Tagged: Our story ...
January 15, 2016 at 10:35 pm #83947marionsModerator
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?
MarionJanuary 15, 2016 at 6:34 pm #83946jacdollMember
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)
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.
AshleyOctober 7, 2015 at 4:02 pm #83945
Hello, Gwen and welcome to the best place to be for CC support and sorry you had to find us. May I ask what State you live in? Please keep in mind that we are huge believers in 2nd, 3rd and even 4th opinions and so glad you have had another opinion to validate the first. ‘At the top of the page is a SEARCH button and if you type in a word or 2 many past posts will appear on that subject.
I am going to ask a favor of you and I know it will get you more responses. Can you please copy and repost your first post as a NEW one under INTRODUCTIONS. You have latched on to a very long and older post and I am afraid your post will not be seen. Thank you.
Below is a site you may find helpful and please keep us updated on your progress!October 7, 2015 at 3:50 pm #83944gbbakerMember
Hello, I am 53 year old wife and mom of 3 daughters, 13, 19 and 21 and I was recently diagnosed with Cholangiocarcinoma. I have tumor metastasis in my liver and I am told by both my first and second opinion dr’s that I am presently non-resectable. With all the imaging that I have had, there is still no positive site of the tumor in the bile ducts. By process of elimination and by virtue of the liver tumor biopsies, my diagnosis was formed. I have just completed two infusions of Gemzar and Cisplatin and tolerated them very well. As all of you are, I am desperately frightened but trying to be as positive and hopeful as possible. After 3 rounds of chemo (9 weeks), I will be re-imaged to see what’s next. I would love to hear about anyone else who has a similar treatment and situation.August 11, 2015 at 10:35 am #83943middlesister1Moderator
Thank you for adding to the many who are thankful for all Chuck has contributed. After your post I took the time to reread this whole thread, and it is so spot on. The homepage has a wealth of knowledge for newly diagnosed, but this should be a must read as well.
CatherineAugust 10, 2015 at 6:36 pm #83942math-majorParticipant
Chuck you are unbelievable. That article was fantastic. I know you have helped many people. I’m so proud of you and love you very much. Every day we have with you is a blessing or as Aimee says a miracle.June 2, 2015 at 11:22 am #83941genevieveParticipant
Sorry to hear about your diagnosis and that it took so long. Have you thought of going to one of the big hospitals in Sydney for another opinion? My husband had one of his three resections for intrahepatic cc at the Mater in North Sydney, with a surgeon who also works at RPA. RPA would I presume see more and be more familiar with cc treatment than where you live.
GenevieveJune 1, 2015 at 3:29 pm #83940
Welcome, David, to the best place to be for CC support but sorry you had to find us. Yes, we do have members from Australia along with a great Nurse, Janet. I hope she is still checking on us and sees your post. I am sending out an S.O.S. for any members in Australia to respond to your post.
Never apologize to us for anything you do on this site! We do not grade papers.
I cannot believe you have gone 28 months with no treatment. You might try our search engine at the top and type in Australia and a ton of posts will appear from members there.
Good for you by standing your ground at the hospital demanding to be seen. Wow.
Please share with us what treatments you have had and how you are doing now. You are not alone as we all care.June 1, 2015 at 3:08 pm #83939delpak-daveParticipant
Hello there, my name is David, I am not sure if I have posted in the right area of this site so if not can someone please let me know, I have been watching this site for a short time and I am learning more about my Cancer in those few days than any of my treating Doctors have told me, some of the treatments and terms I have seen on this site have never been mentioned to me and to be honest this has frightened me, not through any fault of this site but rather the thought that I may have wasted a load of time traveling the path that I have to date.
I am 51 years old, I was diagnosed on 14th March 2014 with Intrahepatic Cholangiocarcinoma (I am sorry if I have spelled this incorrectly), my diagnosis only came after my seeing a number of different Doctors over at least a period of 28 months of being told there was nothing wrong with me and I just knew that something just was not right and so one night I phoned emergency services and was taken by Ambulance to the local Hospital and basically refused to leave for 3 days.
