CancerCompass message board discussion started by Brenda48 on 10/23/2006 http://www.cancercompass.com/message-board/message/all,7412,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My 68 year old Mother was diagnosed with stage IV adneocarcinoma with metatisis to lymph nodes and the outside lining of her abdomen. She has received her first IV chemo cocktail of cysplatin and epirubisen and is now taking Xeloda orally. The treatment was last Wed and just today is she finally able to sit up without nausea and finally able to eat small amounts. Her tumor is inoperable and the Dr hasn't mentioned radiation. She was being treated for 4 bleeding ulcers prior to cancer diagnosis. Can anyone tell me what to expect? I am 48 years old and her primary caretaker. The rest of my siblings have jobs and young children to care for, so this job falls on me. I actually live 7 hours away, but have moved in with my Mom for however long it takes. I am a very strong person, but would appreciate any advice or help. I feel very helpless and at the mercy of others for information. Is this survivable? Brenda48 Mon, 23 Oct 2006 00:00:00 GMT my mother is 67 and has stage 4 signet cell adenocarcimoma. she has had 4 months of cisplatin, epirubicn, and flouricl. when attempting to remove her stomach they aborted her surgery because it spread to outside of her colon. usually by the time stomach cancer is diagnosed it has already progressed. my mother has been given 6 months to 1 yr, and we will fight the whole way. it is hard for her to eat, she throws up bile all the time, and she is on tpn through her port for feeding. we are looking for alternatives, knowledge is power and the to win the battle of cancer. i will pray for our mothers-- --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- blessings, carla Carlaj Tue, 24 Oct 2006 00:00:00 GMT Q: "Is this survivable?" A: Generally stomach cancer that is stage IV is not considered curable. Generally the purpose of treatment is to prolong a person's life. Q:"I feel very helpless and at the mercy of others for information" Generally the average life expectancy of a person with stage IV gastric cancer who undergoes treatment is on the order of about a year. Without treatment the life expectancy is about half of this. Generally the five year survival of a person with stage IV gastric cancer is on the order of 4%. These are only averages. You mom's life expectancy might be much shorter or much longer than this. Q:"Can anyone tell me what to expect?" I bet she does not get most of the things on this list. Things that are possible might include: - side effects specific to the chemo she is getting. For example, 5-FU causes mouth sores in some patients. Others lose their hair. - loss of appetite - weight loss - nausea - vomiting - diarrhea - depression, anger, bargaining, denial - abdominal pain - anemia - infections - hospitalization (for dehydration, pneumonia or any of a number of other complications) Amnia Tue, 24 Oct 2006 00:00:00 GMT Thank you for your thoughts and prayers. Yesterday my Mom was hospitalized due to pain in the chest, back, and her left arm. Today, they removed 2 1/2 pints of fluid from her abdomen to check for malignancy. Her oncologist has told her that she may not be able to continue with any treatment. We will learn more tomorrow. We are looking for alternative treatments, if not life sustaining, then at least life comforting. I will pray also for all of those that are affected by this horrible disease. Brenda48 Thu, 26 Oct 2006 00:00:00 GMT Dear Amnia, Thank you for your response. You seem to know so much about this disease. Are you in the medical profession? So far you have been right. Mom has not lost her hair, but she did have so many of the other side effects, including hospitalization for 8 days, due to pain in her chest, back, & arm. I think this was actually refered pain due to the tumor. Her sense of taste and smell changed dramatically, but seem to be improving. Today, she her questions turned to her survival and how long she may have to live. This is hard since of course we just don't know. How do you answer these questions? Do you pretend that she will get better. Her doctor has told her that she in not curable, but hasn't given her any time frame. Any suggestions on how to answer this one? Do I tell my Mother her survival rate or act as though I don't know. Is ignorance bliss? Brenda48 Wed, 01 Nov 2006 00:00:00 GMT You: "So far you have been right." Me: I get that all the time. I am very sorry to be right in your mom's case. You: "Do I tell my mother her survival rate or act as though I don't know? Is ignorance bliss?" Me: Generally, people don't ask until they are ready to know the truth. Some people never ask, some ask just weeks before they die. There are many opinions on this. Some feel that not knowing is worse than knowing. At least knowing, one can make better plans for the time on has left. Others feel that not knowing is better, perhaps for very young children. If you are asking my personal opinion on this very complex issue, I believe strongly in telling the person the truth, but only if they ask for the information - an indication to me they are ready to know. Having said that, I do not think you should be the one to tell her. That is the oncologist's job, let him take care of that. Cancer patients are just like everyone else and often "shoot the messenger" when horrible news is delivered. You do not want to remind your mother she is dying every time she sees you when you walk in her room, and that