pcl1029

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  • in reply to: My Dad #51514
    pcl1029
    Member

    Hi,sorry I don’t know the answer with regard to CC and sugar;may be others can answer this question for you.
    Always ask for 2nd opinions when possible and do not believe in statistics;most of them were 10-20 years old complied with old data between 1990-2005.the new and availability of treatment options developed and being investigated and used provide a much improved outcome for the treatment of cc and thus the statistics in the past 5 years although much needed in new treatment plans are still badly needed.
    If the BS is 26,I think you should give orange juice or sugar to bring the level up to a saver range like 80-100 first and call your doctor to adjust the insulin or oral dosage of the diabetic medications for you.An endocrinologist consultation is also highly recommended if possible.
    If your father has a pacemaker,you can ask the doctor for a CAT SCAN with contrast to determine the current disease state of the cholangiocarcinoma.MRI is another device that can also see the inside of the organs.
    Depends on whether it is intrahepatic CC or extrahepatic,there are other means to control the tumor by using radiation therapy.
    God Bless.

    in reply to: Good reports from Mayo #27413
    pcl1029
    Member

    Hi,
    Second opinion is strongly recommended for a 43 year old like your husband because age advantage is on his side.
    If your husband’s CC is intrahepatic(tumor original from the bile ducts in the liver)did they tell you is the tumor resectable or not and why? Is it because of the lymph nodes involvement or the CC is too close to the portal vein or the main artery? or they just first want to shrink the tumor then do resection later?These are the questions you should ask them and Mayo Clinics.

    ;if you cannot open the above link ;his entry is under the chemotherapy forum on the web site.
    These are the current chemo treatment plans available to the physicians apart from the clinical trails that most of them will contain a molecularly targeted agent like Tarceva,Avastin or Nexavir or Erbitux to improve the overall survival rate to a better percentage;but they also come with additional side effects.
    God bless.

    pcl1029
    Member

    Hi,
    May be all that are just scarring tissues in the lung and nothing else.
    I will say a prayer for your mom.
    Take good care of yourself.
    God bless.

    pcl1029
    Member

    Hi,Gavin,
    thanks for this info.
    I do not understand why that hospital just do TACE only ONE time for all the patients population;In the States,usually they will do multiple times of TACE to control the CC to control the recurrence if applicable.
    In addition to that the 1,3,5 years OS(overal survival)with TACE once only and without are 69.8%,37,2 and28.3 compare to without TACE,the control group ,are 54% 25 and 20.8% which are not bad at all.Imagine if they repeat TACE like in the States,then the outcome will be much better even on the(RFS) recurrence free survival.
    God bless

    pcl1029
    Member

    Hi,Johanna,
    After I read your case from all the info you posted.(because each patient case is different,I have to do research on your CC first);59 years is young enough to hang in there until a new drug will be found more effectively to treat CC.
    In the meantime, as far as your case is concern,I will keep on using the chemoembo treatment to continue shrink the original 10cm tumor.and get a Cat SCAN or MRI with contrast EVERY 3 MONTH to monitor the progress of the chemoembo treatment(TACE); that is the only way to tell whether you get any result from the TACE.
    Since you did not have metastasis when your CC first diagnosed and you did gem/cis systemic treatment a while ago; and you use MRI to monitor your case;I do not believe you need to worry about metastasis now but may be down the road; if you want to know for sure;ask your doctor to order a PET/CT with contrast and it will tell you the answer.
    I did read articles about CC metastazied to the liver,lymph nodes ,omentum and to the lungs at the time of the first diagnosis but not new locations once they are on treatments if they are effective;mostly the metastasis will be benefited too once treatment is provided.Systemic treatments provide the greatest coverage when CC involved with metastasis,since the chemo goes thru the entire body whether than locally as TACE that now your are receiving.
    For your case,other options included SBRT,TARE,chemoradiation, and clinical trial. Remember, it only take one cancer cell to invade the patient’s immune system successfully to cause recurrence.
    “Local disease control with TACE is possible in up to 76% of patients,and the outcomes might be improved with systemic chemotherapy.
    Although small,localized lesions are seldomly encountered,local ablation might be considered if complete tumor necrosis can be achieved and there is no evidence that the tumor has spread.Ablation might be considered in patient with local recurrence”-from Tushar Patel vol.8 April,2011 Gastroenterology & hepatology.
    I hope the info. helps.
    God bless.

    in reply to: MY DAD 2ND ROUND OF GEMZAR, CAN ANYONE HELP? #51488
    pcl1029
    Member

    Hi,Mark,
    I have just copied my 14 month experience on Gemzar .
    I hope it will give you some ideas on Gemzar as mono therapy.
    For the question about the efficacy fo Gemzar alone and how long a patient should be on Gemzar;the reply from the drug manufacturer Eli Lilly of Gemzer is “until disease progress or unacceptable toxicity.”
    My personally view about this CC disease is that unless a new drug is found, the use of systemic therapy is to keep the cancer cells at bay ,it will not cure the disease;all it will take is one of them to invade the patient’s immune system successfully and cause us trouble all over again.

