pcl1029

Forum Replies Created

Viewing 15 posts - 121 through 135 (of 1,667 total)
  • Author
    Posts
  • in reply to: dad was diagnosed with CC in may, 2013 #77611
    pcl1029
    Member

    Hi,
    In the hospital, they will use heparin for the blood clot for a few days to 2weeks, then after a few days when condition allows they will start either Coumadin or Lovenox and this will be used too when your father discharged home to prevent further development of the same.
    The most important thing was your father had the chance of a possible cure for this disease. What a Christmas gift , you cannot ask for more than this . Enjoy while it last.

    God bless.

    in reply to: Is anyone taking cabozantinib (cometriq)? #77571
    pcl1029
    Member

    Hi,

    Not did i know of anyone on this board taking cabozantinib.

    God bless.

    in reply to: update on tom #77563
    pcl1029
    Member
    PCL1029 wrote:
    Hi,

    Sorry I do not know the financial or charity assitance in your country. But according to the ESMO(giudelines from the European Socierty of Medical Oncology):

    For post-op treatment after a noncurative resection of intrahepatic or extrapetic cholangiocarcinoma,supportive care alone, chemotherapy alone and radiotherapy with or without chemotherapy are aceptable options.

    That means both opinions from your Holland doctor as well as the Germany one are correct.

    The choice is difficult between “quality or quantity of life.|

    God bless.

    in reply to: update on tom #77560
    pcl1029
    Member

    Hi,

    Sorry I do not know the financial or charity assitance in your country. But according to the ESMO(giudelines from the European Socierty of Medical Oncology):

    For post-op treatment after a noncurative resection of intrahepatic or extrapetic cholangiocarcinoma,supportive care alone, chemotherapy alone and radiotherapy with or without chemotherapy are aceptable options.

    In the States, clinical trials are encouraged;otherwise, chemotherapy with GEM or 5FU based or supportive care. for intrahepatic CCA with positive margin,options include reresection,ablation,or5fu sensitized chemoradiation.

    Happy Thanksgiving holiday and

    God bless.

    in reply to: Is this good news? What to do next? #77565
    pcl1029
    Member

    Hi, Jules,
    Since I am only a patient,before I render my opinions,
    the link below may help.and if you have further questions after reading the links below. I am happy to answer them.

    With regard to the adrenal mass,it can be benign or malignant. the best way is to compare old scans even dating back the first Ct scan a few years ago to see whether the size of the adrenal mass is there or enlarged. Adrenal mass is not always adrenocarcinoma; and that is why you had different opinions from doctors.PET scan is a good choice if you do not need to pay for it in order to establish a baseline SUVmax value to compare with future PET scans.

    the message was from Dannyk86

    http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1210026648

    DR. Khan and Prof. Cummingham are the doctors with a lot of experience of CCA in England.

    Gavin just put out messages about SIRT in Scotland and
    the link below

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10921

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=80626#p80626

    Now the question is to try to find out where you can get SIRT outside Scotland,
    if surgery is not and option from The imperial college of London and prof. Cummingham.
    2nd opinion for SIRT treatment is appropriate at this point due to the large size of the main tumor as well as the other small ones; but be sure the patient is physically up to it, and try to do it as segmental rather than for the whole liver to minimize the toxicity.

    In short, do surgery first if offer; chemotherapy or targeted therapy such as erlotinib (Tarceva) second and segmental SIRT (NOT the whole liver if possible)as the last option.

    Happy Thanksgiving and

    God bless.

    in reply to: my father having cc. #77409
    pcl1029
    Member

    Hi,
    For hilar CCA, it is not uncommon that CA19-9 is >37, the upper limit of the normal range;, it can go much higher than that (ie: in the thousands).

    BTW, tomorrow is the Thanksgiving day holiday in the States, it is one of the most important holiday for family and friends to get together and enjoy each other’s company. So happy Thanksgiving to you too.

    God bless.

    in reply to: my father having cc. #77407
    pcl1029
    Member

    Hi, Faisal,

    First of all ,I am not a doctor,I am just a patient.
    I presume the surgeons that told you your father CCA was unresectable after they opening him up are GI surgeons; did the surgeon told you the REASON why the tumor cannot be resected at that time. Are they LIVER surgeon and not just general GI surgeons. If not ,seek a 2nd opinion by a liver surgeon is my suggestion especially your message above stated that “liver:shows evidence of pneumobilia(free air,may be due to the procedure of insertion of the stents) and stent seen in site..No definite FOCAL lesion seen in liver parenchyma…
    No obvious extraneous mass lesion seen in the region of porta hepatis … unless what it means is EXCEPT the original tumor,the new finding on this scan is irrelevant or unrelated to the subject being dealt with(ie: the original findings of the tumor.) and if otherwise, this is a very good news.
    btw, THE SCAN NEVER REPORTED ANYTHING ABOUT THE COMMON BILE DUCT AND ANYTHING INVOLVED THE LEFT AND RIGHT HEPATIC DUCTS, PORTAL VEIN AND HEPATIC ARTERY JUST BELOW THE PORTA HEPATIS.

    I know you may intent to just put out the most important part of the scan and may not the completed (full) report as you use the …. at the end of some sentences and i understand;but if your father did not have any other health related problems, then the following suggestion and the above ones may be of help to you.

