CancerCompass message board discussion started by eaglessoar on 2/12/2008 http://www.cancercompass.com/message-board/message/all,20886,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am wondering about stent replacement for my sister who has been diagnosed with adenocarcinoma: favoring cholangiocarcinoma and needs to have the plastic stent replaced with a stainless one within 3 months of Dec 28, 07. Is this surgery tough on patients who are on chemo and have had the surgery laparscopically for gallbladder then ERCP.My sister is having chemo-Gemzar ( second treatment today). I am interested in any help with suggestions for eating, nausea (now on Compazine), has tons of mucous (taking Reglan for this and seems to be helping). She had severe headaches the day after her first chemo and had some low back pain but these have eased.She is very weak and very drowsy (not opening her eyes much), with very sleepless nights.Thank you for any thoughts, and especially your prayers for my sister, Bonnie. Thank you,Blessings,My sister's voiceEaglessoar eaglessoar Tue, 12 Feb 2008 00:00:00 GMT  On 2/12/2008 eaglessoar wrote:I am wondering about stent replacement for my sister who has been diagnosed with adenocarcinoma: favoring cholangiocarcinoma and needs to have the plastic stent replaced with a stainless one within 3 months of Dec 28, 07. Is this surgery tough on patients who are on chemo and have had the surgery laparscopically for gallbladder then ERCP.My sister is having chemo-Gemzar ( second treatment today). I am interested in any help with suggestions for eating, nausea (now on Compazine), has tons of mucous (taking Reglan for this and seems to be helping). She had severe headaches the day after her first chemo and had some low back pain but these have eased.She is very weak and very drowsy (not opening her eyes much), with very sleepless nights.Thank you for any thoughts, and especially your prayers for my sister, Bonnie. Thank you,Blessings,My sister's voiceEaglessoarHi Eaglessoar,Sorry...I responded to your last message before I saw this message.It sounds like your sister Bonnie has a Klatskin Tumor.It also sounds like they are not going for surgery but rather electing to do Chemo.  This sounds serious...chemo and/or radition to treat this type of cancer is not that great. But one never knows...they may have and/or may get this situation under control. Between you and I, I would focus on bonnie's quality of life rather than her quanty of life...this is always a very sad and hurtfull thing to go through...one thing you should not do is show your emotions in front of Bonnie...a smile on your face will go a long way. But don't be surprised when Bonnie gets angry and difficult...it will happen...just do your best.Wishing you and Bonnie all the best.Leonard    Solutions Tue, 12 Feb 2008 00:00:00 GMT  On 2/12/2008 eaglessoar wrote:I am wondering about stent replacement for my sister who has been diagnosed with adenocarcinoma: favoring cholangiocarcinoma and needs to have the plastic stent replaced with a stainless one within 3 months of Dec 28, 07. Is this surgery tough on patients who are on chemo and have had the surgery laparscopically for gallbladder then ERCP.My sister is having chemo-Gemzar ( second treatment today). I am interested in any help with suggestions for eating, nausea (now on Compazine), has tons of mucous (taking Reglan for this and seems to be helping). She had severe headaches the day after her first chemo and had some low back pain but these have eased.She is very weak and very drowsy (not opening her eyes much), with very sleepless nights.Thank you for any thoughts, and especially your prayers for my sister, Bonnie. Thank you,Blessings,My sister's voiceEaglessoar  I had a plastic stent put in me & it had to be replaced every other month because it kept getting clogged & infected.  Then had a metal stent put in by ERCP (not a bad procedure at all) and it had lasted 8 months with no problems.  Now I have the metal stent with a plastic one inside of that one. The tumor was pushing its way into the metal stent.     There is no cure for bile duct cancer.  Help your sister to do whatever she feels like doing.  I use the electric shopping cart. Also, Carnation Instant Breakfast or a Protein Powdered Shake Mix gives me the nutrition I need on days I don't feel like eating. Use no-fat milk & a blender. (If you were ever pregnant, it is that same kind of morning sickness kind of feeling.....nothing smells or tastes good to you.       I was 14 days on & 7 days off chemo for 9 months straight.  Couldn't take it any longer & have since stopped all chemo.  There is a new study being done by Anderson Cancer Clinic in Houston, Texas, and Roswell Park Cancer Institute in Buffalo, New York.  