Our pancreatic cancer forum and online resources at CancerCompass.com provide a supportive environment where you can ask questions, research information and get valuable feedback. http://www.cancercompass.com/message-board/cancers/pancreatic-cancer/1,0,119,27.htm Sun, 22 Nov 2009 00:00:00 GMT Sun, 22 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, I am actually posting for my sister in law, we are closer than sisters, her mom who is 82 was just dx with pancreatic cancer about a month ago.  It has spread to her lungs and liver and was found by accident.  I know everyone is different but I would like to get an idea of what we can possibly expect.  She is not sick or in in any pain right now but I know the worse is coming.  She doesnt want any treatments or life sustaining actions.  I just need to know what may be ahead so I can help my best friend and sister-in-law.  Can her mom go home (she is in a rehab recovering from a non-related hospitalization).  Do we  call hospice?  What kind of side effects are coming?  Any talks are soo welcome, my heart breaks for the two of them.  Thank you in advance and my wishes go out to all of you here who have loved ones that are ill. http://www.cancercompass.com/message-board/message/all,41724,0.htm Prplvr Sun, 22 Nov 2009 00:00:00 GMT My name is Kathy and I has a Whipple in Oct 2007.  It was a neuroendocrine islet tumor on the head of my pancreas.  Dr Joe Levi did the surgery.  I have been great for two years and now a 1.3 cm liver lesion appeared on my MRI last Friday.  I have to go back to Miami and see what Dr. Levi says about treatment.  I am 46 and have no symptoms yet.  I feel hopeful but am trying to figure out what my options are.  Is it surgery again or is it RFA or EBRT?  I don't think Chemo works with Neuroendocrine cancer.  I'll do whatever he recommends but its a little overwhelming.  http://www.cancercompass.com/message-board/message/all,41714,0.htm kscaman Sat, 21 Nov 2009 00:00:00 GMT I am a 51 year old female who is scheduled to have a distal pancreatectomy and splenectomy next month in NY.  I have a large (4.71 cm) cyst (mucinous cystadenoma) on the body of my pancreas which I've been told is precancerous.  The fluid was biopsied in Sept and the CEA level was high (2598).  All doctors I have seen so far appear concered with the size and cea level. Does anyone know what level is considered cancerous?  Also I am interested in hearing of others experiences (positive or negative) and if you can tell me how to prepare myself pre and post surgery? Thank you to all.   Marie   http://www.cancercompass.com/message-board/message/all,41710,0.htm MaBoo Sat, 21 Nov 2009 00:00:00 GMT Three weeks ago, I brought my mother to the hospital with a sudden appearance of jaundice. After blood work, exrays, US and CT she was told that she had a mass on the head of her pancrease and her refered Dr.(a specialst in Pancreatic Cancer in NJ/NY) urged  that she undergo an ERCP for stint placement and biopsy. Within 2 days the procedure was completed and her Dr. informed us that "it looks surely to be malignant".  Four days later the Dr. reported that "she is an anomaly" the results were "atypical" finding no soild evidence of cancer. He then suggested a repeat proceedure to collect additional bioptic samples (8 in total) in order to confirm malignancy.  4 days later, after the second ERCP, the Dr. came out and stated "it definitely looks like Cancer" and that the Pathologist who assisted him in the proceedure belives it to be cancer.  The 3 cm mass appears to have encroached and possibly invaded the Portal Vein. Another 4 days later, at his office, the Dr. once again claimed that it was cancer yet the results of the Pathology report was "ATYPICAL" again. No evidence of cancer cells. After numerous questions, I requested her Stage and TNM index, since he claims he is sure that it is cancer, to which he replied,               Stage 2 , T3-N0-Mx. We have since begun the second, third, and fourth opinion process. Can anyone provide any experience with  pathology results being "ATYPICAL" (from all 9 biopsies) and doctors who insist it is Cancer?   Any insight, experience, knowledge, whatsoever, would be greatly appreciated.  Thank you. My best wishes to you all. http://www.cancercompass.com/message-board/message/all,41708,0.htm SimpleMan Sat, 21 Nov 2009 00:00:00 GMT I just found this site yesterday and decided to join.  I am a 5 year cervical cancer survivor.  I have a very close friend that was diagnosed with pancreatic cancer a year ago.  For one year he participated in a clinical trial in addition to gemzar.  Everything was going along well, tumor had been shrunk from its original size and then 3 weeks ago at a routine CT scan a new mass showed up near his belly button.  This new spot has caused him to be removed from the clinical trial and is now just taking the gemzar.  Tarceva has been prescribed but he is yet to start taking the pills.  In the last week he has started having a pain in  his left side to back region.  