Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,65901,0.htm Fri, 24 May 2013 00:00:00 GMT Fri, 24 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello Bats1026, I represent the CanLiv Foundation, a nonprofit dedicated to advancing knowledge and research about hepatobiliary cancers and bile duct cancer is one of the main focus areas. You can find lots of helpful information atwww.canliv.org , including info on statistics,symptoms, diagnosis, treatment and more. We also post updates regularly on recent studies, tips for treatment and more on our Facebook page:www.facebook.com/CanLivFoundation. About bile duct cancer:http://canliv.org/bile-duct-cancer Free patient e-book: http://www.canliv.org/Get-Help/Patient-eBooklet.aspx Treatment & Resources: http://www.canliv.org/Home/Bile-Duct-Cancer/Treatment---Reso CanLiv Tue, 04 Dec 2012 00:00:00 GMT I represent the nonprofit, CanLiv Foundation, which dedicated to advancing knowledge and research about hepatobiliary cancers and bile duct cancer is one of the main focus areas. You can find lots of helpful information atwww.canliv.org . We also post updates regularly on recent studies, tips for treatment and more on our Facebook page:www.facebook.com/CanLivFoundation. Free patient e-book: http://www.canliv.org/Get-Help/Patient-eBooklet.aspx Facts: http://www.canliv.org/Get-The-Facts/Bile-Duct-Cancer.aspx Treatment options: http://www.canliv.org/Get-Help/Treatment-Options-for-Hepatob Clinical trials:http://www.canliv.org/Doctors--amp;-Researchers/Active-Clini   CanLiv Mon, 07 May 2012 00:00:00 GMT Thank you for giving me sites to find more information. bats1026 Mon, 07 May 2012 00:00:00 GMT Hi bats1026, I represent the nonprofit, CanLiv Foundation, which dedicated to advancing knowledge and research about hepatobiliary cancers and bile duct cancer is one of the main focus areas. You can find lots of helpful information atcanliv.org . Free patient e-book: http://www.canliv.org/Get-Help/Patient-eBooklet.aspx Facts: http://www.canliv.org/Get-The-Facts/Bile-Duct-Cancer.aspx Treatment options: http://www.canliv.org/Get-Help/Treatment-Options-for-Hepatob How to find treatment: http://www.canliv.org/Get-Help/How-to-Find-Treatment.aspx Patient resources: http://www.canliv.org/Doctors--amp;-Researchers/Patient-Reso CanLiv Mon, 07 May 2012 00:00:00 GMT Leonard, You have made some good arguments.  I don't want anything "sugar coated" for me.  But I do believe in the number one healer of all and that is God.  I cannot knock your beliefs, but I will not taken a negative attitude about this.  There are people who have survived Stage 4 cancers of different type so I and a whole lot of other people that I am praying for will go into complete remission with this.  It's only another chapter in our lives. Your commits are appreciated be please do not sound so bitter.  Are you a doctor of some sort?  And yes I am going to stay with MD Anderson because I have personally been told stories of how that clinic has helped. reinec Mon, 07 May 2012 00:00:00 GMT On May 02, 2012 12:23 AM bats1026 wrote: Thank you for your kind response.  After receiving such a horrible response from Leonard-Soluitions I was afraid to open yours.  The only reason I had asked about a time line was so I could help cross off a few things on my friend's bucket list.  Leonard made me seem like a monster!  My friend was at MD Anderson in Orlando and then at Florida South and both teams confirmed that the cancer had spread to other organs.  I will share your info about John Hopkins and the new study.  Once again I thank you for giving me advice instead of comdamnation.In April 2009 I was diagnosed with bile duct cancer and had the whipple procedure.   My doctor was Dr. Russell Howerton at Wake Forest University Medical Center in Winston-Salem, NC.  He is a great doctor and has a great medical team.  The surgery lasted 11 1/2 hours.  It was a very difficult surgery to perform because I had gastric bypass surgery in 2005.  If your friend wants another opinion I urge them to get in touch with Dr. Howerton.   I had radiation and 3 types of chemo within 6 months after that. Please be there for your friend and help them try to get through this struggle with your support.  There are no easy answers to this horrible cancer. I wish you & your friend strength & courage to get through this battle. windawoo02 Sun, 06 May 2012 00:00:00 GMT Hello Reinec, Well I guess you can call me a older adult also...I will be 72 this month. Karen, my wife was diagnosed with Bile Duct Cancer on April 4, 2003 and was given 6 weeks to live. Karen ended her journey of life on December 2, 2010. We battled it together for many years. This cance is horrible. Karen and I were married over 30 years. She passed away 3 days before her 60th birthday. Thank you for getting back with me. I haven't care-gave to any other person...only Karen for 24/7....I did thinks you would never believe.... Thanks....Leonard Solutions Sat, 05 May 2012 00:00:00 GMT Hi Leonard, Thanks.  