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  • #56220

    In reply to: SwiTcHing treatment

    lainy
    Spectator

    Jtoro, please don’t jump the gun. Have you thought of another opinion? If you go to the search button you may pull up posts that talk about 5fu/oxiliplatin. You do have the week to decide what you want to do. Remember, it all is your decision. I am wishing the best for you and you will make the right decision! You never know how strong you are until “strong” is the only choice you have!

    #6156
    jtoro
    Member

    Update- I have been on chemo with gemzar/xeloda/ nexavar for almost 20 months with scans each 7 weeks. My last scan (2 weeks ago) showed only 1 mm growth, but activity in peritoneal area. He decided to keep with same chemo until next scan. Today I had appt. And told him that my pain has really increased and am taking vicodin round the clock. We had a talk and he decided to change treatment now because of the pain. The next treatment will be 5fu/oxiliplatin. I have to wait one week for insurance approval. I’m very upset that the last treatment is not effective anymore. He said it was amazing it worked for 20 months. I’m so nervous that this next treatment won’t work and then I don’t think there’s anything left to try. I broke down in the office and couldn’t stop crying. I need to be here for my children-16 and 19. How well has this treatment worked for others? What if this doesn’t work? Should I have switched? So many questions going through my head.
    Jtoro

    #6154

    Topic: My Mom

    in forum Introductions!
    shar
    Member

    My mom is 75 and was diagnosised with inoperable cc last August. This came from out of no where. She was active and we thought healthy. She always had a yearly physical and did all the yearly tests. The whole thing started with the symptoms I have read so much about. The itching and then the jaundice. The cancer is in her liver, bile duct and gallbladder.

    From the time of diagnosis the doctors moved very quickly. She had a stent put in within 2 days and within 2 weeks was starting her first round of chemo (gem/cis). She was tolerating this chemo very well with very few side effects.

    Unfortunetly in October she started running a temp and we soon found out that the stent was blocked. This time, things didn’t move as fast and by time they replaced the stent her bili was at 13. This was a hugh set back physically and she is still working to try to regain her strength. The also discovered that the tumor was growing in the bile duct, although the tumor in the liver remained stable, so they switched the chemo to 5fu/oxal.

    We just completed the 4th treatment of this reg. and will not have another CT until after 6 rounds. This regimate is much harder on her and she does very little daily. She also had to deal is a blood infection about 3 weeks ago.

    We are trying to take things a day at a time, but the hardest part of this for me is the unknown. Do you plan events for 2 months out – how about 6 months out. I always feel things are so out of control.

    #56076

    In reply to: Introduction

    jathy1125
    Spectator

    Dave-Welcome and sorry you had to find us. I am a CC survivor, I am cancer free 2 years thanks to 2 liver transplants!! I have a remarkable story to share with you. I am alive because of God, 2 strangers and Dr. William Chapman st Barnes-Jewish Hospital in St. Louis MO.
    Dave, like you I was basically healthy, just itchy. I was diagnosed by an ERCP (I ended up having 9 total while waiting.) My trial was intravaneous gemcidabene for 8 weeks and then 6weeks of 5 days a week radiation, while wearing a chemo pump with 24 hour a day 5FU chemo for the same 6 weeks of radiation. I then has surgery to make sure it hadn’t spread and was placed on transplant list Jan29,2009 I took mega doses of XELODA (24 pills a day) while waiting.I received my first liver May 24, 2009. I had two “fake liver” calls during that time, one time I was actually being wheeled into the operating room. My MELD score kept increasing because the longer we wait the sicker we are supposingly. I never had the “lifetime movie” expierence, I managed all my naseau with 3 types of meds (Adavan, Compazine and Zofran). I also “crawled into my recliner” at the end of radiation and that was pretty much where I stayed. I was hospitalized several times because of the stents. Fatigue was the main sympton amd the longer I waited the more tired, but I was never bed ridden.
    I would love to talk to you and help answer any questions. Please feel free to email me or call 618-567-3247. You can also read my story at thetelegraph.com under christmas miracle. (I also keep it posted on my FB page Catherine Sims Dunnagan, I also have another CC transplant story posted). I have so much to share with you about being a transplant patient I look forward to hearing from you.
    Dave there is HOPE, and you are truly lucky to be able to qualify for this trial.
    Lots of prayers-Cathy

    pcl1029
    Member

    Hi, everyone,

    UPDATED AS OF 1/2/2012

    this is the list of CCA patients within the last 2 month(nov.1-DEc 31,2011)
    that joined this web site.
    1.total number=28patients;
    2. one patient await liver transplant.

