Tears and frustration...

Phil64
Phil64 Member Posts: 838 Member

I went to see the oncologist yesterday to discuss the recent scan findings.  As previously posted last Friday's MRI detected three new tumors near the incision line from a liver resection done on 2/7/14 (six months ago).  The doctors are very concerned about the quickness of this recurrence and this is now factoring into the treatment planning.

The onc reported that if this was a year or two since the previous resection they would recommend another resection followed by chemotherapy.  Given that these tumors have popped up so quickly they are debating agressive chemotherapy first followed by a resection.  Part of the reason they are recommending this is that if the chemo fails (e.g. new cancer appears while undergoing the chemo) they probably will not resect.

We made clear our desire to do the resection first followed by the agressive chemotherapy. And therefore they will now do a PET scan.  If the PET scan shows any other involvement (e.g. lymph node involvement or tumors in other locations) they will likely not agree to do the resection first.

The aggressive chemotherapy he is recommending is FOLFOXIRI/avastin.  I already received the FOLFOX (eleven treatments) followed by FOLFiRI + Erbitux (twelve treatments).  The more agressive chemo he is proposing is basically both FOLFOX and FOLFIRI + avastin.  

As patients - How are we supposed to KNOW we are getting the best regimen?  How are we to know if there is better treatments available? If feels like I could do a better job of researching treatment options but I think that would take years to do...  That is why we have doctors...

My wife wants me to get a second oppinion to be sure we have the best plan. If I do that, how do we know which is the best cancer center to consult with? 

I am so discouraged. I know that it comes down to picking a doctor, feeling comfortable with the doctor (based on intuition) and then trusting them. But this seems too trivial of an approach for a life/death decision.

Deep breath (a lot of those lately).

I suppose I'm ranting and maybe on the verge of panic? 

What are you feelings?  What is your thinking?

Should I buy a plane ticket to Houston (MD Anderson)?  Or get in the car and drive to Cleveland (Cleveland Clinic)?

I HATE CANCER!!!

Part of me wants to fire all the doctors and just ride it out for as long as I can.  No treatments, no scans, no f____g doctors...  Instead, retire early, take a trip to somewhere exotic and beautiful...

But then comes the morning. I have a fourteen year old child. I have a daughter planning a wedding next July. I have two other daughters hoping to plan weddings after that.

And I still have to mow the grass too... Three acres of grass... lol

That's another story.  I have a  large house fit for five children and two parents.  We are now down to my wife, me, and a fourteen year old son. And there is a lot to care for in this larger house. My wife is terrified that if I'm not around she will not be able to manage this house.  So now she wants to downsize. Wouldn't that be fun?  To move during the "agressive" chemo???

I wrote a poem...  But I'm afraid to share it with anyone...  I have'nt updated my blog in a while and simply don't want to blog anymore...  But I know many of you have been through everything I'm going through and more and so shareing with you all seems like a little easier task...

 

 Sometimes (by me)

Sometimes I’m confused
Feeling dazed, forgotten
I’m tired, torn
Beaten, weak
Where is strength?

Sometimes the storm rages
The clouds darken
The torrential rain falls
The thunder shakes my soul
Where is peace?

Sometimes the blackness envelopes
No stars in the sky
The moon is lost
The night is long
Where is the light? 

Sometimes you must have faith!

 

 

 

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Comments

  • bailee2012
    bailee2012 Member Posts: 60
    So sorry to hear this for

    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

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Poem answer

    An answer:

     

     

     Sometimes (by me with additions by Marie)

     

    Sometimes I’m confused
    Feeling dazed, forgotten
    I’m tired, torn
    Beaten, weak
    Where is strength?

     

    Strength is all around

    Family, friends and within

    I just have to say I need it,

    Reach out

    And it is mine

     

    Sometimes the storm rages
    The clouds darken
    The torrential rain falls
    The thunder shakes my soul
    Where is peace?

     

    Peace is within

    Mind, body and soul

    The storms of life may come

    And hide it for a time but know

    It is still there forever more

     

     

     

    Sometimes the blackness envelopes
    No stars in the sky
    The moon is lost
    The night is long
    Where is the light? 

     

    The light is in my family’s eyes

    And in their hearts as well

    No matter what life brings my way

    It will always be

    I just have to look to see

     

    Sometimes you must have faith!

     

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Where to go for second opinion

    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

     

  • wolfen
    wolfen Member Posts: 1,324 Member

    Poem answer

    An answer:

     

     

     Sometimes (by me with additions by Marie)

     

    Sometimes I’m confused
    Feeling dazed, forgotten
    I’m tired, torn
    Beaten, weak
    Where is strength?

     

    Strength is all around

    Family, friends and within

    I just have to say I need it,

    Reach out

    And it is mine

     

    Sometimes the storm rages
    The clouds darken
    The torrential rain falls
    The thunder shakes my soul
    Where is peace?

     

    Peace is within

    Mind, body and soul

    The storms of life may come

    And hide it for a time but know

    It is still there forever more

     

     

     

    Sometimes the blackness envelopes
    No stars in the sky
    The moon is lost
    The night is long
    Where is the light? 

     

    The light is in my family’s eyes

    And in their hearts as well

    No matter what life brings my way

    It will always be

    I just have to look to see

     

    Sometimes you must have faith!

