CancerCompass message board discussion started by 2caret on 3/28/2008 http://www.cancercompass.com/message-board/message/all,22450,0.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/ Hi Everyone,I just registered here and I am looking for support and advice. My husband was diagnosed with stage 4 stomach cancer 3 months ago. (Dec 26) He began chemo on Jan 5, as it is his only option. It has sporead into his omentun and there are "seedlings" on the outer lining of his small intestine. He is only 44 yo and we have 3 children (ages 20, 17 & 7). He goes for treatment once a week for 2 weeks and then gets a week off. The doctors told him this will be something he may do "the rest of his life" - however long that may be we dont know - and dont want to. He was also diagnosed with diabetes shortly after but was told it was possibly due to the decadron he takes before chemo. But it is not reversible. He faired very well for the forst 3 months but the last 2 weeks he has not been well. He has a very bad cough, has been alot more tired, less energetic, and in alot of pain. He hates taking pill after pill after pill so he pretends sometimes that things are ok but I know they arent. He is also trying to be strong for the kids.  Sorry to go on and on.... this is the first support group I have found that is active and seems helpful. I hope I can be as much support to you as you are to me. Thanks for listening!! 2caret Fri, 28 Mar 2008 00:00:00 GMT I am so sorry to hear that your husband has been diagnosed with this devil of a disease. Is your husbands cancer in-operable? Or is chemotherapy his only course of treatment? I went through this with my father and would be happy to answer any questions you have. Where is his pain? Is he able to eat? Kristennyc Fri, 28 Mar 2008 00:00:00 GMT  Thank you. The doctors said it was inoperable at the time but they will never say never. They told us that chemo was his "only option" and they know that it will "never get all the cancer" so it is being treated as a chronic disease. He is able to eat, thank goodness! - anything he wants really as long as his stomach can tolerate it. He has learned that peanuts are a no-no. But he is stubborn and will eat even if he is in pain. He is a chef and runs his family's restaurant but has not been able to work. It is so stressful and his father pretty much has told him to stay away, mostly so he doestn get an infection. His pain is in the abdominal area. He also lost his sister a year ago unexpectedly (46yo) to an aortic anuerism. and his other sister is a breast cancer survivor (3yrs). So our family has been thru ALOT recently. 2caret Fri, 28 Mar 2008 00:00:00 GMT On 3/28/2008 2caret wrote: Thank you. The doctors said it was inoperable at the time but they will never say never. They told us that chemo was his "only option" and they know that it will "never get all the cancer" so it is being treated as a chronic disease. He is able to eat, thank goodness! - anything he wants really as long as his stomach can tolerate it. He has learned that peanuts are a no-no. But he is stubborn and will eat even if he is in pain. He is a chef and runs his family's restaurant but has not been able to work. It is so stressful and his father pretty much has told him to stay away, mostly so he doestn get an infection. His pain is in the abdominal area. He also lost his sister a year ago unexpectedly (46yo) to an aortic anuerism. and his other sister is a breast cancer survivor (3yrs). So our family has been thru ALOT recently. Dear 2caret, I am so very sorry that you and your family are having to endure this cancer. My husband is also a chef, diagnosed young at age 32 with stomach cancer, and had a sister with breast cancer. Sadly, his sister lost her battle to breast cancer the year before my husband was diagnosed with with cancer himself. This is definitely the most active stomach cancer board that I've run across. I also read the Esophageal Cancer boards because my husband's cancer had spread there and they have many of the same problems and chemo as stomach cancer patients. My husband is now 2.5 years out from diagnosis. He was stage 3...he would have been classified as stage 4 if just one more lymph node would have been affected. He was able to have the surgery to remove most of his stomach and esophagus. So now he can't eat very much at all and has lost 75 lbs...which is challenging for a foodie such as himself. But we are in remission and taking life one day at a time still. I hope your husband is holding steady and that they can bring his pain under control. Have you gone for a second opinion? It's amazing how the knowledge of chemo protocol differs from doctor to doctor. Hugs and well wishes, amy lumpling Fri, 28 Mar 2008 00:00:00 GMT Hi! I'm also fairly new at this as my husband was diagnosed in October. He is scheduled to finish 12 rounds of chemo in May. Hearing your story brings me much encouragement and hope. We too take it one day at a time. I remember hearing that from the doctor's and now I realize that it becomes a new way of