It will not cure the cancer but is terrific research for future use and will hopefully give me a little extra time before the Lord takes me home with Him! 8MJM8 Wed, 13 Feb 2008 00:00:00 GMT My sister's experience with stents in general have been negative. She did much better with a billial catheter which was put in by the IR (interventional radiation) team. It does move out of place from time to time but has not clogged or been infected. The stents did not work much and backed up too. Maybe this is an option for you. Bayla Wed, 13 Feb 2008 00:00:00 GMT  On 2/13/2008 8MJM8 wrote: On 2/12/2008 eaglessoar wrote:I am wondering about stent replacement for my sister who has been diagnosed with adenocarcinoma: favoring cholangiocarcinoma and needs to have the plastic stent replaced with a stainless one within 3 months of Dec 28, 07. Is this surgery tough on patients who are on chemo and have had the surgery laparscopically for gallbladder then ERCP.My sister is having chemo-Gemzar ( second treatment today). I am interested in any help with suggestions for eating, nausea (now on Compazine), has tons of mucous (taking Reglan for this and seems to be helping). She had severe headaches the day after her first chemo and had some low back pain but these have eased.She is very weak and very drowsy (not opening her eyes much), with very sleepless nights.Thank you for any thoughts, and especially your prayers for my sister, Bonnie. Thank you,Blessings,My sister's voiceEaglessoar  I had a plastic stent put in me & it had to be replaced every other month because it kept getting clogged & infected.  Then had a metal stent put in by ERCP (not a bad procedure at all) and it had lasted 8 months with no problems.  Now I have the metal stent with a plastic one inside of that one. The tumor was pushing its way into the metal stent.     There is no cure for bile duct cancer.  Help your sister to do whatever she feels like doing.  I use the electric shopping cart. Also, Carnation Instant Breakfast or a Protein Powdered Shake Mix gives me the nutrition I need on days I don't feel like eating. Use no-fat milk & a blender. (If you were ever pregnant, it is that same kind of morning sickness kind of feeling.....nothing smells or tastes good to you.       I was 14 days on & 7 days off chemo for 9 months straight.  Couldn't take it any longer & have since stopped all chemo.  There is a new study being done by Anderson Cancer Clinic in Houston, Texas, and Roswell Park Cancer Institute in Buffalo, New York.  It will not cure the cancer but is terrific research for future use and will hopefully give me a little extra time before the Lord takes me home with Him!Thank you so much for your response to my question regarding my sister's stent replacement. I pray for you to feel a peace and strength in your being.My sister had her plastic stent replaced through ERCP on Friday and she is feeling better. Thank you for the suggestions, and yes, I remember the morning sickness, but mine lasted all day, every day, for 9 months. I'm just imagining how bad it is for you and for her. My heart goes out to you.Bonnie, my sister, just went through her second chemo treatment and the first one caused loss of appetite and smells were sickening to her. But I do think the second brought less side effects than the first.I have just returned from spending two weeks with her and for that I am so greatful! Helped her through her first two chemo treatments and many doctor's visits as well as many sleepless nights.She is a trooper and very faith-filled, but it isn't easy on her or her family.Thank you all for your prayers, and mine are for you as well.I can see we are in this together.Blessings to you,My sister's voiceeaglessoar   eaglessoar Sat, 16 Feb 2008 00:00:00 GMT Thank you, Leonard,I am not sure if this is a Klatskin Tumor, need to look it up...but am looking for folks with info regarding Gemzar, side effects and suggestions for improving the side effects of the chemo as well as the cancer...prognosis w/o resection for pancreatic and/or bile duct cancer.My sister decided not to go to Mayo Clinic. We had an appointment, but she opted to take the treatment at home with her family near, to have quality time with them. Her cancer has met to her liver. I am still trying to find out the stage, prognosis, and if it is in fact bile duct or pancreatic cancer, and ways to improve the quality of her life now.Thank you for any ideas to provide better quality of life to my sister. I have been able to share the stories and strength of many on this board with my sister.May your wife be blessed and you, too.My sister's voiceeaglessoar eaglessoar Sat, 16 Feb 2008 00:00:00 GMT  On 2/16/2008 eaglessoar wrote:Thank you, Leonard,I am not sure if this is a Klatskin Tumor, need to look it up...but am looking for folks with info regarding Gemzar, side effects and suggestions for improving the side effects of the chemo as well as the cancer...prognosis w/o resection for pancreatic and/or bile duct cancer.My sister decided not to go to Mayo Clinic. We had an appointment, but she opted to take the treatment at home with her family near, to have quality time with them. Her cancer has met to her liver. I am still trying to find out the stage, prognosis, and if it is in fact bile duct or pancreatic cancer, and ways to improve the quality of her life now.Thank you for any ideas to provide better quality of life to my sister. I have been able to share the stories and strength of many on this board with my sister.May your wife be blessed and you, too.My sister's voiceeaglessoarGood Morning Eaglessoar,It Sunday morning February 17th around 10:30am. It's a bright sunny morning, with a cold chill in the air, but all in all...things could be worse.I've read your latest message and I am very sorry to hear the latest decision by your sister Bonnie...but I totally understand her desire to be home with her family.  