    As always, please confer with your doctor first before any change of Rx. This is for informational purposes only.
    BEFORE Tx
    1.Give lorazepam 0.5-1mg or alprazolam,same dose, by mouth 30min. before the start of chemo for anticipatory nausea/vomiting purposes.
    DURING Tx
    2. As pre-medication prior to gemcitabine to control nausea/vomiting ;Ondansetron(or granisetron or dolasetron)+ dexamethasone(a cortical steroid) as IVPB will be given over 30minx 1dose.(dose determined by body surface area of the patient).
    3.Gemcitabine sholud be given just for 30min and no more than that in duration in order to minimize the side effect.;I always make sure the nurse understand this.(this only apply to monotherapy of Gemzar)
    AFTER Tx
    4. Then when you are home,take 25-50mg of benadryl(diphenhydramine)-an antihistamine and 0.5-2mg alprazolam or lorazepam together with sips of water and go to bed right away, if he needs to vomit,let her do it first,then take the med and go to bed ;he will wake up in about 3-5 hour and will feel better.Encourage her to drink water or juice or soy milk as much as possible especially in the first 8 hour after gemcitabine.(ie;3-4 glass of 240ml size /day or more) to flush out the gemcitabline to minimize its side effects.
    5. I do not need any other meds to control the N/V until the next week of chemo;but if you dad needs it,ask to doctor to have some promethazine 25mg on hand for nausea /vomiting and take it by mouth every4-6 hour as needed.
    For diarrhea,Imodium or Lomotil are the choices, Take one by mouth every 4-6hrs AS NEEDED for diarrhea and not to use more than 8 tablets/day.

    Again, every patient is different in physiology and the state of health at time of diagnosis. You MUST consult your doctor first for his recommendation .
    God bless

    Online

    pcl1029
    Member

    Hi,Gavin,
    How are you? I did not see you come on this web site as much and often as I have seen a few days ago.Everything OK?
    I am still reading the above link of that stem cell article,very interesting but I am still working on it. it is long and I need to go back to study the current biology principles before to have a complete understanding about the whole picture;Thank for your research.
    Say Hi to your parents for me.
    God bless.

    in reply to: NCI’s Clinical Trials Cooperative Group Program #51483
    pcl1029
    Member

    Hi,Marion,
    Are you back from vacation now?
    BTW,How can I apply the above interesting in order to help myself and others?
    I am still digesting the emails you send to me,will give my thoughts on them later. I am still not 100% before resection but much better by the day.
    God bless.

    in reply to: perfect labs 3 months ago #51493
    pcl1029
    Member

    Hi,
    First thank you Kathyb to pray for me while I am in the hospital.
    For devastated , I do not think physical exam can provide a thorough picture of a person’s health except when the disease state is so obvious that the symptoms such as an increase size of part of the organ(ie; the prostate ; seeing curving objects; prolong color change of the skin as well as the reflex of the nerve system etc. can be seen by the doctor); I will request the doctor at the physical exam next time to include at least an ultrasound of the abdomen or much better a Cat Scan with contrast of the chest,abdomen and pelvis.In that way along with a CBC and BMP and lipid profile labs ( just ask the doctor for these)will provide a much better exam of you with regard to your internal organ’s health as well as the systemic functional health of daily balance of electrolytes and hemetological (blood cells) health.. You may need to get your GP to agree with you on a reason to prescribe a CT scan for you. Call or wait for a CAT SCAN special from your local hospital and take advange of it. This is especially useful for people over the age of 50. Colonoscopy , EGD and other test will follow if they find abnormality .
    I hope the info helps.
    God bless.

    pcl1029
    Member

    Hi,
    I presume the doctor you will consult tomorrow is an oncologist;
    Gemzar/cisplatin ;Gemzar/oxaliplatin gemzar/xeloda is the first-line systemic therapy they may offer to your husband. In your case,you can ask the oncologist whether it is beneficial to add a molecularly targeted agent such as erlotinib,sorafenib or bevacizumab.
    When you have lymph nodes involvement, it may due to other disease such as infection but most of time,if they confirmed metastasis they will not do surgery but give chemo first to shrink the tumor and the lymph nodes and then perform surgery later if they can in hoping for a better surgical outcome.
    Columbus ,Ohio University Clinics and Hospitals may be another place for you to consider since they also provide clinical trail at this moment for unresectable bile duct cancer using Gemzar/xeloda and bevacizumab and their team is familiar with CC.
    God bless.