I really appreciate you comments.  I'm an older adult and have been care giver for many loved ones in so many situations that I don't take in consideration that this may be the first time an individual has been a caregiver for someone or someone so close to them.  I appreciate your comment. God bless reinec Sat, 05 May 2012 00:00:00 GMT Hello Reinec, This is Leonard (Solutions) from Alamo California. You read my message wrong. I did not say the care-giver and the patient should focus on 'What's Next". The care-giver will be able to care for his or her love one much better if they knew what to expect next. You may have been care-giver and that's fine. But I have assisted many care-givers that wanted to know so the shock is reduced. The unknown is very difficult. Let GOD focus on the quantity...Let Him focus on what's next...Well I do not believe in that approach and there are many on Cancer Compass that agree with me. Take care, Leonard From Alamo California Solutions Sat, 05 May 2012 00:00:00 GMT I was a caregiver, also.  We didn't focus on "what's next".  We focus on life and the quality of it.  Let God focus on the quantity.  Let Him focus on what's next because tomorrow is not promised to any of us.   reinec Fri, 04 May 2012 00:00:00 GMT Bats1026 - It’s wonderful that you facilitated your friend being at the beach. One of my uncles did something similar - he took a trip with friends when he was diagnosed with cancer.  I don't doubt that your friend values your support and friendship.   It’s great that that some other posters are providing encouragement and information. There are some similarities between gallbladder cancer and bile duct cancer, but they are different cancers.  With respect to certain types of information, it’s better to hear from individuals with more relevant experience than mine.      curriewalla Fri, 04 May 2012 00:00:00 GMT Dear Curriewalla Thank you for the web site. I personally am very aware of this site. The information is nice but it is not good information for a love one or a care-giver....it says nothing about "WHAT'S NEXT". And believe me that is more important than reading all the tech stuff, Bats1026 and Tom...read it if you wish but it means nothing when you need to know Whats Next. Just my opinion, Leonard from Alamo California Solutions Fri, 04 May 2012 00:00:00 GMT What a heartwarming message!  My friend wanted to spend time at the beach so I was fortunate enough to make that wish come true.  She sent me a picture of the sun rise that she witnessed this morning.  She is living in the moment and loving every second of it. bats1026 Fri, 04 May 2012 00:00:00 GMT Please do not take this as an "attack" on you or your friend. Number 1 God is in control and he knows when our time will be. I've had a 20lb tumor removed off my liver over 2 and 1/2 years.  The surgeon did the scans, blood work and all and said the cancer was confined to the tumor.  I did follow ups with my oncologist and these scans showed mets on the lungs.  He prescribed Nexavar and I was on it for about 11 months.  It shrunk and cleared the met but it almost killed me because I lost so much weight, could not keep anything in my body, lost all my color (I'm black american).  I was then referred to MD Anderson.  This clinic is not a rip off.  I've known of 2 people who have gone and have a good testimony to give.  The doctor set me up with a 3 day schedule of PET, MRI, blood, etc.  Diagnois was bill duct HCC.  Started Oxip. and Gemzar.  3rd treatment the Oxipl. gave me a alergic reaction so oncologist just did Gemzar.  1st pet/ct showed good results with the Oxipl/Gemzar combo but the Gemzar was not helping the lung.  Went to MD Anderson and Advastin, Leucovorin, Irinocean and 5 FU prescribed.  Because Advastin is for certain other conditions, MD Anderson advised let insurance company know tried alternate treatment such as Nexavar.  I was blessed to get a pharmacutical to pay if insurance rejected.  Let me say this, the treatments of Leucovorin and 5FU were strong and I could not perform my job as a customer service rep so I took short term disability.  It was time to take care of me.  I realized the stress I as under to "work" around my bosses schedule so that I could get treatment.  I now realzed I had a major cut and another cut 4 months ago but hard headed me kept working.  I was not taking care of me. I have always had a strong faith in my God because I know I belong to him.  Since I've been on disability, I feel like a burden has been lifted off me.  