pcl1029

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  • in reply to: Hi everyone! #50567
    pcl1029
    Member

    Hi,rodo,
    This information is related to your father’s treatment.
    BTW,how is your father doing? Is there any complete or partial response to the treatment?Can he has the option to have resection or other like TACE as the following abstract indicated? please keep us inform and help others as well.
    God bless.
    #6 This is of special interest to patients who is now under or consider treatment under Dr. Bruckner,oncologist who practices in down town New York using “chemo cocktails” to treat CC patients.
    In his “multidisciplinary effect of adding docetaxel and mitomycin C to low dose multidrug therapy for cholangiocarcinoma”He states he uses gemcitabine, 5FU irinotecan,leucovorin,oxaliplatin(GFLIOx) and GFLIOx+docetaxel,mitomycin C (GFLIOx-TXT+/-MMC) to treat high risk CC patients who are unresectable and recurrent. Analysis excluded ideal patients with either tumor<5cm or well differentiated primary tumors.GFLIOx produced a 50% rate of benefit for 6 months or more and 19.5 months median overall survival. In sequence,on progression addition of both TXT and MMC produced a 90% rate of benefit,all for six mohths or more and a median survival of 10 months from time of first addition. All this benefits provide opportunities for resection,debulking surgery,TACE and Yittium 90. The findings support testing these low dose combinations in both neoadjuvant and classic adjuvant settings.It is feasible to produce opportunities and multi-year,treatment-free survivors with "palliative" low dose treatments for recurrent and unresectable disease.Secondary benefits include reduced cost and adverse events,compared to high dose standard therapy.Final review will presented in J.Clinical Oncology in 2011. #e14546.

    in reply to: Gemzar/Cisplatin chemo suspension question… #51835
    pcl1029
    Member

    Hi,Trevor,
    I don’t think so.Get stronger with the TPN first,the rest will come much easier.
    God bless.

    in reply to: Bile Duct Cancer w/Metastasis to pancreas #51828
    pcl1029
    Member

    Hi,
    I am a patient like your grandfather-in-law.This is for your information only; 2nd opinions from another surgeon and internist doctors are highly recommended .
    M.D. Anderson is rated #1 in CANCER treatment specialty at July 19,2011 in the US News & World Report .
    The others are for OVERALL rating and not for specialty.
    #1 is John Hopkins for the last 21 years in a roll.;
    #3 for Mayo clinic;
    #4 Cleveland clinic.
    #6 for Presbyterian in New York;
    #7 for UC SanFran;
    #9 Duke
    #11 Barnes-jewish Hospital
    #16 Mt. Sinai at New York
    .(I listed the one most often appeared on this site only)
    Port-a-Cath,Hickman and PICC are devices for easier access to patient’s vein(part of the circulation system) for chemo,TPN, blood infusions and other emergency medications like epinephrine when patient is in a “Code blue” situation when medications are needed STAT. But port-a cath is not a must in the “Cold Blue” situation;the ER doctor can always do a cut down to get access into the vein system if needed to.However it will much easier for the nurses to give iv medications to you grand-father-in-law if he has a lot of IV and IVPB to be administered.In that case a triple lumen PICC line makes more sense than Port-a-Cath if chemo is not considered .

    I agree with Lainy, your grandfather-in-law is 86,the age factor ,the surgical procedure of the gastric bypass,the existing cancer that is not operated on.
    I think it is time for all of the family member and the patient himself to ask at this point a question—:Should “quality of life” is worth more than the “quantity of life” now?
    God bless.

    in reply to: New to Site #51831
    pcl1029
    Member

    Hi,Sissy,
    I am a patient and have the same CC descriptions as yours .I had my left lobe removed and RFA(ablation )done at the 2 spots in my right lobe with clear margin 2 years ago; Gemzar chemo for 14 months as adjuvant therapy.

    Usually when the surgeons(liver specialist) perform resections,they will use intra-operative ultrasound to detect the CC they cannot see in the liver and do ablations (RFA) to burn the tumors dead unless the tumors are too close to vital organs.So you should not worry too much about the clear margin .
    The chemo you will receive most likely is the adjuvant therapy consist of either Gemzar or a combination of Gemzar plus one of the platin group agents like (Cisplatin, oxaliplatin);Or 5Fu.
    I am not a doctor,but I know you will do fine since the age factor is on your side.
    The prednisone you take is not the risk factor that contributed to the disease CC.

