pcl1029

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Viewing 15 posts - 736 through 750 (of 1,667 total)
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  • in reply to: Hi! new to this site #64507
    pcl1029
    Member

    Hi, Leslie,
    I just add another article( the 1st linked article) to the message that I had wrote earlier and revised the 3rd link to add to the content .
    2nd opinion is recommended and the best place that near you is Chicago ,the interventional radiology dept. at Northwestern University . They are the pioneers of radioembolization.
    ( please remember the technique and experience of such procedure required experienced hands to do the job.)
    God bless

    in reply to: Hi! new to this site #64502
    pcl1029
    Member

    Hi,
    If I may,may I ask the following questions to help me understand more about your husband’s situation. I am not a doctor, I am just an older patient(63) who have the same disease of your husband for 39 months.

    1.Can you tell me what chemo agents in the 14 chemo are? Is it Gemzar and cisplatin? and how big are the tumors now.
    2.Is it the Liver surgeon(not the general GI doctors in the hospital) who told your husband could not have the liver resection or the oncologist or radiologist? and why?

    In general, If the sizes of the tumors are <3cm and less than 3 or 4 tumors;and if they are in reachable locations; RFA(radiofrequency ablation) first and chemoembolization performing at the same time as one procedure and hospital stay one night over will be the best option. for the large one like the tennis ball( about 8cm in size),chemoembolization with adriamycin,
    cisplatin and mitomycin in suspension injected directly into the liver tumor via angiography while you are half sleep is the best choice if you want to go this route. I reserve my opinion on the suggestion use of radioembolization for your husband until they give you a satisfaction answer of why they want to use it instead of RFA and chemoembo and change of chemotherapy first..I am just afraid now every doctor wants to jump on the radioembo wagon and that may be the reason why?(see side effect and other related messages on the experience forum under the heading Radiation treatment and options on our message board.for radioembolization);
    Check out the link below for further info.
    http://www.hindawi.com/journals/ijso/2011/571261/

    http://www.sirweb.org/news/newsPDF/facts/Liver_Cancer_fact_sheet.pdf

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=65367#p65367

    Again I am not against radioemo,I just want patients and caregivers know that other options with similiar or better results can do the same job before trying the relatively new procedure. Radioembo will definitely has its place on the treatment of liver and CCA diseases in the future.
    However, systemic chemotherapy is another choice;they can use other chemotherapy agents to treat your husband too.
    I suspect your husband’s tumors are located in different segments and lobes of the liver and thus radioembolization is the procedure than RFA and chemoembo combined together.
    But think twice before just accepting what the doctor said esp. the other tumors are <3cm and less than 3-4 in numbers.(RFA is as effective as resection if tumor sizes is<3 cm of each tumor and not more than 3-4 or 5 total in numbers of tumors-chemoembo right after RFA add overall additional treatment enhancement) .Just make sure your husband has enough liver reserve left and the tumor burden ( all tumors combined together is not too much for the body to endure the hardship of chemoembo or radioembo.)
    keep in touch and
    God bless.

    in reply to: Fluid Build-up (Abdomen and Extremities) #19810
    pcl1029
    Member

    Hi,
    If your mom still in the hospital, ask to see a renal specialist ( nephrologist) to check out what he can do with the ascites. ( fluids and imbalance of the electrolytes, )
    Bumex ,another diuretic ,which is a lot stronger than Lasix,may not be a good choice for your mom if the ascites volume is not that large. Anyway, Bumex in some part of the States is currently in short supply or back order.
    But get an opinion from the nephrologist and see what he will do.
    If your mom have Shortness of breath, check it out with a lung specialist( pulmonologist) at the same time. Fluids dynamics is important and there are ways to correct them metabolically.
    Read more if you like from the link below.
    http://emedicine.medscape.com/article/170907-treatment

    God bless.

    in reply to: Second Opinions #64411
    pcl1029
    Member

    Hi,
    See Dr. Javle for 2nd opinion first on chemotherapy,if still not sure, then go for a 2nd opinion at Mayo with Dr. Gores for GI and liver consultation if no mets to other parts of the body.
    God bless.

    in reply to: Fluid Build-up (Abdomen and Extremities) #19809
    pcl1029
    Member

