Search Results for 'gemcitabine cisplatin'

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  • #12345
    grsharp
    Member

    My wife just finished 4 infusions of gemcitabine and cisplatin over the last 7 weeks. A new CT scan showed her hilar CC mostly unchanged by the chemo. Oncologist suggested radiation and 5FU going forward.
    We found a clinical trial at Sarah Cannon institute using REGN2810, which is an anti PD-1 inhibitor much the same as Ketruda. In fact the oncologist said all the PD-1 inhibitors are pretty much the same for as their effectiveness.
    It can be combined with radiation and or certain chemo drugs.
    Here is a cut and paste about it:
    ]REGN2810 is a type of drug called a monoclonal antibody. REGN2810 is a fully human monoclonal anti – PD-1 antibody (a type of protein) that works by blocking the programmed death receptor 1 (PD-1), a cell receptor on immune cells that is involved in preventing the immune cells from destroying other cells. Blocking the receptor is expected to help the immune cells attack the cancer cells. This study is being conducted to test the safety of REGN2810 and to see if blocking PD-1 with REGN2810 will help the immune system attack the tumor, and to determine whether combining REGN2810 with radiotherapy and/or cyclophosphamide is safe enough and if it can help to improve tumor shrinkage.

    Since this trial has been going on for about a year at several different locations, I was wondering if anyone here ahs any knowledge about it.

    Thanks….Ben

    #12331

    Topic: Introduction

    in forum Introductions!
    vms
    Spectator

    I thought I would post my story here in case it helps someone. My husband often looked at this website as we were learning about this cancer and how to best proceed. We want to thank you for the useful information that has been posted here.

    I have Stage 2a extrahepatic distal bile duct cancer and am 34 years old. I was healthy prior to this. I was having severe upper right abdominal pain in July. After a trip to the ER, an enlarged choledochal cyst was found during an ultra sound. I then had an MRI which also showed a tumor mass. After that, I had 2 biopsies because they were having difficulty with the pathology. We also sent the specimen to the Mayo Clinic in Rochester which confirmed a poorly differentiated cholangiocarcinoma tumor. I then had oncology and surgery consults at KU Med locally and at the Mayo Clinic in Rochester.

    We proceeded with having a tumor resection in September at the Mayo Clinic in Rochester. They also reconstructed the bile duct and removed my gallbladder and parts of my liver and the enlarged choledochal cyst. I was in an unusual situation because at the time I was pregnant and of course had the health of my baby as my first priority. To make a long story short, the surgery to remove the tumor was successful; however, due to later complications I ended up needing an emergency C-section and we lost our daughter after a few days.

    After surgery, the oncologist and surgeon I saw at Mayo both recommended adjuvant treatment. The oncologist I see locally also recommended adjuvant treatment. With these 2 similar opinions, I was comfortable with moving forward with treatment after surgery.

    In November, I started 3 rounds of gemcitabine/cisplatin chemotherapy and followed that with 25 treatments of radiation. During radiation I also took the chemo pill Xeloda. I’ve just had a month break since radiation ended, and will be starting a total of 3 or 4 more rounds of gemcitabine/cisplatin chemo next week. The oncologist at Mayo did not at first recommend adjuvant radiation, but after speaking with the oncologist and radiologist at KU Med, agreed that it would not hurt to proceed with radiation as well as the chemo.

    In regards to fertility options, I did not preserve my eggs or embryos. I did take a Lupron shot prior to and during chemo, which was recommended by Mayo. However, it is debatable whether or not that helps preserve fertility during chemotherapy. A recent study from October shows it may not help. My oncologist did mention to me recently that gemcitabine/cisplatin are not as toxic as some other chemotherapy drugs and that fertility could still be an option after treatment ends.

    I mention these items in case this experience may be helpful to someone else.

    marions
    Moderator

    Katrina….great input. Prior to the ABC-2 study, there was no established standard chemotherapy for patients with locally advanced or metastatic biliary tract cancer.

    This clinical trial proved that the gemcitabine/cisplatin combination increases life expectancy by approximately 1.1 years. Note: Intrahepatic patients faired not quite as well.
    https://clinicaltrials.gov/show/NCT00262769

    You, – similar to the majority of resected patients – received gem/cis in an adjuvant setting (post surgery) and appeared to have minor, positive response. The reality is, we don’t know whether resected patients benefit from chemotherapy.

