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  • #7066
    tnyjax241
    Member

    My son, Trevor, just received word that his tumors markers went up from 21,000 to 71,000. He was released from the hospital close to a month ago, has since then started to regain his appetite and some weight. He is still trying to regain some of his strength back. The tumors markers are CA-199 being tested.
    Does anyone have any info on the sudden increase? This is after three treatments of 5Fu two of which have been with Gemzar. He has felt better recently, i.e. eating a little better and getting around a bit.

    Your response will be greatly appreciated.

    Thanks ,
    Eileen

    #62317
    pcl1029
    Member

    Hi,
    Just like your husband said before,”why rock the boat if it works so far”
    Also, lately I see more combination therapy prescribed using Gemzar+5FU 48 hr infusion pump and Gemzar+ Xeloda (is the oral form of 5FU) . I will continue the same regimen of GEMCAP(Gemzar+capecitabine) until it does not work anymore. I will avoid the platin group at all cost until it is unavoidable.
    BTW, the article mentioned by Eli is a good reference for those who want to compare most of the regimens used for this cancer.
    God bless.

    #7001
    biscuit02
    Spectator

    So my mother who has stage IV,non operable CC just finished her first “round” of Gemzar and her tumor marker went down!!! Before treatment her CA-19-9 was at 91 and after her first round it went down to 26!! Her oncologist said that this was great news that hers has is responded so greatly. She said in about 70% of cases most people do not respond and in the 30% that do repond, it is usually not that big of a drop. She was due to start 5FU along with the Gemzar, but since she has responded so well to them Gemzar, they are just going to keep her on the Gemzar. With that being said her oncologist also told her that her prognosis is better now. Such Awesome news, we just pray that she continues to respond well to Gemzar!!

    #61694

    In reply to: 5FU and Gemzar

    pcl1029
    Member

    Hi,
    I just emailed to Trevor, he is doing fine,still on CYCLIC TPN,but slowly gaining back little by little his appetite and energy back.. He still on GEM/5FU infusion pump.but at reduced dose.
    God bless.

    #61714
    pcl1029
    Member

    Hi,everyone,
    Here is what I get from the presentation title ” Treatment of biliary tract and Gallbladder Cancer” by Dr. Jordan Berlin MD.
    There are about 7,500-8,000 new cases per year. ( I believed he means in the States,but I am not 100% sure.)

    Currently Gemzar+the platins(cisplatin,Oxaliplatin and Carpoplatin) provide the highest response rate(RR=22-48%);time to disease progress(TTP 7-13months) and overall survival(OS=7-13months).

    A 5FU pooled analysis shown RR=22.6%;TTP=4.1 months & OS=8.2months.

    Other chemo agents like irinotecan and the Taxanes (ie: docetaxel, Paclitaxel) ;the RR=20%;TTP=6months and OS=8months for a study done for docetaxel involved 25 patients; and there were no RR in a study done for Paclitaxel which involved only 15 patients.
    He indicated that there may be biological and pathological differences in biliary cancers; and we are near the limit of where the cytoxic agents can do(ie: traditional chemo agents. );therefore we have look beyond the cytoxics and into the targeted therapies.

    For target therapies,we have to look at the pathways first in order to determine where to start ;biliary cancer is a rare cancer and therefore it may be impossible to test every pathways to find new drugs;so we have to choose the pathways wisely. Currently there are overexpression in biliary cancer in MAP kinase pathways like EGFR;C-met(ICC=20% overpressed and ECC=16%);Kras mutation is about 50% in ECC and less in other sites.
    Erlotinib(single agent study,42patients,RR=7%,17% of patients is PFS=6months ,benefit is modest at best) , cetuximab and panitumumab are EGFR inhibitor examples under study too.
    MEK pathway is another pathway. In a study involved 28 patients ,using Selumetinib as a SINGLE agent in the 28 pts study;RR=12% PFS=3.7month and OS=9.8months; another MEK inhibitor under study is MEK 162 in phase I.
    Other pathways are BRAF,PI3kinase;TGF beta etc. currently studies are in development to explore these pathways in order to search for new drugs to combat the biliary cancer;but due to the fact that there are biological and pathological differences in biliary cancer(ie:ICC vs ECC);we should approach the problems by targeting on different tumor sites, the disease as well as targeting the mutations.
    Cell cycling is another pathway since our body cells are cycling all the time,and that is why it is dangerous since the cells keep growing.Examples of the cell cycling factors are p27,BcI2.p53 etc. the abnormality are different by site(ie: ICC,distal,Hilar). the agents that potentially useful are WEE1,CHK1etc.
    The site of recurrence of biliary cancer in ICC patients : intrahepatic =54%; extrahepatic=24% and Intra+Extra =22%. Overall the recurrence rate is >75%.

