Topic: It's back!!

It has been a while since I last posted anything on here! Too long!! sorry...
I have been told cc has now spread to my lymph nodes and my surgeon who I owed my life to has now told me he cannot do any more surgery and he has siad I have months rather than years!
OMG!!!
I am not going to let these people play god with my life!!!!! I have met the most amazing man and my life is just about perfect in fact we are getting married a week on thursday 18 march!
I would like everyone's help!! Please can anyone offer me any alternative treatments or therapies and I don't care where I have to go to get this I am open to options!
I said this to my surgeon and he said he was the most specialized surgeon in this field in the world! I now ask myself is he?
I am still extremely positive but also really paranoid as the same time and need hope for the future?
If you guys can offer me any assistance I would appreciate any help and advice you can give to me............................................carol

Re: It's back!!

Carol,I am sorry you have had this bad news,but congrats on your upcoming marriage.Get married and just live!Dont worry about other sorts of treatments
just eat plenty of fresh foods and enjoy time with your amazing man     Janet

Re: It's back!!

Carol, we are so very sorry about your "news". I don't think it would hurt a thing if you gathered your records to seek another opinion. And whether the news is the same or not, remember no one can really tell anyone how long for anything. Congratulations on your knight in shining armor and enjoy.

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: It's back!!

Surgeons tend to think that surgery is the only thing in the world that works. You REALLY need to talk to a radiation oncologist and a medical (chemo) oncologist as well. After my second surgery failed, I had radiation and Xeloda (chemo pills) and I've had a wonderful three+ years since then. I don't think I would even be alive today if I hadn't insisted on seeing a radiation oncologist.

Wishing you and your sweetie all the best--

Kristin

Peace, hope, and healing to all!

Re: It's back!!

Carol,

I am so sorry to hear of your most recent diagnosis.  I have no medical advice to offer, but you have already gotten some good advice and I am sure more will be forth coming from those who have had similar experiences.

I do want to congratulate you on your upcoming marriage.  My best advice is to live your life to the fullest, one day at a time, and enjoy.

My best to both of you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: It's back!!

Carol,
I too am sorry that cc has again entered your life but also excited about your upcoming wedding.

There is no harm in getting more opinions. Not to be too nosy, but where are you in the UK? My surgeon was Prof. Garden at the Royal Edinburgh Infirmary. He has that Regis title which I forget which basically means that if someone in the Royal Family gets hepto billary issues, they go to him. He was away at Harvard for awhile, but last time I googled him it appeared he is back in Edinburgh. Perhaps you could send your records to him.

Plus, I had surgery denied by 3 surgeons and finally the fourth guy said basically, what the heck? we might as well try. So I am off for a very experimental, high risk surgery in 2 weeks. But chemo isnt working for me, so here is my shot. Not everyone would choose my path.

Anyway, good luck with life and enjoy what lays infront of you.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: It's back!!

Hi Kris

I am based in Leeds I have been under Professor Lodge and he has told me he cannot/will not do any more surgery......He is referring me to someone in London at the Marsden called Professor Cunningham who is a specialist oncologist so see if he can offer me any treatment! I am not going to give up on this, it may take me in the end but I am going to and intend to get as much help as I can possibly get and I, don't care what it costs our lives are to precious for it to beat us all!! I will always remain positive and I am going to do what I can to get better!

Re: It's back!!

I love your attitude, Carol - I wish you EVERY success & my very best wishes for your marriage, too.  I hope you have a wonderful day big_smile

Julia

"Time may be a great healer, but it's a lousy beautician."

Re: It's back!!

Hi Carol,

First off, congratulations on your upcoming marriage!! Now that is something to celebrate! As Darla says, living life to the fullest and enjoying it one day at a time sounds good.

Have you spoke with Prof Lodge about Photodynaimic Therapy, PDT? My dads CC was inoperable and he couldnt have radiation either, and this is the treatment that he had at Ninewells in Dundee. As you are based in Leeds, the nearest hospitals that I know that do this treatment would be the University Hospital Aintree and the North Manchester General.

You have a great attitude and I wish you every success with getting more treatment. And Kris is also right in that getting more opinions can't do any harm either.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: It's back!!

Hi Carol

I have emailed you, but as I have already been able to get some information from one of my contacts, Professor Simon Taylor Robinson at Imperial College in London, I thought to post it here might be be quickest way to reach you.

Simon says he had a patient in similar situation to yours who went to the USA (Gregory Gores) who offered very radical surgery and removal of the lymph nodes and then radical chemotherapy. The patient survived and is still alive 3 years later when Leeds told him it was inoperable. This was at the Mayo Clinic in Rochester in USA.

(According to both Simon and Shahid Khan, another of my contacts, the world experts on radical therapy for cholangiocarcinoma are Prof Gores' group at the Mayo clinic.)

He does also say that David Cunningham is a very good oncologist.

With love and positive thoughts.

Helen

11 (edited by raye Mon, 08 Mar 2010 12:27:31)

Re: It's back!!

Dr. Gores was my contact and interviewer at the Mayo Clinic for my liver transplant for CC. He's a no nonsense guy who will treat you more than fairly. Make an appointment as soon as you can and get the opinion, and send him what he requires.

Raye

I'm a passenger on planet Earth and God is driving.

12 (edited by Pat_Los_Gatos Sat, 13 Mar 2010 03:20:39)

Re: It's back!!

When my spouse was first diagnosed with CC, my cousin who is an MD in Minnesota literally came through the phone line screaming at me to get Mary's records to Mayo ASAP!  They are very used to reviewing files of patients and making assessments if they can do anything for the patient.  Files can be transmitted electronically and that means a Mayo opinion is only a few days away. 

On a different note, my wife's liver surgeon, Dr Brendan Visser of Stanford, did his Fellowship at Univ. of Edinburgh in UK Hepatobiliary/Pancreatic Surgery in 2006. You do have other great talent on that side of the pond! 

Good Luck.

Re: It's back!!

It sounds slike Dr. Brendan Visser did his fellowship with my surgon, Dr. Garden. When I was there one year later, the fellow was another American named Dr. Sanjay Joseph (Josef?). What a wonderfully small world.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: It's back!!

Carol, congratulations on your marriage.  Sorry, to hear that you are having to look for more treatment.  My cancer is inoperable and I have had one round of chemo and radiation, but my CA 19-9 cancer marker has gone "sky-high" but the growth has not shown up on my CT Scan.  I am going to talk to a Dr. Demanes at UCLA about Brachytherapy.  It is done with radiation and I don't know how much it can extend my life, but I will ask when I talk with him this week.  I know surgery is the choice option.  I wish you the best and wished I had more to offer.

Re: It's back!!

Carol.  I hope you are okay.  Congratulations on the wedding.  The pictures on Facebook were lovely.  I know you have had a rocky few weeks, being in hospice for pain control a few weeks ago.  And you were not feeling too good on your holiday in Italy last week.  I see that you are back in hospital again.  I am sending all my love and prayers your way and hoping that you carry on fighting with your very positive attitude.  Lots of love, Sylvia.  god bless you. xxxx

Re: It's back!!

Has anyone ever heard of Dr Eason , head of the transplant institute in Memphis TN. He is supposed to be great. He is a surgeon.