pcl1029

Forum Replies Created

Viewing 15 posts - 106 through 120 (of 1,667 total)
  • Author
    Posts
  • in reply to: New Diagnosed #77931
    pcl1029
    Member

    Hi,

    the following link may be of help if interested.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7843

    God bless.

    in reply to: Nausea and Vomitting #77903
    pcl1029
    Member

    Hi,Michele,

    Common more potent antiemetics are as the following;

    1. 5-HT3 receptor antagonist group- ondansertron (Zofran), dolasetron(Anzemet), granisertron (Kytril) are the first generation and palonosetron(Aloxi) is the second generation of 5-HT3 receptor antagonist.
    2. the NK1 receptor antagonist like aprepitant (Emend) and others on the market are newer than the 5-HT3 receptor antagonists;they come as an oral capsule or tablet and injectable dosage form(fosaprepitant).Emend has to be taken with other antiemetics and on schedule for the maximum anti -nausea/vomiting control.

    God bless.

    pcl1029
    Member

    Hi, everyone,
    I have added my experience of Tarceva on the list of “systemic chemotherapy”

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198

    God bless.

    in reply to: A query about recurrence rate? #77861
    pcl1029
    Member

    Hi,
    The recurrence rate is about 50-80% with the ICC on the high side of the range; extrahepatic CCA will be on the lower side of the range.

    I believe when most of us diagnosed of CCA, the tumor had been there for quite a while.(ie: 2-3 years without symptoms in my case and the size is 6×5.5cm ,already stage III by the current new ICCA standard.)

    I believe CCA is a slow growing cancer,in my case it grew from 2.5cmx2cm to 3.5-3cm in approximately 10-12 months for the 2nd recurrence roughly 20-22months after the 1st resection..The third recurrence again was 18-22 months after the 2nd recurrence. Both with adjuvant chemotherapy to follow for about 10-14 months.Therefore the growing rate should be the same before and after resections for the same person.

    I do believe chemotherapy and targeted therapy and other options that currently available are all palliative in nature;even resections-the so call possible cure.
    I believe chemotherapy is the most unfriendly treatment choice of them all;a lot of GI side effects which most of us spending a lot of time on the discussion ,but few,if any, mention cardiac ,neurological and kidney toxicity accumulation overtime.

    I believe the longer a patient on treatments, the weaker the patient’s health defense will become due to the toxicity of the medications and the damage of the procedures (ie; resections, stent insertion,RFA ,and IMRT etc.)done to the body.Complementary and alternative treatments may help to relieve the symptoms and increase the quality of life to a certain extend.

    To sum it up, CCA is definitely a chronic disease if the patient is lucky enough to discover it earlier before any symptoms showing up.

    God bless.

    in reply to: New to the Site #73677
    pcl1029
    Member

    Hi,
    Just to let people know also, I believe Dr.. Fong is among the only few doctors to continue using the FUDR pump.

    God bless.

    in reply to: New to the Site #73672
    pcl1029
    Member

    Hi, Sandy,

    If the time line was correct, that is from June 24 started to use FUDR pump and alternate with GEMOX and get 70% reduction on the Oct follow-up CT scan; that was a good progress in just 3 mnoths.
    Then from Oct to about 3 weeks ago (middle of Nov.);In about just a month’s time,development like you described,–“She was beyond shocked to have found a second NEW tumor of good size in the liver and a lesion on the bone on his lowest left rib. She prescribed a PET Scan next week, and an appointment with a Radiologist December 18th to begin Radiation treatment.” It looks like the oncologist pretty much thought that the chemotherapy will no longer works, and depends of the PET scan result, they will use radiation like IMRT or SBRT for continuing treatment. If so, can you also ask them to provide a 2nd opinion on interventional radiologist (IR) for consult for chemoembo or radioembo possibilities.
    Please mention to your oncologist if possible for her to prescribe targeted therapy agents like Tarceva or sorafenib .even though the tumor is unresectable.
    Ask or insist the oncologist to recommend you for a clinical trial in your area . NCCN actually encourage patients to go through clinical trial for unresectable cholangiocarcinoma.
    I know there are a few at Mass general and Sloan-kettering .
    If your husband still have night sweat, tell the doctor too.

    God bless.

    in reply to: Genomic Profiling #77815
    pcl1029
    Member

    Hi, Marion,

    I happen to notice that the above was your messages #9,000 ;
    Your devotion is obvious to all of us.

    Congratulations

    God bless.

    in reply to: New Diagnosis, lost, confused, scared……. #77779
    pcl1029
    Member

    Hi, Deborah,

    the link below may help.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10757

    Age 68 is young if no other co-exist disease involved at the same time.
    If I were you, if you have not done that, please get a 2nd opinion from Dr. Selby is at USC (Los Angeles) for surgical consult.

    God bless.

    in reply to: Seattle Consult #77802
    pcl1029
    Member

    Hi, Porter,
    Have you had a 2nd opinion on liver surgery by Dr. Selby at UCSF or Dr.Chapman at St. Louise? they should see more than 60 patients per year. Jules above message is very encouraging and you may reconsider this opinion.