    Conclusions: The future belong to targeted therapy;currently chemotherapy is still the standard of biliary treatment . The Level 1 evidence standard treatment is GEM/CIS. In treating biliary cancer,we have to target the disease as well as the mutations in research and treatment of biliary disease.

    Adjuvant therapies provide NO definitive evidence that will benefit the patients.It depends on the site of the Primary(ie:ICC,Hilar or distal).
    It is possible that adjuvant treatment like radiation will have differential effect depending on site of the primary
    God bless

    #61206

    In reply to: Half Way There!!!

    jathy1125
    Spectator

    Derrin, don’t want to be “debbie downer” but radiation tends to knock you for a loop about a week after you are done. Patty just posted on FB how good she was and now very wiped. I will always remember the day it just hit me like a ton of bricks. I was doing pretty good, (usually took myself and was also having 5FU 24 hours a day) then WOW!! I know we all different but be carefull, you have a lot planned and your immune system is pretty compromised. My advice is don’t push yourself and let yourself be pampered!!!
    Lots of prayers-Cathy

    #61691

    In reply to: 5FU and Gemzar

    tiff1496
    Member

    Dr. Javle has me on Gem and Xeloda. I believe xeloda is the same thing as 5fu, but it might be a little easier on people. You might want to call his office and ask about doing xeloda and not 5fu/

    #61688

    In reply to: 5FU and Gemzar

    tnyjax241
    Member

    Thank you all for your support, information, and kind words. We will keep you posted. Trevor is currently dealing with gastrointestinal issues, causing poor appetite. He is trying to eat and drink more slowly, which seems to help.
    Fatigue level is high and therefore taking it easy. Is anyone having issues with indigestion and heartburn on the 5FU treatment? Anything new you know about?
    Thanks very much.

    Eileen

    #61684

    In reply to: 5FU and Gemzar

    mydadrocks
    Spectator

    This is the protocol Dr. Javle has my dad on as well. It is, to be blunt, kicking the s**t out of him. In much the same way it has affected your son. We are not yet to tube feeding status….yet being the key word. The diarrhea and dehydration are the current stumbling blocks for him, and he’s not eating much to speak of, although i’m told he’s eaten more the last day or two. His comments have been “i’m not eating if i can’t taste anything and i’m just going to s**t it out”. He looked and sounded marginally better after a couple of weeks off the 5FU (his counts and electrolytes were just pitiful). His markers have consistently risen as well, despite near-complete clearing of his metastases. Weird, weird.

    His original protocol was FOLFIRINOX, and that was like tylenol compared to this. This is just rotten.

    please let us know how your son’s doing. i’ll be thinking of you, lots.

    #6904
    tnyjax241
    Member

    After 8 months Gem/oxali, my son’s chemo switched to 5FU and Gemzar. This was after consulting Dr. Javle at MD Anderson in Houston. His tumor markers continue to rise and he was hospitalized a few times in the past month due nausea, vomiting and weakness. He is on the TPN overnight and G tube in his stomach to help relieve the nausea. His appetite has slowly improving to a soft diet. Has anyone experienced a weakened condition and not eating properly due to the 5FU. Will his appetite improve? Thanks for your help.

    Eileen Bougill

    pcl1029
    Member

    Hi, everyone,
    Below is part of the lecture by Dr. David Gerber at Southwestern medical Center through RAN(Research Advocate Nework ) about targeted therapy that may be of interest to you.