    Hi,
    tomorrow, ask the oncologist to see whether he agrees to increase the Lasix dose to 40mg. Lasix should start to work within a day or two in normal circumstances .
    If the oncologist ONLY ,( again I emphasize the word ONLY) wants to use 5FU IV for your mom.; please ask him whether your mom can have the oral form of 5FU called Xeloda at home. it is much easier and convenient for your mom. If he.she says no, make sure ask why?
    I would love to hear the answer.
    God bless.

    in reply to: Intro from 28 year old in Greater New York area #64450
    pcl1029
    Member

    Hi,
    Welcome to this site.Thanks for Cathy’s e mail, I have found out that your chlangiocarcinoma mets to the bone of your left leg.May I ask what chemotherapy you used .Base on the CT scan on your blog,the intrahepatic tumor looks more than just one big one.
    anyway,if you have questions in the future,welcome to ask us anytime; I am not a doctor ;I am just like you, a patient of this disease for 39 months.And as always, there are other people can be of help to you too.
    God bless.

    in reply to: Yttrium-90 Radioembolization #64413
    pcl1029
    Member

    Hi,

    We had three patients on this board who had radioembo during the last 6-8 months; and all of them had been passed away.
    I ,at this point, will reserve my opinion on this interventional radiological treatment until I can learn more about it.
    I knew one of them may be related to the leakage of Y90 into the lungsafter the radioembo.
    The other one may be because of his pre-existed heart condition (pacemaker) and lung nodule(which had been wedgely removed), but his condition is stable(after liver resection and no CCA left as far as the last CT 6month prior(?)shows);he was on 6month of adjuvant chemotherapy of Gemzar after resection.
    The third one I still don’t know for sure; He was actually had a 61% shrinkage of the tumors(one big one and a lot of the small ones.and he just want to to enjoy life more,he was 43 at that time?) ;but I suspected it was the side effects of panitumumab being mentioned quite often is pneumonitis ,pulmonary fibrosis and cough that causing him problems even after stopping the regimen for a month or so before the radioembo was performed.,but this is just my guess.
    But 2 of them were on chemotherapy (GEMOX)+ targeted agents (EGFR inhibitor) before they were administered the Y-90 radioembo treatment. And it seems to support the observation that patients received cetuximab and the like before Y 90 treatment will have a shorter overal survival.
    Two of them had stopped chemotherapy 10 days to 2weeks befor radiochemo which was recommended or ok by their doctors ; well short of the 4weeks recommended by others .

    God bless.

    in reply to: Questions to ask doctors #64381
    pcl1029
    Member

    Hi,
    It depends on the size of the lesions; most likely you will have to wait for the next Ct scan in order to get a better picture of the liver.
    If you really want to; 2nd opinion by an interventional radiologist at MGH to see whether radioembolization can be done is recommended .
    With regard to the size of the lesions vs the sizes of the bead that contain Y90. If the size of the bead is small enough to go into the lesions and if you have no metastasis anywhere in your body except the liver ; your liver reserve is enough and the leakage of Y90 is less than 20% to your lungs; radioembo may be of value to take a look.
    in the experience forum of this message board under radiation treatment and options,there are a lot of info within the last 6 months about radioembo that you can take a look.
    God bless.

    in reply to: Klatskin #64353
    pcl1029
    Member

    Hi,
    If your 2nd opinionof surgery is within next week. I will suggest to have the CT scan done this week and see the surgeon within next week. .Sometimes, unless it is urgently needed, most surgeon prefer not to have the stent in place so they can evaluate the cancer situation better;they can see the dilated bile ducts much better when there are nothing like a stents to block their views when they evaluate the situation.
    This cancer needs experienced surgeons who have performed hundreds if not thousands surgeries on the pancreatic , biliary systems and liver. It is a specialty within GI specialty.
    God bless.

    in reply to: Klatskin #64351
    pcl1029
    Member

    Hi,
    2n d opinion with dr. Brems at Sherman for whether your mom can have surgery for curative treatment is a must before oncologist visit unless they tell you straight that your mum is inoperable.
    Why did the GI specialist don’t call you himself ;can you ask him whrther surgery can be done and if not, why not? before you will have a 2nd opinion by Dr. Brems. I had 2 liver resection done by him; he is good.
    keep in touch and
    God bless.

