Tears and frustration...

So sorry to hear this for you. I really don't have any advice I just wanted to let you know that you are not alone and try to be strong and have faith in your decision.  Personally I would push for the resection first but what do I know.  I'm hoping that nothing new shows up on the pet so you can get the resection if that is what you want to do.  Everything with this disease is so unfair and I hate that we are all having to go through the he!! that it puts us through.  Praying for you

Certainly an NCI center is a good choice.  I don't know \if one is more recognized for their work with liver issues than another.

There have been a number of positive posts here regarding Sloan-Kettering in NYC.

Definately get that second opinion.  You don't mention the size of the new turmors.  It may be that they were there before resection but too small to get.  There may be other options other than resection...such as direct chemo to liver...the radioactive spheres...(sorry don't know the medical terms here).

Ask about them all.

Praying for good answers to come your way.

Hugs,

Marie who loves kitties

I was told to travel to Salt Lake City and the Cancer Center there; but how do I do that, it is five hours away? Do I drive there and back for every chemo? Do I live there? For me, travelling to a Cancer Center was not something I was willing or able to do. 

I do think a second opinion is a good idea, but you know, that takes time, so you have to weigh up if you have that time. Once you have your second opinion, how long will it take you to decided which to go with (if they differ)? And as you say, how do you decide? 

Your poem is beautiful, I also love and agree with LKs addition. 

I re-read this post and really, there are so many question marks. This sums up Cancer for me. So many, too many question marks.

I will keep you in my prayers, that you are able to find peace in whatever decision is made, and more so that the treatment will take care of your tumours.

As far as downsizing goes, and this is just MY opinion, DO IT. Do it for your wife if not for yourself. Gather your family around you to help, and find yourself a lovely little home where you and your wife can grow old togeher.  If you're sick to your stomach with chemo, sit in a chair and let them work around you. Like I said, just my own opinoin. 

You are a great man, I feel your spirit here on the forum and on FB. And when I say I'll keep you in my prayers, I mean it.

Cyber hugs to you and your darling wife. 

SUE/TRU

So sorry for what you are going through.  Just keep getting beat up again and again.  I agree with a second opinion, it doesn't hurt to see what another onc recommends, then just go with your trust.  It's so hard living with this cancer, like living on the edge of a cliff dangling.  I hope you get a good plan that you and your family feel comfortable with and fight this crap back.

Sandy

Phil, get that 2nd opinion.  When my husband's cancer came back (after 2 bowel resections) in the lymph nodes, all his former onc told us (from the hallway after waiting 1 hour) is "It's treatable, but not curable"  Jeez, couldn't he have at least come in and sat down with us to drop that bomb?  Before the doc came into the room, I said to my husband "It's time for a 2nd opinion" and that was the first thing he asked the doc.  He told us he has a big enough ego to "let us" go to another oncology center and did actually set it all up for the next day. We never looked back.  It was like going from darkness to light.  It was so much more hopeful, helpful and advanced than the old place.  The outcome may not be different, but they are so much more helpful, informative and available.

I have had the same feelings you and your wife are having now.  There is SO much to think about.  My husband is trying to set things up for me also.  We own a reasonable sized home where I plan to stay.  We are doing upgrades now while we live in our summer RV park.  It makes him happy to see things getting done.

His recurrence came back fast and aggressive after only 4 months off Folfox.  He started Folfiri in March with some stops and starts.  Just had 1 dose of Vectibix 2 weeks ago and has been terribly sick ever since, including the nasty acne rash.  He's not ready to give up, but I see it really wearing on him.  I don't know how much more he can take either.  He feels lousy most of the time so there will be no "big trip" for us. 

I loved your poem and Marie's additions - there is always hope and faith!

