pcl1029

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  • in reply to: 27 and advanced inoperable spread to liver lungs :s #54761
    pcl1029
    Member

    Hi,
    Princess Margeret Hospital in Toronto is the best cancer center in Canada. You are in good hands.
    Gem/cis is the current popular chemo for CCA patients;but there a lot of other choices just in case. Radaition treatments like RFA chemoembo or radioembo are additional choices for treatment of intrahepatic CCA like you have.
    Unlike other cancer,CCA is a long and winding road that requires courage,patience and knowledge to navigate on it due to the high recurrence rate. but don’t worry , you are young and the age factor is on your side.do not give up hope and stay in touch.
    God bless

    in reply to: Adjuvant chemo- or radiotherapy? #54322
    pcl1029
    Member

    Hi,Richard,
    You are a good researcher,the reason I said this is -you have a desire to carefully learn and know about this horrible disease so you can take care of your wife in advance to the possible outcome in the future. I salute you on this.
    Yes, there are benefit for adjuvant therapy for patients with R0 or R1 margin;but the duration of chemotherapy of 6 month may not be enough to prevent the recurrence.
    Additional radiation therapy may add additional survival benefit to CCA patients
    Clinical trail whenever possible is also recommended by NCCN and ESMO.
    ps. please read my reply to your e mail today for more info.
    God bless.

    in reply to: Pain #54707
    pcl1029
    Member

    Hi,
    Based on what I can understand from your messages on the board.
    You had acid reflux symptoms before;you said you have UPPER LEFT abdominal pain,if so ,by location ,the pain is more relate to the stomach than to the liver.
    You did not mentioned the exact locations of the 3 liver tumors you had;but if they are on the left and upper side of the left lobe of the liver,the chance of causing pain on the upper left side is also a possibility.
    Chest tightness (ie: shortness of breath)can also cause you discomfort too because of the lung infection.
    Levaquin,is a board spectrum antibiotic used for pneumonia,cholangiitis to urinary tract infections and it is appropriate for lung infection. You will feel better after 3-4 days of treatment(ie: improvement on breathing and chest tightness) but make sure you finish the entire course of treatment of the antibiotic.
    If you think there is no improvement after the antibiotic treatment and the pain still persist; A visit to the GP or GI specialist is recommended.
    Again, I am not a doctor but a CCA patient like you .
    God bless.

    in reply to: Update on my sister #54738
    pcl1029
    Member

    Hi,
    All I know is that combination of chemo is tough esp. after radiation.Have you ask the radiologist about PDT ?
    God bless.

    in reply to: bile duct reconstruction?? #54652
    pcl1029
    Member

    Hi, Karen,
    I do not think the De Vinci robotic surgery is suitable for biliary reconstruction.
    Most of the time it is used in urology and gynecology related cancers like prostate,uterine,kidney,throat ,bladder ,colorectal or endometriosis.

    Most of the time, Whipple procedure or Roux-Y hepaticojejunostomy are used for biliary reconstruction if patient’s medical condition is allowed. Both surgery are long and difficult and should be performed by experienced GI surgeons.
    I do not think the oncologist and the surgeon will start anything unless the bilirubin is within the normal range.
    Radiology procedure like PDT;chemotherapy like Gem.Cis or Gem/Xeloda
    may be of use to the extrahepatic cholangiocarcinoma (tumor located in the common bile duct).
    but I think the most important goal now is the bilary drainage to relieve the blockage and decrease the bilirubin level back to normal range in order to receive surgical or chemotherapy treatment.
    God bless.

    in reply to: What next? #53945
    pcl1029
    Member

    Hi,
    why you schedule your interventional radiologist’s appointment after the CT scan instead of 2 weeks from now,That way will provide a more up to date picture for him to make his assessment .
    I think they can do something(ie: RFA on the 2 liver spots ;but the one that fused with the stomach is a bit difficult ,may be he/she will use chemoembo or radioembo for it first;the whole thing also depending on whether how the Gemzar works out so far.Miracle does happen,if the tumor responding to treatment,it may separate from the stomach ,(although I think it is too early to tell )and that will be the best news so far;then your treatment options will be more and better. If he/she say no, ask why? Is it the location of the tumor too close to major organs or major blood vessels? Can he/she go around them and what will be the side effects of such interventional treatment ?Can he /she tell you if your dad is able , will he/she uses RFA ,chemoembo or radioembo or the combinations and why ?
    Ask questions to help you learn and retain the knowledge to help your dad;you will be surprised if you asking questions like that;the radiologist will treat you a bit differently knowing that you have done your preparation .
    God bless.

    in reply to: Survival benefits of surgical resection in recurrent CC #54538
    pcl1029
    Member

    Hi,
    Thanks ,it is very useful and informative to those patients like me had recurreence.
    The data are accurate st least from the disease state I have to going thru.