    GENDER: Female=16 ; MALE=12
    AGE:range=29-80( with 1 unknown)
    with 1 at age 29 ; 2 in the 30’s ; and 7 in the 40’s;
    9 in the 50’s; 2 in the 60’s ;3 in the 70’s ;1 in the 80’s ;
    ( 10 in the<50's; 1 with no data.)
    DIAGNOSIS : intrahepatic CCA=13
    ; extrahepatic CCA=11
    not sure ICC or ECC.= 5
    (28of the patient DX alone in 2011,with 3 recurrences ;4 passed away)

    CHEMO/RADIATION:

    GEM/CIS = Gemcitabine+ciplatin protocol= 9 patients.
    GEMOX = Gemcitabine+oxaliplatin protocol=1 patient.
    GEMOX+panitumimab = 1 patient.
    GEM/CIS+everolimus = 1 patient.
    GEM/CAP+bevacizumab =1 patient.
    GEMZAR only =3 patients.
    5FU protocol +? = 1 patient.
    Pacilitaxel(Taxol) = 1patient.
    Radiation. = 1 patient.
    Not sure about protocol = 5 patients.
    Geographic LOCATION: UK=1 pt. Egypt=1 pt;Canada=3 pts ; rest=USA.
    God Bless.

    #55839
    Eli
    Spectator

    Thank you everyone for your feedback!

    Pam:

    My wife doesn’t get Palonsetron/Aloxi. She received an IV of Zofran + Dexamethason. They controlled nausea really well.

    You wrote that you linked Lauren’s headache to Zofran. My wife was on Zofran during her previous therapy (radiation + 5FU). She didn’t have any headaches then. So we are pointing fingers elsewhere. We think it’s either dexamethason or gemcitabine. Gemcitabine info sheet mentions headache as a possible side effect. They suggest taking 1-2 tablets of plain acetaminophen (Tylenol) 30 minutes before chemo. We will try that next time.

    We also like the idea of tylenol + caffeine for headache. We noticed that my wife’s blood pressure dropped after chemo (the nurses measured it before and after). My wife is pretty certain that low blood pressure can cause a headache, just like high blood pressure does. Caffeine is supposed to help with that.

    Percy:

    Hospital instructions say in large print: NO ASPIRIN DURING TREATMENT; use acetaminophen (Tylenol) for headache, fever, or occasional aches and pains. As much as I trust your medical expertise, we are not going to try “Excedrin migraine” for headache. Gotta follow hospital instructions.

    Eli

    pcl1029
    Member

    Hi,
    thanks Marion and Eli for your compliment. yes it is a lot of work;but if you love what you are doing like both of you do,it is worthwhile.

    Here is the breakdown for that stats: for Nov1-Dec 18,2011(patient pop=22)
    (# of patient information may not add up to 22 due to lack of data provided)

    GENDER: Female=14 ; MALE=8
    AGE:range=29-80(
    with 6 in the 50’s; 2 in the 60’s ;3 in the 70’s ;
    1 in the 80’s ; 6 in the<50's; 4 with no data.
    DIAGNOSIS : intrahepatic CCA=9
    ; extrahepatic CCA=9
    not sure ICC or ECC.= 4
    (18 of the patient DX alone in 2011,with 2 recurrences ;4 passed away)

    CHEMO/RADIATION:
    GEM/CIS = Gemcitabine+ciplatin protocol= 9 patients.
    GEMOX = Gemcitabine+oxaliplatin protocol=2 patients.
    GEMOX+panitumimab = 1 patient.
    GEM/CIS+everolimus = 1 patient.
    5FU protocol +? = 1 patient.
    Not sure about protocol = 4 patient.
    Geographic LOCATION: UK=1 pt. Egypt=1 pt;Canada=3 pts ; rest=USA.