    pcl1029
    Member

    Hi,
    I am not a doctor ,I am a patient just like your husband and being a nurse and know nothing about CC until now is nothing wrong with it; you ask 10 doctors(GP) now and some of them may even don’t know how to pronounce cholangiocarcinoma.So please do not be ashamed but rather you should feel you are in the right profession to help your love ones.
    If I may ask, is it intrahepatic(that is the primary tumor start inside the liver) CC or ductal(Hilar or near the small intestine) cc;it makes a difference in treatment plans; also if you can tell me about his lab value of ALK phos,AST and ALT;total bilirubin;CEA and CA19-9. did they tell you the stage of the cholangiocarcinoma?
    Multiple lesions in the liver may preclude re-section;5cm is not consider a big tumor but multiple (more than 4 or 5) leisons will put your husband in stage 2 or 3 depends on the locations of the lesions;lymph node involvement also a factor ;but if the lesions are away from the portal vein and main arteries surgery will be possible even though with more than 3 or 4 lesions.The health and age are also factors in determining the course of treatment.
    Currently there are no systemic therapy are 100% effective but other options such as PDT,SBRT for ductal cc and RFA,Chemoembo for intrahepatic cc are available from radiology.
    God bless.
    Bring a recorder to record the conversations tomorrow and I will help you if you need me.

    in reply to: Mom just diagnosed with CC #51446
    pcl1029
    Member

    Hi,Katie,
    If possible,please quote exactly the part of the CAT SCAN report directly about the”20-30 nodules “so that I will have a better idea about your mom’s condition.
    Can your also provide the blood work(inside the BMP report) of ALT,AST and ALK Phos and tol.bilirubin,CEA and CA19-9 and or AFP if you have them?
    I am not a doctor,I am just a patient but I think I can help you in understanding your mom’s case a bit more.
    Gamzar/cisplatin;Gemazr/Oxaliplatin;Gemzar/Xeloda are systemic therapy to name a few;5FU and bevacizumab or erlotinib are among others.
    Depends on your mom’s condition,location of the nodules,other non systemic treatments such as RFA,chemoembo and Sir-spheres are available in the radiology department of hospital.
    In the meantime,
    God bless.

    pcl1029
    Member

    Hi,Marion,
    Thanks for this info.,I will never have enough time to search everything and read everything;that is why everybody’s help is vital .Thanks again.
    Our livers produce cholesterol and cholesterol produces bile acids to digest proteins and fatty acids in our small intestine .Statins are used to treat high cholesterol by inhibiting the synthesis of serum lipids and triglyceride.

    In this study ,only the HYDROPHOBIC statins(atorvastatin-Lipitor,simvastatin-Zocor,lovastatin-Mevacor and pitavastatin-Livalo) can provide the added benefit of induce apotosis and inhibit proliferation in cholangiocarcinoma cells.Other statins like Pravachol,cerivsatatin are hydrophilic and will not have the same benefit.
    The pre-treated cholangiocarcinoma cells with statins (in vitro) after 96 hours indicated that the future of inclusion of the statins in anticancer treatment regimens may reduce the amount of anticancer drugs used( such as 5FU,Gemzar and Cisplatin) and therefore the side effects that come along with them.
    God bless.

    in reply to: VERY CONFUSED???? NEED ANSWERS:( #51401
    pcl1029
    Member

    Hi,
    If I may suggest; and if the diagnosis is just “stones in the common bile duct” ,then I will say,your father ,in heaven now,is in deed still looking after his soul mate since 1954.
    Stones are not cancer and can be removed easily.And based on the length of time that your mother had the original diagnosis ,no medications taken and so few stents changes and CA19-9 is so low with regard to her ductal CC since Jan.2007.I will say ,if the current diagnosis holds true after other testing, this will be the best gift for your mom and your family .
    God bless.

    pcl1029
    Member

    Hi, Lesley,
    It helps in a way that I know what to ask for the pathology dept of the hospital to have the ” unstained “slides and the thickness of them. But Lesley, I think we both are thinking too far ahead of the biomarkers technology.
    I don’t think most of the lab can do “unfrozen cut” of the tissues submitted by the surgeon. I think the specimens must be frozen to be solid enough for cutting.
    This time due to the pathology report indicated there are only focal atypical ductal epithelium and no definitive carcinoma identified.Therefore after talking to the doctors;we both agree we will not do the biomarkers for chemo-sensitive testing .
    The EGFR,VEGFR1,VEGFR2 RRM1 and ERCC1 were suggested by my oncologist but he indicated there are no consensus or criteria or protocol among the oncologists to really look into them and use them to the best way they should and the sensitivity of each test is not well standardized .
    In short, these kind of testing may be a few years head of its time.

    The following is copied from Gavin’s research on the “Web Forum”,take a look at it and you will have a better idea about this kind of testing.

    Again, if we all work together and contribute our share,I believe the next 5 year will be very exciting in CC research.
    God bless.

    GWU Researchers Awarded $500K by NCI to Develop Biomarkers for Bile Duct Cancer

    June 16, 2011 it the link will not work,just go to the “web forum” look for Gavin’s June 17 entry title (GWU


    );and you will find it.

    http://www.genomeweb.com/proteomics/gwu-researchers

Viewing 15 posts - 1,546 through 1,560 (of 1,667 total)