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  • #54741

    In reply to: Update on my sister

    marions
    Moderator

    Andrew……Adjuvant therapy is hotly debated amongst physicians simply because; there is no evidence that proving it to beneficial for this cancer. There are some studies underway however; we are still a long way off from receiving the data. Has your sister’s physician explained to her as to why he is proposing the follow-up treatments with 5FU+Oxilplatin+Irinotecan? That I believe is a good question to ask. What I have learned is that rare cancers are treated often times based on a gut feeling simply because, it might work. Ultimately it will become a personal decision your sister will have to make as there is no proof that it will be effective but, there is hope that it can be just that.
    You are a great warrior for your sibling.
    All my best wishes,
    Marion

    pcl1029
    Member

    Hi, this is a reprinted message about questions about extra cholangiocarcinoma.

    Hi,Kate,
    Question 1.
    “I wonder if it makes a difference that with Richard’s wife we are talking about adjuvant therapy with negative margins. “

    Yes, according to ESMO(European society of Medical Oncology) guidelines. they suggested either supportive care or palliative chemotherapy and/or radiotherapy after a noncurative resection of CCA (intra and extra)and consideration of postoperatvie chemoradioptherapy as an option after complete surgical resection. But the NCCN guidelines(National Comprehensive Cancer Network) in the States indicated for extraCCA patients with resected,margin-negative ,observation or fluoropyrimidine-based chemoradiotherapy are acceptable options. for intraCCA patients,have no residual local disease,no adjuvant therapy recommendation are made.
    Question 2
    “Is there some evidence you have seen that Gem also works better in adjuvant therapy? The reasons for the Bilcap trial using Xeloda seem to be based on it’s positive results with colon/pancreatic cancers.
    I’m wondering what a study of Cap v Gem would yield. ” please go to http://www.mdpi.com/journal/cancers (New Window) and put in title as Targeted therapy for biliary tract cancer.author=junji Furuse and review the article. It will provide you,on table 1 phase II studies of the most used chemo agents up to date for CCA;except 2 studies, most are very current(after 2004 to 2010) especially table 2.(all are in 2010).
    Question 3
    “Also interested in why you think Gem and Cap together might be more effective? “
    It is because gemzar and 5FU(or capecitabline) are the 1st-line treatment chemo agents,by EACH itself ,proven to be effective in treating CCA. for Gemzar itself alone is arounf 7-27% and 5FU by itself is around 0-34%.And there were studies indicated when they combined together the objective response rate is 31% with an additional 42% had STABLE disease.(you can read more into it from the above studies from table1 and 2 in that article.)
    Question 4
    “Did you find something which shows radiation successful after a resection with good margins? I seem to find studies which say radiation is usually used with positive margins?”
    Please see the above NCNN and ESMO recommendations that I have just included in this message. And no.I did not find anything showing radiation is necessary after resection with good margin.But as I talked to Dr, Levy from Mayo during the ASCO 2011 where he presented”Soup and Nuts about CCA” he said one thing about EUS for extrahepatic CCA was that ,”there are always residual CCA cells may involve in recurrence.” in short ,it is difficult even with great care when taking biopsy from tumors .By the same token, it is very difficult,even with good surgeon,to resect with clean margin and expected the CCA will never return for the same reason. I had >1cm in clean margin the 1st resection and still recur after 18 months. (that might mean microscopically the residual CCA cells (not the tumor) may be too small to be pick up by intraoperative ultrasound,but macroscopically ,thru the surgeons naked eyes it is clean even is 1 cm away from the tumor site.)

    What I am trying to say is that ,be vigilant,be watchful for your dad’s CCA, even the doctor said is all clean;monitor his CCA every 3-6 months;and deal with the outcome as soon as possible with the best treatment options at that time frame.

    Kate, not that many people like to know the details about cancer,but knowledge helps in understanding the tumor biology and hopefully one day the CURE can be find earlier enough for all of the CCA patients and give the caregivers like you the ultimate joyful reward of knowing that your participation is meaningful and rewarding not only to your love ones but as well as to the society- discover the cure or pathways for better and more effective treatment plans with minimun or no toxicity.
    God bless.

    #5936
    baroque
    Spectator

    Background: My sister (then 31) diagnosed with extrahepatic CC in Sept 2008 (1cmx1cm). Whipple + 6 mo. adjuvant Gemzar/Xeloda. Clean scans until Sept 2011 (2cmx2cm necrotic lymph node near porta hepatis).