    The observation::
    1.The Male to Female ratio; usually is more in man than women.
    2.There are 6 patients in the <50 age group;a LARGE difference from the
    reports that I had studied;age between 50-70 is the prevalence group.
    3.GEM/CIS is the most used protocol in both ICCA and ECCA. and just one using 5 FU(including capecitabine);that is a bit surprise to me.

    BTW, this is just a simple data collection in a random selected period with NO STATISTICAL adjustments.
    God bless.

    #55770
    pcl1029
    Member

    Hi, Trevor,

    This was the reply to you not long ago from me if your former ID is ” tnyjax34 “.

    Hi,
    If GEMOX(the regimen which you are having now) works like you say, I will continue the course of treatment until otherwise. You want to reserve more options for the future just in case. For me(as a patient),CC is a long war and not just a battle. You need to think far ahead of the game if God is willing to give His Grace to you and me to have that long the time frame to fight and learn about CC.
    Gemox+ Cetuximab(a MoAb like bevacizumab-Avastin) have good results in objective response(63%) but long -term outcome were not reported.So when I read this article ,I ( as a patient)will think about what is next if this regimen don’t work again after initial success and/or if the CC recur again for the 2nd time . The other clinical protocol is Gemzar+Xeloda+Avastin which also provided good results but side effects like colon perforation from Avastin has been reported.
    In general “IF IT WORKS,DON’T FIX”
    God bless.

    The following is my response to your current questions.

    If currently your CCA is “stable” that means your CCA is currently responsible to the GEMOX treatment . Carpoplatin and cisplatin(which you had before changing to oxaliplatin because of nausea/vomiting side effects) are more or less the same because they are all belonging to the platium family .
    Gemzar+ carboplatin is mainly a regimen for bladder cancer. GEM/CIS and GEM/CAP are for biliary and pancreatic cancer.

    If you have peritoneal metastasis GEMOX+ Avastin may be of value since I knew it has good objective response( partial response>30% for my sister-in law’s peritoneal carcinomatosis in her omentum.) She had to discontinue the Avastin due to colon perforation caused by Avastin. But every patient is different and the incidence rate for GI perforation of Avastin is <1%-4%.
    Folfox is 5FU+oxaliplatin but CAPOX–CAPecitabine(a prodrug of 5FU)+ OXaliplatin may be easier for patient since Xeloda is taken by mouth. If you had extrahepatic CCA before you had the liver transplant,a phase II study of CAPOX trial of 65 patients with advance biliary cancer shown more favorable results to extra than intrahepatic CCA patients.
    Of course molecularly targeted agents like Tarceva and others are among other choices if you will need them in the future.

    Again, please always keep in mind that ,the addition of other drugs ,in theory, will add toxicity too. so you have to weight the benefits against the adverse effects as well. good luck and
    God bless.

    #6001
    glenys
    Member

    Hello, my name is Glenys and I was diagnosed with Intrahepatic cholangiocarcinoma three years ago last month. I underwent surgery on Nov. 19 and began 5Fu chemo and radiation in December. After the 5Fu I was supposed to start another round of chemo (Gemzar) that is likely spelled wrong.. lol. After one dose I was sent to ER and chose to discontinue chemo. It is now 3 years later and they tell me the cancer has returned. I just had a liver biopsy or bibopsy as my son calls it, and am awaiting the results.
    One day at a time I have done well. A positive attitude, enjoying my children and grandchildren have been essential. I am also using some holistic approaches that seem to benefit me but truly believe that the greatest help is from hundreds of people who keep me in their prayers and do not identify me as a victim. They just keep accepting me. That is such a blessing. I am 66 years old and still going. I do tired easily but blame that on these golden years. lol My prayers are with you all and please remember the healing power of laughter!
    Love and light!

    pcl1029
    Member

    Hi,
    Based on what your wrote,your mom’ CC have been spread on both lobes and front and back sides of the liver.
    I also take a look at your link for SRFA,which is not much different the percutaneous RFA that I had about six months ago except it may be more precise for the location. (ie:they use the same needle-electrodes to burn off the tumors like RFA (see the study list at the bottom of this email.)

