CancerCompass message board discussion started by CamilleC on 7/2/2008 http://www.cancercompass.com/message-board/message/all,25627,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello,I am new to this board.  My Mother was diagnosed with Liver cancer in october.  They think it is pancreatic because of the markers, but have not found it anywhere else in her body.  She was started on Gemzar and has done fantasticly well.  She even went to Italy a month ago!!She was off the Chemo for 3 weeks as she came back from her trip and was ill (maybe caught something on the plane).  Her liver has now grown to twice its size and they say it is pressing on other organs.  She is unable to eat much and is living on liquid suplements.We feared the worse and yest. got confirmation.  She was given 6 months to live.I am realing.  BEfore the doc wouldnt give any time frame, being so positive and vague.  I realize this was best for my mother. she has been great feeling that miricles were possible.  She still doesnt know and we arent going to tell her.  Her docs agree with this.I am in virginia and she is in florida.  I just came back from a great 2 week visit with her, but did see her feeling not so great.  She is frightened of the appetite problem.Any support I can get and give here will be much appreciated.I dont know what to expect and dont know when she will go from being well enuf to get out and see friends, etc (she has been very active she is  a young 70.) to being bed ridden.  We have a family vacation scheduled late july.Thank you and God Bless all of you and your families. CamilleC Wed, 02 Jul 2008 00:00:00 GMT What was the experimental drug used on him for colon cancer? How much and what duration.  If that didn't work, that is important to all of us who might need an experimental drug in the furure should colon cancer occur again. Arnold Wed, 02 Jul 2008 00:00:00 GMT Hi Arnod! Great news on your scan,I'm very happy for you.  I am pretty sure that one of the drugs was called Leucovorin but I am not positive. I will call him in the morning and get back to you. He had 5 treatments all 3 weeks apart through a port that lasted 2 to 3 hours. He was told that there was not really any good chemo drugs for stomach cancer so they were going to experiment with other drugs.   saucey Wed, 02 Jul 2008 00:00:00 GMT So sorry that you got this news.  Doctors give  a timeframe to get you ready but noone knows for sure what or when or if.  The only adivse i can give from someone who lost their Mom to this (she survived more that a year after the 6 months they originally gave her )is to love and enjoy her now.  Tell her everything you want to tell her and let her do the same with you if she wants.  You may not tell her but her body may give her signals at some point.  Then she will really need someone to talk to. I have no regrets as I promised my Mom when she did start to know that i would "see her gently into that good night" just as she saw me gently into the world when she gave birth to me.  May God bless you, your Mom and your family Chrissy m Wed, 02 Jul 2008 00:00:00 GMT  Hi Saucey  - I think it's spelled leuvocurin - something like that.  That is one of the chemos they gave me for colon cancer along with two others.  Dose you father have colon or stomach cancer?  Thanks for  the congrats! Arnold Wed, 02 Jul 2008 00:00:00 GMT Hi Arnold!He has stomach cancer to the liver but they were experimenting with a drug for colon cancer. saucey Wed, 02 Jul 2008 00:00:00 GMT Thank you so much for your support Chrissy.I have healed a lot of old resentment I had for her and we have become so much closer.  she has said that she almost counts her cancer as a blessing to give her the time to really appreciate people, and she is so blessed by all the love and support she has received. What was your mother's primary cancer?I really am vacilating on what to tell her.  i want her to know to do the things now that she really wants to do.  she has been a big time procrastinator and that hasnt changed.  But I also dont want her to create what she is told and feel worse than maybe she would thinking things are still going well.What are some of the first signs of really ill health? CamilleC Thu, 03 Jul 2008 00:00:00 GMT Hi Arnold! My Dad just brought all the information down.They gave my dad eloxatin and 5-fluorouracil and leucovorin(5-FU/LV). The book my dad gave me says that eloxatin is given for stage 3 colon cancer after surgery to remove tumors.I have the book if you want more info. He also said that for the first 2 treatments only,he was given docetaxel. saucey Thu, 03 Jul 2008 00:00:00 GMT Camille, Your Mom is at a critical stage right now, in my experience.  She can react two ways from the "6-months to live" input.  She can agree with it and worry until it eventually becomes a self-fulfilling prophecy.  Or, she can go 180 degrees in the opposite direction.  She needs to live life to its fullest; eat healthy every meal, exercise daily (walk at least 30 minutes), and learn how to meditate.  I would also recommend she do some form of charity work when she feels up to it.  All of these things quell the mind of worry and replace those feelings with a gusto for living.  It's one thing for people to "say" that they have a positive attitude about living with cancer.  It's quite another, in the face of a death sentence, to actually "believe" that you'll be ok. I'm keeping positive thoughts and energy for you and your Mother.Donald A. Wilhelm, authorThis Time's a Charm; Lessons of a Four-Time Cancer Survivor ThisTimesaCharm Thu, 03 Jul 2008 00:00:00 GMT her primary cancer was bile duct and it was in liver too.  I also knew she was dying before she did.  I think for sometime she was scared to know so i took cues from her on how much to tell her. Then one day she just asked me if she was dying and i told her that i thought she was.  We had hospice care at home for her and social workers and nurses really gave me good support and advise and were there to help her emotionally on things that were sometimes too painful for me. If she starts to get worse check into that, i think i would have  had a breakdown without it.  speak to you soon. Chrissy m Thu, 03 Jul 2008 00:00:00 GMT So sorry to hear about your mom.  It is a tough journey for her and the family and I wish you the best.  I will give you my best advice based on what we went through.  But keep in mind, everyone is different and all cancers are different too.  