Topic: New here

Hi, my name is Joanna. I would like to implore anyone diagnosed to get a 2nd, 3rd, and even 4th opinion about treatment options...I am convinced my 2nd opinion saved my life. I am 47 years old and was diagnosed in April. I didn't have any symptoms but could feel a hard mass in my upper right abdominal area so I convinced my doctor (who thought it was nothing) to send me for an ultrasound, which showed a 10 cm tumor.  Many tests and a biopsy later, it was diagnosed as cholangiocarcinoma.  It originated in the internal ducts of my liver.  The MRI results seemed to indicate that the tumor was contained in my left lobe, so surgery was scheduled for 2 days after my diagnosis at Hartford Hospital.  When they did the laproscopic look first, however, they realized it was not contained but had spread to a large part of my liver and was covering the hepatic artery.  I awoke out of anesthesia to the news they couldn't operate and to a surgical resident telling me it was "terminal."  You can imagine what that did to me.  He got reamed out by the chief surgeon, but she gave me less than a 10 percent chance of it shrinking enough with chemo. to ever be resected or cured.  When I asked if it was possible to live 10 years so I could raise my kids ( I have 9 year old twins), she said no.  I went into a pretty dark place for awhile, but then things took an amazing turn for me.  My oncologist in Hartford asked if I would go to Mass General to meet with his brother, who is a radiation oncologist leading a clinical research study on cholangiocarcinoma in conjunction with Dana Farber. The study involves using proton beams on the cancer instead of photon beams, which is supposed to help save more of the healthy tissue. Of course I jumped at the chance and we went to Boston and met with him (Dr. Ted Hong) and Dr. Eunice Kwak, who is leading a clinical trial in chemotherapy.  Luckily I qualified for both and began chemotherapy every two weeks in Boston.  The trial is studying the effects of adding the drug Panitumumab to the drugs Gemzar and Oxaliplatin as treatments.  After two chemo. sessions I could no longer feel the mass.  My first CAT scan, after the 4th chemo. dose, showed significant shrinkage, as did my 2nd CAT scan.  I met with both doctors after that scan, and they felt that after two or three more chemo. treatments they would try to kill the rest with radiation.  They also said they were going to run my latest scan by their surgeon to get his thoughts.  Well, he called me as soon as he saw it and asked for a meeting.  We drove up on Wednesday and met with Dr. David Berger.  He said the tumor is no longer on the artery and based on what he sees he believes he can surgically remove it!  My surgery is tentatively scheduled for the 4th of September.  They are just trying to make sure that if he finds anything in the laproscopic look they do first that would make him change his mind, I am not kicked out of the study...they have a strict protocol of time frames they have to follow for chemo. and I am not having mine next week in order to prepare for surgery.  But he also said that if he couldn't do it now, he is confident it will be at that point after some radiation.  He really feels, though, that based on what he sees on my scans, it is resectable now!  Less than 5 months after being told I was terminal.  Please don't give up hope...I did for awhile and it was a place I never want to be again.  During this time a co-worker of mine, who is a cancer survivor, taught me the power of positive thinking on the body.  I believe that helped me as much as the chemo.
Go wherever you need to go, find whatever trial you can, but don't give up.  I can't recommend Mass General highly enough for anybody who lives in the East!  Please say a little prayer for me that my surgery will be successful on the 4th.   I'll update you then.
Keep fighting the good fight everyone!
Fondly,
Joanna

Re: New here

Hi Joanna,
Sorry to meet you this way.  I know how you feel, I'm 46 going on 47 with 2 young kids(10,12).  If I could have 10 more years......

I was dx last oct and had resection nov. with clean margin and no nodes recomm no further treatment at the time.  I asked many onc about chemo or radiation but most of them said no since there's no data supports it.  So I decided not do it.  I got my regular 3 months ct and blood works.  CT was clear but my ca19-9 was rising slowly and was a little concerned but again since nothing on CT they wanted to wait. Well my last CT (July) showed a recurrence and having pain on my right side where a new tumor is...
So long waited chemo finally started today.  It was not as bad as I expected (knock on wood) hopefully this would get rid of stinking tumor. 

Joanna, hoping for sucessful resection and hope to hear more good news.
Let's do it together for our young ones :-)

Re: New here

Joanna....I would like to follow LeeAnn and welcome you to our site.  Like you I believe in 2nd, third, or even 4th opinions when diagnosed with this cancer.  Specialists disagree with their approaches and one would want to make sure to exhaust all options available. 
The shrinkage of the tumor is remarkable and I  am thrilled to hear that you are offered  the possibility of a resection.   
I believe that this is the study you are enrolled in:
http://clinicaltrials.gov/ct2/show/NCT01308840
To qualify one must have the KRAS mutation. How are you handling the side effects, if any?

Thank you for joining our site and sharing your inspiring story with us.  I wish for continued success with the clinical trial and am sending tons of good wishes your way. Please, stay with us.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New here

Welcome Joanna! What a wonderful post! I will send positive thoughts, pray and whatever else I can do on September 4th! You are right, we always have to live with hope and enjoy each and every day. Take care. Nancy

Loving my husband from afar.