    There are two kinds of them
    1. Monoclonal antibody(MoAB)–like Avastin, Cetuximab and Panitumumab;they are big in size,therefore can only work out side of the cancer cells(ie: avastin works outside the cancer cells and blocks the formation of tiny blood vessels to attach to the cancer cell to supply blood and nutrients to the cancer .); the MoAB are more target SPECIFIC compare to small molecule targeted agents like Tarceva(ie;MoAB goes to attack just one specific cancer cells and therefore produces less overall side effects like traditional chemo agents like 5FU.),In general the effects of MoAB last longer(ie:for days)
    2. Small molecule inhibitors(SMI)–like Erlotinib(Tarcevar),gleevec,Sorafenib (Nexavar); are small in sizes and therefore can get thru the membrane of the cancer cells and work inside to kill either by blocking the complex cancer cell growth pathways or destroy the cancer inside.But unlike MoAB, small molecule targeted agents are LESS target specific than MoAB(ie;SMI can act on MORE than one type of cancer cells(ie:Naxavar works on different cell pathways-EGFR,KIT,PDGFR etc.) thus there side effects are more than the MoAB. In general the effects of the drug will last shorter.(ie:in hours)
    3. MoAB usually are given via Iv infusion and Small molecule targeted agents are by mouth.
    4.Because of each patient is different in medical status(ie; older age, have other chronic disease like diabetes or high blood pressure etc already;and also disease state (ie: stage of the cancer) and other issues can affect the overall treatment .
    The response of the targeted treatment will be different among patients on the same dose of the same drug due to difference in GI absorption and liver processing of the drug(most of the SMI are taken by mouth).
    The amount ofFREE drug particles(both by route of IV or oral) available in the blood stream without binding to other protein can be different too (ie; that will mean some patients will have more drug available to destroy,either by drug attachment on the surfaces(MoAB) or like (SMI) go inside the cancer cells to disrupt the cancer cell growth pathways ; other patients will have less drug to work with.( called the protein binding effect of the drug).
    Even for the SAME patient,depend on the location of the tumor or the type of cancer, the amount of free drug available to treat the patient will be different too. In short, the effectiveness of the targeted therapy and chemotherapy are also related to each patient’s health and biological status.
    (this section #4.,due to the added explanation to make it easy to understand this section; this section may not be completely identical to Dr.Gerber’s lecture.)
    5. with regard to the current time requirement to develop a targeted agent.
    this is the comparison He gives.
    Target research of EGFR discovered in 1978;not until 36 years later(2004) the drug called Erlotinib(Tarcevar) was developed into a targeted agent for use in cancer.
    Compare to Crizotinib (ie; an agent targeted the ALK pathway),it only take 3 years,(ie: from identify the cancer target pathway to the production of an useful drug to fight cancer).
    What a difference it makes in cancer research ; so everyone(patients and cargivers) please hang in there,the dream of finding drugs that are less toxic and more effective is not just talk or hope ,but it will be reality pretty soon.
    And for finding a “cure’, it may still be possible if you look into the cancer called CML;now it is 100% treatable.
    God bless.

    #61243

    In reply to: Changing treatment

    pcl1029
    Member

    Hi,
    I am sorry I can not answer to you faster today due to the fact that I am in Seattle visiting and only can check messages when the wifi are available in each hotels at nite.To give you some feed back about the medication or targeted agents is not difficult.
    It is not a really big thing if the tumors grows only in < 4mm. In some case this tiny increase measure is not 100% accurated from reading directly from different monitors from the radiologist's office.
    Since you will be started on the same chemo agents like 5fu and irinotecan,
    The difference is of whether you should use Tarceva or verlaparib.
    Tarceva isFDA approved to treat pancreatic cancer and it is also used in bile duct cancer in ” off the label” treatment with acceptable result . Verlaparib is a A PARA enzyme inhibitor, it has to work with other chemo agents to be more effective in killing the cancer,it Is a new agent used in clinical trial mostly and has not been approved by FDA in treating bile duct CA but doctors have the right to use and test the drug in ” off the label” treatment. It shows activity in solid tumors ( ie:breast CA when used with other chemo agent and in peritoneal tumors.)
    In general, most the targeted agents like Tarceva and Nexavar, which you were on for 18 month,will be very effective at first ,then drug resistances developed and undermined their long term usefulness and effective.
    I actually like to use Tarceva as my choice, since most of the side effects of the verlaparib are still not completely known. I remembered my sister-in-law tried a new drug called Md2206 and developed hyperglycemia And had to stopped the trial.
    Please know that I am not a doctor and the above statement is at best, my best educational guess only. If you are lucky that you can choose ; I will suggest to follow you gut instinct which I believe it is sometimes ,if without emotion, is The Holy Spirit working on us and show us the way.
    God bless.

    lita
    Spectator

    Hello everybody. Thank you for your messages and responses. I will give you more detailed information on the situation.