    Please keep it coming, and I thanks for your interest in providing useful data for the patients on this web site.
    You never know, (like Dr.Fleming in 1928,the one who discovered penicillin by chance);some of us like you ,put up something on the web and thinks nothing about it,but others who read your message may have a “light bulb moment” and you will be part of the discovery contributor.
    God bless.

    in reply to: Adjuvant chemo- or radiotherapy? #54319
    pcl1029
    Member

    Hi,Kate,

    “I wonder if it makes a difference that with Richard’s wife we are talking about adjuvant therapy with negative margins. “

    Yes, according to ESMO(European society of Medical Oncology) guidelines. they suggested either supportive care or palliative chemotherapy and/or radiotherapy after a noncurative resection of CCA (intra and extra)and consideration of postoperatvie chemoradioptherapy as an option after complete surgical resection. But the NCCN guidelines(National Comprehensive Cancer Network) in the States indicated for extraCCA patients with resected,margin-negative ,observation or fluoropyrimidine-based chemoradiotherapy are acceptable options. for intraCCA patients,have no residual local disease,no adjuvant therapy recommendation are made.

    “Is there some evidence you have seen that Gem also works better in adjuvant therapy? The reasons for the Bilcap trial using Xeloda seem to be based on it’s positive results with colon/pancreatic cancers.
    I’m wondering what a study of Cap v Gem would yield. ” please go to http://www.mdpi.com/journal/cancers and put in title as Targeted therapy for biliary tract cancer.author=junji Furuse and review the article. It will provide you,on table 1 phase II studies of the most used chemo agents up to date for CCA;except 2 studies, most are very current(after 2004 to 2010) especially table 2.(all are in 2010).

    “Also interested in why you think Gem and Cap together might be more effective? “
    It is because gemzar and 5FU(or capecitabline) are the 1st-line treatment chemo agents,by EACH itself ,proven to be effective in treating CCA. for Gemzar itself alone is arounf 7-27% and 5FU by itself is around 0-34%.And there were studies indicated when they combined together the objective response rate is 31% with an additional 42% had STABLE disease.(you can read more into it from the above studies from table1 and 2 in that article.)

    “Did you find something which shows radiation successful after a resection with good margins? I seem to find studies which say radiation is usually used with positive margins?”
    Please see the above NCNN and ESMO recommendations that I have just included in this message. And no.I did not find anything showing radiation is necessary after resection with good margin.But as I talked to Dr, Levy from Mayo during the ASCO 2011 where he presented”Soup and Nuts about CCA” he said one thing about EUS for extrahepatic CCA was that ,”there are always residual CCA cells may involve in recurrence.” in short ,it is difficult even with great care when taking biopsy from tumors .By the same token, it is very difficult,even with good surgeon,to resect with clean margin and expected the CCA will never return for the same reason. I had >1cm in clean margin the 1st resection and still recur after 18 months. (that might mean microscopically the residual CCA cells (not the tumor) may be too small to be pick up by intraoperative ultrasound,but macroscopically ,thru the surgeons naked eyes it is clean even is 1 cm away from the tumor site.)

    What I am trying to say is that ,be vigilant,be watchful for your dad’s CCA, even the doctor said is all clean;monitor his CCA every 3-6 months;and deal with the outcome as soon as possible with the best treatment options at that time frame.

    Kate, not that many people like to know the details about cancer,but knowledge helps in understanding the tumor biology and hopefully one day the CURE can be find earlier enough for all of the CCA patients and give the caregivers like you the ultimate joyful reward of knowing that your participation is meaningful and rewarding not only to your love ones but as well as to the society- discover the cure or pathways for better and more effective treatment plans with minimun or no toxicity.
    God bless.

    in reply to: Adjuvant chemo- or radiotherapy? #54317
    pcl1029
    Member

    Hi,Gavin and Marion,
    you are always welcome.

    Gavin, with last nite’s win ,the Bear may actually have a chance for playoff.
    If they will beat the Lions this Sunday ,then I may ask your mum to borrow 20 pounds from her and bet on the Bears to win the NFC at least;.Again the 49ers looks so good this year under Jim Habrough -a former Bear QB from the Golden era. Make sure you say hi to your mum for me.

    And to Marion, sometimes I feel bad that I cannot comfort those patients and caregivers like you and Lainy or Gavin did. I know as patients,some of them just don’t want to know.
    and therefore sometimes I choose not to answer ALL the messages I saw on the board but selectively in fear of upsetting them more.It is a difficult choice;plus I am not good at that anyway emotionally.
    God bless.

    in reply to: It’s back after everyone thought I was ‘cured’ =( #54543
    pcl1029
    Member

    Hi,
    Sorry to hear about the recurrence after 4 years.
    You may not know that I am also a CCA patient for 31months and resected twice;currently is between treatment plans.
    I try to find out whether you had intrahepatic or extrahepatic CCA,but I could not find out the answer to help. I only know that you were diagnosed around 3/2007, had resection with positive margin and lymph nodes involvement;on simvastatins for several years but I do not know what treatments you were on BEFORE and NOW. If you don’t mind to tell me the name of the drugs or radiation treatment you are on,I appreciated. I am not a doctor but I,like others before me, is not ashamed of having this CCA disease and If I can of any value to my fellow patients,then my job is done.
    God bless.

