Topic: After Mayo, a third opinion

Hello everyone,

After my CAT scan in July found that my tumor had started growing again, I posted questions about getting a second opinion, and all you wonderful helpful people gave me info that led to my taking a trip to the Mayo Clinic in MN for a consultation with Dr. Steve Alberts.

Unfortunately, what happened there was a big disappointment. He and Dr. Turja basically glanced at my chart and said the same thing my onc. here had said-- start Gemzar and Xeloda immediately, and stay on them for the rest of my (short) life. I was out the door by 10 a.m., after being told to bring clothes for three days. They told me PDT, ablation, and any other chemo drugs "were not proven effective" and when I asked if my case might not be unusual given that, after five years, I STILL only have one tumor, Dr. Turja said, "Yes, that happens sometimes, but then they start growing really fast." Gee, thanks!

When I got back home to KY, a doctor and a nurse (friends of mine) leaped into action and got me an appointment with oncologist here who used to be a professor at the University of Kentucky med school. He is WONDERFUL! He is the first oncologist I've ever had who doesn't act disappointed that my cancer isn't behaving the way it's "supposed" to, and actually listens to what I say.

He agreed with me that we should first find out just how fast the tumor is growing before deciding on treatment, so I had a new CAT scan, and guess what-- the tumor hasn't grown any more in ten weeks! So his plan now is to give me blood tests every 4 weeks (my liver enzymes are OK and  CA19-9 is now 3... yes, THREE) and a scan every three months, and not to start chemo unless it starts growing at a rate that concerns him. Finally some empathy and common sense!!

Sorry this is so long-winded, but I just want to underscore what Jeff and others have said so many times-- get a second opinion, and a third, and keep on until you find someone who cares about you. And even if a doctor is some whiz-bang at Mayo or MD Anderson, if they don't listen to what you're saying, KEEP LOOKING.

Thank you all so much for encouraging me in this! Wishing you all the very best.

Kristin

Peace, hope, and healing to all!

Re: After Mayo, a third opinion

You go girl!  This is the kind of story I like to wake up to!!!!!!!!!!!!!!!!!

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: After Mayo, a third opinion

Way to go Kristin!  You are very fortunate to have a doctor that truly listens to you and then try to figure things out together.  I think so many doctors just don't get it.  Congratulations!
Karen

Wishing all God's blessings!

Re: After Mayo, a third opinion

That's what i'm talking about Kristin!  Know where you stand and your body before jumping in with full steam ahead. Lovely!
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: After Mayo, a third opinion

My wife also saw Dr. Alberts at Mayo. He is tremnedously experienced and used to work with Native Americans who are the highest risk for cholangiocarcinoma. Did he discuss with you the liver transplant protocol the Mayo (Dr. Steven Rosen) has pioneered? I posted info on that protocol separately. You may want to send your scans to Dr. William C. Chapman at Barnes-Jewish Hospital in St. Louis, MO. He is also doing it and it may have as much as an 80% cure rate. I also strongly suggest that you contact the University of Utah, Northwestern Uuniversity and Dr. Andrew Kennedy at Wake Oncology in Cary, NC. Dr. Kennedy destroyed my wife's Klatskin tumor in a 2 hour outpatient procedure using Y-90 microspheres. Unfortunately Valerie's cancer had metastasized to her peritoneum by the time we found Dr. Kenedy. Good luck. Call me if you want to talk. 808-753-0290. I am in Honolulu.

Re: After Mayo, a third opinion

I'm glad you had such positive experiences, but essentially the doctors at Mayo told me there was nothing special they could do for me, and showed me to the door. I am quite pleased with my new local oncologist, as I mentioned above, and I believe my case is somewhat unusual in that I am still feeling quite well 5 years into this and am not currently in need of any treatment. In fact I ran my usual six miles just yesterday.

I'm sure your information will be useful for many people, and I really appreciate your posting it.

Kristin

Peace, hope, and healing to all!

7 (edited by wayne Tue, 21 Oct 2008 11:07:35)

Re: After Mayo, a third opinion

I am really glad that you are doing well. You do havean unusual form of cholangiocarcinoma. I wonder if the cell type in the biopsy is indeed adenocarcinoma. I corresponded with a gentleman last year who was diagnosed with BDC and then found out later to not have the disease. Anyway, enjoy life and one thing that Valerie and I learned was that if you don't need treatment it is best not to disturb the body. Good luck and if you ever need anything please feel free to call or write.

Re: After Mayo, a third opinion

Wayne,
What was it that the gentlemen had? I'm just curious because my husband's initial biopsy did say that it was nonspecific. Not quite sure what that meant but everyone involved in his treatment said it was cancer.My husband actually underwent the entire Mayo protocol but at Ohio State as his treatment. He also had brachytherapy.He is cancer free as far as they can tell 2 years after all of his treatments. He is very rare also.

Re: After Mayo, a third opinion

I do not know what the final diagnosis was. He may have told me in an email but it is buried in a huge set of emails. If I find it I'll let you know.

When was your husband treated at Ohio State? Was it part of a clinical trial or data collection study? Who was the main doctor? Was it the Mayo liver transplant protocol? And was the brachytherapy used against the bile duct tumor? Was it chemo or the radioactive microspheres?

Your husband's story is significant. As you can see from the various Forums here at chlangiocarcinoma.org, most people are put on palliative chemo and left to die. Recently diagnosed patients should immediately get brachytherapy and then try to get into a transplant program. I am interested in whether the Ohio State doctors are going to publish anything on this treatment? These results will also help with insurance coverage.

Re: After Mayo, a third opinion

Kristin,  I am new to this forum and so happy to read about how you're doing.  I actually started to cry because it gave me hope.

My husband has CC and I actually asked his oncologist to call the mayo clinic about my husband to see what they could offer him.  So I guess I shouldn't be surprised that he said they didn't have anything to help. 

We will be meeting with a new oncologist on the 3rd because the one we have now is a joke.  Based on his comments to me, I know he's just going through the motions and that's not acceptable.   

For those of us that don't know...please tell us your story.  When were you diagnosised and what kind of treatment have you had and anything alternative you are doing. You are an inspiration--I need to know how to get my husband to 5 years.

Thanks

I miss you more and more everyday. 
RFL 6/28/58-12/27/08

Re: After Mayo, a third opinion

Hi Luluu,

I'm so glad my post was hopeful for you! Instead of typing the whole long story, here is my introduction that I wrote when I joined the boards last February:

http://www.cholangiocarcinoma.org/punbb … 6393#p6393

One thing you'll find as you read these boards is that every case is really, really different, in its ups and downs and how fast it progresses. I think I've been really lucky, but I've also done EVERYTHING I can think of to help myself-- healthy mostly-vegetarian diet, exercise six days a week, lots of supplements especially milk thistle and ginseng, acupuncture every week, energy healing every week, daily meditation, and plenty of positive thoughts. It sounds like a lot of work, but it's all things that make you feel great anyway, even if you don't have cancer!

And definitely keep looking until you find an oncologist that matches your personal philosophy. It makes all the difference in the world, knowing that you've got someone who understands by your side. I wish I had dumped my old one, "Dr. Gloom," two years ago!

My very best wishes to you and your husband (he's sooo lucky to have you!)

Kristin

Peace, hope, and healing to all!