I have also noticed that he is very depressed and has no appetite. I am very worried about him and just feel so helpess and scared. http://www.cancercompass.com/message-board/message/all,41682,0.htm marchar69 Fri, 20 Nov 2009 00:00:00 GMT Hospice came by and put a cathater in and gave my mother morphine.  They also put her on oxygen.  The cathater has helped greatly.  Her swelling in legs and hands is going  down.  My concern is the shaking.  She shakes all the time now.  And her mind.  She seems confused and says things that don't make sense.  Is this a result of the medications or the cancer? http://www.cancercompass.com/message-board/message/all,41680,0.htm JZimmer66 Fri, 20 Nov 2009 00:00:00 GMT ?This is not where the pancreas is.  What could be causing this?  Also her right hand is starting to swell up.  Should I call the hospice nurse?   Janice http://www.cancercompass.com/message-board/message/all,41624,0.htm JZimmer66 Wed, 18 Nov 2009 00:00:00 GMT Finally called hospice for my mother.  I am furious with the doctor for not telling us that the cancer was spreading.  I had to hear it from a nurse. (a visiting nurse)  My mother still feels there may be hope and what do we say. (Well, Mom your cancer is spreading and you don't have much longer.)  If they had been more up front with us earlier on we could have prepared her better.  Now we are candy coating everything because we don't know what to say.  Today she wanted me to call her doctor to schedule a blood transfusion.  She thinks that is why she is so tired.  But I know it is the cancer.  Janice  http://www.cancercompass.com/message-board/message/all,41564,0.htm JZimmer66 Mon, 16 Nov 2009 00:00:00 GMT Does any whipple people who take creon , know about the new creon change,  please advise if you do. http://www.cancercompass.com/message-board/message/all,41551,0.htm deda_bug Mon, 16 Nov 2009 00:00:00 GMT I am afraid my mother doesn't have much more time and am wondering if I should tell my sister to fly up now.  Mom's breathing seems shallower, her speech is very weak, she sleeps all the time, I have noticed a decrease in urination and she hasn't had a bowel movement in three or four days now.  She isn't eating much at all.  From everything I am reading there seems to be a lot of pain at the end and she hasn't complained of that except in her legs. (where she has unbelievable fluid build up and weeping adema.)  Her eyes are weak and the whites are slightly yellowish.  Where are we?  Is it close to the end? http://www.cancercompass.com/message-board/message/all,41540,0.htm JZimmer66 Sun, 15 Nov 2009 00:00:00 GMT I wish I found this website earlier !! It was just heart breaking to see him waste away within 13 months. He was 72 years old had the bypass in oct 08 and nearly died from it he was in the hospital for about four months after the surgery then rehab later seemed to be doing better and started radiation then chemo. until they couldn't offer chemo any more due to metastases.  In and out of the hospital. Dad cried a lot it was hard to believe it was happening to him (depressed).   He was a healthy man prior never smoked, never really drank exceot occasions,  watched what he ate, no previous cancer in the family. I lived about 5 hours away and tried to help out as much as possible  with my 2 & 4 yr old but mom was by his side till the end I'll always be grateful to her for it. Soon she started breaking down and they had to move in with my elder sister and bring hospice in to help. We tried to controll the pain as much as possible to keep him comfortable it seemed like it didn't help much though he seemed comfortable sometimes and sometimes not. Towards the end we couldn't get him to talk much he mentioned once I'm just tired. Surprsing, He talked to me on Sunday over the phone as I could not be by his side and that was the last time I spoke to him. He seemed a bit coherent. Pain meds were being given via IV at the hospital to keep him comfortable. Mom said it ended with vomitting for him. I can't stop crying when I think of what he had to endure I am a little comforted that he is finally resting in peace and no more in pain. Gosh it hurts so much to loose a parent to this disease. I have shead so many tears I have none left it seems. I am focusing on mom now. She has bad arthritis but stil with us. http://www.cancercompass.com/message-board/message/all,41520,0.htm maymay Sat, 14 Nov 2009 00:00:00 GMT My is 49 yrs old and was diagnosed with Pancreatic Cancer 1.3 yrs ago.  He was told he had late stage and that he had 2 to 6 months to live.  He was put on Gemzar and Clinical Trial.  Miraculously my brother has beat the odds, he was recently taken off Gemzar and Clinical Trial and is now on Quarterly CT's and Blood Work.  His doctor cannot tell him why he is getting better only that his metastic cancer has gone into remission.  Although we are greatful to god for sparing my brother, we do not know why he has improved while others have not made it this far.  I was a little surprised why there are no studies being conducted as why to this point he has survived after being diagnosed with late stage cancer.  He has not changed anything special other than curb smoking, eat healthier, no alcohol, reduced stress, and mild exercises.  