    This question will be answered with 2 conducted and completed studies. We are awaiting data outcome of the BilCap study:
    Xeloda or observation only:
    https://clinicaltrials.gov/ct2/show/NCT00363584

    and the Prodige12 study:
    https://clinicaltrials.gov/ct2/show/NCT01313377

    So happy to know that the second surgery removed the cancerous lymph node.

    Hugs,
    Marion

    #91895
    marions
    Moderator

    Tnmikishell……not sure you need to leave Vanderbilt for subsequent treatments. Dr. Laura Goff, oncologist, and member of our general medical advisory board, specializes in gastrointestinal cancers with an emphasis on tumors of the liver and biliary tract. You would want to consult with her or her team.
    As mentioned by others, obtaining a second opinion has become standard of care. For that you should consider a center treating a high volume of cholangiocarcinoma patients such as MD Anderson, Mayo , Sloan Kettering, John Hopkins. West Coast patients would look to UCSF and USC. Investigate insurance coverage prior to doing so.

    Is your next visit with the surgeon? If so, then you should investigate the possibility of coordinating the appointment with the oncologist as well. You also want to ask the physicians about molecular testing and whether it is routinely conducted within Vanderbilt. If not so, then you would want to have tumor tissue sent to a certified lab such as Foundation One or Perhera or other labs of this kind.
    Being that your husband has intrahepatic disease there is a 40% chance that he has an alteration (defect) in his DNA for which a biologic drug has shown great response. Sherri mentioned Matt, who had spectacular results.

    Most likely your husband will be treated with gemcitabine and cisplatin, the standard treatment of care for cholangiocarcinoma. At one point though, the tumors will continue to grow and become resistant to gem/cis. This is when a follow-up plan should be in place.

    Do others have additional thoughts?

    The attached link provides information on clinical trials. Please don’t hesitate from asking any questions you may have. We are here to help you in any way possible.
    http://www.cancer.gov/about-cancer/treatment/clinical-trials

    Hopefully this info did not overwhelm you.

    Hugs
    Marion

    #91993

    In reply to: Cholangiocarcinoma

    marions
    Moderator

    Maria……we so much can relate to your story and as Crissie mentioned, unlike a few years back, today’s patients have more treatment options than ever before. In fact, many compare this cancer to that of a chronic disease. In any case, that is how I like to look at it and it has been confirmed by the numerous posters on this site. All of us on this site will help you understand, support you and stand beside you.

    Most likely your Dad will be infused with Gemcitabine and Cisplatin, the standard first line of treatment for cholangiocarcinoma. Has a “port” or port-a-cath been discussed?
    Has a biopsy performed and had the physician mentioned molecular testing?

    This link offers a wealth of information. Please take a look and don’t hesitate from reaching out with any questions you may have: http://cholangiocarcinoma.org/newly-dx/

    Hugs to you and your family,
    Marion

    #91925
    marions
    Moderator

    Annabel….hope is what drives us. I have learned that in general and with current applicable chemotherapy, R1 patients (generally) don’t fair as well as those with negative margins.
    The question then becomes: treat or don’t treat? We know that nearly all physicians prescribe one or the other drug (often times Xeloda) in post surgery settings. But, we don’t have a clear picture regarding the efficacy of using these drugs.

    We will know much more with data release of the below two clinical research studies. The trials are completed, but it takes several months to analyze the data. There has been some talk of possible data release in early June for ASCO, but if not so, then we expect to hear by fall.

    UK: https://clinicaltrials.gov/ct2/show/NCT00363584
    Do extrahepatic (hilar and distal) resected CCA patients benefit from adjuvant therapy with Capecitabine (Xeloda?

    France: https://clinicaltrials.gov/ct2/show/NCT01313377
    Do extrahepatic (hilar and distal) resected CCA patients benefit from adjuvant GEMOX treatment?