Stress can kill you. Your friend is still waking up every morning.  Enjoy her and tell her to enjoy herself, you, her family and the beauty that God has put in front of her.  Stop talking about Cancer-I know as a fact, I don't want to here it (I'm not in denial) but I want to live and I will live to see my kids and grandchildren grow old and see my great grand kids.  I'm writing a book and I know in the 2 1/2 years since I've work, I'm sure I have touch someone's life to move on.  Buck lst is so "end".  Your friend has all the time to make the quality of her life skyrocket!  You are making yourself sick thinking about when the end will come.  Haven't you been reading about the innocent lives being taken by gunshot and violence.  What about the flood and tornadoes. Girl live and tell you friend to live. I'm a survivour and this is just another chapter in my book to encourage others.  Hang with the doctors because God has control over them too.  I tell my doctors they have misdiagnos me...they laugh..but I tell them, I know whose I am and I AM NOT giving up.   Don't give up! Exercise, travel, laugh, lay down and watch LMN all day if you feel you don't want to do nothing.  Put others in charge.  I have a terrific family, friends, church members and I've even had strangers rub my hands while taking treatments. Your friend is alive.  I'm alive and like I say I'm not giving up.  My decision to take care of me was the best I could make.  I know I can get a job when this chapter is finish.  I can promote my book.  Hope you and your friend will come to the signing. God bless you both  reinec Fri, 04 May 2012 00:00:00 GMT Thanks again, Tom! bats1026 Fri, 04 May 2012 00:00:00 GMT You're welcome Bats1026 and Tom. At the link, below, someone has posted an overview of bile duct cancer. A friendly caution:  the webpage discloses some grim statistics and frank facts.   http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=762   curriewalla Fri, 04 May 2012 00:00:00 GMT Hello Bats1026 Yes this is that mean person that tells you the truth. I'm assuming the cute :) face means you are happy with all this latest infromation. The Infromation you received is very good and very specific. BUT....be very carefull how you use it. You may cause more harm than you think. Giving false hopes is very serious. Yes it's always good to stay positive. Staying positive is good medicine when it comes from the right source. I am sure you have very good intentions...But be very careful what you suggest. Without knowing it, you may cause more harm...I have been there, you haven't. You can take my advice or turn your back on it...it's all up to you. Leonard from Alamo California  Solutions Thu, 03 May 2012 00:00:00 GMT :) bats1026 Thu, 03 May 2012 00:00:00 GMT Your Welcome.   From what my relative is experiencing she has been told  the only real permanent cure for bile duct cancer is surgery/ resection of the liver to remove the tumor or liver transplant.   As we were told the SBRT/ Radiation therapy following  chemotherapy are ways to contain the disease, reduce tumor size in bile duct and prolong life but aren't a permanent cures.    Hope this clairfies.  I wish your friend the best.  It is so devasting to see our loved ones go through this so I know what your going through.  I'm happy to help. Izzy123 Thu, 03 May 2012 00:00:00 GMT OMG!  I will pass this info onto the family immediately.  THANK YOU! bats1026 Thu, 03 May 2012 00:00:00 GMT My relative also has this cancer and sometimes these MRIs and CT scans can show nodules or masses that could not be metastisis.  The best scan as I understand  to determine metastisis is a Pet Scan or actual Biopsy of the cysts or mass.  My relative had something on her lung and her heart which they initially thought was a met but actually  was benign. No biopsy was needed because when they  did a Pet Scan the only area that lit up was the Bile Duct Area.  These tests are very expensive so sometimes you have to push insurance companies to do them.  She was also seen by a cardiolgist and pulmonologist who looked at the MRI and CT scan that had cysts or potential masses that determined were benign.  I would definitely take the scans to a second opinion or even 3rd opinion. There are treatments for bile duct cancer SBRT Sterotactic Radiation Therapy and Chemotherapy involving Cysplatin and Gemcitabine.  Time is of the essence with this disease so please tell your friend to seek a second opinion and get copies of all bloodwork, scans etc and seek the best doctor possible. Do the Pet CT scan too?  It does detect cancer throughout the body.  Not at a 100% but I think it's better in determing metastis in the other parts of body.  It's best to find the doctor that is experienced with this cancer as it is very very rare.  