While in Hospital I was able to watch a bit of TV and what I can only believe to be a sign, I watch 4 different Medical shows over those three days and from the symptoms that patients were describing on the TV shows I had them all but no pain other than one time that I could recall over that 28 months of seeing Doctors and when I told the Doctors of what I had watched I was told that they felt that I was suffering from Depression (and now I wish they had been correct) they then agreed to at least do a CT scan and then my journey began.
I will stop for the moment, because I have not had anyone to talk to about this and now I have found your site I fear that I may type out a novel and I do not want to sound like I am crying victim but I really could use as much information as possible as it is becoming very evident that not a lot of experience with this Cancer is available in my location yet I have no intention of just laying down and plan to fight this as much as possible.
I would love to know (if allowed) to know if there are any other members here in Australia? but not limited to that and would share with anyone anywhere.
I am sorry for the drawn out post, I do appreciate the time anyone may take reading my post.
My Kindest Regards:
DAVID LApril 22, 2015 at 5:52 pm #83938gavinModerator
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your dad. But glad that you’ve joined in with us now as you are so in the best place for support and help and will get loads of both from us all. Real glad to hear that you are looking to get further opinions for your dad as to treatment options and I so hope that you have much success with this.
Please let us know how things go with this and know that we are here for you.
My best wishes to your dad,
GavinApril 22, 2015 at 3:23 am #83937
Dear Nikole, welcome to the best place to be for CC support and on becoming past of a remarkable family. I am so sorry to hear about your Father but glad to read you are getting right on that 2nd opinion. We are huge believers in 2nd 3rd and even 4th opinions. Because CC is so rare, the best thing you can do is get that other opinion. Go with your gut on these things as it will not fail you. You were not comfortable with your present ONC so it is time to see another. I am posting some sites we send to new members that may be of help to you. Please keep us in the loop on your Father’s progress, you are NOT alone you have lots of family here.
Free complimentary Book or e-mail download:
Biliary drainage – stent information card
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/April 22, 2015 at 3:08 am #83936nikoleParticipant
When I went to bed last night, I was questioning whether or not to look into that 2nd, 3rd, and 4th opinion. Thank you…because when I saw your post I got on the phone and scheduled with another onocologist. I am hoping we find that one that makes us comfortable with what he/she has to say.
I appreciate you taking the time to reply to my post. I find so much comfort in knowing others like you are there to listen and give advice.
NikoleApril 22, 2015 at 3:02 am #83935nikoleParticipant
Thank you for responding to my post. After reading your posts I was hoping that you would respond to the mine. I find strength and hope in reading these from everyone. I knew you were from Ohio and were battling like my father. It is helpful to hear from others who have dealt with the same issues as my father and I. Especially trying to find someone with a greater knowledge of cholangiocarcinoma. I will look into Dr. Sohal at the Cleveland Clinic. We were able to get an appt with Dr. Meropol from University next week and hope he is more optimistic than our previous onocologist. I will keep you updated with any new information we get. You and your family are in my thoughts and prayers.
NikoleApril 21, 2015 at 6:40 pm #83934dukenukemMember
I am being treated by Dr. Davendra Sohal (he is treating 15-20 patients with CC and similar liver cancers) at the Cleveland Clinic. I also met once with Dr. Bassam Estfan from the Clinic. Both are very dry, almost removed emotionally, but I have good feelings about them. They strike me as very knowledgeable. My previous onc was at the Seidman Cancer Center in Mentor, OH. She specializes in women’s breast cancer. That Center has seen only 4 CC patients in the last 3 years. She has run out of treatment options and nothing else to offer. Dr. Sohal had a possible trial (my platelets were too low to get into it) but also two more chemo options, one of which I am using now.
I never got the info I requested about University Hospitals and their CC experience.
I would not rule out Mayo in Mn or MDA in Tx (Dr. Javle) as places for second opinions.
DukeApril 21, 2015 at 3:59 am #83933sandynycMember
I am so happy you found this site. You will get a lot of great advice and direction, and I know there are a lot of resources in your area. I am sure someone will weigh in soon with recommendations and referrals.
The one thing I learned early on – and I know everyone will tell you- is to get a 2nd, 3rd, even 4th opinion until you feel comfortable with what you are hearing.
You will learn a lot, more than you ever imagined, about this horrible disease, but with knowledge will come understanding and power to make informed decisions.
Good luck and know we are all with you.
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