    My husband’s first line chemo was Gemcitabine and Cisplatin. The second line chemo is Oxaliplatin with 5FU and Folinic acid, this is also being supplemented by Bevacizamab (Avastin). He started this last week Wednesday.

    He had two liver biopsies. The first was inconclusive and the second concluded that his cancer is a poorly differentiated combination of cholangiocarcinoma and hepatocellular carcinoma. Initially, the tumor was 10cm in diameter and there appeared to be some local lymph node involvement (the scans could not confirm this 100% but the doctors were pretty certain due to lymph node enlargement). His CA-19-9 was 30,000 (normal is 0-20) but his liver was working well. Some doctors believed that high CA19-9 was due to spread in the peritoneal cavity. His bilirubin was stable at the time, no jaundice, no itching, just a lot of abdominal pain. We got 5 different opinions from the US and UK: Memorial Sloan Kettering, MD Anderson, Mayo, Liverpool Aintree University Hospital, and the London Bridge Hospital (the team is directly linked with King’s College Hospital). 3 voted in favor of chemotherapy first with the hope of shrinking the tumor and then operating, and 2 voted in favor of surgery first. He opted for the chemotherapy first option; it was the majority rule amongst the international medical community and the option that gave him the most peace of mind.

    Now, after two rounds of 1st line chemo, his cancer has progressed. The tumor is larger, involves the hepatic artery, and there has been more spread into the lymph nodes. He is no longer eligible for surgery. Prior to the scan that revealed the situation we were very optimistic, because his CA19-9 had dropped from 30,000 to 500 but for some reason this was not indicative of how the situation was really unfolding. We spent 8 days in hospital last week. He was in a lot of pain, calcium was high, hemoglobin was low, bilirubin was high. It wasn’t until all these were brought back to normal that he was able to receive chemo and be discharged from hospital. Today we went on a small bike ride and he insisted on cooking me dinner. It is truly a roller coster experience and things can change from one minute to the next.

    He is being treated at the London Bridge Hospital by a team that specialises in liver cancer and cholangiocarcinoma, and we are confident in our medical team.

    In addition to the medical treatment he is receiving, we have also changed our diet (juices, smoothies, organic, no red meat, no sugar, low animal protein). He does visualization excercises, meditation and yoga. We have tried to embrace all the complementary approaches possible.

    I hope with all my heart that he is able to heal and for us to have a long life together, have children, go on a 6,000 mile bike ride in Southeast Asia, start a business. However, all my extensive research points to the very sad fact that this is a terrible disease. This is going to be a major battle, and a very painful experience overall.

    Any suggestions or advice that you can provide for us on the way forward would be very welcome and appreciated.

    I send you all my most positive vibes and warm wishes.

    #60961

    In reply to: Ups and downs

    pcl1029
    Member

    Hi,
    As you may know by now, I am only a patient like your sister and nothing else.
    If your sister has previous health issues ,the side effects of the chemotherapy may be occur differently than the normal.(ie: appear earlier or later;or at different times);for this part, that is related to your sister’s health status before and/or during the treatment ,I cannot tell you what to expect about this up and down problem.
    However,to answer your question about the swelling I can do that.
    If your sister is on GEMOX; Periphral edema(20%) and edema (13%) are the side effects from gemcitabine and oxaliplatin(10%,15% in that order) .
    Oxaliplatin cause depression in about 9% and anxiety in about 5% of the patient when give with 5FU.
    God bless.

    #6777
    tnyjax241
    Member

    We spent three days in Houston and visited with Dr. Javle who is a great doctor. He recommended 5fu. Trevor’s cancer is primarily located in the omentum/peritoneum. He spent 9 months on oxali/gem. Has anyone had any experience with 5fu? Trevor took it pre-liver transplant and seemed to tolerate well aside from hand/foot syndrome. Another peculiarity was that despite Trevor’s tumor markers increasing, his scans have remained stable.
    A symptom of Trevor’s tumor marker increase is his distension in his stomach.
    He is not able to anything down. Dr. Javle says it’s the walls of his stomach
    are closing up and nothing is able to push the food forward. He has tried taking Reglan, but that only makes things worse. Domperidone is coming in the mail in a few weeks. Hopefully this will help.

    Depending on how he reacts to the 5fu will his tumor markers decrease and appetite normalize?

    Thanks again for your help.
    Eileen

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