    I think it is difficult for you mom to have SRFA or RFA based on the multiple extent of the tumors involvement of the liver.

    Current NCCN guidelines for metastatic CC included:
    Gemcitabine/cisplatin;
    Clinical trials at most of the big cancer centers in the US,may be some at Italy and UK.(most of the trials have molecularly targeted agent add to the current 5FU or gemcitabine 1st-line therapy)
    5FU based or other gemcitabine based regimen
    and finally supportive care in that order.

    Your mom is only 57 years old, so the age factor is on her side;make sure she eats well and use Ensure or other protein liquid supplement to increase her energy to fight the cancer.(I took 1-2 bottles/day(about 350-700 calories total in addition to my regular diet;I took multivitamins for adults 1-2 tab/day;I drink at least 6-8 glasses of liquid-about 2000-2400ml/day for hydration and mostly I eat fruits and vegetables,soy beans products like TO-FU ; try to sleep for at least 8hrs starting no later 10pm.)these are things we can do for ourselves.

    At this point,I will follow your oncologist recommendation to start the GEMOX treatment and will follow with PET/CT in 2 months to check on the progress.
    Currently GEMOX+cetuximab has the highest objective response rate(63%)but the long term outcome such as OS and PFS were not reported.further study of this combination is warrented.
    (you can read my messages on the expericnce forum about the PET/CT and chemotherapy as well as the management of the side effects.)
    And if you like ,you can always,like others, write to me via emails thru this web site by clicking my email address under my ID PCL1029.
    Below are a few of the chemotherapy currently used without the molecularly target agents.
    Chemotherapy such as GEMOX; ECF regimen of epirubin+cisplatin+infusional 5FU); GEMCAP(gemzar+capecitabine)Gemcitabine+irinotecan;Oxaliplatin+capecitabine to name a few.

    Stereotactic radiofrequency ablation.
    Bale R, Widmann G, Haidu M.
    Source

    Department for Microinvasive Therapy (SIP), Medical University Innsbruck, Anichstr. 35 6020, Innsbruck, Austria.
    Abstract
    PURPOSE:

    To describe the technique of percutaneous stereotactic radiofrequency ablation (SRFA) and its application in a patient with an unresectable multifocal intrahepatic cholangiocarcinoma (ICC).
    MATERIALS AND METHODS:

    A 72-year-old man presented with two nodules of an ICC with a maximum diameter of 10 and 4 cm, respectively. To produce overlapping ablation areas and cover the entire tumor volume, 18 paths for the placement of radiofrequency ablation (RFA) probes at multiple locations were planned on 2D and 3D reconstructions of the computed tomographic (CT) data. The 15-gauge coaxial needles were advanced through the aiming device to the preplanned depth. A control CT fused to the planning CT data confirmed correct needle placements. RFA was performed with an impedance-based multiple-electrode RFA system. Fusion of the contrast-enhanced control CT with the planning CT showed an appropriate zone of ablation.
    RESULTS:

    Besides a mild asymptomatic pleural effusion, no complications occurred. Twenty-seven months after the first RFA, two new small distant liver metastases were successfully treated by SRFA. Currently, 38 months after diagnosis and 36 months after the first SRFA, the patient is free of detectable disease.
    CONCLUSION:
    SRFA seems to offer an effective treatment option in selected patients with even unresectable ICC.
    Keep in touch and
    God bless.

    #55013
    pamela
    Spectator

    Dear Sandtdad,

    I just wanted to take a minute and welcome you to the site. My daughter, age 25 has CC too. She also has one big tumor on the right side of her liver and small ones on the left side. She is on gem/cis and 5FU. Her big tumor has shrunk 2 cm. each way so far and her little ones are smaller too. She actually feels better being on the chemo. I hope your treatments keep working and one day you will be able to have surgery. Please visit this site often. The support is awesome. Take care.

