Liver blockage-Oxaliplatin Hail Mary

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Elenitsa
Posts: 7
Joined: Tue Feb 14, 2017 8:51 am

Liver blockage-Oxaliplatin Hail Mary

Postby Elenitsa » Sun May 21, 2017 8:25 am

Hi all,

My DH has been in treatment for stage 4 colorectal with mets to liver and peritoneum. He was diagnosed in Nov 2016 starting treatment right away in Dec. unfortunately due to side effect complications he couldn't tolerate 5-FU and ended up on irinotecan-avastin and raltitrexid. After about 4 doses they did a ct scan and said it's not working due to the cancer may have grown about 1-2 mm. We were to switch to oxaliplatin + raltitrexid. At that time he developed jaundice and ascites (abdominal fluid build up) the docs said his bilirubin is quite high and to now prepare ourselves as he likely will not make it, and his liver can no longer tolerate chemo or trials. They did administer then chemo at 25% as a sort of Hail Mary that it could help his liver last week. He is only 38 and at the beginning was told since his health is so good he'd be idea for trials etc...I'm not sure if the chemo is what killed his liver but we are worried now we are at the end with no options. Has anyone had success with oxaliplatin? Or with liver issues getting better on chemo? We aren't sure if this can turn around or if we should be preparing for the worst as the doctors keep saying they are worried. Thank you all xo
Caregiver to husband <3
Husband diagnosed Stage IV CRC with Mets to Liver & Peritoneum Nov 2016 (Age 37)
Currently Undergoing Chemo-Irinotecan, Aastin & Raltitrexid

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Lee » Sun May 21, 2017 6:53 pm

So sorry your husband is having so much difficulties.

Where is he being treated at? Getting a 2nd opinion may be a good idea.

I would highly recommend getting treatment at a major cancer treatment center. It would be good if they can get a biopsy of the tumor. Today it is possible to determine which chemo will work best or if immunotherapy is the way to go.

Dr Kemny at Sloan Kettering Memorial in New York City has had great success with liver mets.

Hoping for the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Maia » Sun May 21, 2017 8:41 pm

Elenitsa,
would it be possible for you to consult Dr Yoo-Joung Ko, at Sunnybrook?
416-480-4662 2075 Bayview Avenue Toronto, ON

He is the Canadian specialist in HAI pump, what Lee has mentioned, so he would know if that is possible. But he's also a specialist in colorectal liver metastasis, he might be able to guide you.

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Liver blockage-Oxaliplatin Hail Mary

Postby TXLiz » Mon May 22, 2017 10:58 am

Prayers for your family. I don't have any wisdom but anything can happen and I hope for the best for your husband.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Maia » Mon May 22, 2017 12:33 pm

Also, at the Princess Margaret Hospital they have a clinical trial with a targeted agent, a pill, trametinib, for those with liver dysfunction:

Trametinib in Treating Patients With Advanced Cancer With or Without Hepatic Dysfunction

'This phase I trial studies the side effects and best dose of trametinib in treating patients with cancer that has spread to other places in the body and usually cannot be cured or controlled with treatment (advanced) with or without liver (hepatic) dysfunction. Trametinib may stop the growth of tumor cells by blocking proteins needed for cell growth. When these proteins are blocked, the growth of cancer cells may be stopped and the cancer cells will then die. Hepatic dysfunction is frequently found in patients with advanced cancer and usually prevents patients from receiving standard treatments or from participating in clinical trials. Patients may also need dose adjustments or absorb drugs differently. Trametinib may be a better treatment for patients with advanced cancers and hepatic dysfunction.'

https://clinicaltrials.gov/ct2/show/NCT02070549

Is he MSS? Mutations?

Elenitsa
Posts: 7
Joined: Tue Feb 14, 2017 8:51 am

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Elenitsa » Mon May 22, 2017 1:20 pm

Thank you so much for your replies, we have met with 2 people at princess Margaret and we're declined as there was nothing to offer us at that time, although Maia I will certainly ask our oncologist about tramentinib! Thank you for that! We were also sent in to sunnybrook who I was told also declined, I am very interested in the pump but I heard they would not do it if he has peritoneum mets, is that true? I will however call tomorrow regarding that consult. We are just north of Toronto so Sunnybrook would be idea for us. Thank you all for your prayers, this has been such a difficult time I know a biopsy was done during his colonoscopy but his tumor type was never communicated to us.