    “Previous CT Scan shows tumour at the level of porta….! But now the report said:”No obvious extraneous mass lesion seen in the region of porta hepatis …”
    What is your opinion in this regard???” .
    This is rather surprising to me too. I guess the GEM/CIS works and shrinks the tumor completely (complete response?)or the stent works .(some stents are coating with chemotherapy agent to block further growth of the tumor at site of insertion. You need to bring this finding up and ask the oncologist why he/she want to stop the GEM/CIS chemotherapy since according to the recent scan, the tumor is no longer there and it seems the chemotherpy is working, ask for the specific reason not to continue the GEM/CIS.
    How about getting another MRCP to confirm the CT scan findings for further treatment plans.
    I am not in India, and not familiar how the medical systems work. But I know ,if financial matters is no concern, There are excellent private hospitals as well as specialty surgeon and doctors in most of the Asia countries that can provide the same if not better care for their patient than the States here.

    God bless.

    in reply to: Help – your advice needed #77500
    pcl1029
    Member

    Hi, Porter,

    Yes Y-90 is the same as radioembo . the same as SIRT .
    Y-90 come in with two mediums (as resins or glass particles) but the delivery method is the same. The effectiveness are basically the same .

    God bless.

    in reply to: Help – your advice needed #77498
    pcl1029
    Member

    Hi,
    I know at least Jason,Pamela and Holly have given their opinions and experiences to you based on the messages you had with them on this board.
    I think they have given you the best of their experiences and knowledge .
    I know Jason wrote to you in one of the message that about what he thinks about the radioembo but he also mentioned” it is not the time for his wife for having this procedure.” He did not say it without studying and asking questions. I know he did a lot of researching on this and you can do the same by reading the past members’ experiences,case by case, on this board,under section of Radiation Treatment.
    God bless.

    in reply to: Help – your advice needed #77496
    pcl1029
    Member

    Hi,
    It is the experiences and outcome of our past members who go thru radioembo as well as the medical journal articles that I read over the last couple years.

    It is my choice based on the knowledge I learn so far and it does not mean radioembo not work either.,but it is not for everyone .

    God bless.

    in reply to: Help – your advice needed #77494
    pcl1029
    Member

    Hi, Jz,

    Thanks for your compliment.
    As you know, there are our moderators ,nurses,cytologist,and sometimes doctors and other medical professionals will response to our members discussion board message and I am only part of the team.

    Interventional radiologists(IR) and the medical articles that I read mostly agree that for intrahepatic tumors ,if the LOCATION of the tumor is not a problem, the SIZE of each tumor is <3cm and/or no more than 3-4 tumor IN NUMBERS; chemoembolization followed by RFA or microwave ablation or IRE will have the same effectiveness of resection.
    For lymph nodes nearby the liver ,depends on the location and size, cryoablation or IRE can be of use to ablate the tumor without using HEAT.
    BTW,I am actually testing out the above procedures for my third recurrence.
    and I will let the members know exactly what I think the result is actually match what the books and experience said or not.

    For lungs, RFA,IRE or microwave ablation can be used to burn off the leison ; follow up with adjuvant chemotherapy or targeted therapy and with PET scan every 3 months for confirmation of the effectiveness of the IR treatment.
    Stanford is one of the best IR for 2nd opinion in the west. and I see why not to give them a try for a 2nd opinion.
    Your dad is 63,the same age as me,unless he had other co-exist diseases at the same time that will affect his overall risk of having IR treatment. I do not see any problem for IR procedures;

    Most of the IR procedures are outpatient procedure and can go home the same day. The only problem IR procedures are palliative in nature and not for cure.( but I have 2 successful resections and still have 3 recurrence,so resection is ONLY a POSSIBLE cure ; the recurrence rate for ICCA is 50-80%)

    If they(Standford) offer your father radioembolization ; and If I were your father, I will only choose it as my last IR option.

    God bless.

    in reply to: Help – your advice needed #77491
    pcl1029
    Member

    Hi,
    If I were you ,I will do RFA on the liver and for the lungs too.
    The lymph nodes and the lungs are the mets of CCA to go first.( lymph nodes are local regional mets and the lungs are distance mets ).
    God bless,

    in reply to: my father having cc. #77403
    pcl1029
    Member

    Hi,

    First find out why your father cannot have further treatment.(very important)

    Second, get a current CT scan to compare to the last one to check out the current tumor situation to determine the next best treatment plan.

    Third if there are no contradiction to continue treatment based on the above information, if your father ‘s bilirubin level is acceptable by the doctor, and the liver enzymes is normal, especially the ALK phosphate ;and your father’s lab work of platelets etc.are ok, and if the CT scan done or will be done after the 6th dose GEM/Cis and show tumor shrinkage or no further growth of the tumor(stable); and your father is relatively heathly with no other disease like kidney problems; then ask your doctor to continue the GEM/CIS till your father cannot tolerate the GEM/CIS.
    or ask your oncologist to consider whether targeted agents such as Tarceva® (erlotinib) is proper for your dad.
    Systemic treatment in your father’s case is one of the beast opinionat this point.
    Get a second opinion by an other oncologist or GI oncologist to confirm treatment is highly advised.

    God bless.

    God bless.

    in reply to: PET Scan for Hepatic Mass (cholangiocarcinoma) #77441
    pcl1029
    Member

    Hi,
    having multiple SUVmax value that means you may have more than one tumor that show tumor activity(metabolism) .
    God bless.

    in reply to: SBRT for Cholangiocarcinoma #77447
    pcl1029
    Member

    Hi, Mary,

    If swelling of the legs is the only problem, then you will be fine. Some oncologist add mannitol to the GEM/Cis regimen for the purpose as a diuretic., but others don’t.
    Normally around the 6th or 8th doses of GEM/CIS, you will know whether you can continue the regimen or not since the accumulative toxicity of the regimen will tell whether your body can tolerate the regimen or not. if not, then GEMOX will be a less toxic regimen than GEM/CIS with regard to the kidney. GEMOX is a better tolerated regimen,but neuropathy is one of the side effects for GEMOX.
    God bless.

Viewing 15 posts - 121 through 135 (of 1,667 total)