    -Pam

    pcl1029
    Member

    Hi, everyone,
    Single agent comparison of Gemzar and 5Fu including capecitabine.,the oral form of 5FU.

    In short,not much difference between the two agents in survival benefits but less side effects on patients taking gemcitabine.

    Gemzar Versus 5-FU for Adjuvant Treatment of Pancreatic Cancer

    A large randomized study demonstrated no significant improvement in survival with Gemzar® (gemcitabine) versus 5-fluorouracil (5-FU) for the adjuvant (post-surgery) treatment of pancreatic cancer. These findings were recently published in the Journal of the American Medical Association.[1]

    Pancreatic cancer is the fourth leading cause of cancer death in this country. Treatment for early pancreatic cancer may involve surgery to remove as much of the cancer as possible followed by chemotherapy.

    In this current European study, researchers conducted a randomized controlled Phase III trial to evaluate chemotherapy with 5-FU and folinic acid versus Gemzar among 1,088 patients with early-stage pancreatic cancer. All patients on this study had their cancer surgically removed prior to being randomized to adjuvant chemotherapy and were followed for at least two years.

    Median survival was 23.0 months for patients on the 5-FU/folinic acid arm versus 23.6 months on the Gemzar arm (P=.39).
    14% of patients on the 5-FU/folinic acid arm experienced treatment-related serious side effects compared with 7.5% on the Gemzar arm.
    Progression-free survival was not significantly different between the two arms.

    **The researchers concluded that Gemzar did not significantly improve overall survival in patients with resected pancreatic cancer compared with 5-FU/folinic acid. Significantly, fewer patients experienced treatment-related side effects on the Gemzar arm.**

    http://news.cancerconnect.com/gemzar-versus-5-fu-for-adjuvant-treatment-of-pancreatic-cancer/

    References:
    [1] Neoptolemos JP, Stocken DD, Bassi C, et al. Adjuvant chemotherapy with Fluorouracil plus folinic acid vs gemcitabine following pancreatic cancer resection. Journal of the American Medical Association. 2010;304:1073-1081.

    #5967
    Eli
    Spectator

    Hello everyone,

    I’m a long-time lurker. My wife is currently in between treatments… I have time to write the introduction post.

    My wife and I are both 44. Our daughter is 13. We live in Ottawa, Canada.

    My wife’s symptoms showed up in the middle of April 2011. Very strong abdominal pain followed by a whole-body itch a few days later. We went to ER on April 18th.

    ERCP was done the next day. The doctor found a tight stricture in the intra-pancreatic portion of the common bile duct. He inserted a temporary stent to releive the obstruction. He also took a brushing biopsy. The biopsy came back as “suspicious for adenocarcenoma”.

    The remainder of April and May were spent on doctor consultations and tests. CT, MRI, EUS. We signed the consent to do Whipple early in June. The surgery was done one month later, on July 4th. (Canadian healthcare doesn’t move fast.)

    The surgeons deemed Whipple a success. They thought they took the entire tumor out.

    Pathology report came out three weeks after the surgery. The report confirmed stage IIB extrahepatic CC (T3/N1/M0). The tumor extended over the entire length of the common bile duct. It also invaded outside the duct wall into pancreas. 2 out of 15 lymph nodes were positive. Surgical margins were microscopically positive where the surgeons cut the bile duct.

    My wife’s incision got inflamed while she stayed in the hospital. The surgeons had to reopen the inflamed part before they sent us home. This open wound took almost 2 months to heal, causing a delay in the start of the adjuvant therapy.

    Due to positive margins and positive nodes, the oncologists recommended 5FU chemoradiation followed by additional course of GemCis chemo. This is in line with NCCN treatment guidelines.

    Chemoradiation started on Sept 12. 28 days of radiation, 1.8Gy daily fractions, for a total dose of 50.4Gy. 5FU was infused continuously around the clock concurrently with radiation. Chemoradiation ended on Oct 20. The last few weeks were very HARSH. My wife experienced pretty much every single side-effect in the book, some of them very severe. One month later, she still gets bouts of nausea almost every day.

