pcl1029

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Viewing 15 posts - 1,201 through 1,215 (of 1,667 total)
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  • in reply to: Urgent help needed blood infection #56945
    pcl1029
    Member

    Hi,
    Avelox,Levaquin,Cipro belongs to the same family of fluroquinolones with Cipro being the most cost effective treatment for the same indication.
    the minor difference will be the side effects.;
    God bless.

    in reply to: xeloda? #56988
    pcl1029
    Member

    Hi.
    don’t worry too much and enjoy this chemo free vacation till Feb.9;
    as a patient myself, no matter what stage of cancer we are in, we still live scan to scan and that is why you should not worry too much whether the new clinical trial works or not or the cummulative efffects of the chemotherapy treatment.
    I took Gemzar for 14 months,and a lot of patients taking chemo for life and still have a relatively good quality of life.
    Please let me know about your treatment plan once it gets going.
    God bless

    pcl1029
    Member

    Hi,

    It is difficult for the general public to look at a study and determine it is a good or not so good a study.
    It is also true that a study appeared on the NewEngland journal of medicine or The Lancet may seem to be of more significance than appeared on other journals. But whether it’s real value is benefiting to those who seek them remain to be seen in real terms when other unrelated research party can reproduce the same result.; when other party can confirm the same findings .this is how we know it is a good study.
    As whether the study is valuable or not to the patients or solely for the purpose of just producing papers to sustain grants allocation, that is a more difficult subject to learn and answer. And Marion is right on that.
    As a patient, I really like to use this term to represent myself because It reminds me I am part of all of you who unfortunate to know each other through this web site. The point is, as a patient, I read the info on the link before I put them up on the web and I try to explain a little more of the content in a simpler English that other patient can understand it better or easier.( this idea is from one of the e mail I received and I thank her for that; because if the info is very useful but only a few can understand the medical jargons and others don’t, what good is it to put them up here.) I think the info from that link is worth for our consideration even it is not directly indicated for cholangiocarcinoma but liver metastasis. CCA is a rare disease that I think we have to look beyond our disease for answers.
    God bless

    pcl1029
    Member

    Hi,
    This study offer hopes,in evidence-based research ,that unrectable can become resectable.( the Italian research)For those who are young and fit patient, the 5FU,leucovorin,oxaliplaitn and iriontecan combo ,even though it is very toxic,may offer hope for resection.The French study is also encouraging too.
    Try to read it carefully to get the correct idea before render your judgement.talk to the doctor about the points your are interested in the study,make sure you ask why or why not for each of his/ or her answer.The doctor may not like you to ask this kind of specific questions but deep down the know they have to look into your question and do more research.and in that respect,you,as a patient,will be benefit in your treatment as well as earning your respect from the doctors because of your knowledgable questions.
    That is all the reasons we, Gavin ,me and others try to put up related studies on this board ,yes, they are boring to read, even like this one is relatively easy one ,but you never know, if you don’try to know more and bring them up to the doctors,you may rely on just the average knowledge of the doctors had without the upto date ideas apply to the specific patient,you. Then you may miss the opportunity.
    this is also the reason for 2nd opinions,bringing up different treatment plans you know ,ask the consulting doctors for possible better different outcome in addition to what they think they will recommend beforehand.
    God bless

    in reply to: CA-19-9 #55989
    pcl1029
    Member

    Hi,
    Base on the CA19-9 labs results above ( 5/9/2011-8/29/2011),I think you may use the CA19-9 level to help you predict the response of the chemotherapy like the above study indicated. Yes, antibiotics seems to help to reduce the inflammation and therefore lowering the CA19-9 value as well.
    God bless.

    in reply to: Recurrence rate #51335
    pcl1029
    Member

    Hi,
    If I were you, I will,in addition to chemo,I will seek a 2nd opinion from radiation oncology consult . If you choose to have a FULL or COMPLETE 2nd opinion on the status of the cancer,Start with a GI (hepatologist) to get a complete picture of the liver after the resection and ask the question that you have”chemo or not chemo,radiate or not radiate,or the combination of both at the same time or one after another or just observation only . And why.” And if treatment is needed, Ask who he or she can recommend for such treatment for the best outcome.
    God bless.

