New and Stage 4 CC – surgery discovered rampant spread – help?
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Dear Maria, you are a fabuous, strong, Miracle woman!!! I am in awe of you!
Mind/ attitude have so much to do with everything in life. I have the Anti Cancer book and yes, it is a great book. Easy to read an to follow. Keep up your wonderful job of LIVING!I was diagnosed inoperable a year ago, at age 43. One big tumor (size of my fist) and 15 small ones, all intrahepatic. Was told to talk about death with my son (18). NO WAY!!!! I
Miles,
I was diagnosed stage 4 inoperable July 09 and given 3 to a maximum of 14 months to live. It’s now been over 20 months. Still feeling good and no pain. Just got back from a cruise. My doctors are amazed. I don’t have the energy I use to, but I don’t need naps. I do have chemo brain, but it’s a great excuse for everything
Take care. God bless.
Kathy
My situation is much similar to yours. CC is in stage IV and chemo will start next week.
Trust can move mountains. Keep the flag up, with positivity we can clime this mountain, don’t you agree!’
Jukka
Dear Miles and family – CC is so difficult and unpredictable. Seek treatment. Try chemo. Stay positive and encouraged. Cherish each moment. Hold each other so close. Say all the loving things you want to say. Trust God. Don’t ever give up hope no matter what anyone says to you. Your attitude and hope will take you so far. Blessings, Susan
I was diagnosed with Stage 1V on December 2010. Non-operable. The tumors did not respond to the gem/cis treatment so I’m enrolled in a clinical trial that begins April 27. Hopefully it will slow the tumor growth down.
Sorry you had to find us.
How’s Herb doing? It’s been one year and 2 months after he’s been diagnosed, so he’s beating the odds, what an inspiring ordeal. How did he brave that chemo side effects and other unfriendly stuff that goes with it?
cldymond wrote:Miles:
We are in Calgary as well. Herb was told in Feb of 2010 that he should go home and “get his affairs in order”. That was by a surgeon who was unable to operate due to the extensive spread of CC. Herb has Stage 4 Klatskins carcinoma with spread throughout the liver, gallbladder and spots in his lung. Thanks to a wonderful oncologist (who told us “there is probably no cure but with Chemo and other measures (ie bile duct drain – etc) we should be able to buy you some valuable, quality time”. Herb has 2 external drains (one in the bile duct and 1 in the gallbladder and also a stent. He has been through 1 round (8 x 3wk round of Gemcitibine and Cysplatin – 2wks of chemo – one off). Although Herb has way less energy, has lost weight and is now on Fentanyl patches for pain (which keep pain well controlled but not “dopey”, he is, as he says “Doing great”. His last few scans have shown no progression of the disease, which to us is great news. No-one can tell you how long you have and if they do …Don’t trust them” Our family has adopted the attitude – Herb is not dying of cancer…he is living with cancer and we are all enjoying every moment. We no longer worry about “how much time is left”, instead we realize how blessed we are to have been given the opportunity to “Live like we are dying” all together. If you ever feel the need to talk to someone …feel free to e-mail.
CherylHi Miles, my husband was diagnosed with stage 4 CC and start chemo by the 2nd week of April. If there’s still a chemo treatment for stage 4, I believe thru the grace of Lord we can defeat this. I’m religious and I believe in prayers, please keep the faith and never lose hope. I’ll include you in my prayers and so as other CC patients. Take care and God bless.
Miles:
We are in Calgary as well. Herb was told in Feb of 2010 that he should go home and “get his affairs in order”. That was by a surgeon who was unable to operate due to the extensive spread of CC. Herb has Stage 4 Klatskins carcinoma with spread throughout the liver, gallbladder and spots in his lung. Thanks to a wonderful oncologist (who told us “there is probably no cure but with Chemo and other measures (ie bile duct drain – etc) we should be able to buy you some valuable, quality time”. Herb has 2 external drains (one in the bile duct and 1 in the gallbladder and also a stent. He has been through 1 round (8 x 3wk round of Gemcitibine and Cysplatin – 2wks of chemo – one off). Although Herb has way less energy, has lost weight and is now on Fentanyl patches for pain (which keep pain well controlled but not “dopey”, he is, as he says “Doing great”. His last few scans have shown no progression of the disease, which to us is great news. No-one can tell you how long you have and if they do …Don’t trust them” Our family has adopted the attitude – Herb is not dying of cancer…he is living with cancer and we are all enjoying every moment. We no longer worry about “how much time is left”, instead we realize how blessed we are to have been given the opportunity to “Live like we are dying” all together. If you ever feel the need to talk to someone …feel free to e-mail.
CherylHi Miles,
Welcome to the site. Sorry that you had to find us all but I am glad that you have joined in with us all. I hope that you will keep coming back here as you will get so much support and help from us all. And please feel free to ask any and all questions that you may have and we will all do what we can to help in answering them.
