June 5, 2009 at 12:29 pm #29316lainyParticipant
Jamie, you go girl! Sounds like the truck may have hit you but you are now moving it out of the way so it doesn’t block traffic. I commend you for making the quick decisions to go forward. A medal of bravery is coming your way! Best of luck and I know we will behearing good news from you. Always, always there is hope.
Dr. Mahipal, how good to hear from you and such wonderful words of comfort and wisdom. It must be so hard to see your patients and know full well what you are dealing with. We give no sympathies here only caring and love and all kinds of advise. Maybe we should write a book! You have a wonderful attitude and I am so glad you are able to keep on treating people with cancer.
We need more doctors like you! Please keep us posted.June 5, 2009 at 12:06 pm #29315magicParticipant
I know how heartstopping the news can be with the bad-news scan.It can knock you about terribly.Think it all through carefully and get it all in perspective,then work out what you plan to do.
Best of luck JanetJune 5, 2009 at 5:55 am #29314mahipal33Participantmahipal33 wrote:jamie thats what how the life is ., Sail in the waters smoothly no matter how the tides are . no matter how the deep waters are .we all are with or with out cc are sailing in most uncertainitis. take a postive decision. fill your soul with matrix of courage and spread happyness even in your deep sorrows amids yourself and around you . life and death are 2 cerainitis face it . me too is the victim of cc iam a doctor in gastroenterology had liver resection 14monts back not advised any chemo or radio . iam so busy involved in the practice i have no time to think myself . no body knows my disease except my wife . i dont want any sympathies . thats the way i live. funny is i myself diagnose about 3 malignancies in gastric and colonic area every day . the feelings u see in your patients and club ur own feelings . its horrible . but i will fight it out that way . dr mahipal at firstname.lastname@example.orgJune 5, 2009 at 5:52 am #29313mahipal33Participant
jamie thats what how the life is ., Sail in the waters smoothly no matter how the tides are . no matter how the deep waters are .we all are with or with out cc are sailing in most uncertainitis. take a postive decision. fill your soul with matrix of courage and spread happyness even in your deep sorrows amids yourself and around you . life and death are 2 cerainitis face it . me too is the victim of cc iam a doctor in gastroenterology had liver resection 14monts back not advised any chemo or radio . iam so busy involved in the practice i have no time to think myself . no body knows my disease except my wife . i dont want any sympathies . thats the way i live. funny is i myself diagnose about 3 malignancies in gastric and colonic area every day . the feelings u see in your patients and club ur own feelings . its horrible . but i will fight it out that way . dr mahipal at email@example.comJune 4, 2009 at 7:05 pm #29312cherbourgParticipant
Hang in there Jamie and come back often. We are ALL on this journey with you!
PamJune 4, 2009 at 6:48 pm #29311jamie-dMember
Thank you so much for your responses. It sure has been a long 18 hours. I left a message for my oncologist that I want to start back on both drugs NOW. Hopefully I can get in tomorrow or Monday. I am also planning on getting a copy of the scan so I can go back to one of the other oncologists I’ve seen in the past and get his opinion. I ended up not getting treatment from him because I chose Mayo and he thought that would increase chance of a clinical trial, but I have continued to keep him updated. He was the only one I saw that wanted me to stay on chemo after the resection. Hindsight. But I had a fairly good 9 months off chemo so I am grateful for that. I still feel that “run over by a truck” shock feeling. I think it’s almost harder this time than when I was first diagnosed. Still feeling a little weepy but starting to get my act together. How many times have I told people that Drs dont know everything. I remember telling one oncologist that he may be a Dr but God was my healer. He’s not one I still see! Thanks for reminding me I need to fight. I’ve said all along that I was going to go down swinging, that I wouldnt make it easy for this monster cc to win. Pam, I actually found myself laughing when I read your post about the Dr getting hit by a beer truck! Lisa, I feel we are soul sisters in very similar places in our lives. Danielle, how kind of you to write me when I know you are dealing with so much right now. It’s getting to be quite a long post so I better stop, but please know that each and everyone of you has touched my heart by taking the time out of your day to share your thoughts and prayers with me. Thanks again and God Bless,
JamieJune 4, 2009 at 5:21 pm #29310cherbourgParticipant
DO NOT GIVE UP!!!! New techniques and medicines are coming out every day. (Nexavar was just out last June).
Read my signature line that my son said when he heard the prognosis about his grandmother. I think it’s an excellent way to live.
