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Tears and frustration...

Phil64's picture
Phil64
Posts: 476
Joined: Apr 2012

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!

 

 

 

bailee2012
Posts: 61
Joined: Jul 2012

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's picture
Lovekitties
Posts: 2950
Joined: Jan 2010

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!

 

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

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

Lovekitties's picture
Lovekitties
Posts: 2950
Joined: Jan 2010

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

 

Trubrit's picture
Trubrit
Posts: 1488
Joined: Jan 2013

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's picture
marbleotis
Posts: 492
Joined: Mar 2012

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's picture
Momof2plusteentwins
Posts: 455
Joined: May 2012

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's picture
geotina
Posts: 2060
Joined: Oct 2009

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.
Posts: 322
Joined: Apr 2013

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's picture
annalexandria
Posts: 2263
Joined: Oct 2011

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's picture
annalexandria
Posts: 2263
Joined: Oct 2011

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
Posts: 582
Joined: May 2011

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's picture
Yolllmbs
Posts: 173
Joined: May 2014

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
Posts: 635
Joined: Aug 2013

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's picture
tanstaafl
Posts: 970
Joined: Oct 2010

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's picture
Easyflip
Posts: 107
Joined: May 2013

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's picture
Nana b
Posts: 2921
Joined: May 2009

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's picture
Phil64
Posts: 476
Joined: Apr 2012

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's picture
Lovekitties
Posts: 2950
Joined: Jan 2010

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's picture
Trubrit
Posts: 1488
Joined: Jan 2013

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

lilacbrroller's picture
lilacbrroller
Posts: 285
Joined: Jun 2012

I like all three versions.  I experienced my own feelings in all of them, and was very moved.

 

Good luck with your treatment options. Feel free to post more poetry, dark or cheery Smile, that describes your experience and this wretched disease.

best

Karin

traci43's picture
traci43
Posts: 442
Joined: Jul 2007

Phil - What about going to Dr. Lin in Seattle or someone like him?  Janderson1964 went and saw him recently.  Dr. Lin looked at everything, including tumor tissue, and recommended a course of action for Jeff based on his cancer.  If you can afford it, that's what I would do and what I plan to do soon.

I wish you all the best, it sucks when you have a recurrance so quickly.  I loved the poem, all the versions.  It is a really good depiction of what we go through sometimes.  Hope you find the answers and get the right treatment.  Traci

Helen321's picture
Helen321
Posts: 783
Joined: May 2012

I don't have real input because I haven't gone through what you're going through.  My doctor at Sloan did my chemo first and then the surgery because she said "that's the latest based on research" but really it's all a guessing game, my other doctor was going with no chemo after the cancer came back so quickly.  I knew that was wrong so I went to Sloan.  They don't know either.  If she was so confident, she would have told me to take my port out right away, not leave it in for 18 months.  Keep on keeping on Phil, you have weddings to attend and lawns to mow (thanks for that laugh).  Cancer can suck it!  We're with you!!!

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