Forum Replies Created
January 24, 2018 at 8:23 am in reply to: Gemcitabine With S-1 May Become New Standard of Care in Japan for Advanced Bilia #96525
Dear Mary, Thank you for this information. I get very confused by the cisplatin
As opposed to the capecitabine discussion. Are they the same thing ? Close to the same thing . Do you know why one would be used instead of the other. The reason I ask is that I am currently on a protocol that has me taking the capecitabine twice a day for 14 days in a row and than a week off. During that time I get the gem on day 1 and day 8. I’m lucky that I have handled the capecitabine pretty well, which now I understand is why they are giving it to me. So I am confused about what the “standard of care” is now and how we have moved from no chemo to this chemo
Any thoughts Thanks,
Rev. WayneJanuary 23, 2018 at 5:44 am in reply to: Hi Everyone #96509
Dear Semih, Sorry for all you are going through and thanks for being open to share what you are going through and you hopes and anxities for what lie ahead. I wish you were able to attend the foundations conference at the end of the month in St. Lake City. I am planning on going and will take notes. I too struggle with this line between curitive and pallitive . In the end we need to fight, fight fight and soudns like that is what you are doing. Every step of the way i have pusehd forward, not waiting when i was told to be patient and asking for what is not the “norm” I made my surgeon promise me that if the spot on my liver was indeed a return of the cancer , that he woudl operate and I told him i woudl not leave the office until he did. SO i hope you can find both strength in yourself and grace on the part of others. Please feel free to reach out either through the discussion board or directly to me. Good luck and prayers!
Rev. WayneJanuary 10, 2018 at 8:59 am in reply to: Understanding liver regeneration to bring new insights to the mechanisms driving #96404
Dear Gavin and the rest ,
First of all thanks for all you do in proving all of us information and support through the discussion board. The article / study you just shared with us makes two statistical statements that give me pause
In the opening of the study it makes that statement that the five-year survival rater is less than 17.5 % is this true statement. I hear so many different stats, but this one seems to be current. The other stat says that less than 7% qualify for surgery. I thought the number was more like 20%
I know stats are important to consider but not to live by. I just wonder if you have any thoughts about the validity of the stats and whey there is such a range… If feels like a lot of really smart people are telling us very different facts. It is hard to sort though.
Thanks in advance
Rev. WayneJanuary 5, 2018 at 12:42 pm in reply to: My Introduction and Cholangiocarcinoma Story #96388
Dear Mark ,
Hope things start making a litel mores sense and the path forward becomes more clear. I dont knokw about waiting to start your chemo, ( I waited about three months due to a number of road blocks and looking back , I wish i had started right away) but I think going to the annual conference is a great idea. I will be attending and plan to get there early and stay late. I didn’t ask to be part of this group, but since i am , I figure I shoudl give it my all. I have never met anyone who has this so that will change the last week of January.
I too have had my care done at Mayo. Amazing place , but human. I found that the team approach means that there might be more than one voice, openiions and direction . This can be both helpful and confusing. What i did find helpful was relying on the doctors that I have the greats rapour and confidence. That has helped me
Sounds like you are doing pretty well all things considered. I have found that staying active and working have really helped me from falling to far into the darkness. Hope you find something that works for you .
Blessings, Rev. WayneJanuary 3, 2018 at 12:39 pm in reply to: My Introduction and Cholangiocarcinoma Story #96378
Heartbreaking Sorry you are going through this like so many of us. I too am on my thrid cancer. No trophies for this triple crown other than the gift of another day. I too went to Mayo and had the gift of Dr . Nagorney and his team YEs I bleive you got the best there is and will contiue to have that care. Because I live in NewJersey Im doing my radiation and chemo out at University of Penn but still stay in touch with the good people at Mayo. I am doing the protocal that is being widnley proposed the cap oral twice a day for 14 days and the gem ( infusion on day 1 and day 8) will do the radiation after four cycles.. Its not fun but I have been suprised that I have not felt worse I know Im only a sneeze away from all that changing.
Glad your daughter found us. Keep the faith and keep in touch there are a lot of us out here that are prepared to walk with you and each other as it should be.
Rev. WayneDecember 18, 2017 at 8:04 am in reply to: MY CC is inoperable and incurable #96298
Glad you are finding a way to navigate all this and glad you feel a sense of community. A discussion group on line is such a limited way to express connections yet there is a power in it that many of us , including myself have found profound. Even though most of us will never meet, I feel your strong presence in my life.
WayneNovember 6, 2017 at 2:01 pm in reply to: Just diagnosised #96048
Thanks for sharing your story with your new friends. October 15 is not that long ago. I was diagnosed on Aug 30 of this year and it is hard to remember life before that. As dark as the stats are,many of us keep finding light and hope in many different places… I struggled so much with all the info I found on the web. Finally I realized this was my story and so this is your story too. IT is good to have this space ( this discussion board to hear, listen , learn and just be.
Rev. WayneNovember 4, 2017 at 10:15 am in reply to: My MIL – loved and missed by many #96029
I am sorry. Your courage is an example of what the whole CC family is called to be.
I am grateful for the fat that you share your journey with strangers you call family. It is so odd and yet so beautifl and powerful for you to call us all to attention.
Rev. WayneOctober 24, 2017 at 4:39 am in reply to: I’d Hoped Not to be Back Here …. #95933
Its always good to hear great news. In a world where statistics are so glum, stories lift the spirits and heal the soul
Keep going and keep sharing 🙂
Rev. WayneOctober 22, 2017 at 7:27 pm in reply to: My mom has Cholangiocarcinoma #95923
Though you dont know the people on this site, all of us feel your loss and want to be present with you . Blessings to your mom and to you and your family. This community cares about you .
WayneOctober 18, 2017 at 6:26 pm in reply to: from a new member #95905
Thanks Pat, Mary and Malinda,
It is so helpful to have three new friends in my corner. The good news is that after bugging the front desk , they have moved up my first scans and consultation for the middle of November. I am not sure why i am in such a hurry , especially if it is hard news. But each of you have gone through your own courageious journey so I will call on that for strength and inspiration.
Rev. WayneOctober 14, 2017 at 4:31 pm in reply to: from a new member #95871
Thanks for your note. This is all so confusing… markers, margins, grades this all has my head spinning.
I feel very blessed that they tell me that i have clear margins. I am not really sure what that means although i am told it is very good 9 I feel for those who dont) DO you know if ones margins are clean , than they don’t do any thing like chemo or radiation , at least till they see something ? I know your not my doctor but just wondered if you had a thought. People like you are the ones who have given me the best advise so far.
I do not know how this cancer has impacted you and your family , but I hope you are finding hope along the way.
WayneOctober 14, 2017 at 4:25 pm in reply to: from a new member #95870
Dear Hercules, aka Pat
Thanks for calming me down . So your saying I should not go out for White Castles for dinner . Darn
yeah my stomach is so weird. I know what to dress up as for Haloween ( my kids nicknamed me the “Scar”) I dont remember the part about muscle and scar tissue. Now I have something to look up for tonight.
Rev WayneOctober 14, 2017 at 4:21 pm in reply to: from a new member #95869
Thanks so much for reaching back to me. Is is an anxious time and while there have been many folks who have come to support me, having “club members” show up and share and cheer is a whole new demention.
your advise about excersise is well taken. I just want to go and get my energy ( and yes my body ) back . I should just shut up and praise God for being alive . I do that too.
And yes i am confused about what to do next. I guess I should go and ask as many people as possible. I want to avoid doing something for the sake of doing something.
Again blessings to you and your family,