No one but God has any idea of how long we each have on this earth. *Realistically*….your doctor could get hit by a beer truck this afternoon!
Let NO ONE take away your hope and your wishes!
Now let me get down off my soap box…..*grin*
Much love and hugs,
PamJune 4, 2009 at 1:20 pm #29309gavinModerator
I am sorry to read this news. I hope you have managed to talk with your family about it. You have every right to be angry and I like what you say when you talk about not giving up and just accepting the doctors predictions. You sound like a fighter to me and I agree with everybody saying to fight this as you want to. As Kris points out, there are a lot of different treatment options to investigate.
I will keep you and your family in my thoughts and prayers.
GavinJune 4, 2009 at 1:02 pm #29308lisaParticipant
We need our own cheerleader squad, complete with pom poms.
Fight, fight, fight!June 4, 2009 at 7:35 am #29307devoncatParticipant
I am so sorry. I understand how devastating the news can be. I went 2 years with clean scans before they found a grapefruit sized tumor, a lymph node and spot on my liver. I decided to FIGHT! I know that realistically I am terminal now, but who knows whats going on in 2 years? There is always something in your life worth fighting for…for me it is time with my family and husband.
We all know what happens 99% of the time, but what about that 1%? That is what I hold on to. I cant remember who, but someone on this board had 70% shrinkage of their tumor after chemo. That sounds very hopeful. Maybe that could be you, or me or any of us here.
How about radiation? Is it possible to do on the lungs…I have no idea. What about cyberknife?
Unfortunately, you have to become more of an expert than your doctors. I bring in stuff all the time just to keep my doctor on her toes. Ask about alternatives, see what happens. Between photodynamic therapy, chemo emboliztion, sir spheres, cyberknife, chemo, radiation….there are so many options that can be discussed.
I know how you feel. I am in the same boat, but I am grasping those oars and rowing towards health. I will give up only when I want to, not when the doctors tell me to. You have alot to fight for. Remember that.
KRisJune 4, 2009 at 5:20 am #29306marionsModerator
Jamie……Sorry for the bummer knews. I have pulled up a previous discussion with our JeffG’s response. You might find some important information in this. http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=688
Also, there has been some stir about the chemo-combo of gemzar and cisplatin presented at the ASCO 2009. You might want to take a print-out to your doctor.
Although, it has not been brought up in the discussion with your physician but, is there a possibility for radiation on the liver? The lung metastases may grow very slowly and there is always a chance that they respond to chemotherapy. You might want to have another discussion with your physician and you may also want to search out a few more opinions.
Above all, hang in there. As Kris always says: This cancer has to learn who is boss.
Hugs coming your way.
MarionJune 4, 2009 at 5:11 am #29305roma35Member
Bummer Jamie, my heart just sunk. Heres the thing- everyone reacts differently with this cancer and with the treatments. Many on this site have had success with xoleda. Also, some have had lung mets for years. and they just grew very slowly. Nothing is for sure with this cancer, and I am hoping and prayiing you beat the odds like many have on this site.
Peace and Prayer
BarbaraJune 4, 2009 at 4:48 am #29304daniellemargParticipant
FIGHT!!!!!!!!! As a few of you wrote to me, there is no expiration date stamped on your foot. So many people have lived beyond the prognosis. Do what feels right to you. Jim has 6 doctors see him on any given day and they all say something different. The doctors here have loads of stories of CC patients who have lived far beyond the usual dismal stats (one woman in Las Vegas had a resection 11 years ago and is still going strong…) The chemo regiment can add some years. Be strong as you are. Follow your soul.
I am praying for you, the angels are with you.
DanielleJune 4, 2009 at 2:22 am #29303lisaParticipant
I know how you feel about graduations, college, and grandbabies. I’m right there with you, girl. It’s devastating and frustrating and so very unfair.
If I were you, I would go back on the chemo simply because that is a chance you are giving yourself. Don’t listen to the prognosis – no doctor can say with certainty how long any of us will live. I kind of hope that I will go when I’m ready and not before, so I’m determined to hang in there for the college graduations and all that!
Best wishes in spite of it all.
LisaJune 4, 2009 at 1:38 am #29302jcleggMember
I am so sorry for the bad news that you have received. I know how discouraging it is to hear the Doctor’s unhelpful, unhopeful prognosis. However, keep on fighting, and looking for a treatment avenue to pursue. I agree with the others – you be as aggresive as you want – it is your choice, and your life, and no one should take that choice away from you.
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