life. Your life does change dramatically, but you also have a deeper appreciation for family, friends, and life in general. It has also increased our faith and for us it's been a huge part of our lives. What I've learned these past few months is to have as much ensure or boost as possible to help with the weight and also talk to your doctor because a lot of the symptoms like excessive diarrhea can be controlled. My thoughts and prayers are with you all. cal1519 Sat, 29 Mar 2008 00:00:00 GMT  On 3/28/2008 2caret wrote:Hi Everyone,I just registered here and I am looking for support and advice. My husband was diagnosed with stage 4 stomach cancer 3 months ago. (Dec 26) He began chemo on Jan 5, as it is his only option. It has sporead into his omentun and there are "seedlings" on the outer lining of his small intestine. He is only 44 yo and we have 3 children (ages 20, 17 & 7). He goes for treatment once a week for 2 weeks and then gets a week off. The doctors told him this will be something he may do "the rest of his life" - however long that may be we dont know - and dont want to. He was also diagnosed with diabetes shortly after but was told it was possibly due to the decadron he takes before chemo. But it is not reversible. He faired very well for the forst 3 months but the last 2 weeks he has not been well. He has a very bad cough, has been alot more tired, less energetic, and in alot of pain. He hates taking pill after pill after pill so he pretends sometimes that things are ok but I know they arent. He is also trying to be strong for the kids.  Sorry to go on and on.... this is the first support group I have found that is active and seems helpful. I hope I can be as much support to you as you are to me. Thanks for listening!!2carotMy wife was diagnosed with Stage IV in March of 07.  She is a healthy 43 year old and has just finished a year of active chemo treatments.  Per some oncologist, her condition is also inoperatable since it could be anywhere.  She started chemo in April of 07 on a regimen of Epirubicin, Cisplatin, and Flurouracil (ECF is what it is known as).  The Flurouracil is also known as 5FU.  She was classified as in remission meaning that both her 2cm stomach tumor and her 2-3cm liver tumor were gone as of June of 07.  She was very lucky that we caught it that early, even though it had unforturnately spread. In October of 2007 she switched her treatment to Oxaliplatin and Xeloda which she remained on for the next 5 months before changing the Xeloda back to the 5FU.  This week she went for her last treatment of Oxaliplatin and 5FU.  However, we still get conflicting opinions as we have multiple onocologists giving us recommendations.  One is to discontinue at this point and just keep checking her every three months, the other is to continue the 5FU for another 6 months.  We have selected the later and will continue treatment for another 6 months.  It would appear that since it originally may have spread to anywhere in her body, that surgery is not a recommended option.  She had difficult times during her chemo treatments (losing her hair, naseau, pain, etc) but remained focused and motivated.  Please try to keep him motivated.  He can prevail and our prayers and well wishes are with your entire family.  We have two young daughters (12 and 14) and they have been okay throughout the entire ordeal.  Best of luck.  This is the best support site that I have found.  If you ever have a question, please let me know.  Remember to always get alternate treatment opinions whenever possible.Keep the FaithSteve Hartford, CT momwithkids Sat, 29 Mar 2008 00:00:00 GMT Thanks Amy, Its awful that we all have to go thru this horrible deisease but its comforting to know we have others to talk to. We have not gotten a 2nd opinion yet since we are getting help at the #1 cancer hospital in the country BUT we have considered it. We have a contact at another awesome hospital in Boston that we may go see just to hear what they have to say. If they agree with what we are doing right now then we will obviously continue what we are doing. I am so happy to hear your husband is in remisson. I didnt think that was possible for us but never say never!  It is still fresh here (3mo) and its hard to keep the faith when you see him in so much pain and so uncomfortable but we stay strong for the kids and for peace of mind. I am sorry for the loss of your SIL. I lost a friend who was 38 to breast cancer and my mom is a 2x survivor - it is an awful thing. I wish you and your husband all the best and I will be happy to chat privately anytime!  ~Christine  2caret Sat, 29 Mar 2008 00:00:00 GMT Hi Steve,Thanks for your post. Stories like your are exactly what we need to hear - that things can become better. 