    The ATTICA1 study is investigating whether the combination of Gemcitabine and Cisplatin is beneficial to the three cholangocarcinoma subgroups: intrahepatic, hilar and distal. The later refers to your Dad’s specification.
    This is the trial: https://clinicaltrials.gov/ct2/show/NCT02170090

    Not sure how it is in Europe, but here in the US, targeted therapies are currently the focus of much anticancer drug development. All are under investigation for our cancer, hence we don’t yet know the outcome of these studies.

    Adjuvant (post surgery) therapy has been a hot topic on this site going back to nearly the beginning of this forum and it will continue to be discussed until of course, an answer has been found..
    I hope for many others to chime in on this very important topic and share with us the reason for their choices.

    Hugs,
    Marion

    annabel24
    Spectator

    Hi everyone,

    A while ago I posted a message about my father of 54 who’s currently healing from the Whipple procedure here in Amsterdam. I didn’t have all the information at that moment yet, so I would like to give you an update on his case and ask for some advice.

    I’ve learned from the surgeon that they could only achieve a R1 resection, meaning that the margins aren’t clean in two places. Long story short: according to the doctors the survival rate is very poor with a R1 resection and chemo will make no difference. My father is now looking into the possibility to participate in an international trial called Acticca-1 with Gemcitabine and Cisplatin. He might be able to participate but we’re a bit unsure about whether this truly would prolong life or will only make things uncomfortable. Does anyone here know about this trial or is already participating?

    Furthermore, I’m a little confused about the way the doctors spoke about chances of survival in this case. One doctor just mentioned the gloomy statistics while the other said the cells found in the margins could also be dead cells (because they did find a lot of those too) or just other non-cancerous abnormal cells. The last conversation felt a bit too optimistic, but still gave a little hope. I’m wondering what people at the discussion board think; is a future with positive margins really as bleak as the first doctor sketches or is there still some hope?

    I hope you guys can help me out al little. After my last message I was blown away by the kindness and support in this forum, so thank you for that, It helps alot. :)

    Annabel

    #91693

    In reply to: Newly diagnosed

    marions
    Moderator

    Patricia…..welcome to our group. I assume she will be treated with gemcitabine and cisplatin. What about a biopsy? Has it been performed and tested for genetic/molecular alterations?
    Try to stay strong, we are here to stand by your side.
    Hugs
    Marion

    #12213

    Topic: Introduction

    in forum Introductions!
    cforrey
    Spectator

    Hello to everyone on the board! I am a 43 year old who was diagnosed with stage 4 intrahepatic cholangiocarcinoma in June 2015. In addition to a large tumor (~10 cm) in the liver, a number of smaller satellite hepatic tumors were identified as well. The local lymph nodes were swollen and about 10 pulmonary tumors (~1 cm) were also identified, indicating metastatic disease. My wife and I have a 3 year old daughter and a 4 month old son, who provide us inspiration. We have two beloved dogs who are part of the family and have provided us with great support as well!

    A quick rundown of my treatments to date: We are located in Maryland and have been working with Johns Hopkins. Starting in July, I have had two chemoembolization (TACE) procedures targeting the large tumor in the liver. I have also been on Gemcitabine/Cisplatin for about six months to attack the metastatic disease.

    We were very interested in enrolling in the T-cell immunotherapy NCI clinical trial at NIH that has been so successful for our friend Melinda. Last July, after a CT scan showing progression (new and growing tumors in my lungs), we worked with NIH to determine my eligibility in their trial. We sent blood samples, biopsy material, etc. The necessary markers were identified that would have made me eligible. However, and here we can report some good news, the TACE procedure at Hopkins has actually turned out to be quite successful in killing cancerous cells in my liver, to the extent that there was no “kill site” identified, i.e. no good location to harvest pure tumor cells. NCI essentially told me that I would need to grow some new pure tumor material for them to have enough material to work with. The cm-sized tumors in my lungs were too small to extract, as laproscopic techniques would require tumors at least 2 cm in diameter.

    Finally, we traveled to MD Anderson to meet Milland Javle to find out what other emerging treatments might be available to us. He mentioned targeted chemotherapy and immunotherapies as being possibilities.