    God bless.

    in reply to: New member, new diagnosis, new to all of this. #77167
    pcl1029
    Member

    Hi, Kerry,
    Nice to hear you like Northwestern.
    They are the pioneer of Y90 development.; there are a lot skillful interventional ridiologists there to help you out.
    Please , after comparing of other options(ie: chemotherapy ,targeted therapy from oncologist; IMRT from radiation oncology and chemoembolization from IR and Liver surgeon from Dr. Kato.) ;sitting down and list the pros and cons before you finalize your decision.

    Ask what if y90 don’t work and what will be the next opinion from Northwestern.
    Can they do segmental radioembo to less the toxicity as compare to doing the whole liver all at once if there is a choice.

    God bless.

    in reply to: Received bad news yesterday and looking for advice #77741
    pcl1029
    Member

    Hi,

    Dr. Kato takes some of the most difficult cases of liver surgery. Therefore your father is in good hands. But on the other side of the coin,the patient may take a bigger risk too. Try to hear what Dr. Kato ‘s suggestion after he read the scan and decide the next step that you think, based on your dad’s current condition,you will do.
    The chemotherapy of “FOLIRINOX” right now is using much more than before as a 2nd line chemotherapy after GEM/CIS. In my opinion, it is a tougher regimen.
    Why they were not recommend Y90? may be the multidisciplinary team did not involved the interventional radiologist but only the oncology radiologist.

    I agree this disease is tough if patient does not have that much options; but equally tough or even tougher is when a lot of options are available and that is why we, as patients or caregivers have to study ,to read others’ experiences, and to keep up to date with the new development to find the best way to treat each individual case.

    God bless.

    in reply to: Received bad news yesterday and looking for advice #77731
    pcl1029
    Member

    Hi
    Try to get a multidisciplinary team of liver surgeon ,medical onc,interventional radiologist , and oncology radiologist for a 2nd opinion at Mass General or Sloankettering . You may have to specify the above specialties you need to see to get a complete picture of the tumor situation.
    God bless.

    in reply to: checking in/updating #77656
    pcl1029
    Member

    Hi, Lainy,Holly,Shellina,Caroline and Marion!
    Thanks for your sharing.
    When I am frustrated or angry,I read and write more about this disease , I try to search different ways to say no to this roller coaster ride, I plan more for the financial future for my wife and the kids . I go to work partime as an example to my coworkers that a cancer patient still can be very productive ,the same or even better than those who have no disease. I channel my energy in this way.
    And with respect to many of you I know , many of you channel your anger,frustration and life difficulties into extremely productive commitment and benefit to so many that came before or after us. To most of you, just your message about your disease treatment and how you deal with the disease or how you care for the love ones provide substantial encouragement to allow us to reflect upon ourselves the way we look at ourselves at time of crisis.

    Am I afraid to die, of course. Am I worry for my wife and kids when I am gone, absolutely. But it still does not give me the right to lash out to everybody at will.

    I always think that if this is the journey that God wants me to take, I should take it as gracefully as I can. I may break down at times, but hopefully I can pick it up again with grace and dignity

    Finally, thanks for everyone’s love, hugs and kindness and I think it is time to move on to a better path of sharing and friendship .

    God bless.

    pcl1029
    Member

    Hi, Gavin,

    This exactly what I was told by Dr. Gores at Mayo that even the majority of patient may not response to Sorafenib beyond the short period of time of benefit; a sub set of patients can be of benefit from Sorafenib (a TKI-tyrosine kinase inhibitor)for a long time to control the cholangiocarcinoma .
    My guess is that other small molecules or antibodies (TKI & MoAB) will do the same. It just take time to find out the one that will be the best one to begin with. And NGS( next generation sequencing) gene profile will provide a foundation for such search if the oncologist is experienced on using this route.At this time, few treatments are really standing out,but at least better than going thru a lot of traditional chemotherapy without a personalized therapy in plan.
    I knew doctors and others may not agree on using this new technology to search for treatment, but there is one big difference ,the medical professional are not patients like us,we have a time limit and they don’t.

    Again, be sure to say hi to your mum for me, you are right , here in Chicago is as cold as the feet of the BEARS and the sky is cloudy, with no chance of going to playoff or meat ball.

    God bless.

    in reply to: checking in/updating #77644
    pcl1029
    Member
    dboms wrote:
    So here is my question: is it normal to not be able to talk to family and friends about the possibility of my not surviving this? I feel like I have no one to talk to about it. No one wants to hear it. They are still thinking positive. I am too, but occasionally I feel like I need to get it off my chest. So, I’ve been crying some by myself. What’s the deal, am I crazy?

    Hi, Yes, it is normal to not be able to talk to family and friends about the possibility of my not surviving this? because in reality, nobody really wants to hear it until , like the patients and the caregivers here are FORCED into that situation.

    You are not crazy; crying is normal; need to get it off the chest is very normal;
    I do the same at times when I am praying; I do feel down at times especially I think I know a lot about this disease but actually I don’t. I feel sorry for all of us, the patients and the caregivers, that I cannot come across fast enough to report tolerable treatment plans for all of us.
    And of course, it hits hard when member expressed personal disappointment over the effort that our members tried to provide without valid foundation. I do not enjoy the “unique style of personality or writing”; In short , rather, I enjoy criticism with reasoning behind.
    Thank you for this chance to make me feel good to get this out of my chest.

    God bless.

Viewing 15 posts - 106 through 120 (of 1,667 total)