Re: New here

Joanna....What a great post....I'm also a firm believer in multiple opinions, as it was a second opinion which made me a candidiate for surgery after being told I was not and would never be...I've been in that dark place too and much prefer being in the light....lets stay there! Prayers that your surgery is a total success and a speedy recovery for you!
Nancy

Re: New here

Joanna, this sounds really good! You're going to make this.
I found out the same way you did, felt a hard mass in my abdomen. 10 cm tumor but also 10 small ones spread all over, therefore no surgery.
This was april-2010. I was 43 then.
Since that I've had 37 rounds of chemo, gemOx, Gemzar+Xeloda and GemCis. I also did 6 chemoembolizations.
I still work and live a normal life. Ran marathon now this june, andtwo halfmarathons these past two years. So I can't say i'm a bit sick really.
The treatments are harsh but I have no signs of cancer (if you don't look at the scans).
I'm SURE that everything is possible, but it is a war where you have to be smart, smarter then cancer.
I have since dx done everything in my power to support my body in this war, so it won't leave space to tumors, and to tolerate the treatments. Mentally, physically, spiritually, food, herbs, in every way possible.
Hugs!
Maria

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: New here

Hi Joanna,

Welcome, and thank you for this uplifting post.

Many of us fighting this cancer have the learned the importance of multiple opinions, and your story helps to affirm that for us once again. Like you, I am here to continue the fight because a second opinion gave me a chance for a resection...two actually. We found an aggressive surgeon with the skills to back it up.

Later, before I started adjuvant therapy, I actually started an email thread where my team (my oncologist, two radiation oncologists, my hepatologist, and my surgeon) discussed...and sometimes argued...about the best course of action. There were multiple opinions, and eventually some consensus. Still, I had to make a final decision about a course of action, but now had much more information to make that decision.

So you are doing this just right. Congratulations on the new surgery date, and I will pray for a good outcome and more good news!

All the best, Mark

Re: New here

Thanks for the replies.  I am sorry to see so many going through this, too.  LeeAnn I am so sorry yours came back.  But as you said, we will fight this for our little ones.  You will be in my thoughts and prayers.  Can I ask, how was the surgery and recovery?  Did they make an L-shaped incision? The surgeon kept stressing it would be a large incision and the recovery would be taxing.  But honestly, I am looking forward to it!!

When I first started my fight, a co-worker shared her story with me.  25 years ago she had breast cancer that spread to her liver and her prognosis was poor.  She had young kids at the time and decided there was no way she was going anywhere.  She believes strongly in the mind-body connections and feels she helped cure herself with positive thinking, visualization, meditation, and prayer.  I have been working hard at each of those and I think it does help.  I visualize my tumor shrinking every night, and visualize my white blood cells being made like popcorn!  They have actually called me their "rock star of blood counts" because mine have never gone down.  Who knows if it is from the visualization or not, but it couldn't hurt and makes me feel better...at least makes me feel like I can control something!  She also bought me some books and CDs by Bernie Siegel...former surgeon who is now a strong believer in the power of the mind to cure.  I listen to the CDs while having chemo.  I also switched to a high Omega-3 diet that another cancer patient had told me about.  When I ran it by the nutritionist at Mass General she was in favor of most of it.  I have given up dairy, red meat except for grass-fed beef (high in omega-3, low in omega-6), no sugar (well, okay, sometimes sugar...I can't help it!) and lots of greens and fish.  Again, who knows if it has helped but something did. 

Marions, I think that is the same study I am in, but I wasn't aware Rochester was a part of it.  In order to qualify, my tumor had to have KRAS Wild-type protein, which about 60% do.  It can't have any mutations.  There were a lot of other criteria...couldn't have spread to any nodes or anywhere else, couldn't have more than 2 tumors, etc.  I just am so thankful  I am a wild-type!  Lol

Well, sorry my first two posts have been so long...it is just great to communicate with people who know what I am going through.  My husband is great and tries to get it, but how can he?

I will be more brief in the future, I promise!

Joanna

Re: New here

Oh, and as far as the side effects from the 3 drugs, well the panitumamab causes a horrible, acne-like rash on my face and chest because the skin there has the same kind of protein as the tumor, I think.  Something like that, anyway.  I am on antibiotics and an antibiotic cream but still look like some of the 8th graders I teach.  The Oxilaplatin causes an extreme sensitivity to cold...have to wear gloves just to take something out of the fridge and forget even going into the freezer.  I hate it because I can't drink anything cold and room-temperature water just doesn't do it for me.  Gemzar has made my hair thin...but other than that I haven't had anything bad.  Tired, but functional!

Re: New here

Joanna....thanks much.  Your side effects are not much different from those already reported by others except of course the facial issue.  You sound good.
And, dear Joanna, don't worry about the length of the posting - you have much to say and we have much interest in reading it. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New here

Hey Joanna,
I would love to share my experience with you.  Call me if you can #773 517 2810

Re: New here

Hi again Joanna:

Don't worry about the long posts. This is a great place to share your experiences, and it helps those of us reading as well.