    Sister started SBRT this week and has 4 more treatments. She says it feels like someone punched her in the stomach and then microwaved her guts. So that sounds like it sucks. We’re hoping she gets mutant powers out of all of this. She’s hoping for Wolverine powers. I want her to get telepathy. Neither of us want her to get Spiderman or Hulk powers. :)

    We reached out to USC for a second opinion on treatment but never heard back. Not a big deal as we had our Hem/Onc doctor do a peer consult with Mayo and other doctors at UCLA. Basically he said what most on this board already know; there isn’t strong data showing the effectiveness of adjuvant chemo and a few colleagues suggested doing nothing because the SBRT will have eliminated all detectable amounts of cancer. The majority was in favor of some chemo and our doctor favored aggressive chemo considering my sister’s age and general health.

    We’re all in favor of aggressive treatment so this is music to our ears (although my sister hates needles so she’s dreading chemo again). The doctor wants to start another 6 mo. cycle of 5FU+Oxilplatin+Irinotecan about a month after she finishes radiation. Any thoughts on the drugs/treatment plan or what X-Men powers we’ve overlooked?
    +andrew

    #54319
    pcl1029
    Member

    Hi,Kate,

    “I wonder if it makes a difference that with Richard’s wife we are talking about adjuvant therapy with negative margins. “

    Yes, according to ESMO(European society of Medical Oncology) guidelines. they suggested either supportive care or palliative chemotherapy and/or radiotherapy after a noncurative resection of CCA (intra and extra)and consideration of postoperatvie chemoradioptherapy as an option after complete surgical resection. But the NCCN guidelines(National Comprehensive Cancer Network) in the States indicated for extraCCA patients with resected,margin-negative ,observation or fluoropyrimidine-based chemoradiotherapy are acceptable options. for intraCCA patients,have no residual local disease,no adjuvant therapy recommendation are made.

    “Is there some evidence you have seen that Gem also works better in adjuvant therapy? The reasons for the Bilcap trial using Xeloda seem to be based on it’s positive results with colon/pancreatic cancers.
    I’m wondering what a study of Cap v Gem would yield. ” please go to http://www.mdpi.com/journal/cancers and put in title as Targeted therapy for biliary tract cancer.author=junji Furuse and review the article. It will provide you,on table 1 phase II studies of the most used chemo agents up to date for CCA;except 2 studies, most are very current(after 2004 to 2010) especially table 2.(all are in 2010).

    “Also interested in why you think Gem and Cap together might be more effective? “
    It is because gemzar and 5FU(or capecitabline) are the 1st-line treatment chemo agents,by EACH itself ,proven to be effective in treating CCA. for Gemzar itself alone is arounf 7-27% and 5FU by itself is around 0-34%.And there were studies indicated when they combined together the objective response rate is 31% with an additional 42% had STABLE disease.(you can read more into it from the above studies from table1 and 2 in that article.)

    “Did you find something which shows radiation successful after a resection with good margins? I seem to find studies which say radiation is usually used with positive margins?”
    Please see the above NCNN and ESMO recommendations that I have just included in this message. And no.I did not find anything showing radiation is necessary after resection with good margin.But as I talked to Dr, Levy from Mayo during the ASCO 2011 where he presented”Soup and Nuts about CCA” he said one thing about EUS for extrahepatic CCA was that ,”there are always residual CCA cells may involve in recurrence.” in short ,it is difficult even with great care when taking biopsy from tumors .By the same token, it is very difficult,even with good surgeon,to resect with clean margin and expected the CCA will never return for the same reason. I had >1cm in clean margin the 1st resection and still recur after 18 months. (that might mean microscopically the residual CCA cells (not the tumor) may be too small to be pick up by intraoperative ultrasound,but macroscopically ,thru the surgeons naked eyes it is clean even is 1 cm away from the tumor site.)

    What I am trying to say is that ,be vigilant,be watchful for your dad’s CCA, even the doctor said is all clean;monitor his CCA every 3-6 months;and deal with the outcome as soon as possible with the best treatment options at that time frame.

    Kate, not that many people like to know the details about cancer,but knowledge helps in understanding the tumor biology and hopefully one day the CURE can be find earlier enough for all of the CCA patients and give the caregivers like you the ultimate joyful reward of knowing that your participation is meaningful and rewarding not only to your love ones but as well as to the society- discover the cure or pathways for better and more effective treatment plans with minimun or no toxicity.
    God bless.