We are not sure how to proceed. http://www.cancercompass.com/message-board/message/all,41513,0.htm mancillab Fri, 13 Nov 2009 00:00:00 GMT My mother has pancreatic cancer.  Believe it or not she has had it for 6 years.  She had surgery and chemo and then about two years later it came back.  She has been taking chemo again for 31/2 years.  Recently things have been going wrong.  She had a fall and fractured her pelvis, sacrum and hip.  She was getting around with a walker.  Then she has a seizure.  Then when she went to chemo her blood work was so poor they hospitalized her gave her 2 pints of blood and she was there 2 weeks.  Her stomach is huge, her appetite horrible (she says she is not hungry and things don't taste good.)  She is retaining water in her legs and feet, her mind doesn't seem as sharpe, and she can't tell when she needs to urinate.  Is this near the end.  I am so frustrated because she wanted to come home and there is no way my 87 year old father can take care of her and I live 600 miles away.  I have been up here 4 times since the end of August and I need to know what to be prepared for.  She is home now and I am helping my Dad but we are struggling.  I just need to know what to expect next.  Thanks Janice   http://www.cancercompass.com/message-board/message/all,41465,0.htm JZimmer66 Wed, 11 Nov 2009 00:00:00 GMT Read the following article about his cancer treatment ....  much to be learned... It might save your life! http://www.naturalnews.com/027030_cancer_chemotherapy_Patric Also do a google search using "naturalnews.com and cancer" for the truth about cancer. Take care, Mel http://www.cancercompass.com/message-board/message/all,41443,0.htm cures4melanoma Wed, 11 Nov 2009 00:00:00 GMT My mom is going through post surgery treatment.  She just finished two cycles of gemcitabine (3 weeks on and 1 week off).  When she started chemo in September, her C19-9 was 30.  We were told today that her level on October 20th was 213.  The oncologist said she will be tested again next Tuesday, November 17th to see what her C19-9 level is.  He did say that a tumor could be growing, but he also said that the chemo could actually be raising her C-19-9 level.  I am trying to find out info as to whether the chemo is capable of raising her number.  He didn't seem alarmed, and thinks it is a good chance the chemo could be causing it be elevated?? http://www.cancercompass.com/message-board/message/all,41440,0.htm mariaw Tue, 10 Nov 2009 00:00:00 GMT Hi, I had surgery to remove a tumor in the tail distal area of my pancreas.  My doctor gave me the choice to decide to do chemo / radiation, or gemcitabine or gem/ capecitabine.  He left it up for me to decide??  I am not an expert and am not sure of whar to do.  I know they usually recommend the radiation , but I have also heard of a lot of problems whith that.  Dose anyone have advice or experiences with this.  Thanks. http://www.cancercompass.com/message-board/message/all,41420,0.htm tswish Tue, 10 Nov 2009 00:00:00 GMT My husband and I are currently living with my MIL who is going through her second round of chemo for Pancreatic Cancer.  She eats well, or was eating well but is very apathetic about fluids.  She can go whole days without drinking or only drinking one glass.  She was recently hospitalized with dehydration and while there found she had a bacterial infection-most likely from her port.  Since being released from the hospital she has been sleeping more than usual.  While there is more to her backstory my problem now is how to get her to increase her fluid intake?  I've made a chart and we mark off every time she has an 8oz glass of water or juice but she's only averaging about 4 1/2 glasses a day. The chart has only been in effect for a week as we've only been living with her for about 3 weeks.  I told her I don't want to take her back to the ER for dehydration but since she only wants to sleep its hard to get her to eat and drink.  I made jello and have tried in the past to get her to eat popsicles or just to keep a glass of water or a bottle with her at all times and just takes sips throughout the day but she won't do it.  then when we badger her to drink she ends up downing the whole glass at one time and then saying that she feels full. Any ideas that you can suggest? http://www.cancercompass.com/message-board/message/all,41396,0.htm sunshinestate Mon, 09 Nov 2009 00:00:00 GMT my cea levels whent from 11 to 23.3 in 10 days any input I am new to this and have no clue as what to expect. The dr. did a ct scan and it was clear the first time and 2 months latter it showed something by the panc thats when the cea levels whent up?? http://www.cancercompass.com/message-board/message/all,41367,0.htm johnpooler Sun, 08 Nov 2009 00:00:00 GMT Hello to all - I am a 40 year old woman with stage 4 pancreatic cancer - mets to the liver ( over 14 lesions - non resectable) diagnosed in October of 2007. I was originally diagnosed with adenocarcinoma of unknown primary origin but after molecular profiling have been told that it is most likely pancreatic cancer with a slight chance