• From: Wakefield, MA USA
  • Registered: Thu, 01 Nov 2012
  • Posts: 27

Topic: Unresectable to Resectable?

Hello,

My name is Nikki and my father (age 57) was diagnosed with a Klatskim tumor (4 cm) back in September.  In October he had surgery, but was told that because the tumor was wrapped around the hepatic artery, they could not safely remove it.  He is starting a clinical trial next week at Dana Farber.  The clinical trial is the use of Gemcitabine, Oxaliplantin and Panitumumab.  We are praying that the tumor detaches itself from the artery, so it can be resected.

I wanted to know if anyone was initially told they were unresectable, but then was able to have surgery because of good results from chemo/radiation.

Thank you!
Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,227

Re: Unresectable to Resectable?

Oh, yes Nikki.  We do have Miracles here and I am sure some of them will answer your question in more detail. Always HAVE HOPE and BE STRONG! Here's to detachment in the best of ways!

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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Unresectable to Resectable?

Nikki....agree with Lainy, we do have patients responding well to chemo and they then go on to surgery.  Panitumumab sounds very promising and I am crossing my fingers for your father to show the favorable results we all hope for.
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
  • From: Wakefield, MA USA
  • Registered: Thu, 01 Nov 2012
  • Posts: 27

Re: Unresectable to Resectable?

Thank you both so much!  That's all we need to hear is that there have been people that have gone from unresectable to resectable.  If we keep that as our goal and keep praying everyday, I am sure we will get there! 

My dad's records are with Dr. Kato, Dr. Sonnenday and Dr. Chapman.  If he has promising results from chemo, then we are at a head start having my dad's case already in their very capable hands.

Marion - I am excited about Panitumumab.  It is the first fully human anti-EGFR monoclonal antibody.  The phase II trial is full (we got the last spot), so I'm sure that people have been having positive results. 

Praying like crazy for detachment!  First treatment is on Tuesday.

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs
  • From: Revelstoke BC
  • Registered: Sat, 01 Jan 2011
  • Posts: 552

Re: Unresectable to Resectable?

Nikki,  Your dad is in the hands of the best of the best! Sending postive thoughts for a great result with the chemo. Keep us posted. smile Nancy

Loving my husband from afar.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,841

Re: Unresectable to Resectable?

Hi Nikki,

As Nancy has said to you, your dad is in good hands. And I will be keeping my fingers crossed for the best possible results for your dad with this trial that he starts next week. Please let us know how he gets on with it. And yes for sure, we have seen patients who have been told no to surgery that then go on to have surgery after having chemo or other treatments. So please, stay strong, stay positive and certainly do not give up hope at all!! We are here for you.

My best wishes to you and your dad,

Gavin

  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 682

Re: Unresectable to Resectable?

Sounds like you have the triple threat of doctors there! From what I've read on this site about all those doctors, your father is in excellent hands.

I'll be looking for good posts about your father's response to the chemo regime. 

Hang in there!
-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Wakefield, MA USA
  • Registered: Thu, 01 Nov 2012
  • Posts: 27

Re: Unresectable to Resectable?

Just wanted to give an update on my dad.  My dad went in for his first round of chemo at Dana Farber this past Tuesday.  He is on a clinical trial which combines Panitumumab with Cisplatin/Gemcitabine.  On Tuesday he only received the Cisplatin/Gemcitabine (4.5 hour infusion) because we are waiting for the results of his biopsy.  He cannot have any mutations to the KRAS wild-type gene in order to stay on the trial.  My dad had been in pain since he was diagnosed in September and since he received chemo on Tuesday, he has not been in any pain at all!  It seems almost silly to think the chemo has already helped control his pain, but that is the only new regiment he's added into his routine since he was diagnosed!  He is tired and slightly nauseous, but he said he would take that any day over the pain he was experiencing.   

He recently got a CT scan and it showed no growth of the tumor since his very first CT scan in September.  This is great news since the only treatments he was doing up until this week were natural - accupuncture and Ton Reng Healing.  He is an amazingly strong man and I know he is going to make his was to surgery and into the cancer free zone!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,227

Re: Unresectable to Resectable?

Nikki, this is all very good news. Your Dad should ask for something for Nausea and perhaps something for pain should it return. We sure don't like to see our family here suffering. Wishing for your Dad to keep up his good progress and many thanks for keeping us posted. Hoping for more good news next time!

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.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,841

Re: Unresectable to Resectable?

Hi Nikki,

Thanks for letting us know how your dad is doing and that is great that his pain has gone and that he has started his chemo. Like Lainy says, something for your dads nausea would be of help to him here and there are tons of types and combo's of meds that would be of use to him here.