    Currently, the size of the lesions are stable to slightly decreasing. The decrease seems to be mostly in the liver tumor and may be due to the TACE procedures, which killed many of the cancer cells, leading to slow shrinkage over time. We have reached the end of the standard-of-care Gem/Cis treatment (about 6 months of treatment). While additional gem/cis chemo treatment treatment is not required at this point, we have decided to continue this treatment for the foreseeable future. I have mixed feelings, because I am too fatigued to work and am becoming despondent being stuck at home in a useless state.

    We are trying to learn as much as possible about the treatment options available so that when we reach a state of progressive disease, we can make an informed decision. Of course, it is difficult for the public to get information about what is happening in ongoing clinical trials. BTW, the Washington Post just published an article yesterday about an Adoptive Cell Transfer study in Europe: https://www.washingtonpost.com/news/speaking-of-science/wp/2016/02/16/why-its-too-early-to-get-excited-about-this-unprecedented-new-cancer-treatment/?hpid=hp_rhp-more-top-stories_no-name%3Ahomepage%2Fstory.
    Chris and Laura

    #78785

    In reply to: Update on NIH Trial

    cforrey
    Spectator

    Hi Melinda,
    We just finished watching your presentation at the 2016 CCF meeting and want to thank you for your strength in sharing your story with the cholangio community. It is so powerful to see another person’s story, to understand how similar our experiences are. You are truly an inspiration to us. We wanted to write you to share our story and to seek your insight and advice, particularly on the NIH trial. I am a 43 year old who was diagnosed with stage 4 intrahepatic cholangiocarcinoma in June 2015. In addition to a large tumor (~10 cm) in the liver, a number of smaller satellite hepatic tumors were identified as well. The local lymph nodes were swollen and about 10 pulmonary tumors (~1 cm) were also identified, indicating metastatic disease. Shortly after my diagnosis, my wife heard your story, which has served since to provide us with inspiration and hope. We have a 3 year old daughter and a 4 month old son, who also provide us with inspiration. We have two beloved dogs who are part of the family and have provided us with great support as well!

    A quick rundown of my treatments to date: We are located in Maryland and have been working with Johns Hopkins. Starting in July, I have had two chemoembolization (TACE) procedures targeting the large tumor in the liver. I have also been on Gemcitabine/Cisplatin for about six months to attack the metastatic disease. (I appreciated your description of the Gem/Cys treatment and steroidal side effects.)

    We were very interested in enrolling in the T-cell immunotherapy NCI clinical trial at NIH that has been so successful for you. Last July, after a CT scan showing progression (new and growing tumors in my lungs), we worked with NIH to determine my eligibility in their trial. We sent blood samples, biopsy material, etc. The necessary markers were identified that would have made me eligible. However, and here we can report some good news, the TACE procedure at Hopkins has actually turned out to be quite successful in killing cancerous cells in my liver, to the extent that there was no “kill site” identified, i.e. no good location to harvest pure tumor cells. NCI essentially told me that I would need to grow some new pure tumor material for them to have enough material to work with. The cm-sized tumors in my lungs were too small to extract, as laproscopic techniques would require tumors at least 2 cm in diameter.

    Finally, we traveled to MD Anderson to meet Milland Javle, who said he knows you well, to find out what other emerging treatments might be available to us. He mentioned targeted chemotherapy and immunotherapies as being possibilities.

    Currently, the size of the lesions are stable to slightly decreasing. The decrease seems to be mostly in the liver tumor and may be due to the TACE procedures, which killed many of the cancer cells, leading to slow shrinkage over time. We have reached the end of the standard-of-care Gem/Cis treatment (about 6 months of treatment). While additional gem/cis chemo treatment treatment is not required at this point, we have decided to continue this treatment for the foreseeable future. I have mixed feelings, because I am too fatigued to work and am becoming despondent being stuck at home in a useless state.

    We are trying to learn as much as possible about the treatment options available so that when we reach a state of progressive disease, we can make an informed decision. You mentioned in your CCF meeting talk that something like 12 (?) patients have been treated in the NCI trial, with 3 having partial responses. Could you clarify the number of patients with solid tumors that have been treated in the trial, the number of cholangio patients, and the number of patients who have responded? Of course, it is difficult for the public to get information about what is happening in ongoing clinical trials. BTW, the Washington Post just published an article yesterday about an Adoptive Cell Transfer study in Europe: https://www.washingtonpost.com/news/speaking-of-science/wp/2016/02/16/why-its-too-early-to-get-excited-about-this-unprecedented-new-cancer-treatment/?hpid=hp_rhp-more-top-stories_no-name%3Ahomepage%2Fstory.