    in reply to: Adjuvant chemo- or radiotherapy? #54314
    pcl1029
    Member

    Hi,Marion,
    That was mentioned in the article written by Tushar Patel-“Cholangiocarcinoma-controversies and challenges” on Gastroenterology & Hepatology vol.8 apr.2011.
    The exact quote is,”In contrast to patients with intrahepatic cholangiocarcinoma ,the combination of gemcitabine with cisplatin does not seem to offer an advantage for those with ductal cancers.”
    And in uptodate.com ,when they review ‘Systemic therapy for Advanced cholangiocarcinoma”,they mentioned,base on the review of the article by Patt YZ,HassanMM etc”Oral capecitabine for the treatment of hepatocellular carcinoma,cholangiocarcinoma and gallbladder carcinoma.Cancer 2004;101:578″,for some unclear reasons capecitabine as a single agent appears relatively less active for cholangiocarcinoma than for gallbadder caner.But here is the tumor biology of gallbladder cancer come into place.The gallbladder lymphatics drain FIRST to the cystic and the common duct nodes first and in some cases to the lymphatic nodes posterior to the pancreas or portal vein.If so,the gallbladder cancer is more related to the ductal(extrahepatic) CCA than intrahepatic CCA(which mainly involved the liver.) and therefore I think Patel’s observation is correct.
    Futhermore,and here is the difficulty for chosing the BEST chemotherapy for the specific type of cholangiocarcinoma (intra or extrahepatic) according to up to date.com and what I read so far is this.
    By no means that the Gemzar/Cis is the REFERENCE standard . Ramdomized trials will be needed toCOMPARE if Gem/Cis is more active regimen and less toxic than gem/cap(Xeloda);GEMOX(oxaliplatin);CAPOX(capecitabine/oxalipiatin);Gem/irinotecan;not to mention to compare Gem/cis using one of the above regimen with one of the molecularly targeted therapy like erlotinib(Tarceva) or bevacizuman(Avastin).
    The only thing that is clear is that Gem/cis in combination provides better overall response than using Gemzar alone. but than again,using Gemzar alone is not a bad choice too, it works for me for 14 months and I think after 2nd opinion,I think I will be on it again. I will present myself as an experiment and see what can come out with it to benefit to all of us. So far I know for sure one thing; that it takes exactly 12 months for an intrahepatic CCA to grow from 0 to 3cm(a size like a large grape inside the bile duct without vascular involvement.)
    I will report the results and decisions made as the ride continuing thru this long and winding journey.
    God bless.

    in reply to: Adjuvant chemo- or radiotherapy? #54311
    pcl1029
    Member

    Hi,Richard,
    If your wife’s histology reported indicated positive margin;do what the 2nd opinion recommended;that is Gem/cis and radiation. If your wife’s CCA is extrahepatic CCA,Gem/Cap , radiation with or without FUDR or Capecitabine may be a better choice since 5FU or capecitabine for some unknown reason works better for extrahepatic CCA than intrahepatic CCA unless your wife have done some chemo sensitivity test for choosing the proper agents.and it is much easier to take the Capecitabine than the cisplatin.(less toxic to the kidney and hair loss.)
    I love to see a copy of the BILCAP procotol if you can e mail me one.
    God bless.

    in reply to: My mom #54492
    pcl1029
    Member

    Hi,
    Your try your best by coming to this web site to help your your mom for info and insight;you did try your best for your mom; I am sorry that you lost your mom.
    As always Lainy’s poems give me the comfort and encouragement and I know my family will appreciate them.
    God bless.

    in reply to: 3rd external drain for Mom & dilated bile ducts!??!!! #54462
    pcl1029
    Member

    Hi,
    2nd opinions for surgical and G I consult,medical oncology and interventional radiation consult from John Hopkins is a good start.
    Do not give up. Few can have the chance of resection like your mom.
    This is the time for the best use of 2nd opinion.
    God bless.

    in reply to: Adjuvant chemo- or radiotherapy? #54306
    pcl1029
    Member

    Hi,Kate,
    Thanks to Gavin andHelen,please read my response message ofBILCAP under chemotherapy forum on this web site.
    This study is different in a way that the patient population is not fix (close off),but rather is on going.
    I agree with you,for this cholangiocarcinoma cancer,since good and bad cell in the liver both can be regenerated themself,unlike other cancer,(ie:breast ca,once you took it out,the chance of recurrence is far less thanCCA);there is no cure at this point,that is why we have to find treatments to improve the chance of survival more or less by ourselves until otherwise.
    God bless.

Viewing 15 posts - 1,366 through 1,380 (of 1,667 total)