I hope that his chemo goes well for him and works very well indeed. Please let us know how things go and my fingers are crossed for your dad here.

Best wishes to you and your dad,

Gavin

  • From: Wakefield, MA USA
  • Registered: Thu, 01 Nov 2012
  • Posts: 27

Re: Unresectable to Resectable?

We found out yesterday that my dad did not have a mutation to the KRAS wild-type gene so he is officially on the trial and as I type this is receiving Gemcitabine, Oxaliplantin and Panitumumab.  It's a long day for us here at Dana Farber.  We arrived at 7 AM and will not leave until 3:30.  We are lucky that we live so close to Boston.  The first treatment was two weeks ago and the next day my dad's pain that he had been experiencing was completely gone.  We assumed there was no way the chemo would work that quickly, but it was confirmed by Dr. Abrams and Phelps this morning that it is a sign that my dad is responding.  This is such great news for us!

About a 1/2 hour after I received the call that my dad officially got the last spot on the trial, we received our long awaited call from Dr. Kato.  He has reviewed my dad's records and is confident he can remove his tumor.  This is so great to hear since we had an unsuccessful attempt at Beth Israel in Boston.  We are meeting with Dr. Kato in January.  It is definately nerve racking because you wonder why three surgeons say no and then the 4th says yes.  You ask yourself, why is Dr. Kato confident and others not?  We were not thrilled this morning when meeting with the Doctors because they weren't very excited  about the news about us meeting with Dr. Kato.  They warned us of the high reoccurence rate and said we need to weigh the pros and cons of surgery.  Our thoughts right now are get it resected if at all possible.  Trying to stay positive!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,227

Re: Unresectable to Resectable?

Nikki, I just posted on your other post today so won't repeat except to tell you that Dr. Kato is very aggressive and will go where others fear to venture. He has a most excellent reputation! Relax and enjoy your Holidays with this upcoming gift!

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.
  • From: Wakefield, MA USA
  • Registered: Thu, 01 Nov 2012
  • Posts: 27

Re: Unresectable to Resectable?

Thank you Lainy!  We are lucky to have found Dr. Kato's name and it's all because of this wonderful board and it's wonderful members!  I hope you and your family enjoy the holidays as well!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

14 Reply by PCL1029 (edited by PCL1029 Wed, 12 Dec 2012 10:43:25)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: Unresectable to Resectable?

Hi,

Congratulation!

Three things you should know if you want to,;Remember I am not a doctor but a patient.

1. Call Dr. Kato  and ask when your father should stop current chemotherapy before his surgery. This way you will not waste valuable  time to wait for additional chemotherapy-free days before surgery.
2. Be very hopeful but guard against being too optimistic ; pray hard and earnest to God for his Grace upon your father  even  you are in good hands with Dr. Kato. Yes, recurrence is high( >50%) but surgery is the ONLY possible cure for this disease. I am a patient myself,and I am happy that my recurrence last year can be removed by 2nd surgery .
3. The clinical trial--- Panitumumab with Cisplatin/Gemcitabine is not easy to take,the side effect from the panitumumab  is especially hard on the face and  skin of the body even your dad is only 57 years old.
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.

15 Reply by marions (edited by marions Wed, 12 Dec 2012 14:09:20)

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Unresectable to Resectable?

Nikkie, Congratulations on all fronts; the enrollment in the trial and the upcoming visit with Dr. Kato.   

As a research advocate for clinical trials one of the most important issues I address is the safety of patients.  Hence I would like to share a few thoughts which should have been addressed by the trial coordinator.

Panitumumab underwent a phase 3 study with KRAS mutation-positive patients.  This study proved KRAS mutant patients ineligible for this particular drug.  Your Dad does not have this specific mutation hence he is eligible to enter this trial. 
I would assume that side effects are closely watched and your informed consent had been explained in detail to you.  Just in case though, I would like to add a few comments:
Dermatologic toxicities occurred in 90% of patients and were severe in 16% of this patient group.  Given the time of year, sunlight exposure may not be much of an issue however; avoiding UV as much as possible may help reduce some of the expected dermatologic toxicities.
Additionally your Dad’s electrolytes should be periodically monitored during and for 8 weeks after the completion of the trial.  And, staying hydrated is of utmost importance.  It will be helpful to watch closely your Dad’s fluid intake by making notes of the amount consumed.  Gatorade (this is unofficial) has shown to help reduce the electrolyte issues with many of our patients.