Linda

annalexandria said:

Oh phil

I'm really sorry you're going through all of this.

i do think you should get that 2nd opinion. My oncologist was the head of his department and on the Tumor Board, but I have to say...he made mistakes in my care. I just wanted to be able to trust his expertise and I couldn't. I had to get other opinions, research, and really advocate for myself.

it sucked. But it may make a big difference in outcome in tricky cases like ours, so I do think it's worth the effort.

you can come here or go to the Colon Club forum if you get conflicting reports and see what people think. Lots of experience between the two boards.

hang in there. This is a big challenge you have ahead but you can do it. And we will be here to support you!

big hugs-AA

If it was me I would not downsize during treatment. You can always deal with that when you are in remission again. You don't need any extra stress!

I'm just starting the journey that many of you have already been on.  I'm just going for my 7th round of folfox next week.  I have so many questions and get so frustrated with the wait for answers.  I won't know if there are any problem until after the chemo and they run tests.  Silly me... I thought once they said they had clear margins after surgery and I did chemo I was free! Reading and learning that's not necessarily the case.  Advocate for yourself until you are comfortable with the information and care you are receiving. Ultimately, we all want to take a deep breathe and trust our doctors.  Second opinions never hurt.  If dowsizing is possible without your ultra-effort... I'd go for it!

You might get a second opinion with Dr Lin, or Life Extension's experience, about incorporating celecoxib somewhere in some chemo program, or other off label adjuncts.  

Stopping growth or spread can be a matter of finding and adding just one more humble molecule to stop the cancer cells and reverse a biomarker's rise.   Been there, done that.  Getting extra blood tests, like CA19-9, ESR, LDH from the blood sample drawn, once or twice a month, have been helpful determining sooner what's working for us.

Easyflip said:

Phil

That's tough but you're tougher. In this fight you jab, duck, counterpunch and when you get knocked down you get back up. Sounds like you've got a lot to live for. Any good Dr. welcomes second opinions, I'm at UCSF and I think they're great, plus you get to visit and hang out in beautiful San Francisco!

Just my opinion but I think you should not move, your family should be able to take care of the house, it can't be that big, I'll bet that 14 year old can mow a lawn too. Time to lean on them a bit, I'm sure they would be willing to help in any way they can. It's ok to cry, I bet we all have, nice poem (both of them)

best wishes,

Easy/Rich

I didn't read all the comments but I would do chemo, then resection. If they find more lesions, it may keep you from that resection.   I'm no longer a liver resection candidate because of my lung lesions. at least not while I still have lesions in two organs.

Please try and stay strong, stress is not good it causes more cancer. That is why I downsized, I could no longer keep up with my house and yard. My husband isn't a big contributor to help, I've taken care of him for most of out 30 year marriage. No, actually all of our marriage.

I had chemoemolization and in just one month my CEA dropped 500 points. I get another scan in October. After one week, I was back,on my feet.   Systemic chemo is not recommended for 90 days after this  procedure, so with fast growing lesions I don't think this would be a good option for you.  Maybe they can try Xeloda with Avastin, it wasn't as rough as Folfri and irrotecan (On me)

I also got a second opinion and glad I did. 

I, and this is me, would do:

1. Try and stop future growth with systemic chemo, 3 months

2.  Have Liver resection

3.  Do last of systemic chemo for mop up, 3 months 

Lots to think about. 

Phil64 said:

Thank you Marie

I have taken Marie's direction and modified my poem.

 

Sometimes (by me and Marie)

Sometimes the storm rages
Clouds darken
Torrential rain falls
Thunder shakes my soul
Where is peace?

Sometimes blackness envelopes
No stars in the sky
Moon is lost
Night is long
 Where is the light? 

Sometimes I’m tired
Wounded
Beaten
Weak
Where is strength?

Surrounded by Family and Friends
Faith is revealed
Love is found
Darkness recedes
Light is abound

Perfect Strength
In my utter weakness
God is here!

Thank you all for your advice and encouragement.

I will seek out a second oppinion but more importantly I will thank God for today (I feel good) and I will BATTLE!

Love and Light to you all!

Sincerely,

Philip

The dark clouds do roll in sometimes for all of us.

I like your new modified poem.  There is hope and faith in it.

We all have to be ready to help lift someone one up when the darkness falls.

Hugs,

Marie who loves kitties