    in reply to: Husband recently diagnosed with cc #63784
    pcl1029
    Member

    HI,
    May I ask how old your husband?
    May I ask why the interventional radiologist want to switch to radioembo rather than continue to have chemoablation? If the doctor just want to try radioembo to see whether is a better treatment or not ;and as you said the cancer is well contain and not gettting worse;than I will continue chemoablation and NOt to have radioembolization.
    Under our experience forum of radiation treatment; there are a lot of info about radioembolization. please take a look too.
    God bless.

    in reply to: What Will You Do After Adjuvant Chemotherapy Is Done. #64296
    pcl1029
    Member

    Hi, Marion,
    As I told Eli, I may be on Xeloda forever, I am currently on the Xyloda for the past 10 month at 75% of the full dose and 2 weeks on and one week off.
    In the research That I did about”the maintenance dose” topic disscussion,I found some at half the dose, or just 1000mg twice daily for ALL patients without regard to the body surfaces area (m2) at 2weeks on and one week off. Or one report indicated same dose at 5 days on and 2 days off ; or another report indicated dose per M2 ,but at a 7 days on and 7 days off schedule. All of the above dose schedule and frequency are done for solid cancers OTHER THAN that of CCA. But as you know, often ,if successful, they will try on us too.
    This is a subject that requires the cooperation of the oncologist as well as the patient who understand why he will want such a prolong or even a lifetime chemotherapy until the CURE will be here in 3-5years.
    My answer is that I do not want to be a sitting duck , I want to be proactive.
    And Xeloda is relative easy to tolerate and is proven to be effective in other solid cancer. But even so, the main purpose is to prolong ,if possible, the disease control state,or theTTF( time to be free of the disease) as long as possible before it comes back again. It is still not a cure, that is why,in addition to that ,I continue to take the oncozac twice a day on my Xeloda days off.
    God bless.

    in reply to: Klatskin #64346
    pcl1029
    Member

    Hi,
    May I ask the name of the surgeon that you mentioned ? Is he practice at Northwest hospital near rolling Medows .
    The treatment triangle is always consists of surgery,radiation and oncology treatment.
    Unless your mom at 73 has pre- existed condition or the current health condition complicated the situation, otherwise if there is no metastasis to other part of the body, surgery may provide the best option.
    The best surgeon that near you is Dr. Berms at Elgin ,Illinois ,about 15-20 min. Northwest of Rolling Medows down I 90. He is specialized in pancreatic and biliary GI and liver transplant. A 2nd consultation is recommended if you go for it. He is at Sherman hospital at Elgin.
    I am only a patient for 39 months now, as a patient , I think your mother should have the final say of wanted to be treated or not if her cancer metasized . But if she is healthy and do not want surgery ( the only possible cure) , you have to tell her that too.
    God bless.

    in reply to: Chest/upper right pain #64337
    pcl1029
    Member

    Hi,
    If Jennifer Knox is still your doctor,you should call her office and tell their staff about your situation, and they will return your phone call for further instruction today. She does research on this cancer quite well and should provide the answer that other cannot because of her special interest on this cancer .
    Otherwise, just go to Prince Margaret hospital ER. And they has your record or they can call the doctor’s office staff for you on the 4 or 5th floor.
    In the meantime, just lie down in the bed and you’ll feel better. I took Xeloda too, I do at times have the burning sensation, stomach acid reflux and when under stress like hurry up to finish a project, the burning sensation will be worse. I took famotidine 40 mg ,chewing it up in the month and swallow it with water and it will go away. Or you can take Protonix, Prevacid once a day in the morning to less the chance of the side effect. Peptobismol should only be used fro immediately relief of the burning pain and sensation but make sure it is at least 2-3 hour before or after taking the Xeloda. Same apply to Mylanta or Maalox for the aluminum inside those medication may cause unwanted side effects when taking them with Xeloda.
    God bless.

    in reply to: Time for my experience and help #32430
    pcl1029
    Member

    Hi,
    Just take it one day at a time.
    I think your oncologist did take your mom’s current health status into account and prescribed 6month of Gemzar for your mum. that is ok as far as keeping the cancer at bay and also provide a better quality of life treatment plan for your mom.I still don’t know the exact location of the 3x3cm tumor;but if it is the only tumor in the LIVER, unless the radiologist feel otherwise, I don’t see why chemoembo is not an option unless he/she has difficulty in reaching the hepatic artery. or the past portal vein reconstruction preclude the procedure.
    God bless.

Viewing 15 posts - 736 through 750 (of 1,667 total)