    #54311
    pcl1029
    Member

    Hi,Richard,
    If your wife’s histology reported indicated positive margin;do what the 2nd opinion recommended;that is Gem/cis and radiation. If your wife’s CCA is extrahepatic CCA,Gem/Cap , radiation with or without FUDR or Capecitabine may be a better choice since 5FU or capecitabine for some unknown reason works better for extrahepatic CCA than intrahepatic CCA unless your wife have done some chemo sensitivity test for choosing the proper agents.and it is much easier to take the Capecitabine than the cisplatin.(less toxic to the kidney and hair loss.)
    I love to see a copy of the BILCAP procotol if you can e mail me one.
    God bless.

    #54295
    pcl1029
    Member

    Hi,
    there are retrospective series and small phrase Ii studies suggest superior outcomes for patients who receive EBRT radiation with or without concomitant chemotherapy or the combination of post-op 5FU plus brachytherapy after resection of cholangiocarcinoma.
    for patient who are left with microscopically positive margins after resection,the main benefit of postoperative radiation therapy is a reduction in the rate of local recurrence.
    in one study, margin positive resection patients increase their 5 year survival
    rate if they received postoperative adjuvant EBRT (34 vs 14%).
    In another study,46 cholangiocarcinoma patients(total pop.=128 patients of hepatibiliary ca) had 3D-CRT radiation plus FUDR intrahepetic artery infusion;60% of all patient were free of hepatic progreesion at 3 years.
    In short ,receive postoperative adjuvant radiation treatment with or without chemo may prolong survival.

    I know the above response may not answer the actual question that you had.
    Should i wait until the CCA recur or do the preventive adjuvant radiation treatment as soon as possible?
    MY answer is at least ,up to now, there are NO CURE for this disease;all the treatment plans are use to prolong or for palliative purposes;Recurrence is high in this disease(>65%). whether you monitor the disease progress every 3 months with scans like me or wait until the recurrence hit home. it is always a very difficult decision to make. Because there are no guaranteed for either way. But if you,like me, try the best we can, there will be no regrets when the time comes.
    God bless

    kmemoro
    Spectator

    Please help me!!!!!!!!!!!!!!! On October 25th my 78 year old Dad had his 1st treatment with Gemzar.He was supposed to have 2 weeks on and 1 week off. He went back this week and was told his count was too low and that they would give him a shot to boost it and that hasnt worked. He has now had 4 shots and its still hasn’t budged-its still in the 60 range. He has started to have nose bleeds and his stomach is getting larger every day. He has no appetite and is having bouts of constipation and diahrea.
    He had 5 weeks of 5FU and radiation previously and did well.
    What do we do now? the Dr seems to be playing a waiting game but its not “His Dad”.
    Help me,
    His Loving Daughter
    Kathy (he calls me”Pet”)

    #53726

    In reply to: My Dad

    kmemoro
    Spectator

    marions
    Dad could not have a resection and he has already had the max amount of radiation and he had 5 weeks of 5FU – 5 days a week and the numbers are still going up.
    He cannot eat and when he does it runs out of him. He is tired and now he is saying he has pain(he never complained about pain before).
    I cant sleep worrying over what the Oncololgist is going to tell us Tuesday

    #53724

    In reply to: My Dad

    kmemoro
    Spectator

    I want to thank all of you for your kind words and support.
    I am truly not looking forward to the CT results on Tuesday as I found out that Dad’s labs were not good. In August his CA19-9 level was 1321 and Monday’s number was 1649.7. His CEA is also up to 16.3, his RBC and HGB are low-he never had a low blood count before.
    I know we are going to be told that the tumor has gotten bigger and I also am wondering about the liver and pancreas. When they tried to do the resection we were told they were going to remove at least 1/3rd of his liver then and that there were several unknown images in the pancreas but because they could not do the resection we never found out what they were.
    I have been reading other posts and have not heard of anyone with the numbers that high, even my PCP had never heard of that high a number.
    Can anyone give me some insight into knowing what these mean?
    He had 5 weeks of 5FU chemo and 5 weeks of radiation(every day) so the Dr. said no more radiation but maybe more chemo but if the numbers are up that high after all that will it be worth it.
    He says he has no pain but he takes 2 oxy’s a day for arthritis so that may be masking any pain he may be experiencing. He says he feels ok but he doesnt look like he is. His color is off and he isnt eating much at all. I have worked for Dr.’s myself for more than 20 years so I know when patient’s are not themselves.

