February 1, 2016 at 5:54 pm #91358
Again, thanks for all of your warm welcomes.
I did have genetic sequencing done and was told there was no clinical trials for my type of tumor. However, there was another trial i looked into, called B6J396. I did discover that one had to have a failed a platnium based chemo. I did not qualify so that is out. I have also been in touch with some fantastic doctors…..one in Great Britain, one in Canada and one at the Mayo Clinic that heads up trials. It is so amazing to me that they would email me back, not being a patient of theirs. And quickly may I add. They all said they had nothing to offer. So, after much thought and surfing many websites, I have decided that i will not go further and check out clinical trials. With the research i have done, there are so many side effects that i do not want to deal with. If it was an FDA approved drug, I would look at it differently but the current one i was looking at was a phase 2 so it’s still in the early stages as far as i am concerned. . At the present moment, i am feeling great, have energy, and if not told, no one would know i have cancer or on chemo. I know I will not be feeling like this forever, but am accepting what my future will be. I know we all will choose different routes for ourselves and i feel comfortable with my decision.
I am looking forward to reading this website and getting to know some of you and of course, supporting where i can.
Again, thank you to all of you kind-hearted people.
DonnaJanuary 30, 2016 at 7:28 am #91357mbachiniModerator
Welcome to the discussion board and I am so very glad you are here! I have no idea what magazine article you read my story in, but I am so happy you did and it led you here!!
What a road you have already traveled. I already know you are strong, determined and full of courage to have gone through so much. Please keep us updated with your progress, and know we are all here to support and help in any way we can! Hugs and prayers sent to you.
MelindaJanuary 29, 2016 at 2:29 am #91356pfox2100Member
Hi Donna and welcome. As much as we all hate as to why we are here, it’s a wonderful group of people. Do you know or have you had genetic testing? Your trial number sounds similar to mine hence why I asked about the mutations. The one we might look at down the road is BGJ398. I am curious the difference. Or maybe I am reading it as a 6 instead of a G.
Hugs and continued prayers to you and your journey.
PorterJanuary 28, 2016 at 7:21 pm #91355gavinModerator
Welcome to the site Donna! Sorry I am late but just wanted to show my face and say hi to you!
Hope to be hearing lots from you!
My best to you,
gavinJanuary 28, 2016 at 2:00 am #91354marionsModerator
Donna….correct, we had prior conversation. So glad you to see you connected with the great members of this site as well.
MarionJanuary 27, 2016 at 5:57 pm #91353
Thank you so much to all of you for the warm welcome. It makes me so grateful to have access to this site. I know i will be learning a lot from all of you and getting support from people who actually are going through somewhat the same experience I am and that is so comforting, Yes, I have a wonderful family and friends but there is something special about the discussions i will be having with all of you. God bless and i will be going forward in searching for my next step.
And Marion, are you the same person that i have emailed to in the past?
DonnaJanuary 27, 2016 at 11:22 am #91352middlesister1Moderator
Lainy always says you don’t know how strong you can be until there comes a point you have to. I’m sorry it sounds like you’ve faced more than your share of times where you needed strength. I’m happy you found our group (Melinda is amazing) .
Best wishes down the next path you take- if it’s the clinical trial, I hope for tremendous success.
CatherineJanuary 27, 2016 at 5:33 am #91351iowagirlMember
Donna, Welcome to the group and boards. I am an intrahepatic CC cancer patient/survivor, having just had my second resection in Dec 2015. You have been through quite a bit from an early age. It’s just remarkable that you seem so matter of fact about all of this. But, I admire that, because you seem to be able to step back from yourself and look at some of this logically. The only problem is that none of us have a crystal ball to figure out the best course.
You may want to look at getting another opinion as to ideas for how to go forward right now. This is especially since you say that your doctor isn’t all that familiar with CC. He may have done well for you for quite a while, but this may be the time to bring in some big guns and get other viewpoints. We encourage second , third and even more opinions .
If you go ahead with the trial, I wish you the best possible luck and pray that it is your answer right now.
Julie T.January 27, 2016 at 1:18 am #91350debnorcalModerator
I would also like to welcome you, Donna. Wishing you all the best with the trial.
DebbieJanuary 26, 2016 at 8:08 pm #91349marionsModerator
Donna….welcome to our site and thank you for joining in. You have had quite a journey so far. I admire you for your spirit and determination.
Our Patty had been on the B6J398 study https://clinicaltrials.gov/show/NCT02150967
You may read up on her experience by using the below link:
Additionally, you may enjoy reading up on Melinda’s story. You may find it here:
Again, so happy you found us; I look forward to many more discussions with us.
MarionJanuary 26, 2016 at 7:32 pm #12128
I am new on this site and am quite excited to chat with so many of you. With this cancer being so rare, not even my doctor knows a whole lot about it so i am grateful for this board.
A little bit about me- I am 68 years old. I started out with UC when i was 15 years old and have had several remissions before i got colon cancer in 1995. Around 2003 i was diagnosed with PSC which was puzzling since i knew nothing about this disease. In 2006 i had breast cancer and in 2013 i was diagnosed with bile duct cancer. I had a bowel blockage and during surgery it was discovered. It metastisized to my ovary and abdomen. I have been on Gemzar and Xeloda since October of 2013. My CA 19 was nice and low until about 6 weeks ago. It is now rising with every blood test and is now at 118. My chemo may just have reached it limits. I am now looking at clinical trials. I have been talking to UCLA about a clinical trial with a drug called B6J398. With all of the side effects of these drugs, it is quite scary to even think about going on them. It can affect your kidneys and because of a complication of my bile blockage, i lost a kidney.
So i am here wanting to become acquainted with this site and you folks who sound so caring and wonderful. I found out about this site from Melinda B. There was a magazine at a local cancer outreach center and i read her marvelous story. So thank you to her for my discovery of this site.
- You must be logged in to reply to this topic.