    For chronic prednisone user like you, and if your dose of prednisone >5mg daily, may I suggest you should talk to your GP to order tests like Bone mineral density(BMD),preferably of the spine;lipid profile and serum glucose to monitor and prevent osteoporosis.and you should take calcium and vitamin D supplementation daily as suggested by your doctor.

    Stem cell treatment of any sort–outside of bone marrow transplants and a few other rarely used treatments–are not anywhere close to being therapeutic use.(from Arthur Caplan Ph.D.-a msnbc contributor)
    The ONLY and FIRST stem cell therapy product that just got FDA approved in June 2011 for “improvement of the appearance of moderate to severe nasolabial fold wrinkles in adults “is Laviv (Azficel-T) . In short,there are no approved and effective stem cell treatment or protocol for CC in the States.

    Sometimes if you treat CC as a chronic disease like hypertension or diabetes
    ,you will feel much better and will provide yourself more positive energy to take care of your illness.
    CC is a long and winding road that required courage ,patience and knowledge to navigate on it . Don’t worry,you will be fine.As the bible saids in 1.Corinthians 10:13,”.


    God is faithful,and he will not let you be tested beyond your strength,but with the testing he will also provide the way out so that you may be able to endure it.”
    God bless.

    pcl1029
    Member

    Hi,Johanna,
    My doctor told me to take 2gm of fish oil (Omega-3)daily at least,I am taking 2gm twice daily to replace the problem that I cannot take the Zocor or Lipitor due to abnormal high (5-6times) liver enzymes after I took the statins.

    It is also effective if you buy some fungus from chinatown supermarket called “wood ear” or “snow ear” or”white wood ear” and make a soup of out it.(just google snow ear/fungus) and you will find a lot of recipes and uses for it.

    I did a self- study to test the effectiveness using the “snow ear soup “(3:1 ratio,that is 1 cup of “snow” or” white wood ear” to 3 cups of water ,medium heat boiled down to one cup )daily for almost a month. I got a 21% reduction in cholesterol level(that is compare the lipid profile before and after the soup experiment. well this is another hospital benefit-sorry) Yes it works but I don’t like to drink the same thing every day;it is also good for diabetes too,but I cannot confirm that claim since I am not a diabetic and did not do a self-study on the sugar.
    God bless.

    pcl1029
    Member

    Hi,Gavin,
    Besides the obvious risk factors for ICC.I cannot agree more on this paper.
    37%(a 2 fold )increase in HCC and 30%(1.56 fold) increase in ICC in their findings.

    I myself is a chronic hepatitis B carrier since birth,and high cholesterol (50-100% higher than the norm)runs in my family;my triglycerides is about 50-100% higher than the norm. But I belongs to the few who cannot take the statins ;so I ignore the whole thing for about 10 years .this is why after the 2nd resection;I change my game plan;besides eating more fruits and veggie,I have started on Tricor for triglycerides,fish oil 4gm for cholesteol,Baraclude for Hep.B ;Protonix for acid reflux and may add Questran for binding the bile acid to decrease the absorption back to the biliary system.I also learn one thing from my sister-in-law “central obesity” is real risk factor too esp. if the family have diabetes history.
    So this report is not just a report but rather an accurate assessment of the risk factor for the raising of CC population from my personal point of view.

    I will not be surprised the CC figure will be higher in America in the next 10 years if people continue to eat and pay no attention to their weight even they know about the family diabetes history.I apologize to those people now first if the following message will upset you,I am sorry.My intention is medical awareness in general,not personal.
    In my profession in the 1980s ,200lbs or 100kg patients are consider “healthy”(you should know what I mean about healthy) ,nowadays 200-250lbs (125kg)are very common and of course 300lbs(135kg) are not uncommon; and 400-600lbs (average 500lb or 230kg)are not rare. I saw a 700lb?”before I had the second resection;but if you consider most of them had underlining diseases,diabetes hypertension, respiratory problems etc. What can they expected as a patient if they don’t take care of them self first at home.
    You just take a look at the increase of the WIDTH of the wheel chair the hospital used or ask nurses you know and you will understand the obesity problem in the States.
    Good article.
    God bless.

    in reply to: A novel serum carbohydrate marker on mucin 5AC #51774
    pcl1029
    Member

    Hi,Gavin,
    If I will have the opportunity again to go to the ASCO,2012. or the DDW,2012;
    I will make sure I will look into this.It seems that the S121 protein MoAb is pretty specific (89.58%) as a marker to CC for both diagnosis and prognosis purposes.
    The key difference is that the author specific mentioned this test was able to distinguish patients with CC from other patients with other forms of GI cancers,hepatoma and benign hepatobiliary disease and health individuals.
    Good fine.
    God bless.