    #52675
    peggyp
    Member

    Hi Percy,

    Thanks for the information on Xeloda. We are scheduled to meet with Dr. Jimmy Hwang at Georgetown on Monday, Oct. 17. His nurse called yesterday and asked a lot of questions and told me I needed to get all the radiology disks from each hospital John had tests done and bring them with us when we come for our appointment. She also sent me a lot of paperwork to fill out. I think John was also taking oxiliplatin with the 5FU when he had that adverse reaction. He said that he had never felt so much pain as he did that day in his back. He also got very cold and they had to keep heating blankets to put on him. They actually gave him a morphine shot to knock him out because the pain was so bad. The oncologist said he couldn’t be sure which drug caused the reaction so he just switched over to the gemzar/cis/avastin. The nurse from Dr. Hwang’s office told me that she had already received all of John’s records from his oncologist here so hopefully between those and me Dr. Hwang will be well informed. I’m hoping that there might be something new that he will recommend. Just anything that will help keep John around for many more years.

    Whitrockj,

    Thanks for your good wishes and you are right; this is a roller coaster ride that we have been on for over 3 years. I hope your mom is doing better today and continues to improve. PeggyP

    #52672
    pcl1029
    Member

    Hi,Peggy,
    I did look over your husband’s messages entries a bit.
    58 year old,stage IV ICC started 3 years ago;resection 70% of the liver;chemo 5FU for 17 cycles before allergy occur.took a chemo break change to Gemzar/cisplatin and later with Avastin add to the regimen;bleeding occur, off treatment,restarted chemo;8/2011 and October scan are OK with no change (stable) and Dr. Wong recommended to use oral Xeloda.

    The concern that I have for your husband is below.
    If possible, please mention to Dr. Wong your husband may be allergic to IV 5FU as you indicated in one of your message;and Xeloda is a prodrug of 5FU.meaning that after taking the Xeloda,it will change(metabolized) to 5FU inside the body to destroy the DNA inside the cholangiocarcinoma cancer cells.

    Sometimes the allergic reaction of IV 5FU may be just because of the IV infusion of the 5FU and may not be the actual allergy of 5FU the drug itself. But if any allergic reaction like hives ,severe itching,shortness of breath(SOB),sensation of throat closing,abdominal cramping and fainting,you should consult doctor before starting of Xeloda.Even if not,it still a good idea to mention to Dr.Wong about the allergic situation to him for safety concern. I hope you will agree with my concern for your husband.
    God bless.

    #49928
    linda-wife
    Spectator

    We have also started on some suppliments which include the following: Vite E, Beta Carotene, Curcumin ( active ingrednt in Tumeric), Fish oils. For those that do not now what Fulfox is it contains the following regimen of drugs: Oxaliplatin, 5FU and levoleucovorin. We had started on Gem Cis and had virtually no side effects but as others have noted our CA19-9 jumped while local lymphnodes apeard to respond it appearded as though that found in the liver did not. We have had one scan since on the current regimen which documented stable disease. During the last month our CA19-9 dropped dramaticly ( this is also the time frame we started these supplements). Best regards,
    Linda

    #53348
    pcl1029
    Member

    Hi,
    1. Is reresection possible?
    Did you discuss with your surgeon about that possibility although as you mention about 65% of the liver had been removed.
    You are only 46 years old,and patients can survive with only 25% of the liver left.
    2. How big are your 5 tumors? If they are smaller than 4cm or even 5cm,RFA or microwave ablation may be the choices if the interventional radiologist can get to the tumors;Chemoembro or radioembro with Y90 also can be used.
    You can also do chemoembro for the tumors and follow with RFA on the same tumor sites for better results. Some studies indicated the results were as good as resections;However there were also other reports indicated otherwise.
    As Marion said, radiology consultation by an interverntional radiologist is the best bet for your treatment plan if you choose radiation therapy.
    3. Chemotherapy with molecularly targeted agents such as Tarceva ,Erbitux, Avastin etc with or without traditional chemo agents like 5FU are among other choices too.It seems to me RECENTLY more oncologist are prescribing Xeloda by mouth ALONE for full or 75% of the dose for 8cycles (2weeks on and 1 weeks off) and Xeloda alone is easy to take then IV chemo.Radiation with chemotherapy at the same time is also another choice.
    I know CC is always a trough road to travel;hopefully step by step,and with God’s grace,we ,as patients,can reach our goal of being free of this disease in our life time.
    Keep in touch,you can email me if you want to. I am sure I had already missed to read a lot of other messages on this site lately.
    God bless.