     

    Phil

    Is it possible that you can have an ablation instead of a resection? JBG had a liver recurrence shortly after a resection & ablation was done. It did keep it at bay for a time.

    Your very special poem hit home, as well as Marie's addition. Different reason for me, of course, but the feeling is the same. The demons live with me each night.

    Wishing you the best whatever your decision.

    Luv,

    Wolfen

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Travel

    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

     

  • marbleotis
    marbleotis Member Posts: 720 Member
    My spin on it

    Here is my spin - and by the way you answered your own question.

    Get a second opinion.

    cancer sucks, but we still do retain some power, the power of info.

    There are so many wonderful people on this site that faced similar issues and I am sure will post their Onc info like crazy.

    This way when YOU make your decisions YOU will have all the info.

    I said it once and I will say it again....... with cancer, info is power!!

    BTW - downsize that house, less is more, no one needs to mow all that grass.

    Go get 'em Phil!!

     

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    Phil

    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

  • geotina
    geotina Member Posts: 2,111 Member
    Phil:

    Right now you are feeling pretty beat up.  I am so sorry things have come back so quickly.  Unfortunately, it is not uncommon for the cancer to return after resection.  If memory serves you are being treated at the University of Michigan and that is a top notch facility.  For a second opinion closer to home you may want to try Karmanos.   MD Anderson down in Houston is also a good choice.  Is there a possibility they could give you a second opinion based on your records, recent scans, etc. to see if they can offer something different than what you have been offered?  It is worth a shot to ask before making the trip.   Sloan in New York is another very good option.   Maybe people on the board that are being treated at Sloan can share their experiences with you.  A few have had the pump (think it is called HAI or HIA) when the cancer is in the liver with excellent results.  Open a post about Sloan. 

    As far as downsizing, gosh, that is a hard one.  There are lots of homes on the market the but the catch is can you sell your present home while purchasing a new home.  Personally, I would wait to see exactly where you stand with treatments, second opinions, etc.  Let things settle down a bit and then revisit moving.   Packing up goes quicker than you think.  Your job will be to sit in a nice chair, holding a stick, directing people.  I recently had to sell a home up in West Branch, sell some furniture, lawnmowers, etc., pack up the rest, rent a truck, pack it  and haul stuff downstate.  It was a home George and I were going to retire to.  My daughter came from Chicago and we accomplished it all with a brother-in-law driving the truck. 

    Hang in there.   Research that second opinion but do it quickly, get the older kids involved in researching.  None of this stuff is easy to deal with, it is horrible.  Just when you think you have done everything right it comes and slaps you in the face.   

    Hugs - Tina in Livonia

     

  • LindaK.
    LindaK. Member Posts: 506 Member
    I feel your frustration too

    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
    annalexandria Member Posts: 2,571 Member
    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

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    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

    Just wanted to add

    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!

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member

    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

    Phil, 
    Get a second opinion

    Phil, 

    Get a second opinion and dust off the motorcycle!  i am sorry that you are going through this yet again.  The best advice I ever got was from a nurse who said "Take 24 hrs to be upset, then get proactive."  MGH (Massacusetts General Hospital) where I am treated is a great cancer hospital and I have a terrific oncologist but I still got a second opinion. No one is God but God. Options are what we are all looking for and they are out there. 

    I love the poem and LK's additions. You expressed so well what so many of us have felt. 

    You are quite right...you have a lot to live for. 

    Prayers for strength, clarity, and perseverance.

    Hugs,

    CM

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
    Phil

    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!

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    I am so sorry that you're dealing with all of this!

    Yes, I think a 2nd opinon is wise. If you are at all wondering or doubting if there's something better out there, go for it! You don't want to regret not checking out any other alternatives. My brother's onc told us yesterday that she is worried about my brother's clotting issues, but she felt he should get another opinion about having the liver chemoembolization. She is very open to any ideas we have and will look for other ways to keep his cancer under control.

    As far as the move, I just moved my dad and brother and he is in the middle of treatment. I did it because it placed him closer to doctors and hospitals, which is important here in the northeast in the winters. This is also a cleaner environment for him and he is closer to me, so I can check in on him and dad more often. I have to be honest, moving is very stressful. My brother didn't have to deal with all the paperwork or the physical activities. I made all the arrangements, did all their change of addresses and packed and moved the boxes, as well as unpacked the boxes. It's a lot of work, so be sure you can handle it. My two cents, if you can afford it, hire a neighborhood kid to mow your lawn. Stay where you are until you feel up to all the work. As nice as it would be to downsize, I worry about the stress it would cause you. Unless you have others who will do it all for you, stay put for now.

    Good luck!

    Lin

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    breathe...

    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
    Easyflip Member Posts: 588 Member
    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

  • Nana b
    Nana b Member Posts: 3,030 Member
    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

    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
    Phil64 Member Posts: 838 Member
    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

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    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

    Way to go 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

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Beautiful

    You have a real talent with words. That is truly beautiful.

    We're allowed our dark moments, they are just a natural part of the journey, we just can't sink too deeply into them. 

    I know that many can't handle the sadness here on the forum, these past few weeks, with such loss, are an example, but for me, the strength, even of those who have passed, lifts my spirit and helps me walk the path. 

    Thank you for sharing your beautiful words, and for your strength. 

    I will continue to pray that things will move forward and you will tame the beast. 

    SUE/TRU