    I also am curious whether extreme fatigue was ever an issue for you. I have found such fatigue to be the primary obstacle for me in getting back to work and living as I would like to live.

    Thank you once again for what you are doing for the community,
    Chris and Laura

    gavin
    Moderator

    Next Generation Sequencing (NGS) to reveal mutations in IDH1 and its effect on patient (pt) outcomes in advanced biliary tract cancer (aBTC) who received gemcitabine and cisplatin (GC).

    http://abstracts.asco.org/173/AbstView_173_160282.html

    #91233
    marions
    Moderator

    jacdoll….thanks so much for sharing additional information with us. You are so right, this is the place to ask personal opinions and I wish others would help you out with this question. Unfortunately, we, the patients and caregivers (generally) are expected to make critical medical decisions for which we are unprepared, Input from others is so very important and much appreciated. This is what this board is all about, uncensored and open to all opinions. Occasionally thought and as it so happened in your case, I point out that absolute need for clarification with the physician is mandatory.
    Jacdoll, I briefly perused the inclusion criteria. What stands out is the following:
    “Failure to respond to standard therapy, or for whom standard therapy does not exist.”
    I assume that prior failing with gemcitabine and cisplatin or any of the other platinums, the treatment of choice for unresectabe CCA, is not applicable for this trial.
    I am thinking of you and sending strengths and hope your way.
    Please keep us in the loop; we care.
    Hugs
    Marion

    #12046
    jacdoll
    Member

    my original introduction post:

    jacdoll wrote:
    hello everyone,
    first I want to say thank you:
    1) that this website exists
    2) that an entire foundation for this terrible and rare cancer exists in the US
    3) to everyone who posts with such valuable information

    I have been digesting information for the last month and a half about this cancer.

    I’m a newbie here to the boards and myhusband, who is 47 years old, has the unfortunate diagnosis of inoperable intrahepatic cholangiocarcinoma, stage 4B. he was diagnosed roughly one month ago and was due to start the standard chemo (gem/cis) Monday the 18th (so late simply due to the holidays and also due to our own shock/denial/indecision about next steps + 3rd and 4th opinions received).

    however, we got word from a clinical trial just yesterday that my husband may be eligible even though he hasn’t started or tried any chemo yet. I understand that for some chemo works really well; for others, not so much.

    my husband, Tom, has the FGFR2 gene mutation, or over-expressed FGFR2. It just so happens there is a clinical trial about 4 hours away from where we live that is studying an FGFR2 inhibitor drug – phase II trial. There is one CC patient who started out on the trial 22 months ago and is still alive today, still on the drug. this seems very promising to us and even though we’ve been told to go ahead and start chemotherapy, what IF Tom gets into this trial and could begin taking a drug that would definitely stop tumor growth and possibly support tumor angiogenesis? could we really be that lucky?

    I don’t know and it’s a tough call to make (and I’ve seen here that a lot of people have had to make some tough decisions with this cancer).

    I wanted to know if anyone has any experience with this gene mutation type, a tyrosine kinase inhibitor drug and/or chemotherapy in those with the FGFR2 over-expressed gene.

    I’ve been trying to gather scientific data so that I can compare statistics for those who have done chemo and those who have undergone clinical trials and it’s been difficult so I thought I would throw this question out there:

    if you were Tom, which would you choose? because they, at this time, cannot be taken at the same time:
    1) standard 6 courses of chemotherapy (gemcitabine and cisplatin)
    or
    2) a tyrosine kinase inhibitor drug in escalating doses with NO chemotherapy?

    I would greatly appreciate some responses and maybe someone can help us with this difficult decision or at least sway us in one direction or another. Honestly, we are just so scared and don’t know what to do at this time. Obviously no one wants to make the wrong choice for their loved one or even with their loved one. If it was just me alone, I would do the trial. That’s my personal feeling and preference but I wouldn’t be able to live with myself if it didn’t work for Tom.