    #5722
    lindsay0927
    Spectator

    Hi all, my mother was diagnosed last September(2010), and she is way beyond doctors’ prognosis(3 to 6 months), but these days, she says everything is so bitter and she can’t eat anything. She’s become so weak and it sounds like she’s having a problem catching her breath.
    I have a long story to tell, but didn’t have the time. Yet, if everything settles a bit, I will definitely back to write my mom’s journey.
    My mom is 65 yrs old and had two cycles of 5FU and cisplatin, but stopped Chemo and tried some alternative procedures(something similar to gerson’s), but got worse and this January, she had a stent/bile bag installed and also another bag for water in the belly(sorry, English is not my first language) and it seemed like her condition stabilized and she was all right for 6 months, but last month, she had to take out the stent for belly water because of infections. She’s taking megesterol(?? to get appetite back) again which used to work but it seems it’s not working anymore. Any suggestions for nausea? Acupuncture used to help, but not anymore. A month ago, hospice doctor told us she has less than two month but it seemed so unreal back then, but she’s getting so weak a day by day. She sacrificed so much to brought up her three children and I love her so much. These days, I regret everyday, why I didn’t get to spend more time with her, but it still kills me that I’m here in NY to support her financially, and she is in Korea getting treatments/pallative care- one of my sister quit her job to take care of my mom. There are so many what ifs and so much pain, and I’m losing my mind but one step at a time,and I need her to eat/take something. I’m so sorry to mumble and vent. Any advice would be very appreciated.

    #52578

    In reply to: looking for solution

    pcl1029
    Member

    Hi,mojgan,
    You know I am not a doctor but just a patient.
    Well,I almost miss your message today;so if you want to,you,like others, can always send me an email thru this web site by clicking the ” e mail” sign just under PCL1029,and they will forward it to me. In this way,I will not miss your questions if you want to direct them to me.
    How is her health in general?Diabetics,high blood pressure etc. Was your mom seen by an oncologist as I suggested to you before and what did the doctor say,? For ductal Hilar CC ,capecitabine by mouth or 5FU given by IV with gemcitabine may be a better choice than gemcitabine & cisplatin.
    Radiotherapy such as PDT with or without chemotherapy are acceptable options.

    These are all the factors that will affect the outcome of your mom’s treatment plans. Did they have a final stage diagnosis ? (ie: Hilar, stageII or III?) and is it really metastasized to the stomach instead of the abdomen like the omentum.
    Most people confuse the abdomen with the stomach.

    I asked one of my medical colleague who is a surgeon and he is from Tehran;He told me Cat Scan and MRI are very common radiation procedures and if you are not sure, go to the hospital that is affiliated with the university and you should not have problem for your mom to get in for the procedure.

    I think only the surgeon can give you an answer about the safety to REMOVAL the metal stent by surgery and its prognosis after the removal.
    Usually metal stents may not be removable.As Marion said ,plastic stents eventually develop occlusion by sludge and/or bacterial biofilm, & maintaining billiary drainage usually requires repeated endoscopic procedures like ERCP;or initially using percutaneous stents which are usually left to open drainage external to the body(ie:patient carry a little bag to collect the bile outside their body);However complications are more frequent (eg. bile leaks and bleeding) and prophylactic antibiotics such as Cipro to reduce infection are commonly used here in the States for long term palliation of obstructive jaundice after the first episode of cholangitis no matter the patient has metal or plastic stents..As a result most physicians prefer initial endoscopic attempt for drainage which is currently your mother has -an internal metal stent with a plastic stent inside.So all your mom needs now is going back to doctor and let them flush and clean out the sludge and get prophylactic antibiotics like ciprofloxicin or levofloxicin to prevent cholangitis .Anytime your mom has a fever ,take a couple of acetaminophen(650mg total/dose) or ibuprofen (600mg total/dose);after a couple hours,measure the temperature again, if condition is not improved,call the doctor right away so your mom can have IV antibiotics without delay in the hospital.This are the basic home care you can provide for your mom to help her before the infection takes hold on her.
    Talk to the doctors and show your confidence and knowledge when you meet them.Try not to be talked down by the doctors. Ask questions.
    I do not know about the cultures out in Iran,but I know one thing for sure, this is your mom and you have every right to ask and question the plan of treatment for your mom no matter where you are .
    By the way, use liquid protein like ENSURE or Carnation breakfast drink or Boost
    These are high calorie content liquid protein supplement that you can use for your mom;making smoothy with fresh fruit is always a good option.do not worry about being yellow,once the stents get clean,it will disappear. Good luck
    Keep us inform.
    God Bless.

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