    in reply to: xeloda? #56984
    pcl1029
    Member

    Hi,
    Under the experience forum on this web site,there is an adverse reaction and side effect section talking about “capecitabine(Xeloda) side effects” experiences as well as stats.
    But I think the most side effects of your clinical trial will come from the new drug especially in the phase 1 clinical trial that I think you will be on because you mentioned there is no name but only a number assign to the drug only.
    High blood pressure,high blood sugar, abnormal liver enzymes level are just to name a few.
    But if you know the new drug’s name or the assigned number,I can look it up for you of more side effects or adverse reactions.
    God bless.

    in reply to: What Chemo should be used for me? #56267
    pcl1029
    Member

    Hi, Susie,

    May be it is time to get a 2nd opinion for radiation oncology consult to look into radioembolization or chemoembolization if there is no metastasis.

    As you may know the recurrence of intrahepatic CCA is very high. Only a few can be so lucky not to have faced recurrence again.
    God bless.

    in reply to: Chemo again #56960
    pcl1029
    Member

    Hi,

    Here is a simple explanation about PET SCAN., you can read more under our radiology experience forum under the title (Ultrasound,Cat scan, MRI and PET/CT)

    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.

    A PET scan therefore can help to tell if the bile duct obstruction is caused by a cancer or benign lesions.PET scan can be useful in determining the cancer may have spread or return after treatment.
    In general SUVmax value>3.9 is an indication of cancer activity of the lesion while value<3.9 may not.But the diagnosis must also be made in conjunction with the size or the volume of the lesion that shows the SUV max activity.(the SUVmax range that I saw so far is between 2.0-36.4 in CC);and PET is more accurate when using in intrahepatic lesions than extrahepatic lesions in cholangiocarcinoma diagnosis.
    But please remember.NOT all the HOT spots(SUVmax>3.9) are cancerous. it depends on where the hot spots are located.

    PS..I just notice that you are in Canada,therefore they may use CAT SCAN only unless otherwise indicated, it is all about money issue I guess that is why the doctor may react to your question that way.

    As a patient myself, I do understand why your husband acts that way ;it is because we are afraid of our future;we are afraid of the outcome of the treatment that will fail us and above all we are afraid of losing the control of our lives. Really there is not much you can do,but support his decision whatever it may be. Radiation may be an alternative to chemo; ask your GP to refer you to see a radiation oncologist to see radioembolization or chemoembolization or RFA may be an option for your husband . good luck and

    God bless.

    in reply to: CA-19-9 #55987
    pcl1029
    Member

    Hi, Kris.

    Thanks to Tim again,you can go to the GI ASCO2012 web site as he puts up here on the” announcement forum” and look at abstract #287.
    I believe this is the first time I see a study like this for CA19-9.using a baseline level of 1.5 times above the upper limit of the normal CA19-9 value to predict the outcome .
    Please also remember the patient pop. is only 79 patients and besides the CA19-9 as a predictor, disease extent were also another independent predictor of survival for CCA patients undergoing chemotherapy treatment as mentioned by the author.Therefore the 20% decline rule of CA19-9 vs positive treatment outcome prediction may not be applicable to ALL patients in the 50% group(40patients) who have a CA19-9 response to chemotherapy.
    God bless.

    pcl1029
    Member

    Hi,
    You are in luck to day,Tim just put up abstract # 268 from his volunteer work in attending the GI ASCO 2012 convention for us and that will give you some evidence based answers to your questions.