Hope this helps Izzy123 Thu, 03 May 2012 00:00:00 GMT Hi CurrieWalla  thank you for sharing the link to that message board-i just checked it out it is packed with good information and chat boards                  Tom tomco727 Wed, 02 May 2012 00:00:00 GMT Thank you for understanding and giving me great advice.  You are a great relative to have on your side during such a difficult time.  My friend did have a biopsy of the liver but the involvement of other organs was through MRIs and CAT scans.  No treatment.  I will check out that other site.  Once again thanks. bats1026 Wed, 02 May 2012 00:00:00 GMT Thank you for understanding and giving me great advice.  My friend did have a biopsy of the liver but the involvement of other organs was through MRIs and CAT scans.  No treatment.  I will check out that other site.  Once again thanks. bats1026 Wed, 02 May 2012 00:00:00 GMT First,   I know what it is like to have someone close to you with this disease.  A person dear to me has this disease too.  My question to you is  how did both  teams determine the cancer had spread.   Was  there a biopsy completed on other organs?  or  from Imagery such as CT, Pet Scan , or MRI?  Did she have any treatment done yet?      Izzy123 Wed, 02 May 2012 00:00:00 GMT It appears that I cannot edit, so I want to clarify this paragraph: "The information that you have provided in your posts is not detailed enough for anyone - doctors included - to comment meaningfully about your friend’s situation. Even if you provided more details, it’s likely that most attempts at answering would involve alot of speculation." Clarification: With more information doctors could probably provide information about the stage of the cancer, including survival rates.  Perhaps certain medical events (e.g. kidney failure) enable doctors to give a more accurate prognosis.  But during much of the time during the journey with cancer, I think it is difficult to say with accuracy how long someone will live. curriewalla Wed, 02 May 2012 00:00:00 GMT Hello bats1026,  I am not a medical professional. I know someone who has gallbladder cancer which, like bile duct cancer, is a cancer of the biliary tract.  The information that you have provided in your posts is not detailed enough for anyone - doctors included - to comment meaningfully about your friend’s situation. Even if you provided more details, it’s likely that most attempts at answering would involve alot of speculation.  If you surf the internet, you can find statistics about biliary tract cancers. However, if I understand correctly, statistics tell you about the group of people with cancer but don't map a personalized path for each individual in the group. Overall, the statistics for gallbladder cancer and bile duct cancer are grim. These cancers tend to be very aggressive.   My relative’s approach was to be informed, keep notes of all doctor’s appointments and get copies of all blood tests (e.g liver panel, tumour markers) and CT scan reports.  I have become what you might call a research buddy. I self-educated, and can discuss things with my relative when he gets results. Both my relative and I made a deliberate choice to know the hard facts about his cancer. Not everyone wants to know.    If you are looking for additional sources of support and information in this difficult time, the cholangiocarcinoma foundation board is more active right now than this cancer compass board. Newcomers are welcomed warmly. The participants on the cholangiocarcinoma.org board are a combination of proactive, realistic and cautiously optimistic. They take the approach that no one has a time stamp. cholangiocarcinoma.org /punbb/index.php" target="_blank" rel="nofollow">http://www.cholangiocarcinoma.org /punbb/index.php curriewalla Wed, 02 May 2012 00:00:00 GMT I did not come to this site to upset you or to be berrated by you.  I was just seeking guidance and you made me out to be a monster. Since anyone can read your responses please stop your rants against me because new visitors to this site might be turned off by your negativity and lose out on an opportunity to obtain valuable information as Tom shared. bats1026 Wed, 02 May 2012 00:00:00 GMT Hey Bats1026...that was not a horrible response. False hopes is a horrible response. The only reason you wanted to know her death timeline is so you can cross off things on her bucket list.  