Thank you again!!
Caregiver to husband <3
Husband diagnosed Stage IV CRC with Mets to Liver & Peritoneum Nov 2016 (Age 37)
Currently Undergoing Chemo-Irinotecan, Aastin & Raltitrexid

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Maia » Mon May 22, 2017 1:35 pm

You're welcome, Elenitsa.
It is true that the pump won't be possible at the moment. But those doctors at Sunnybrook are certainly liver specialists.
Also, at Sunnybrook there are doctors that work with low dose chemotherapy --other concept, other way to administer chemotherapy. Don't think that the Princess Margaret has all the options, Sunnybrook might be equally great : )

Elenitsa
Posts: 7
Joined: Tue Feb 14, 2017 8:51 am

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Elenitsa » Mon May 22, 2017 2:14 pm

We were trying to get transferred to a new oncologist at sunnybrook, dr Scott Barry I believe but we never heard back, everyone is telling us we have to stay at our local hospital if there is nothing unique the other ones have to offer, we would love to switch to sunnybrook given their young adult colorectal clinic but it feels like no one will accept us, do you know if there is anything we can do on our end?
Caregiver to husband <3
Husband diagnosed Stage IV CRC with Mets to Liver & Peritoneum Nov 2016 (Age 37)
Currently Undergoing Chemo-Irinotecan, Aastin & Raltitrexid

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Lee » Mon May 22, 2017 2:19 pm

Keep trying to reach Dr. Barry. If at 1st you don't succeed, try try again. With the situation your husband is in, he needs to be treated "aggressively" at a cancer treatment center. It sounds like the local center just want to make him comfortable.

Wish I could help more. Maia is the person to help you,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Maia » Mon May 22, 2017 2:23 pm

I don't really know BUT if Sunnybrook is nearer your home and you think your husband should be treated there... I would contact and bug them to no end :)

Dr. Scott Berry: scott.berry@sunnybrook.ca. or 416 480 4270

The squeaky wheel...

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Maia » Mon May 22, 2017 2:29 pm

Lee wrote: It sounds like the local center just want to make him comfortable.


Lee, the thing is that I think Elenitsa hubby IS treated at the big center Princess Margaret Hospital.
Elenitsa, I'm not Canadian --I'm in Argentina, about 6000 miles from there. Faith, my friend for whom I joined this community, was Canadian, treated at the PMH. I do know she missed some opportunities of possible treatments at the Toronto General Hospital and at Sunnybrook. Big centers are great but many times, not always, they tend to not offer what they don't have, to say the least, and won't make referrals.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Lee » Mon May 22, 2017 2:34 pm

Maia wrote:
Lee wrote: It sounds like the local center just want to make him comfortable.


Lee, the thing is that I think Elenitsa hubby IS treated at the big center Princess Margaret Hospital.


Okay, my mistake. Clearly confused on this one. So very glad you are here to help her.

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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

Re: Liver blockage-Oxaliplatin Hail Mary

Postby mariane » Mon May 22, 2017 3:50 pm

I think checking MSI/MSS status may be very important in this situation.

The elevated bilirubin may be unfortunately exclusion criterium for HAI pump.
I heard about patients who received SIR-spheres at MSKCC when somehow HAI pump was not possible. Usually doctors qualify patients to Y-90 based on ECOG criteria. The situation requires acting fast in the case of spheres. Deteriorating ECOG status may exclude from the treatment. I liked Karen Shanahan blog about her metastatic to the liver colorectal cancer fight. Her story gave me hope. I am one of the liver patients.

Hugs and prayers,
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!

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Maia » Mon May 22, 2017 4:12 pm

Lee wrote:Okay, my mistake. Clearly confused on this one.

LOL What mistake, Lee... hard to keep track of all --and it *does* sound like if her hubby is not treated at a big cancer centre. I only remember this, sadly, because of my own friend's experiences. She had the most arrogant doctor at the PMH, one that would walk out of the room while she was talking to him, and wouldn't read the letter other doctor from an USA centre wrote for him, where my friend made a second consult. I'm sure there are other caring doctors there, but that is what I remember. Also, not being told about clinical trials near her that happen to not be ongoing at that same facility :(
BTW, Lee. You always says nice things to me, that I don't even know how to respond; they just make me blush. But your permanent support to all in this forum, new and old, your caring attention so important questions don't go unseen, your willingness to share your experience... wow. Your words always make me happy, each time I visit the forum. xoxoxo

Elenitsa
Posts: 7
Joined: Tue Feb 14, 2017 8:51 am

Re: Liver blockage-Oxaliplatin Hail Mary

Postby Elenitsa » Tue May 23, 2017 8:15 am

So sorry for the confusion guys! He isn't being treated at princess Margaret, we just had consults there but are being treated in Margan both of Toronto. They are monitoring the bilirubin right now, I'm just worried if the oxaliplatin doesn't work there doesn't seem to be any other options left. Has anyone had any Information regarding alternative treatments? Thank you so much for your help
Caregiver to husband <3
Husband diagnosed Stage IV CRC with Mets to Liver & Peritoneum Nov 2016 (Age 37)
Currently Undergoing Chemo-Irinotecan, Aastin & Raltitrexid


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