pcl1029

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  • in reply to: New to posting not to lurking #55023
    pcl1029
    Member

    Hi,
    Just a note.
    RR here means response rate. The 33%(14/42)=14 patients had either complete or partial response to the treatment;and 21 additional patients had stable disease(SD);and I think that was the population of patients(total=35patients) the author used to calculate the Median PFS (8.3 month)and OS(9.8 month) .
    God bless.

    in reply to: Returning to the forum with good news and bad news #55118
    pcl1029
    Member

    Hi,
    What I did when that situation happened;I click the back arrow once on the top left hand corner and recopy the message that I have just entered.Lockout and lock in again and paste it back to the message board and hit submit.
    God bless.

    in reply to: gemcitabine/ cisplatin questions #55137
    pcl1029
    Member

    Hi,
    You can get Imodium (Loperamide)over the counter for diarrhea.
    Take one capsule if you may anticipate the diarrhea is coming.or every 4-6 hours as needed for diarrhea;not to exceed 8 capsule per day.You can also open the capsule and mix the powder with liquid and take it that way too but i do not know how it will be tasted like.(you can also buy the Imodium in liquid dosage form too)
    God bless.

    pcl1029
    Member

    Hi,
    one more thing, since your are a doctor,try to use your connections with your peers,they may provide you 2nd or 3rd opinions to help you especially if you are a physician affiliate with a big hospital.
    I got all mine 2nd and 3rd opinions from the radiologists,GI specialists,GI surgeons and oncologists.
    I think you should get a 2nd opinion on oncology consult now to prepare for the next step. eg to have the chance to use the targeted agent along with the current one;try the university hospitals that have a large oncologists population or/and the best of all ,research and get one that specialized in cholangiocarcinoma.
    good luck and
    God bless.
    time is the essence.

    in reply to: question about metastatic cc #40872
    pcl1029
    Member

    Hi,
    A PET/CT scan will answer the question for you whether it is a cyst or benign or malignant.
    MRI may or may not tell it is ovarian cancer or not; and the PET/CT scan also can tell you whether the recurrence is hot or not.

    Below is a copied message about PET/CT scan usage from the experience forum under radiation.

    “I will recommend PET scan right after CAT or MRI if recurrence is confirmed or small lesions detected by MRI but not sure whether they are cancerous or not.This will give the doctor more info about the lesion such as whether the lesion has metastasized or give the doctor a more informed idea what he/she saw on the M R I or CAT scan indeed is a tumor that has metabolic activity(maxSUV) value and required immediate attention such as chemo therapy or resection,RFA,chemoembolization,radioembrolization,PDT,SBRT .
    By doing so,the doctors will not be confused with and discard the lesion as being part of the artery or hepatic vein or other forms of lesions and ask the patient to return in 3 months to repeat the scans to make sure.As you all know, 3months is a lot of valuable time for patients as well as caregivers. Who wants to wait for another three months? I think this is the part of early detection that we,ourselves, can monitor and provide the early benefit of more treatment options to the patient.

    PET can find or confirm cancer metastasized activities in the other parts of the body.PET may not be a good choice to locate NEARBY metastasized cancer activity such as the lymph nodes that are very close to the primary site of CC because the closest distances between the lymph nodes and the CC.)

    PET Scan allows visualization of CC because of the high glucose uptake(SUV) of the bile duct epithelium(the lining )– the “Hot spots” will light up on the PET scan and show the relative cancer activity of the lesion by the SUVmax value.”
    God bless.

    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.

    pcl1029
    Member

    Hi,
    Sorry to hear the news,I am a patient as well for 30 month now. But if you can tell me a bit about more about your mom,I can try to answer your question better.
    1. When is the Dx.made?
    2. Where is the rumor located? Left,rifght or the caUdate lobe and which segment? Posterior or anterior?
    3. How big is/are the rumors? And how many or just one big one?
    The above are related to whether your mom can have radiation procedures here in the State such aschemoembo,radioembrolization with Y 90,RFA SBRT etc.
    4. How old is your mom? Is she in relatively good health or have other issues?
    In the meantime ,I will look up the chemo like GEMOX with molecularly targeted agents combo. I know for sure GEMOX+Avastin,GEMOX+cetuximab and Tarceva and sorafenib had been used together.But most are in clinical trial setting and may be that is why your oncologist hesitated to try.
    Most of the time,whenCC have metastasized to other organs,surgeons will not do resection to remove the tumor and systemic chemo is the choice of treatment.
    More recently interventional radiation provided an other option to combat this horrible disease.
    Please feel free to ask questions, and in the meantime try to relax and concentrate your energy on finding the best treatment options,if available,for your mom.
    God bless

    in reply to: New to posting not to lurking #55020
    pcl1029
    Member

    Hi ,Eli,
    Your points are well taken.
    Thanks for your contribution on this subject.
    God bless.

    in reply to: New to posting not to lurking #55018
    pcl1029
    Member

    Hi,Sandtdad,

    You may have this study about panitumumab alreay,but just in case you don’t,here is the copy.