    in reply to: dad diagnosed with cc #51552
    pcl1029
    Member

    Hi,Wendy,
    As always this is for your info. only.Consult specialists first before changing treatment plan is a must.
    They have already found the source and switched the ABX to Tigercillin-Cluv. which is indiciated for biliary sepsis.so you are in good hands.
    Keep Nexium or Protonix twice daily for a while or at least once a day even after discharged. I take Protonix once daily for at least six month to prevent GERD or to decrease the acid reflux which over the long period of time can make the inflammation of the digestive system worse and I do not want that.
    Kepp us inform so we can help others too.
    God bless.

    in reply to: Chemo Embolization VS. Y-90 Radio Embolization #51789
    pcl1029
    Member

    Hi,
    Good choice based on what I have just researched.
    Sorry I take so long to unswer your question. I feel more comfortable this way.
    Be sure to keep in touch,so everybody can be of benefit from your mom’s case.
    God bless.

    in reply to: Chemo Embolization VS. Y-90 Radio Embolization #51788
    pcl1029
    Member

    Hi,
    After I read your previous entries, and based on what my experience of it(no side effects,may be subtle pain ;your mom may be a bit different since she had 30 or so little lesions plus a 5cm one).I will go along with JH recommendation.
    23hr hospital observation may be required or she can go home the same day depends on JH protocol.
    Chemoembro with cisplatin,mitomycin and Adriamycin alone or in combination mix with an oily vehicle or beads to inject into the liver via the groin under CAT SCAN direction angiogram. RFA may be use later to kill the tumor off or the chemoembro can be repeated to get the maximum effects out of it a month later.

    Radition with Yttrium 90(SIR-Spheres)using beads of 32 microns in size to carry the Yttrium 90,injected into the hepatic artery using CAT SCAN as a guide.
    the beads lodge in the vasculature of the tumors;The beta radiation remains localized,penetrating a mean of 2.4mm in tissue and destroy the tumor cells.Half life of the radiation=2.7days and most of them(>97% )is delivered in weeks,with almost no radiation remaining after 1 month.-company info.by Sir-Spheres.provided at the ASCO 6/2011 convention at Chicago.

    “The ideal patient to use this method would have the following:(-From SIR-Spheres company booklet 268-M-Leaf REV.1 0910)
    1. Liver-only or liver-predominant disease.
    2. Good performance status.
    3. Adequate Liver function
    4. Remaining Chemotherapy options.
    and this radiation procedure has no therapeutic effect on EXTRA hepatic disease.”

    As far as I can understand at this moment, most of the time this radiation procedure is used in combination with chemo to achieve or prolong “time to progression” of chemo alone treatments or in chemotherapy refractory patients.
    Keep in touch so we can also help others.
    God bless;.

    pcl1029
    Member

    Hi,Marion,
    This will be of great benefit to CC.(look at that bright spot after 5 days of iRFP injection,much brighter and easy to see than the PET scan.
    May be 1-2 years later(if FDA regard this is under part of the medical equipment development rather than it is a drug ),it will find its way in to the radiology dept. to help us sooner than we thought.
    and we can use it to monitor our CC every 30days using MRI to catch the smallest growth without radiation and side effects.
    Thanks
    God bless.

    in reply to: dad diagnosed with cc #51550
    pcl1029
    Member

    Hi,Wendy,
    since I did not hear from you.this is what I may suggest and
    As always,consult physicians is a must before any changes of treatment plans.

