Unresectable to Resectable?

Discussion Board Forums General Discussion Unresectable to Resectable?

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  • #66475
    pcl1029
    Member

    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/viewtopic.php?pid=57198#p57198

    God bless.

    #66474
    pcl1029
    Member

    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/viewtopic.php?pid=45400#p45400

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=68844#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.

    #66473
    marions
    Moderator

    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

    #66472
    nikki4470
    Participant

    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!

    #66471
    lainy
    Participant

    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!

    #66470
    nikki4470
    Participant

    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!

    #66469
    marions
    Moderator

    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

    #66468
    pcl1029
    Member

    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.

    #66467
    nikki4470
    Participant

    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!

    #66466
    lainy
    Participant

    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!

    #66465
    nikki4470
    Participant

    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!

    #66464
    gavin
    Moderator

    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

    #66463
    lainy
    Participant

    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!

    #66462
    nikki4470
    Participant

    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!

    #66461
    Randi
    Participant

    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-

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