My mom had small cell cancer of the lung metastacized to the liver.  Back in January, she was given 6 months to live since the third line of treatment was not showing that it was working.  Apparently, once you get past two lines of treatment for small cell, there is not much more that generally extends your life by very much.  She lived basically 5 more months.  When we were told after her 4th line treatment didn't work that she had about two months to live, she lived only one more month.  So in both occasions, the timelines were not too far off.  In the last month of her life, she was able to drive, do very simple errands, and walk about one block.  But she was very tired, had nausea/vomiting and extreme pain for that last month.  It was hard finding balance between taking the right amount of pain killers but not getting too nauseous or being too "out of it".  She was able to function better (spend time with grandkids) when she had more pain if that makes sense. Somehow pain kept her grounded somewhat.  The pain was mostly from her liver pressing on the liver capsule because it was inflammed.  She had a lot of ascites (swelling of the abdomen) and edema in her leg.  It wasn't until the last five days of her life that I noticed any yellowing of her skin and it wasn't bad even then.  Her liver enzymes remained normal or only slightly elevated until the last ten days of her life.  After that point, they stopped doing the liver enzyme tests (what was the point I guess).  In the last ten days of her life, she was still able to walk herself inside the dr office and then to the hospital admitting room. The reason she was admitted was because of the pain.  She had basically stopped eating for about the last three weeks of her life although she had a decent meal about every 3-4 four days.  Most days she had nothing because it made her feel worse.  The day before being admitted to the hospital, she had started a pain pump which allowed her to press a button that put the pain medicine directly in her bloodstream, but we felt like she needed to be in the hospital because it was hard to find the "right amount" and she was still vomiting or dry heaving a lot.  She also had a touch of bronchitis that she couldn't kick.  And those last few days before she went into the hospital, she had to write down every medicine she took and what time she took it because she was having trouble remembering things.  Now that I look back on it, the liver failure was probably affecting her brain at that point too.  We both thought it was the pain medicines and anti nausea meds that were creating the confusion, but it was likely also related to liver failure too.  So, she went into the hospital and they immediately increased the pain pump and gave her round the clock anti nausea meds.  She had a lot of confusion and disorientation, and I told them that I thought they had increased it too much.  They agreed I guess because they backed it off for two days. Well, the pain came back with a vengance and her confusion continued so that is about the point when I began making decisions for her because she became more and more confused, particularly during the night.  I slept nights five nights at the hospital and would try to work/take cared of kids during the day (I lived about 1.5 hours from her in Williamsburg, VA) and would drive home in the morning and return at night.  Her pain was under control at the end of the five nights but she was no longer able to take care of herself at home because she was too weak and too confused.  She agreed to go to a wonderful hospice house in Williamsburg where she spend the last five nights of her life.  Once she got to the hospice facility, she declined very quickly.  I think some of it was probably her finally accepting her fate.  She asked to visit with her grandkids and friends and said some things that made me think she was saying her goodbyes.  Despite the confusion, she still had many lucid moments during the nights and we had a lot of laughs and teary moments too.  The hospice people helped me greatly and I would recommend reading the Final Gifts, Death and Dying and Crossing the Creek to help any family member caring for someone dying.  For the last two days/nights of her life, her eyes were closed but I could tell she could still hear me on several occasions.  I am thankful that I was able to be there when she took her last breath although I know that that is a rare thing.  Also, I have read and been told my several hospice people that mothers generally seem to choose to die by themselves and not in front of their daughters and sons.  Many times the hospice nurses would say that the son or daughter would spend 15-20 hours a day at the hospice house but the mother would die when they left the room to get a cup of coffee or go to the bathroom.  Maybe mothers do want to spare their children of that moment, but I was definitely thankful to be there.  But, my mother chose to die within 5 minutes after I said a prayer for God to go ahead and take her with him and to give me strength. I have not been a very religious person during my 39 years, but going through this experience has made me realize the power of prayer and spirituality.  Also, I continue to be amazed by the number of things that have happened since her death that cannot possibly be coincidence and have let me know that she is there for me even after death.  Please feel free to send me a private message if you ever need anything.  Now that my mom has passed on June 14, I do not read the boards as often but I hope that I can be of help to someone.  LC  lccakes Fri, 04 Jul 2008 00:00:00 GMT Hi LC,  Your message and your story means the world to me.  Thank you for taking the time to share it.Joining these boards is my first step in facing the reality of her mortality and stories like yours scare me, but also give me hope that I can be strong enuf to help her and be at peace. My mother's liver is now not functioning well.  I wonder if that means that it is super critical or if its just like I am realizing that everyone is different and there is no way to really predict.  I, like everyone facing this desease would just like to KNOW what will happen cause its so scary.God bless you and your mother. Im glad that the spirit of God helped you thru her passing and now give's you those glorious moments of her presense.  Without that connection you wouldnt notice them.I have sent you a private message as well .Thanks again. CamilleC Sat, 05 Jul 2008 00:00:00 GMT