment though, due to low platelets. Bilirubin levels were normal per onc (1.3).

My mom does have ascites though. Onc not sure if its from the liver or possibly peritoneal mets. They cannot tell from CT if there are peri mets. Onc scheduled appointment next monday with surgeon to drain abdomen and perform biopsy on the fluid.

Onc wants to switch to FOLFIRI +Avastin as soon as platelets allow.

As far as the LDLT, I was pleasantly surprised that onc actually listened to me and took the literature from the SECA study in Norway. I gave her a referral phone number to Oschner and asked if she would call and see what they would say. She agreed, but judging from a call I got from Oschner LT department today, the odds are not good. If they actually agree to do a work up once they learn about her situation that would be a HUGE step forward. We'll see.
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 23 guests