Yes, we do it for our loved ones. I am 52 with three stepsons in the house. My initial sadness was that I might no longer have the privilege and joy of loving and supporting my family. Quickly, that became my motivation to fight.

Regarding the surgery, yes you will have a big new zipper. The size will depend somewhat on what they will be doing. It may go from just below your sternum and follow the the curve of the right side your rib cage around to your side. It may also travel a bit along the bottom of your left rib cage, but just a bit, making a sort of lopsided chevron pattern.

Your recovery will depend on the length and complexity of the surgery. My first one was very complicated and took 12 hours. Recovery from that took a considerable amount of time. I spent 3 days in ICU, 8 days total in the hospital, and about a month recovering at home (taking short walks and so forth). The second was about 6 hours. I spent only 18 hours in ICU, about 6 days total in the hospital, and was up and about and back to my routine MUCH more quickly.

Even with the challenges, this is indeed something to look forward to! Surgery provides the best opportunity for a good outcome. I remember waking up in ICU after the first surgery, and when my eyes could finally focus I looked up at the clock. It said 12:00....but was it noon or midnight? If it was noon, it meant they couldn't complete the surgery. If it was midnight, it meant they did what they had hoped. I couldn't really move or look around, but after a few minutes from behind me I heard a nurse say, "We'll be with you all night." I was overjoyed!

Best, Mark

Re: New here

LeeAnn I will definitely call you to hear your story.  Thanks so much!

Mark, I had the opposite experience in April.  When I awoke and looked at the clock, I realized less than 2 hours had passed and knew they couldn't do the surgery.  I'm hoping the 2nd time is the charm!  Thanks for the info. on the procedure.  My pre-op isn't until Thursday, but I pretty much knew it would be a huge incision.  I'm fine with that...my bikini days were over in the 80s!  The surgeon kept stressing that the recovery would be hard but that he wasn't trying to scare me.  I had to tell him that once you are told you aren't going to live to see your kids grow up, nothing else can really scare you, now can it?  I am so glad it worked out for you.
It is so hard to read about how often this cancer reoccurs.  Is there anybody out there that remains cancer-free after a resection?  I hope so.  I know that this isn't really the end, that I will have to keep having chemo for awhile after and frequent CAT scans, but I love to dream that someday it won't have to be in the back of my mind all day, every day.
I do know that I am one of the lucky ones, so that is what I hold onto.!

Joanna

Re: New here

Joanna....yes, there are people without recurring disease, post resection, and several had visited our site - few stay on.  But for those actively involved our Gary, Sue, Betsy, come to mind.  There are others also who have moved on with their lives and away from this discussion board.  There is no magic wand - no one can foresee the future - therefore, I want to stay positive and believe that everyone has a shot at a cure.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New here

Hi Joanna,

Like others, I want to welcome you to the site. Sorry that you had to find us. I think you have a great attitude and that's a big part of the battle.

My wife is about your age - she is the one with CC. She fell sick in April 2011, just a few days after turning 44. She is 45 now. Our daughter is 13.

My wife had her big surgery (Whipple) in July 2011. She did 2 months of chemo-radiation after surgery, followed by 4 months of chemo. From my caregiver's point of view, the recovery from the surgery wasn't the hardest part of the journey. Radiation and chemo were more challenging in many respects. My wife seems to be in agreement - I asked!

As Marion said, we do have members who remain in remission for years after a resection. Bob seems to be our champion. He was 15 years cancer free as of December 2011. Here's the link to his 15 years anniversary post:

http://www.cholangiocarcinoma.org/punbb … hp?id=7423

Joanna, I wish you best of luck with the surgery and a speedy recovery.

- Eli

Re: New here

Great post Joanna!  I appreciate your story.  My father was diagnosed in May.  He is currently in a clinical trial at U of M.  As of last scan cancer has reacted to chemo!  YAY!  We are in the process of getting other "plans" in place.  We're not giving up and will fight this disease with all of our might.  I shared your story with my siblings.  Thank you again for your positive and touching story.  Praying for you!

:-))
Suzy

Re: New here

Dear Joanna, welcome to our remarkable family but sorry you had to join us. I just returned from a short trip but wanted to welcome you. I also want to wish you best of luck on the fourth and pray for God to work through the surgeons hands. Your attitude is already the best so I can only repeat ....be strong! We will all be cheering on the 4th.

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: New here

Joanna-Welcome and sorry you had to find us. I am a CC survivor, 3 years and 2 months cancer free. I have an amazing story to share, I keep it posted on my FB page (Catherine Sims Dunnagan). I had my miracle happen at Barnes-Jewish Hospital in St. Louis MO. by Dr. William Chapman. I am a live because of God, 2 strangers and Dr. William Chapman. I was diagnosed July 30,2008 and was given 6-8 months to live and my only HOPE was a transplant.
Joanna, I was blessed because I was diagnosed by one of the best who knew my only HOPE was Dr. Chapman and didn't have to go  through all the bad doctor and illerate doctor nonsense.
Please call (618-567-3247) or email if I can help. I am living proof there is HOPE!!
Lots of prayers-Cathy