Lainy and Kim have given you some great advice and there is not really much that I can add to that, but I wanted to stop by here and welcome you here. From what you have said it sounds like you have a great and positive attitude and the support that you have from your wife and mother will help you through this. Please do not give up hope, we have many members here who will no doubt also be along soon to share their stories with you as well.
You have done the right thing in coming here looking for information and the more information that you have the better informed you will be when it comes to making decisions. So read everything that you can and you will find a lot of knowledge here from the posts from our members. And we also have a great search function here at the top of the page that will throw up many discusions again from the members here. Once again, please do not give up hope, keep coming back here as we are all here for you and please let us know how everything goes. And I wish you every success with your upcoming chemo treatment.
My best wishes to you,
Gavin
Hello there Miles. I am sorry we have to meet under these conditions, but everyone’s paths cross for a reason. I will not bore you with all of the details of my story, but if you keep scrolling under the intro section of the discussion board, you will find my story listed under “My insprirational story”. I posted it months ago, so you’ll have to go thru a few pages. First of all, you are only a “goner” if you believe you are. I had successful surgery 8 mos ago and am alive and well. Yes, CC is a very rare and difficult type of cancer. I was lucky enough to find the only dr in the world who performs a surgery known as ex-vivo. I believe I was the 6th patient to undergo this type of surgery. Most cases of CC are inoperable, although there are many who have successfully underwent surgery. I am one of those cases. The miracle man, Dr. Tomoaki Kato, was brave enough to tackle my case. He is located at Columbia/Presbyterian Medical Center in NY. You may want to google him. I had undergone chemo, but failed the treatment of Cisplatin and Gemzaar. I was told by many physicians that my tumor was inoperable and there wasn’t much else left for me. Once again, I was lucky to find Dr. Kato, but it was because of my refusal to listen to anyone and my never ending determination that led me to him. I wish I had the perfect words to say to you, but unfortunately I don’t. All I can tell you is to keep searching for someone who will fight this fight with you. Too many drs and patients give up at the starting line. Please don’t do this. We all have a power deep within that can conquer anything. If you steer the wheel in the direction you want to go, you will get there. My belief, along with Dr. Kato’s is that nothing is impossible. You must try every drug, surgery, etc. until you conquer this. Of course, any cancer that has advanced never “looks good” but there are many survivors who have been told to get their affairs in order and are alive and well today. Don’t think of this in terms of statistics. If I did that, I wouldn’t be alive today. Tell yourself that you will beat this and keep the focus. When you hear all the negativity that accompanies this disease, you can very easily start to give up. Once again, please don’t do this. You are fighting for your life, so fight with every ounce of power you have. Time is of the essence with CC, so begin your fight right now. Do some research on drs and then go out & find one that has the most courage and intelligence that you can. With the right treatment, you can not only prolong your life, but actually beat this. Please keep me posted on your pursuit, and do not hesitate to call upon me if you should need anything. My email is kcirucci@msn.com. Email me any time. I will keep you in my prayers. I have just designed a pendant for cancer patients which says: This C will never defeat me. They are words I live by….for cancer will not defeat my spirit or my hopes & dreams. I hope you won’t let it defeat yours either. Your fight is my fight and I would be more than happy to help you along this journey. Anything is possible my friend. Never give up!!!
Kim
Dear Miles, welcome to our wonderful family but sorry you had to join us. You have really gone through the whole world of CC. Never count yourself out! You have age on your side plus the way you bounced back from all you have been through. We like to say that we try to stay realistically optimistic. We were not born with expiration dates and we just love to prove the doctors wrong. I don’t think the Doctors would even suggest Chemo if they did not think there was a chance to slow those suckers down. Your attitude is excellent and will help you more than you know. Yes, I do believe we have some members here who were diagnosed at Stage 4. I am sure you be hearing from them very soon. Your wife and mother sound like wonderful women and it sound like they have a good patient. I am in awe of you for how you have come through everything and I have a feeling you are not making any grand exit too soon! Please keep us posted and good luck on the Chemo.
I’m a healthy 43 year old male in Calgary, Canada who went to get a CT scan a couple of months ago because we suspected something might be up with my liver. Almost immediately I was in for surgery, only for the surgeons to decide it was too late. Who knows how I was still walking around. My CC had spread to my small intestine (blocked), large intestine (blocked), liver/gall bladder (encased in a large mass) and several nodules on my abdomen wall. In other words, the horses have left the stable. They performed “palliative” bypass work on my bowels, installed an internal metal stent to get my bile ducts working, but now I’m home facing the very bleak next steps. I am scheduled to begin Chemo in a week. I still feel strong, lots of energy (given I just had major surgery), I have completely changed my diet, left my stressful work, and am wondering what else I can do to help heal my body? I’ve just joined this site and this is my first post – I plan to read everything available here. Am I a goner? My wife and mother are dedicating themselves fully to healing me. I believe it can be done (50% of me) but the other pragmatic, realist half of me thinks my case is too far gone to help anymore. Has anyone heard or have examples of people Stage 4 like me pulling through? I’m very new to all of this. Where do I start?
Thank you,
Miles.
your words makes such a difference!! If you think I
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