    My wife was scheduled to start chemo 3-4 weeks after the end of chemoradiation. Given her condition at the end of chemoradiation, our oncologist decided to give her a longer break. She is doing a whole-body CT scan on Dec 2 (next Friday). If the scan is clean, she will start chemo mid-December.

    (I know my post sounds exceedingly dry. I decided to stick to the facts and leave emotions out of it. I can’t begin to describe the daily agony of dealing with this horrible disease.)

    Finally, a big THANK YOU to the kind people who keep this board up and running.

    — Eli

    #42377
    kmemoro
    Spectator

    Dear Margaret,
    I am so sorry that you are going thru this but you have been strong so far and Tom knows that you have fought this terrible disease right along with him.
    God Bless You and your family but know that Hospice will do whatever needs to be done to make this final step easier for him and all of you.
    My Dad is not too well either. He tried a new “cocktail” of 5FU and 2 other chemos. His breathing is also shallow. As a matter of fact, when I went into his room yesterday when he was napping I though he was not breathing. He sleeps a lot and his ankles are extremly swollen. He also looks ashy.
    I will go back to stay with him tomorrow and if he is the same I will call his Dr and ask him to have hospice come back as they were there last week but because he tried the chemo they couldnt do anything yet although they felt he needed oxygen already-I do too. I know he’s trying to get thru Christmas but I dont see that happening.
    Take care of yourself,
    Kathy

    #54743

    In reply to: Update on my sister

    baroque
    Spectator

    @Lainy Giving my sister powers after a hero named SuperWoman would cause catastrophic big-headedness. Maybe a hero like “ReallyAwesomeButDon’tGetAheadOfYourselfBecauseNoOneLikesEgoManiacs Woman”? ;)


    @PCL1029
    I haven’t asked about PDT yet. Mostly because my readings have me fixated on the Mayo Clinic strategy of radiation, chemo + liver transplant. The Radiation Onc and Hem/Onc both contend there should be no detectable cancer after the SBRT so I’d like to keep some tricks in the bag in the crummy instance of recurrence.


    @Susie
    My sister definitely thought radiation was worse after her first treatment. She just finished her second and it seems like she’s managed some kind of coping technique: Zofran before + Zofran, ginger tea, pot after + 6 hours sleeping. That deals with the worst of it but she hasn’t had any back-to-back days yet. Also, my understanding is that SBRT is easier to tolerate than conventional radiation so she lucked out, I suppose. You know, you’re the 5th person to suggest flying as a power? I heard an NPR story a while back suggesting people that pick flying are more “noble” and people that pick invisibility are more “mischievous”. I’m for invisibility over flight.


    @Pam
    My sister most definitely hates needles but she’s going to go with an IV for as long as possible. I think it’s a psychological thing for her. They offered her a port last time and she declined saying something to the effect of the internal struggle is also an external struggle. I think she meant she couldn’t control how crappy she felt with the chemo in her but she could control the crappiness of the IV. Sounds logical but also insane. Maybe we should be hoping for super rationality instead of super powers.

    @Marion Our Hem/Onc pretty much said the same thing as far as adjuvant therapy. I did ask why 5FU+Oxilplatin+Irinotecan and he said Gemzar/Xeloda were drugs designed to be more targeted for GI cancers (colon, pancreas, etc). Considering they were not effective in eradicating the cancer last time, he wants to use a completely different set of targeted chemo drugs. Articles I’ve read suggest Gemzar and 5FU are similar in terms of effectiveness. Oxilplatin is a platinum based drug in the same group as Cisplatin. And I don’t know much about Irinotecan other than it’s generally used for colorectal cancer. Seems like our Hem/Onc’s strategy is to mishmash chemo drugs from similar types of cancer. I don’t see that as a negative considering CC is such a mysterious bastard.


    @Patty
    Hulk had to be eliminated from a practicality standpoint; she’d be tearing through clothes like crazy. The only sound effect she makes is SNORE. Her logic is that she can’t be in a medically induced coma to bypass the side effects but she can be in a self-induced coma. :p

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