is exactly what will happen if you decide to deliver the bad news. Have the oncologist tell her. If you like, you can be present and your mother can cry on your shoulder and talk it out with you after he leaves the room. Other opinions on this issue are invited, -Amnia Amnia Wed, 01 Nov 2006 00:00:00 GMT Thank you for your candid answer as to who should be the one to answer the question of longevity for my Mom. At first I thought it maybe should come from someone who loves her, but you helped me to see that it is probably better coming from the doctor. She has an appointment on Tuesday at which the doctor will tell her if she can withstand another round of chemo and she is planning on asking him what time she may left. She asked me if I want to know and told her no, not really, that I would just take each day with her and count it a blessing. Besides, I do believe in miracles! However, it would be easier to know what will happen next. She is up and moving about, but has much more pain than she lets on. She refuses pain meds at this time unless she just can't stand it. She does not eat much and drinks very little. She has pain in her back, but I'm not sure if that is from the disease or lack of activity. It is hard to know just how much to push to get her to eat, drink, and move about. There should be a book written that says, "do this, expect this". Brenda48 Thu, 02 Nov 2006 00:00:00 GMT excerpt: "At the time, he was one of the world experts in stomach cancer and I was a young oncologist on the staff. George developed what looked like incurable stomach cancer. And he insisted on being aggressively treated. I thought he was, essentially, out of his mind. Eighteen years later, when I wrote the book, I interviewed him and told him if I had been his doctor, he would have died, because I had written him off. He explained to me that he had the right to hope. That he needed to try, he needed to struggle, he knew the odds were long, but that nothing in medicine, or biology, is written in stone. If you are in that small fortunate group that makes it, and you never know, then it's 100 percent for you. So did hope save his life? Yes." full story: http://www.msnbc.msn.com/id/4269238/ from a book you should read: The Anatomy of Hope: How People Prevail in the Face of Illness, by Jerome Groopman if you read the article, pay close attention to the discussion of "false hope" and "true hope." Jerome Groopman is a Harvard Medical School Professor. Amnia Thu, 02 Nov 2006 00:00:00 GMT My best friend had stomach cancer.She was 42 years old.Her tumor they said was the size of a fotball at the time when diagnosed,they did surgery to remove but knew it was not curable,she did 2 rounds of chemo and could not tolerate it and no more after that.They kept telling her she had 6-9 months,she lived almost 2 years with it.I truly believe it was her will to have more time that kept her alive.She was on ALOT of pain medicatiion,but did quite well until about 1 month before she died.And she could still talk until about a week before she passed.I was with her throughout all of this,so if anyone has any questions feel free to email me. Paulac Mon, 06 Nov 2006 00:00:00 GMT Thanks for book suggestion. I will be going to the library tomorrow. Today my Mother had her doctor appt. Her white blood cell count was up to 3900 (s/b 4000)so tomorrow she will have her 2nd treatment. No more cisplatin or epirubisen though. This time it is 1 week of Xeloda and 2 trmts of Taxotere 3 weeks apart. Do you know anything special about these drugs other than what the nurse told us today? She has really been feeling good and eating better for the last week. Her hair has begun to fall out, but that is a small price to pay. Brenda48 Tue, 07 Nov 2006 00:00:00 GMT Thank you for your encouraging words. Two years is a big difference than 6 - 9 months. How blessed your friend was! I am curious though. Had her cancer metasisized? My Mom is now at the 2 month mark since her diagnosis and she has not been told of a time frame, only that she inoperable and incurable. Brenda48 Tue, 07 Nov 2006 00:00:00 GMT Q:"Do you know anything special about these drugs other than what the nurse told us today?" A:what would you like to know? I can tell you how they work if you like. Taxotere prevents cells from dividing by binding to the strings (microtubles) that pull apart the chromosomes during cell division. side effects include hair loss, numbness/tingling, mouth sores, rash, vomiting, diarrhea and infections. Xeloda is a pro-drug - it is converted to 5-fluorouracil (5-FU) by the body. 5-FU fights cancer several ways, but the main way is by inhibiting an enzyme called thymidylate synthase, which makes pyrimidine, which is vital to DNA replication. side effects include anemia, infections, mouth sores, rash, diarrhea and heart problems. there is a rare condition called DPD deficiency which makes people react very badly to 5-FU (or Xeloda). here is a link about that which also talks about a blood test to check for DPD deficiency: http://www.dpdenzyme.com/ -Amnia Amnia Tue, 07 Nov 2006 00:00:00 GMT Thanks for the web link (I think). It was informative, but a little over my head, so I had to do further study. With these side effects, is there any way to know when or if they will occur, especially the DPD deficiency? Meaning after 2 days, or 1 week?? There are anti-nausea drugs and pain drugs, but is there any prevention for the mouth and throat? Is it gradual or immediate? I think she more worried about loosing her sense of taste and the mouth