    Thank you,
    Ashley

    From Marion

    marions wrote:
    Dear Ashley….welcome and thanks for joining in. Please know that all of us are here to help by sharing information known to us however; everything must be verified by a qualified healthcare professional.

    Regarding the choice of gem/cis vs. clinical trial: the majority of research studies require prior failing of gem/cis or perhaps gemzar alone or gemzar in combination with another drug.

    Has your husband received eligibility confirmation for the by you mentioned clinical research study? Would you please share with us the clinicaltrials.gov identification number?

    Hugs
    Marion

    From me again:

    jacdoll wrote:
    Hi Marion,
    Hello again and thank you.

    Yes, I completely understand that everyone here is sharing information per their own experiences and I didn’t mean to pose my question in a way that meant I was looking for medical advice.

    I think it’s more of a personal question, kind of a “what would you do” question to anyone who wants to share.

    To answer your question, we are actually going in a few days to be screened for final eligibility, but per an initial review of his medical records we were told that he is a candidate. We were told that even though the trial inclusion criteria says you must have failed prior conventional treatment, there has been a change to the protocol that wasn’t also changed in the information per this link: https://clinicaltrials.gov/ct2/show/NCT01752920?term=fgfr2&rank=4
    Trial # is NCT01752920

    They are doing scans in a couple of days and we’ll know if he has been accepted at that time. Then, if so, the trial could begin a week later.

    I want to believe that this is not too good to be true.

    Thank you.

    #83946

    In reply to: Introduction / Welcome

    jacdoll
    Member

    hello everyone,
    first I want to say thank you:
    1) that this website exists
    2) that an entire foundation for this terrible and rare cancer exists in the US
    3) to everyone who posts with such valuable information

    I have been digesting information for the last month and a half about this cancer.

    I’m a newbie here to the boards and myhusband, who is 47 years old, has the unfortunate diagnosis of inoperable intrahepatic cholangiocarcinoma, stage 4B. he was diagnosed roughly one month ago and was due to start the standard chemo (gem/cis) Monday the 18th (so late simply due to the holidays and also due to our own shock/denial/indecision about next steps + 3rd and 4th opinions received).

    however, we got word from a clinical trial just yesterday that my husband may be eligible even though he hasn’t started or tried any chemo yet. I understand that for some chemo works really well; for others, not so much.

    my husband, Tom, has the FGFR2 gene mutation, or over-expressed FGFR2. It just so happens there is a clinical trial about 4 hours away from where we live that is studying an FGFR2 inhibitor drug – phase II trial. There is one CC patient who started out on the trial 22 months ago and is still alive today, still on the drug. this seems very promising to us and even though we’ve been told to go ahead and start chemotherapy, what IF Tom gets into this trial and could begin taking a drug that would definitely stop tumor growth and possibly support tumor angiogenesis? could we really be that lucky?

    I don’t know and it’s a tough call to make (and I’ve seen here that a lot of people have had to make some tough decisions with this cancer).

    I wanted to know if anyone has any experience with this gene mutation type, a tyrosine kinase inhibitor drug and/or chemotherapy in those with the FGFR2 over-expressed gene.

    I’ve been trying to gather scientific data so that I can compare statistics for those who have done chemo and those who have undergone clinical trials and it’s been difficult so I thought I would throw this question out there:

    if you were Tom, which would you choose? because they, at this time, cannot be taken at the same time:
    1) standard 6 courses of chemotherapy (gemcitabine and cisplatin)
    or
    2) a tyrosine kinase inhibitor drug in escalating doses with NO chemotherapy?

    I would greatly appreciate some responses and maybe someone can help us with this difficult decision or at least sway us in one direction or another. Honestly, we are just so scared and don’t know what to do at this time. Obviously no one wants to make the wrong choice for their loved one or even with their loved one. If it was just me alone, I would do the trial. That’s my personal feeling and preference but I wouldn’t be able to live with myself if it didn’t work for Tom.

    Thank you,
    Ashley

    #91186
    marions
    Moderator

    Brigitte….Gemcitabine and Cisplatin comprises most used drug combination for this cancer and I am sure that others will share their experiences with you. Wish the cancer had not returned so quickly, but as you so mentioned it was caught early.
    Hugs,
    Marion

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