Personally I believe that skillful surgeons practice a combination of art and science.  Given the complexity of biliary resection some physicians don’t have the expertise, the skill, or they prefer to err on the side of caution whereas others lean heavily toward an aggressive approach.  Hence it is important to find a doctor who based on his/her background aligns with the patient’s personal desire of treatment. 
Unlike clinical trials which provide us with concrete clinical findings, outcome of successful surgeries and desired cure of the disease (or overall survival) are vague at best and disputable at most.
You are doing everything right, dear Nikki in that you are acquiring the knowledge in order to make an educated decision regarding the treatment of your dear Dad.
Good luck and please keep us posted.
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
  • From: Wakefield, MA USA
  • Registered: Thu, 01 Nov 2012
  • Posts: 27

Re: Unresectable to Resectable?

Update:

I had to rush my dad to the ER on Wednesday.  This was the day after his 2nd round of chemo.  He had chills, a fever and was vomiting.  He is still in the hospital with an infection most likely from the metal stent that was placed on Thursday.  He had the metal stent removed and the plastic ones put back in yesteryday afternoon.  The metal stent seemed to be causing the gallbaldder to inflame, most likely because it was pushing it closed.  It seems to be too large for his bile ducts.  His temperature is down this morning.  He is on multiple IV antibiotics for the infection.  He is pushing through! 

Now for the good news...Dr. Abrams came by to see him last night and took a look at his CT scan and said that the 1st round of chemo has significantly shrunk his tumor!  We were all shocked (including Dr. Abrams).  One treatment.  It's amazing.  And the 1st round didn't even have the trial drug in it, so going forward the infusion could be even more effective.  If he continues on this road, he might not even need the surgery and could kill it with chemo and then radiation.  We feel so blessed even though he is so ill right now!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,227

Re: Unresectable to Resectable?

Yea, Nikki. There is something in the air this December and we should bottle it for the future. I have never seen so many great posts on our CC members, ever. I think it shows that we are getting new and improved treatments all the time. I hope your Dad is feeling much better real soon!

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.
  • From: Wakefield, MA USA
  • Registered: Thu, 01 Nov 2012
  • Posts: 27

Re: Unresectable to Resectable?

Marion - thank you for your insight.  Yes, he was placed on minocycline for the possibility that his skin breaks out.  It's only been a few days since receiving Panitumumab, but he hasn't broke out thus far.  I am going to tell him about drinking gatorade.  That is a great suggestion!  The least we are going to do is meet face to face with Dr. Kato.  We need to weigh our decisions and what the best approach is.  Surgery immediately?  Receive more chemo before surgery?  Try to kill the tumor with just chemo?  These are all very difficult decisions, but the more Dr.'s we meet with the better information we will have to make the right choice.  It is so unbelieveably overwhelming! 

PCL1029 - although everyone fear reoccurrence, I am truly happy for you that you are able to have surgery the 2nd time around.  That is wonderful, wonderful news!  I wish I knew how many successful surgeries for cholangiocarcinoma Dr. Kato has performed.  I'm assuming he will answer that questions when we meet with him in January.  It's hard to tell how my dad reacted to Panitumumab because as you may have saw from my last post, he ended up in the ER with an infection the day after infusion.  Do you mind telling me when you were diagnosed, when you had surgery and how long you went before reoccurrence?  Thank you for your response...the more people I hear from the better I feel!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Unresectable to Resectable?

Nikki...good to hear that the cause of the problem has been identified and has been rectified with insertion of the correct stent.  I must emphasize "correct" stent because; I believe this was an avoidable physician error.
The overwhelming good news thought is your Dad's response to the GEM/OX regimen and the overall positive outlook for the future.
Wishing for a quick recovery from the infection and for all good things to continue.
Happy, happy, Holidays.
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

20 Reply by PCL1029 (edited by PCL1029 Sat, 15 Dec 2012 12:23:28)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: Unresectable to Resectable?

Hi,

plesae see the link below and remember each patient is different in its own way due to the disease state is different;therefore the comparison should be of little value but helpful to understand this disease.

http://www.cholangiocarcinoma.org/punbb … 400#p45400


http://www.cholangiocarcinoma.org/punbb … 844#p68844

And this my personal opinions only, every treatment is not 100% proof, the only way to get the best educational  guess is through learning about this disease .
Good luck in choosing ,and you are the very few the God give you so many choices.
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.

21 Reply by PCL1029 (edited by PCL1029 Sat, 15 Dec 2012 12:11:51)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: Unresectable to Resectable?

Hi,

For chemotherapy and targeted therapy, please see the link below;

You don't need to read the whole thing, but just pay attention to the commends by the up-to-date.com literature review board and the most recent commends by the oncologist Dr. Horgan at the ASCO2012; that will give you some ideas about the efficacy of the chemotherapy and targeted therapies.
both commends are near the END of the whole message.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

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.