    • (Abstract #268) Cholangiocarcinoma: A joint cancer database analysis. Presenting Author: Yehuda Ethan Deutsch, University of Miami Sylvester Comprehensive Cancer Center, Miami, FL

    God bless.

    pcl1029
    Member

    Hi,
    I think IMRT followed by 6 month of Gemzar is an appropriate course of treatment for patient who cannot have surgery due to the location of the relatively small size of the tumor that RFA cannot be performed.

    due to the limited knowledge that I had, It is difficult to answer your question. I think the benefit of radiation alone or in combination with chemotherapy(either before ,concurrently or after radiation) depends on the patients’ general health,the disease state of the tumor and the judgement of the attending medical oncologist,surgeon and radiation oncologist as a team.
    For myself,less is always better.
    God bless.

    pcl1029
    Member

    Hi,
    Yes ,Stereotactic radiosurgery (SRS) and SBRT is similiar to the above.
    attach is a link for more info.

    http://www.radiologyinfo.org/en/info.cfm?pg=stereotactic

    God bless.

    in reply to: Brought home #56822
    pcl1029
    Member

    Hi, Nancy,
    I agree with Margaret that once you have this cancer;it is very difficult not to think about recurrence even if you had clean margin>1cm like me;or had liver transplant like Trevor on this message board.As we both had recurrence recently.
    I do not drink alcohol,I do not smoke ; However,I do strongly suggest not to take statins for cholesterol problems. Yes,there are great benefits from the statins but liver enzymes elevation are the problems since DAY 1 when statins were introduced.and that is why it requires patients who are on statins need to check liver enzymes regularly;or at least in the first 6month period.
    The KEY to understand how to control or prevent recurrence is to eliminate or discover what cause the INFLAMMATORY process to occur in the liver; is the diet that induce the inflammation? is the micro-environment in the cell level cause changes and turn our liver or bile duct cells into cancer cells because the drugs or the food we take?
    Liver is the only organ that can regenerate itself;and it is also an organ to filter and clean the toxins and impurities in our blood like a garbage disposal.;to decrease the impurities and toxins to pass through the liver may be a way to decrease the chances of causing the inflammation to the liver and therefore less the chance to have this cancer or the recurrence that will follow. It only takes one cancer cell to regenerate along with the good cells to cause recurrence.
    To answer your question of early detection of this cancer,the following is my observation.
    There were no symptoms(or warning signs) for me . base on my experiences, I will recommend to those no matter how young or old you are, if you had medical history of indigestion; acid reflux problems or heartburn (ie; you are taking Tagamet ,Mylanta or Peptobismol. Maalox;Nexium,Pepcid, Prilosec OTC off and on for that purpose) ;easy to get tired for no reason; dull back pain off and on;weight loss of no reason(>4-5lbs over a couple months);on statins for quite a while or you are overweight in your age and gender group.
    Try to get a CAT scan Rx from the GP or find a reason to go to ER to have the CAT SCAN OF CHEST,ABDOMEN AND PELVIS done, or at least the ultrasound of the liver done . this is the ONLY way to find out this cancer BEFORE symptoms like dark urine,clay color stool or jaundice ,yellowish eyes and skin,itching etc.shows up.When symptoms show up, normally speaking,the cancer will be in the late stage of the game and the choice of treatment is very limited.
    BTW,I am only a patient and not a doctor .
    God bless.

    in reply to: Patterns of recurrence after resection of intrahepatic … #56851
    pcl1029
    Member

    Hi,
    I did read about this study,for PATIENTS like me, I will say that the recurrence rate of 75% -78% is a bit on the high side for CCA due to the fact that the data collected was from 1973-whatever year. The surgical technique had been much aggressive and improved since 1973.
    But the fact remains that recurrence rate is still high(>65%),and the benefit of adjuvant therapy is still debatable.
    Most of us,patients, are in fact like sitting ducks, living our life from scan to scan and cannot help ourselves actively and directly even if we try hard because there is not anything effective out there at this time. Yes, at times, I am very discouraged. But we,as patients, really have no choices but waiting,eating well,and trying to deal with the bad news as early as possible in order to provide more treatment options for ourselves and I think that is the best thing we can do for us now.
    God bless.

Viewing 15 posts - 1,201 through 1,215 (of 1,667 total)