We keep talking about quality of life over quanity of life and Bonnie's decision is her way of wanting to spend her last period in life with her family and not alone in some damn hospital. Naturally it's not going to be easy for the family members watching her go through this difficult situation...but her wishes to be surrounded and comforted by family must be honored.I'm sorry, I have no experience with Gemzar Chemo Therapy.  I believe I mentioned in one of my past messages that my wife (Karen) had oral chemo when the cancer re-surfaced in one more lymph node...the side effects were nothing compared to some of the stories we have heard about standard chemo.Your message said Bonnie decided NOT to go to the Mayo Clinic for treatment...I assuming the doctors at the Mayo Clinic told Bonnie that surgery was not an option. Again, as you know from previous messages, any solution for this type of cancer is surgery, chemo and radiation are low on the list of successful treatments...in fact what I've become aware of is that the patient goes through hell with these treatments.You also mentioned your concern regarding Bonnie's stage, prognosis and if it is bile duct or pancreatic cancer...I'm confused about the lack of imformation that has been passed on to you and Bonnie.  These are very serious questions about very serious issues and without knowing the answers, I don't know how Bonnie can want to spend time at home when just maybe the doctor's at the Mayo Clinic can help or maybe not. I'm sure Bonnie knows how she feels inside to make that decision to stay home, and she most likely knows more then she maybe saying to others...Please give Bonnie a hug for us and let her know she is in our prayers.Just a little thought I'd like to pass on to you. When my wife was in the hospital and preparing for surgery, I emailed all our family members and friends and updated them.  This helped a lot, because calling and talking to everyone wasn't that easy along with the fact that you always forget to tell each person all the facts...emailing them meant they all received the same message. In one of my emails, I asked everyone to stop what they were doing for just 1 minute at 10:00am every morning and just offer some warm loving thoughts in Karen's direction....It worked...        Thank you for allowing me to share some of these thoughts with you.Leonard, Alamo California   Solutions Sun, 17 Feb 2008 00:00:00 GMT  On 2/12/2008 eaglessoar wrote:I am wondering about stent replacement for my sister who has been diagnosed with adenocarcinoma: favoring cholangiocarcinoma and needs to have the plastic stent replaced with a stainless one within 3 months of Dec 28, 07. Is this surgery tough on patients who are on chemo and have had the surgery laparscopically for gallbladder then ERCP.My sister is having chemo-Gemzar ( second treatment today). I am interested in any help with suggestions for eating, nausea (now on Compazine), has tons of mucous (taking Reglan for this and seems to be helping). She had severe headaches the day after her first chemo and had some low back pain but these have eased.She is very weak and very drowsy (not opening her eyes much), with very sleepless nights.Thank you for any thoughts, and especially your prayers for my sister, Bonnie. Thank you,Blessings,My sister's voiceEaglessoarHi,In July, 07 my husband found out he had Bile Duct Cancer.  He had the Whipple procedure done.  In Sept. he started with Gemzar, 3 weeks on, one week off then in Oct. did Radiation with 5FU for 5 days a week for 7 weeks, a three week break and then in Jan. started up with Gemzar again and this coming Wed. 2/20 will be his last Chemo. treatment, YEAH.  First of all his levels have been OK throughout this whole thing.  He did OK with the Gemzar, 2-3 days after the treatment he gets flu like symtoms, sleeps all day and alittle nausea.  That lasts 1 day and then he is ok then 3 days later he starts up again with the Gemzar.This has gone on for 6  months.  The Dr.'s are so very hopeful.  We had the Whipple done at Mass. General in Boston.  My husband has done so remarkably well with all that he has gone through.  