of colon cancer. I have been on carboplatin, taxol, tarceva, and avastin - alimta and avastin - oxiliaplatin, xeloda, and avastin, and now CPT 11, 5FU, and avastin. I have been doing chemo every 3 weeks for 2 years with one break. During that break my liver lesions went crazy and grew much larger and new lesions were seen. I have had numerous trips to the ER, been hospitalized a few times, had 3 blood transfusions along with almost every side effect out there - not to mention I have been bald for 2 years now. SO... I am just wondering if anyone else out there has been doing chemo for a long period of time with no end in sight and what keeps you going? I am trying so hard to stay positive mentally but my body is not helping with this. I am so fatigued all the time, nauseated constantly, and have issues with severe pain - all of which I take medicines for yet still have issues. I feel as though I am in a dark tunnel with no light at the end. I have 2 kids and a husband that I am fighting this fight for but lately I feel as though I am not much use to them - having more bad days than good and no energy to do much of anything. Yet I have to walk around with a smile on my face saying "I'm fine" all the time because no one wants to hear anything else - or should I say no one can tolerate the thought of anything else. What I really want to do is cry. The only thing that keeps me going is that the thought of leaving my kids and husband alone is more than I can bear. But how do you keep on going through chemo after chemo after chemo knowing that chances are you will be doing it forever - however long that is? My scans are not good enough for my oncologist to consider letting me stop right now and I know if I do stop the cancer could take over and I may not be able to get it back under control. I think I am struggling with the quality of life vs. quantity of life idea right now. Oh well - sorry about the rant - I really do know that I am blessed to still even be here at all when my prognosis at the start said I would not be - I am just really tired of feeling so bad and feeling as though I am becoming a burden. Tomorrow is a new day and I will continue to put one foot in front of the other and be thankful for what I do have. I just think it would help to not feel so alone, to know that someone else might understand. Thanks for giving me a place to vent! Lori  http://www.cancercompass.com/message-board/message/all,41359,0.htm Lomo1 Sun, 08 Nov 2009 00:00:00 GMT My partner has been previously diagnosed with an adenosquamous pancreatic tumor in the body and tail of her pancreas.  Two sessions involving eighteen separate applications of chemotherapy (GemCis) have resulted in a 90% reduction in markers and a 50% reduction in the size of this primary tumor. However, in the build-up to what was planned as a new spell of radio and chemo, a PET scan was done (belatedly?) which showed that, contrary to this tumor being regarded as 'locally advanced' it appeared to have been metastatic all along, with further hot spots showing up in the lymph system. The 'good' news would seem to be that these new hot spots appear to have suffered the same fate as the primary inasmuch that they don't appear to be growing or spreading as a result of her treatment so far. So, we're back to chemo again - this time, it appears, a 'systemic' version which has yet to be decided upon. I just wonder if anyone has trodden a similar path or has any thoughts on where we're at now please? http://www.cancercompass.com/message-board/message/all,41315,0.htm emcee46 Fri, 06 Nov 2009 00:00:00 GMT November has been designated as Pancreatic Cancer Awareness Month.  We need to get the correct information out to the public regarding Symptoms, Risk factors, Diagnosis and Treatment options.  We also want to hear about those who have been diagnosed, family members stories and most especially, those who are winning the battle.  Please go to PanCan.Org and help us spread the word. http://www.cancercompass.com/message-board/message/all,41247,0.htm nec15 Tue, 03 Nov 2009 00:00:00 GMT About 2 months ago, my mom started acting strangely.  My dad had passed away about 3 years ago and she pretty much stayed home and we did what we could for her.  I know she was so lonely, we all had jobs except for a brother that was on disablity and he took her to her doc appointments, my sister gave her her medicene and took her dinner everynight, she lived next door and I would come over once a week sometimes every 2 weeks and do her hair since I am a cosmetologist.  About 2 months ago, her little companion , a small dog got killed on the highway.  She started going down then.  She had lived with RA for about 35 years, so her hands were all crooked.  She had dementia and it seemed to be getting worse, She knew who her children were.  All of a sudden a month before she passed, she started locking her doors and would not let us in.  She refuse to take her meds and would not see a doctor.  She would not eat.  