WOW... Remenber your question and everyone responding to you should remember your question. You want to know when is your friend is going to die...another WOW Tom gave you some good advise....so now what. Does that answer your question. I will give honest answers....but do not ask me to play GOD for you. If you lay out specifices about your friends issues I can and will help you. I have 7+ years living with Bile Duct Cancer...I know whats next if you tell me what is going on now. Stay with your friend and comfort her...that's what she wants....she does not want you to tell her she has 6 weeks or so to live. Thank you, Leonard from Alamo California Solutions Wed, 02 May 2012 00:00:00 GMT My Dear Bats1026, You are in shock in in which the way I responded. What did you want to hear from me...your friend has 3 weeks, no she has 2 weeks...no she has 2 years...no she has 5 years. Just what did you want to hear... Read my first paragraph. I did npt attack you...I tried to get you to think a little. You asked a foolish question... Who do I think I am...well if you wake up you will see I am your best friend with a honest asnwer. Do you want to lie to your friend...You and the doctors have no idea when your friend will pass...so why do you want me to play GOD for you. You are seeking guidance....what guidance are you looking for....Leonard said you will die in 6 months and then when your friend passed away in 6 weeks you blame Leonard....that's the doctors say NOTHING. You want to know what your friend is against....she in ending her journey of life....and want to play GOD and tell her when.... As I told you...comfort your friend and stop trying to select her day od death. Your honest friend whether you know it or not. Leonard from Alamo California I am caring more than you know. Solutions Wed, 02 May 2012 00:00:00 GMT Thank you for your kind response.  After receiving such a horrible response from Leonard-Soluitions I was afraid to open yours.  The only reason I had asked about a time line was so I could help cross off a few things on my friend's bucket list.  Leonard made me seem like a monster!  My friend was at MD Anderson in Orlando and then at Florida South and both teams confirmed that the cancer had spread to other organs.  I will share your info about John Hopkins and the new study.  Once again I thank you for giving me advice instead of comdamnation. bats1026 Wed, 02 May 2012 00:00:00 GMT Bats -welcome to to message board where many of us come for answers and support ,right now your friend without a doubt is devastated by the diagnosis and very depressed and In a while may feel she wants a second or third opionon -maybe she was not in a top notch facility like -John hopkins,Mayo clinic or many others -it is hard to say without knowing why the drs said no Hope ,was it an aborted whipple surgury ,or found in many other areas -if it was just an average hospital that does not specialize in pc -just can obtain  a copy of the scans and send them to John hopkins or there is a new study mentined on the pancreatic board this morning -just use the drop down box above-a new study that is looking for people that have not been treated ,in one or more locations ,anyway it is your friends decision,and her fight we have to respect there choice -even though it hurts us too.nobody wakes up and says wow what a nice day and browses the cc website -no our lives have been touched by this monster and it will never be the same -what helps me the most on cc is I take the good positive  constructive information  and support and use it  and I just leave the negative mean spirited stuff here ,with its rightfull owner    take care and good luck to you and your friend         Tom tomco727 Tue, 01 May 2012 00:00:00 GMT Leonard, I am in shock with the way in which you have responded to me.  You have written numerous kind responses before and I never would have thought that you would attack me like this. Who do YOU think you are?  How dare YOU respond to me like that when I was just seeking guidance.  I thought that someone caring would understand my concern and confusion and help me comprehend what my dear friend was up against.  bats1026 Tue, 01 May 2012 00:00:00 GMT Dear Bats1026....Well Bats, it's none of your business how long she has. If you want to do anything good for your friend, honor her wishes. Stay with her and comfort her. By the way...you asked, "What can we tell you about the time your friend has on this beautiful earth" Well Bats1026 the answer is "NOTHING". And allow me to say one more thing...What on earth motivated you to ask such a question...do we look like GOD to you. Read you message again...and if you can not understand what I am saying...you need more help then your dear friend. Think about it, Leonard (Solutions) from Alamo California Solutions Tue, 01 May 2012 00:00:00 GMT Over the past 4 days my dear friend has been diagnosed with bile duct cancer and is being sent home because there are no more options left on the table.  She didn't want to know how long she has but I do.  What can you tell me? bats1026 Sun, 29 Apr 2012 00:00:00 GMT