I will send a prayer for you and your family.Angels are all around us.Take Care,Nanc  Nvike Mon, 18 Feb 2008 00:00:00 GMT Thank you, Leonard, for taking the time to share your thoughts and concerns regarding my sister and her recent diagnosis of Adenocarcinoma: favor Cholangiocarcinoma. Bonnie has had some medical problems over the course of the past two years and received IVIG infusions for immunosuppresive difficulties to help boost the immunoglobulin G and thereby improve her immune system's response to infections (bronchitis and pneumonia). Since finding the tumor and subsequent hospitalizations, stent placement, she now has diabetes which really complicates her diet restrictions in all of this.Her Bilirubin level was back to normal (1.0) after the plastic stent was placed, but rose to 6.9 over several weeks. She now has a metal replacement (permanent) stent in the common bile duct and hopefully this will alleviate her bile restriction and improve her bilirubin and feelings in general. She has so much mucous and that has been a major problem for her. Truly hope this improves for her.....I know the chemo is palliative, but in the bigger picture we are seeking quality living for my sister (just like you say). The chemo does not give her quality much of the week, but the alternatives (more pain and little hope) are not very comforting either. Today was her third Gemzar treatment....Not sure if chemo is the way to go, but she has chosen it and her family is supporting her in it. She is not a candidate for surgery, with multiple mets to the liver, etc, etc. The doc says she probably has had this for 1-2 years...my aunt passed away with pancreatic cancer, had two chemo treatments and discontinued due to the side effects. She died within 5 months. (My sister Bonnie flew to CA to care for her during my aunt's last month of life).Thank you for your prayers, and my prayers are also for your wife and you and the others on this board struggling with their illnesses and loss.  My eyes have surely been opened to the vast amount of folks who are experiencing this dreadful disease around the world. My heart is heavy and yet I do feel a sort of commradarie by chatting on this board.I am back home, at least for now, and hope to get out to again love and care for my sister in the next month or so. Wish I could know the approx stage for her,,,Dr suspects it to be stage IV, but not much in regards to timeline. We don't know if it is in her lymph or not, and they have not definitively ruled out metastic pancreatic adenomcarcinoma. Not that it would be any different from Cholangiocarcinoma. Thank you and Blessings,my sister's voiceeaglessoar     eaglessoar Tue, 19 Feb 2008 00:00:00 GMT  On 2/19/2008 eaglessoar wrote:Thank you, Leonard, for taking the time to share your thoughts and concerns regarding my sister and her recent diagnosis of Adenocarcinoma: favor Cholangiocarcinoma. Bonnie has had some medical problems over the course of the past two years and received IVIG infusions for immunosuppresive difficulties to help boost the immunoglobulin G and thereby improve her immune system's response to infections (bronchitis and pneumonia). Since finding the tumor and subsequent hospitalizations, stent placement, she now has diabetes which really complicates her diet restrictions in all of this.Her Bilirubin level was back to normal (1.0) after the plastic stent was placed, but rose to 6.9 over several weeks. She now has a metal replacement (permanent) stent in the common bile duct and hopefully this will alleviate her bile restriction and improve her bilirubin and feelings in general. She has so much mucous and that has been a major problem for her. Truly hope this improves for her.....I know the chemo is palliative, but in the bigger picture we are seeking quality living for my sister (just like you say). The chemo does not give her quality much of the week, but the alternatives (more pain and little hope) are not very comforting either. Today was her third Gemzar treatment....Not sure if chemo is the way to go, but she has chosen it and her family is supporting her in it. She is not a candidate for surgery, with multiple mets to the liver, etc, etc. The doc says she probably has had this for 1-2 years...my aunt passed away with pancreatic cancer, had two chemo treatments and discontinued due to the side effects. She died within 5 months. (My sister Bonnie flew to CA to care for her during my aunt's last month of life).Thank you for your prayers, and my prayers are also for your wife and you and the others on this board struggling with their illnesses and loss.  My eyes have surely been opened to the vast amount of folks who are experiencing this dreadful disease around the world. My heart is heavy and yet I do feel a sort of commradarie by chatting on this board.I am back home, at least for now, and hope to get out to again love and care for my sister in the next month or so. Wish I could know the approx stage for her,,,Dr suspects it to be stage IV, but not much in regards to timeline. We don't know if it is in her lymph or not, and they have not definitively ruled out metastic pancreatic adenomcarcinoma. Not that it would be any different from Cholangiocarcinoma. Thank you and Blessings,my sister's voiceeaglessoar    Good Morning,Well, as you know me by now, My wife (Karen) and I are very sorry to hear all issues challenging your sister Bonnie...There's not much after Stage IV...as far as time..everyone is different, their internal fight mechanism takes over and that will help them survive longer than others. It's hard, but it sounds like you are ready for whatever.Takecare...Leonard and Karen from Alamo, CA      Solutions Wed, 20 Feb 2008 00:00:00 GMT