Can we ever get out of this hole? Update

[JENNJ]

My Dads cancer has unfortunately spread to the peritoneum and he had 3L of fluid drained from his ascites yesterday. Although the lung and liver mets have shrunk up to 40% it doesn't seem to matter due to the progression in his peritoneum.
He is home now and uncomfortable and sleeping a lot. The onc recommended we try irinotecan with a targeted agent on Friday and see if that works. Otherwise all I think we have is stivarga.
He has a 25mcg fentanyl patch on and that helps but he is constantly bloated, uncomfortable and has a high acidity in his stomach. His labs are all good except his ALP and his CEA. AST, ALT and bilirubin are all normal.
Can we really expect to ever get out of this? He is a broken man, we are all devastated. It's all so sad.
Katy

[exaussie]

There is just no easy answer here. The Dr's did a hail Mary pass with my son which included irinotecan. His liver couldn't take anymore. With your dad's numbers looking ok it's not as tough spot to be in. Hopefully with whatever your dad decides to do- as long as he knows you'll back him it will give him hope to fight on. As we always said no regrets and it's a marathon not a battle. You all may feel defeated but don't look to far ahead because whatever you imagine won't be what actually happens. The patches work for some, I really feel that in US in this day and age no one needs to be overwhelmed by pain.

Best wishes

[mariane]

I am very sorry.

It sounds like massive peritoneal spread.

Maybe FOLFOXIRI/FOLFIRINOX + bevacizumab (Avastin) if he can survive harsh chemo ? Immunological trial? I would try one of these DK37 mentioned PD1 trials for MSS ?

http://www.ncbi.nlm.nih.gov/pubmed/24138831

viewtopic.php?f=1&t=52397&p=410691#p410691

[Bev G]

Hi Katy,

I'm so sorry you and your DD and the rest of your family is going through this. It sounds just awful, and I know it is very scary. Of course no one, including the docs, can tell you exactly what is going to happen, butt I can tell you what typically seems to happen after being on this board for many, many years. The biggest part of me sort of wants to put on a Pollyanna hat and tell you things will be OK (and maybe they will) butt it seems usually that once this level of ascites occurs there is not a lot to do, unless someone thought they could get all the peritoneal mets removed. Your dad does not sound like he is in a condition to attempt that. Peritoneal mets cause ascites because they leak a lot of fluid into the abdominal cavity. I know you already know this since your dad had 3 liters removed last week. The ascites is produced very dynamically, and he could likely have 3 or more liters removed next week. Unfortunately the fluid just keep coming back. A big excess can push really hard on the diaphragm, making it feel like one can't breathe well. Sometimes it can interfere with breathing. I don't know all the data about Stigarva, butt I do know I've had a number of friends on the board who wound up with completely compromised livers while on the drug (liver failure can also cause ascites, butt it sounds like your dad's labs are pretty good). Stigarva might be very tough on him. Perhaps it's coming to the time where the most that can be done is to provide for his comfort. I'm sorry I don't have any real positive thoughts, and again, am so sorry what you are all going through. ((((Katy)))

Godspeed,

Bev

[ieowi]

very sorry to hear this, i really hope he get out of it, i wish if there is something we can do to help.

[JENNJ]

Well- my Dad DID get out of it! After multiple paracentesis procedures the last few weeks and only 2 doses of irinotecan with vectibix and zelboraf, his ascites has resolved. He is eating, NOT puking, sleeping well and feeling much better. His CEA dropped 200 points and his pain is such much more manageable with just a low dose fentanyl patch. He actually is planning on going back to work this week. However temporary this may be we are all loving this time with him feeling so much better.
Praying this carries on.
Thank you
Katy

[NateA]

Great News! Ha! Getting out of the hole can happen from time to time!

[JENNJ]

Thank you NateA!

[ieowi]

Good to hear he is ok, I am very happy for you !

[JENNJ]

Thank you ieowi! You have to enjoy every moment of the good times...
Katy

[pfCml73183]

So happy for you all.
Celeste

[Crystald]

Wonderful! Such great news!

I am so glad that you posted an update and that your Dad is responding to treatments. Cherish this time.
Keeping you both in prayer.

[Bev G]

Thanks for letting us know this great news, Katy! So glad your dad is feeling so much better!