    Marker driven systemic treatment of inoperable cholangiocarcinomas: Panitumumab and combination chemotherapy in KRAS wild-type tumors.
    Sub-category:
    Hepatobiliary Cancer

    Category:
    Gastrointestinal (Noncolorectal) Cancer

    Meeting:
    2011 ASCO Annual Meeting

    Session Type and Session Title:
    General Poster Session, Gastrointestinal (Noncolorectal) Cancer

    Abstract No:
    4101

    Citation:
    J Clin Oncol 29: 2011 (suppl; abstr 4101)

    Author(s):
    L. H. Jensen, J. Lindebjerg, J. Ploen, T. Hansen, A. K. M. Jakobsen; Danish Colorectal Cancer Group South, Vejle Hospital and University of Southern Denmark, Vejle, Denmark

    Abstract Disclosures

    Abstract:

    Background: Cholangiocarcinoma is a relatively rare cancer with a severe prognosis. Regimens combining cisplatin and gemcitabine are considered standard chemotherapy in non-resectable cases. In Denmark, a combination of gemcitabine, oxaliplatin and capecitabine has been evaluated in phase I and phase II trials. Based on experience with other gastrointestinal tumors, additional effect may be expected when combining chemotherapy and epidermal growth factor receptor (EGFR) antibodies, but only in KRAS wild-type (wt) tumors. The purpose of this phase II trial was to evaluate the efficacy of chemotherapy and the EGFR-inhibitor panitumumab in KRAS wt cholangiocarcinomas. Methods: Main eligibility criteria were performance status <3, age <80 years, evaluable (not necessarily measurable) disease, and KRAS wt. All patients received panitumumab 6 mg/kg, gemcitabine 1,000 mg/m2, and oxaliplatin 60 mg/m2 on day one plus capecitabine 1000 mg/m2 b.i.d. day one to seven on a two weeks cycle. In a two-stage design, the first 18 patients met the criteria for extending inclusion to 46. The primary endpoint was the fraction of progression free survival (PFS) at six months and secondary endpoints were response rate (RR), toxicity, and overall survival (OS). Results: From 10/2008 to 8/2010, 46 patients were included in a single institution. There were 31 women and 15 males. Median age was 66 years (range 37-80). Twenty-five, 16, and 5 patients were in performance status 0, 1, and 2, respectively. The primary endpoint, fraction of PFS at 6 months, was 71.6% (95% CI 56.1%-82.4%, 33 events, intention-to-treat). Forty-two patients had measurable disease and the best response was 1 CR, 13 PR, 21 SD, and 7 patients progressing or dying at or before first assessment after 3 months. Thus, RR was 33% and the disease control rate 83%. Median PFS was 8.3 months (95% CI 6.7-8.7 months) and median OS was 9.8 months (95% CI 7.4-12.5 months). Toxicity was as expected including 8 cases of EGRF related skin adverse events >grade 2. Conclusions: This is the first marker driven phase II trial in inoperable cholangiocarcinoma. The regimen is feasible and will be tested in a randomized trial.
    Compare to the GEmox+cetuximab,this study give the overall survival rate and the PFS rate as the other did not have the OS and PFS rate.and that is important.
    God bless.

    in reply to: New to posting not to lurking #55017
    pcl1029
    Member

    Hi,Sandtdad,
    It should be included in your report fromMGH. Just ask for the whole copy and see what is included.
    Thanks in advance.
    With regard to my CC, first resection on 6/2009 with clean margin> 1cm.;on Gemzar For 14 month,decided to stop and see whether I need Gemzar for life.It did return after six month for a2nd resection due to location of the tumor is high up abut to the diaphragm,otherwise RFA with chemoembolization will do the job.(it is only 2.1cm in size).Yes there is periods of normalcy but yes,it has been also intermittent cycle of therapy and recovery.All in all, it is not bad,I can still go to work and help out on this web site and do research for this horrible disease.
    This is why we need all the help we can to find a better way for treating this cancer(more effective treatment and less side effects)and soon;not to mention about finding a cure.
    Keep reading,keep researching,with God’grace,it can be done. At the least, we know we try our best .
    God bless.