6more months of chemo is not a good thing but knowing it could make even more of a difference gives me so much more hope. I am sorry that your family has to deal with this too - It seems our older sons are handling it pretty well, but have had so much loss in their young lives. SO we try to stay as focused as we can on the positive things that happen and to keep life as normal as possible. Our younger son (7yo) is having a harder time dealing with his emotions. We may have to get him to see a counselor at school for starters. My husband's treatment consists of Irinotecan (or CPT-11), Taxotere, and Cisplatin. It takes about 2.5 hours. This past week has been the worst so far but he was lucky to have had 3 good months of treatment atleast.I wish you adn your family all the best in the next 6 mo and the future. It is so comforting to know I found aplace to vent and get advice! THANK YOU!  ~Christine 2caret Sat, 29 Mar 2008 00:00:00 GMT  On 3/29/2008 2caret wrote:Hi Steve,Thanks for your post. Stories like your are exactly what we need to hear - that things can become better. 6more months of chemo is not a good thing but knowing it could make even more of a difference gives me so much more hope. I am sorry that your family has to deal with this too - It seems our older sons are handling it pretty well, but have had so much loss in their young lives. SO we try to stay as focused as we can on the positive things that happen and to keep life as normal as possible. Our younger son (7yo) is having a harder time dealing with his emotions. We may have to get him to see a counselor at school for starters. My husband's treatment consists of Irinotecan (or CPT-11), Taxotere, and Cisplatin. It takes about 2.5 hours. This past week has been the worst so far but he was lucky to have had 3 good months of treatment atleast.I wish you adn your family all the best in the next 6 mo and the future. It is so comforting to know I found aplace to vent and get advice! THANK YOU!  ~ChristineHi Christine, I am sorry to hear about your husband. I also just want to reiterate to you to seek out a second or even third opinion. I have found that doctors don't always list different options due to whatever reason. I strongly feel that educating yourself is empowering yourself and your family. Also, this board is just full of information.....different chemo regimens, doctor recommendations, experiences and tips. Just type what you're looking for into the search box in the upper right hand corner and prepare to read for quite a while! You are all in my prayers,Ladyboom ladyboom Sun, 30 Mar 2008 00:00:00 GMT  On 3/28/2008 lumpling wrote: On 3/28/2008 2caret wrote: Thank you. The doctors said it was inoperable at the time but they will never say never. They told us that chemo was his "only option" and they know that it will "never get all the cancer" so it is being treated as a chronic disease. He is able to eat, thank goodness! - anything he wants really as long as his stomach can tolerate it. He has learned that peanuts are a no-no. But he is stubborn and will eat even if he is in pain. He is a chef and runs his family's restaurant but has not been able to work. It is so stressful and his father pretty much has told him to stay away, mostly so he doestn get an infection. His pain is in the abdominal area. He also lost his sister a year ago unexpectedly (46yo) to an aortic anuerism. and his other sister is a breast cancer survivor (3yrs). So our family has been thru ALOT recently.Does your husband still have occasions when he chokes from food that he eats?   My mom was diagnosed with Stage 1 stomach cancer oct. 2007.   She had a full gastrectomy.   She had 1 week of chemo and 28 sessions of radiation.    She finished her last radiation in mid Feb.   She now is back at work with my dad.   She's got a lot of energy and goes out with my sisters, etc., but she still every now and again will choke on food.   Since your husband's been 2.5 years since diagnosis, I thought you'd be a good person to ask about this.   Will this get better for my mom or does she just have to know that she'll periodically be choking for whatever reason?Dear 2caret, I am so very sorry that you and your family are having to endure this cancer. My husband is also a chef, diagnosed young at age 32 with stomach cancer, and had a sister with breast cancer. Sadly, his sister lost her battle to breast cancer the year before my husband was diagnosed with with cancer himself. This is definitely the most active stomach cancer board that I've run across. I also read the Esophageal Cancer boards because my husband's cancer had spread there and they have many of the same problems and chemo as stomach cancer patients. My husband is now 2.5 years out from diagnosis. He was stage 3...he would have been classified as stage 4 if just one more lymph node would have been affected. He was able to have the surgery to remove most of his stomach and esophagus. So now he can't eat very much at all and has lost 75 lbs...which is challenging for a foodie such as himself. But we are in remission and taking life one day at a time still. I hope your husband is holding steady and that they can bring his pain under control. Have you gone for a second opinion? It's amazing how the knowledge of chemo protocol differs from doctor to doctor. Hugs and well wishes, amy  claudia1 Wed, 02 Apr 2008 00:00:00 GMT