Topic: Seattle Consult

Hi all I just got back over the weekend from my consult up at the Seattle Cancer Center.  I really enjoyed the onc up there and it appears they deal and see a lot of cholangio patients, up to 60 a year he said.  For the most part he was agreement with the plan of action that my current onc has reported.  Finish 8 cycles then possibly attempt the y90.  However Dr. Harris (in Seattle) did mention that y90 he feels is most beneficial on shrinking tumors when they are smaller than mine, that y90 is a good choice for me if I continue to not be a candidate for surgery.  He didn't say it's a last resort but he did say that with gemcis and y90 its rare that to see significant shrinkage and the y90 would just again, be mostly palliative and prolonging my life.  He did say he was happy to see over 3cm of shrinkage in about 3 months and we are anxiously awaiting the next scan on the 16th of this month.  Dr. Harris would like me to come back to Seattle after the scan to consult with one of his surgeons.  Considering the size of my tumor and I am anticipating after the scan, it most likely will still not be enough shrinkage at this time.  I don't want to feel that all hope is lost and that I am just doing this to prolong my life and that's hard.  He was very caring and knowledgeable but also very direct and I liked that. I still have to believe in miracles and me leaving my 2 young children behind is still not an option for me smile  I am not quite ready to settle for "NEVER" being a candidate for surgery and will continue my 8 cycles, get the scan and go from there.  He also mentioned going back to chemo, and even possibly some clinical trials (but didnt mention which ones).  I feel like the trip was worth it and I was glad to hear his opinion on my situation.  Aside from some abdominal pain, and some mild effects from chemo I physically feel good and don't feel sick and I try and remind myself to be grateful for that.  Well hope everyone is trying to enjoy getting ready for the holidays.  Blessings to you all.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Seattle Consult

Hey, Porter, actually it sounds good to me as he was open to a lot of options. I too liked the way he talked to you. You know, I think a Doctor makes a world of difference in his attitude. So, do you think a visit may be in order around the holidays? Hurry up get that scan done! LOL I am not very patient for a patient!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Seattle Consult

Lainy, yes he was very kind respectful and I didnt walk out of there feeling hopeless or a lost cause.  Ah, the luxury of waiting on scans smile  I will not be visiting over the holidays.  For some reason the family decided to meet up in Vegas with all the kids and such.  The plan was for Phoenix, but we are looking forward to the trip.  We are also going to get in some Cirque de Soleil shows and many other awesome sights as well.  I can't wait to be with my family and it's been the first time we have all been together since my mom passed earlier this year.  smile

Hope, love, strength...2013 and for the years to come, Porter.

Re: Seattle Consult

Oh I bet you will have a blast. I sincerely hope some day you come visit your brother here. then I know I will meet you! I heard another great show is The Beatles LOVE. OMG I think it is by Cirque de Soleil! I heard it is beyond fabulous!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Seattle Consult

We are going to LOVE smile  I will be down to visit my brother at some point next year.  I will definitly let you know when I do!

Hope, love, strength...2013 and for the years to come, Porter.

Re: Seattle Consult

Hi Porter,
You have a great attitude and clearly a huge motivation with little ones to raise! That's what bothers me deeply about my sister having cc.. Her innocent young son is affected and she doesn't always have the energy to do the things moms love to do with and for their kids. Like you, she is grateful for feeling mostly good. I'm hoping and praying for you for lots more shrinkage shown in the upcoming scan. 3cm is a lot already, how much more do you need to be considered for surgery?

Willow

Re: Seattle Consult

Willow, a lot more I would imagine.  I would say surgery is always the goal, but unlikely in my case..Tumor started off at 17cm last scan showed 14cm, and I have a scan on the 16th.  Gosh, I get very upset because when I was misdiagnosed in 2010 the tumor was about 6cm.  I can't help to think of possibly how different my life could have been if they didn't misdiagnose me, but as cliche as it sounds everything happens for a reason and I try not to dwell on being angry at the misdiagnosis as much anymore.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Seattle Consult

Hi Porter. I just wanted to chime in here and say what a great attitude you have - I love a fighting spirit.

Also, my Mum’s tumour is a similar size to yours (15cm x 9cm), with a few satellites. However, she has recently been told that surgery IS possible if the tumour stays the same size on chemo. I’m not sure whether this is to do with location, a bit of a daring surgeon or what?  The surgery in question involves a first operation to grow a portion of the liver (so that  there is 20% of “healthy” liver to support the body), and then a second surgery to remove the remaining 80%. I wonder whether this may be possible for you too?

Best wishes,
Jules

9 (edited by PCL1029 Mon, 09 Dec 2013 09:52:42)

Re: Seattle Consult

Hi, Porter,
Have you had a 2nd opinion on liver surgery by Dr. Selby at UCSF or Dr.Chapman at St. Louise? they should see more than 60 patients per year.  Jules above message is very encouraging and you may reconsider this opinion.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Seattle Consult

Percy I have not.  This was my first "second" consult since I was diagnosed.  And Jules thank you for sharing.  I will have my second surgery consult up in Seattle and then look into one of the ones previously mentioned by Percy.  Thanks all.  Blessings.

Hope, love, strength...2013 and for the years to come, Porter.