    in reply to: New to posting not to lurking #55002
    pcl1029
    Member

    Hi,Sandtdad,
    Is it possible for you to post your MGH bio markers report on the message board,I would like to see what are the differences especially on the chemo sensitivity and their recommendation. If you also has the RNA ANALYSIS , I like to see it to.it may be 10 to 15 pages long,but since I am working on my bio markers research,it may not be a bad idea to include your data for a better analysis of the outcome of the research.You can email to me thru this web site by clicking the email address under my PCL1029 ID if you cannot copy and paste your result on this message board.
    Thanks in advance.
    God bless.

    in reply to: Returning to the forum with good news and bad news #55108
    pcl1029
    Member

    Hi,Jean,
    I am a patient for 30 months with 2 resections with adjuvant chemo for 14 month.
    You have disease free of CC for 3 1/2 years without adjuvant chemotherapy is a blessing from God considering the CC recurrence rate is >65%.
    Treatment options for CC is more now than 3 or 4 years ago. Since you ask this board for insight and advise. Here is what I think you should consider if you allow me to do so.

    1. Ask for a interventional radiologist consult to see whether you can have chemoembo along with RFA to burn the 1cm tumor off instead of having the surgery ; the combination of chemoembro and RFA is as effective as open resection in some study. Do this ASAP and you may ask the surgeon if he/she is an open -minded doctor. I did, and he sent me to have it done one time instead of open resection . The reason— After the procedure you may require to stay just overnight in the hospital or you can go home the same day and no side effects for me at all.
    2. as in the last time you had before the CCA surgery done,you get a PET scan done to see whether the tumor has spread or not. If you can do a PET/CT scan before the surgery or the RFA treament for the same reason.
    3. In case you will have the surgery,if possible ,request the surgeon to have the pathology lab to have your tissue block to test for biomarkers for chemo and molecularly targeted agents SENSITIVITY ;like the “Target Now “report done by Caris Life Science(800-901-5177),Because under the ASCO guideline and vision,molecularly targeted therapy will be their research and clinical practice.
    and if you know your biomarkers and RNA genotypes;it may be helpful for more effective future treatment and less side effects.
    You can read more on my suggestion under the experience chemotherapy forum (the use of biomarkers;ASCO new Vision;) and under radiation forum(untra sound,CTscan and Pet/CT..)and especially under the PETscan section for some of the insight)

    God bless.

    in reply to: New to posting not to lurking #55011
    pcl1029
    Member

    Hi,
    Thanks .
    Just a reminder,be always aware of the drug resistance and try to research as much as you can for alternatives.(ie: other molecularly targeted agents). If the tumors shrink enough,consider other options like RFA or radioembo Y90,or chemoembolization. Cat scan or MRI or PET every 3 month to monitor the CC for early treatment options just in case. No more seafood or sushi. Somehow I always suspect seafood is a risk factor for CC.
    Keep in touch and I hope we can learn from each other.
    God bless you and your family.

    in reply to: tough day #54972
    pcl1029
    Member

    Hi,Jessiesgirl,
    To everything there is a season- a song sung by The Byrds.
    The lyrics says it all.
    And as Lainy said,”ATTITUDE IS EVERYTHING” and I agree wholeheartedly.
    God bless.

    in reply to: New to posting not to lurking #55008
    pcl1029
    Member

    Hi,
    Mass general is a very good hospital.I know they automatically perform bio markers study for each patient.That means it will provide you more treatment options .When was the most recent CAT scan or MRI done and what did it say about the tumors response especially the many small ones? Did the small ones have partial responses like shrinkage or just being stable? Are your VEGF1 2 or 3 bio markers got tested and anti-angiogenisis drugs like Avastin can be used? As far as I know,Avastin shows good results too. May I ask how old are you? And are you general in good health? How did you discover you have this horrible disease? Jaundice? Itching? Do you like seafood in general? Dark urine? Hepatitis? PSC? Heartburn? Are you on statinS?
    Thanks for your answers in advance?
    God bless.

Viewing 15 posts - 1,336 through 1,350 (of 1,667 total)