    Since I do not know about the origin (the bacteria)of the sepsis infection
    they should do blood cultures on your dad and find it out by now.
    “Hospital acquired pneumonia” is also a concern if your dad stayed in the ICU for too long.
    For UNKNOWN origin of the sepsis in which patient are not neutropenic (low WBC),no hypotension ,febrile and not life threatening:
    The primary antibiotics (ABX)are the carbapenems such as Ertapenem or Primaxin in addition to Vancomycin.If the source of sepsis is BILIARY (eg, from the stents),then the primary antibiotics will be piperacillin-taz (Zosyn)or ticarcillin-clav in the antipseudomonial penicillins group.Levaquin or Cipro plus metronidazole(Flagyl) or Cefotaxime plus metronidazole can be used as alternative to the primary.they all are given as IVPB.
    Do not worry about the creatinin,the pharmacist should adjust the antibiotics dose based on the creatinin clearance of the patients daily.Even if the patient is on hemodialysis. so check the hospital out to see they have done the blood and urine culture and find out what bacterias are,then check what antibiotics they used and whether the doctors or pharmacist adjust the dose daily for the ABX. and then should be fine.
    Taking care of the infection is the fist priority NOW. after your dad recover for sepsis as you mentioned or suspected;then choose your oncologists ,we will talk later about this.
    BTW, please try to read the “the Ultra sound CT scan MRI and PET/CT” in our experience forum,this will provide you help in understanding FDG uptake
    in PET/CT scan and know how to talk and understand the doctor’s comment about your dad. You dad is only stage II and young.You need a lot of knowledge to help him to fight the CC.
    As I always say, knowledge,patience and courage are need on the long and winding journey to help your father to get well.
    God bless.

    in reply to: Looking for advice #51745
    pcl1029
    Member

    Hi,Marion,
    Thanks for your quick response.
    I need a cold beer from Germany now; it is hot, hot, hot here and tomorrow is not much better either.
    God bless.

    in reply to: dad diagnosed with cc #51549
    pcl1029
    Member

    Hi,Wendy,
    As always,this is for information purpose only;consult doctors first is a must
    May I ask the name of the hospital your father is at now in Phillipines?
    and what are the antibiotics and meds he is on now? I will go to bed soon but I will answer you if you give me the above info. within an hour. ok.
    God bless.

    in reply to: Looking for advice #51743
    pcl1029
    Member

    Hi,Catherine,
    I found the following message hope it helps.
    Princess Margaret is the best Cancer center in the Ontario Province;So you are in good hands.My sister and two classmates of mine were treated there for breast cancer and had good opinions about them.

    Lets wait till the CAT SCAN and MRI report comes out on Friday then we can try to answer your questions better.Please quote exactly what the report said with regard to what you do not understand.
    Radiation and chemotherapy are inline with CC diagnosis and current treatment protocol,I will go with that.

    Chemo is not painful but may have side effects like nausea and vomiting and fatigue;they are all treatable side effects;take a look on our “side effects” experience forum and you will know more about them.Chemo is not a cure but will slow down the cancer growth and give the patient a chance to fight;NEVER believe what the statistic say about how long to be around.Most of the statistic are from 1995-2008 which may not apply to current new treatment plans.
    For pain,depend on the location,Advil(ibuprofen),Alieve(naprosyn),are OTC medications that can provide good pain control.
    Vicodin,Percoset,Lortab,Norco(acetaminophen+hydrocodone) are the second tier pain medications to provide more pain control but required prescriptions.
    MSIR,MSCONTIN,OXYIR,Oxycodone,Fentanyl patch and Actiq(lollipop),Fentora(buccal tablet) are oral immediately release dosage form for breakthru pain control.all require prescriptions.
    Morphine and hydromorphone PCA are normally for the patients in their last stage of pain management in hospice care setting’

    I am not a doctor,I am just a patient but I think I can help you a little bit in understanding better about CC.

    In the meantime, tell your uncle who is 58 years young that age factor is on his side and there is always hope for us-the CC patients; if we treat this disease like chronic disease like hypertension,then your uncle will have more positive energy to deal with this disease;I am sure it will not be
    surprised if there will be more effective treatments for us 3-5 years down the road.But we must hang in there until then.
    God bless
    Here are the names you may needed.-it is a recopied message from the “Marion collection”
    marions wrote:

    Hello JennyLou and welcome to our site. I don’t recall anyone being treated in ON however, we have numerous postings from patients treated in Toronto. I will enclose some links for you:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2592
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=7824
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3373
    Dr. Jennifer Knox
    Address:
    Department of Medical Oncology
    Princess Margaret Hospital
    610 University Avenue 5-210
    Toronto
    Ontario
    M5G 2M9

    Phone: (416) 946-2399
    Fax: (416) 946-6546

    and Dr. Laura DawsonLaura A Dawson, MD FRCPC
    Associate professor,
    Dept. of Radiation Oncology,
    Princess Margaret Hospital
    University of Toronto
    Toronto, Ontario
    phone 416-946-2125
    fax 416-946-6566

    Dr. Sean Cleary (surgeon) also is at Princess Margaret Hospital. All are very familiar with this cancer.
    Good luck and please, stay in touch.

Viewing 15 posts - 1,501 through 1,515 (of 1,667 total)