sores than anything else. Her hair is almost gone, and she is dealing with that just fine. Brenda48 Thu, 09 Nov 2006 00:00:00 GMT Thanks for the web link (I think). It was informative, but a little over my head, so I had to do further study. With these side effects, is there any way to know when or if they will occur, especially the DPD deficiency? Meaning after 2 days, or 1 week?? There are anti-nausea drugs and pain drugs, but is there any prevention for the mouth and throat? Is it gradual or immediate? I think she more worried about loosing her sense of taste and the mouth sores than anything else. Her hair is almost gone, and she is dealing with that just fine. Brenda48 Thu, 09 Nov 2006 00:00:00 GMT Q1: With these side effects, is there any way to know when or if they will occur, especially the DPD deficiency? Meaning after 2 days, or 1 week? Is it gradual or immediate? I think she is more worried about losing her sense of taste and the mouth sores than anything else. A1: Within a day or two after the chemo, the mouth will feel funny and the first sore may appear. in 3-6 days the sores will be at their worst. After 8-15 days they should be healed. Some people get no sores, some get mild sores, some get bad sores. People with DPD deficiency get the worst sores. The web site that confused you (http://www.dpdenzyme.com/) is where your doctor can send a blood sample to test for DPD deficiency if you like, but you will probably have to pay for the test, as insurance does not usually cover it (only God knows why). Q2: There are anti-nausea drugs and pain drugs, but is there any prevention for the mouth and throat? A2: for 5-FU/Xeloda induced mouth sores, allopurinol may help slightly (it is a prescription medicine). Sucking ice chips may help (fancy name = oral cryotherapy). topical lidocaine gel is messy but may help slightly. try not to swallow though, it can cause abnormal heart rhythms. topical vitamin E is another thing to try, but i've never seen it work either. -Amnia Amnia Thu, 09 Nov 2006 00:00:00 GMT Hi Carla, First of all how is your mother doing? I wanted to share that I also was dignosed with Signet Cell and have completed the ECF treatment. I truely pray for you and your mother. Hang in there and believe. Take it one day at a time. I do hope that your mother is not it pain. All I recall before I was diagnosed was the pain in my stomach. It can get very painful. I send you my best. Myboys Myboys Wed, 15 Nov 2006 00:00:00 GMT I have a 77 year old aunt who just had a severe stoke 7 months ago she was doing ok but she just found out she has an aggresive stomach cancer refuses all treatments we just wanted to know if you have a time frame for what to expect for how long she will live the dr said he really isint sure but without treatment i am not expecting to much we are just hoping she doesnt suffder and we as nieces are trying to make her comfortable till the end any advice thank you so much this is so devastating for us. Beatcy03 Fri, 11 May 2007 00:00:00 GMT Hi Carla,So sorry to hear about ypu having signet cell cancer .My sister who is 52 was just told she has that type of cancer as well. They have nothing yet ,its been about two weeks since being told.She lives in virginia.We are trying to bring her to new yorrk sloan ketering.S he is suppose to have laproscy this week in virginia.Every seems to be at a stand still.When were you diagnoised?And was it signet ring cell?Pleas ewe are lookng for any answers,there is not much on this type of cancer.I will say prays for you as well. dee53 Sun, 16 Sep 2007 00:00:00 GMT  On 11/6/2006 Paulac wrote:My best friend had stomach cancer.She was 42 years old.Her tumor they said was the size of a fotball at the time when diagnosed,they did surgery to remove but knew it was not curable,she did 2 rounds of chemo and could not tolerate it and no more after that.They kept telling her she had 6-9 months,she lived almost 2 years with it.I truly believe it was her will to have more time that kept her alive.She was on ALOT of pain medicatiion,but did quite well until about 1 month before she died.And she could still talk until about a week before she passed.I was with her throughout all of this,so if anyone has any questions feel free to email me.Hi there, I know it's been a while since you wrote this comment, however, i have some questions about your experience. My dad was recently diagnosed with stomach cancer. However he left AMA and refused to be admitted for further testing to find out what stage he is in an so forth. He refuses to be treated with chemo or surgery. He has had bad experiences in the past with surgeries due to his chronic back problems. He has a lot of other health complications such as diabetes and high blood pressure. Physically and emotionally he has been through a lot in the past 30 years of his life. He first began with his back problems at 20, he is now 50 years old. I have been trying to find out what to expect in terms of his health- how quick does this form of cancer spread? Will it be painful? How much time does he have? I have heard that it will be constant vomiting. I feel the need to prepare myself so that I can have control over that at least.  I feel it's especially harder due to all of us, including him, not knowing what stage he's in or if it has already metastisized. I know he has symptoms of vomiting, nausea, lack of appetite, and stomach pains. Any advice or suggestions for readings or even which direction I should take would be helpful. Thank you. yubitza Fri, 09 May 2008 00:00:00 GMT