My brother and sister were her main caregivers and they tried send a rescure squad to get her and she refuse to go.Finall y, my sister drove her to the hospital, but she would not get out of the car, my brother had to get a court order to get her to go into the hospital.  she had a eye that was about to pop our of her socket and it looked infected.  Well it was infected, they found that there was something wrong with her liver, so they kept her.  Next day, they did a cat scan of her liver.  We were called in the next day and told that she had a tumor in her liver, one in her pancreas, she was 78 years old and was to weak to take cancer treatment, they gave her less than 6 months.  I started crying on the spot, I myself had a huge cyst on my right ovary and was suppose to go in to have surgery.  Everyone told me to go ahead and then during my recovery time away from work, I could spend time with her.  I had Surgery on Monday Sept 28, she died Oct 2, that fast.  I was devastated.  I did not get to spend my time with her.  I did get to the nursing home and sit with her while she was passing away and tell her I loved her.  We all had no idea she had cancer.  What a blow that was and I hurt so much and cannot stop crying.  She had a beautiful funeral, the room was packed full.  My mother was a sweet lady and a good friend, towartd the end we did not know what was going on with her.  I quess she kind of knew it was close to her time, she was whispering to people that was not there.  I will miss her so much. http://www.cancercompass.com/message-board/message/all,41244,0.htm sdavisbook Tue, 03 Nov 2009 00:00:00 GMT Hi all, I am caring for my 59 year old father who is terminally ill with Pancreatic Cancer.  He is in his 20th month of fighting this awful disease and it hurts me so much to see him wasting away in front of my eyes and I am scared.   Really scared.  He was a healthy 14 stone tubby man before he was diagnosed, now he is down to 8 stone and is a complete bag of bones except for his huge distended stomach due to fluid build up (ascities). The tumor was found in the head of the pancreas which was blocking the bile duct so they put a stent in to relieve the jaundice.  The tumor has since spread to his bowel.  Dad was pretty well up to mid August of this year when he couldn't keep any food down, after several tests it was apparent the tumor had spread and grown around the top of the intestine preventing any food from passing through the stomach. The hospital performed a gastric bypass to relieve symptoms so dad could eat again.  It was after this surgery he developed the ascites and began to lost weight drastically. For the past couple of weeks dad is now spending more and more time in bed as he hardly has any energy at all.  He is down to eating one or two small meals a day (if at all) and drinks probably two glasses of fluid a day.  He complains that his taste has gone and he has no energy.  Some days are better than others and he does feel better after he has had the fluid drained, however the fluid always returns within a couple of days and gets so bad dad is having to have it drained every week. From writing all of this I guess I pretty much know the answer to this question but just want to know what time I have left with my father.  I know every patient is different and every cancer is different but i want to know what I may experience in my fathers last week/days/hours.  I lost my mum to breast cancer last year so I have seen what happens in the last few hours but I want to prepare myself so I know the signs to look out for and be as strong as I can be for my dad to make him as comfortable as possible. Any advice or experiences you can share would be really appreciated.  I would like the truth so please be honest with me. Much Love, Lisafo x http://www.cancercompass.com/message-board/message/all,41203,0.htm lisafo Sun, 01 Nov 2009 00:00:00 GMT My mother had pancreatic cancer two and a half years ago. Had radiation treatment. Had chemotherapy treatments. Was fine for about one year and then started having pain. Had chemotherapy again. She finally could not handle the chemo treatments anymore. She has been on an alternative treatment for one month. Her pain is gone and she is doing much better.  She is also taking treatment to repair the damage done to her endocrine system.  See link  http://www.cancertutor.com/Other/Pancreatic_Cancer.html   http://www.cancercompass.com/message-board/message/all,41113,0.htm dlucas Thu, 29 Oct 2009 00:00:00 GMT Hi all...I had started another thread entitled "Good News" about two months ago because my husband, who had been previously diagnosed with Stage IV inoperable pancreas cancer, had after a year of treatment been deemed resectable after all.  On Sept 10th he underwent the Whipple procedure to remove a tumor on the head of his pancreas plus his gall bladder and parts of his stomach and intestines.  His bile duct was reconnected to his stomach.  We had been told he would be in the hospital for a week to 10 days.  Well, he ended up being in the  hospital for 40 days during which time he had to have his feeding tube removed in order for a larger one to be inserted after which he developed an infection.  So about 2 weeks was added to his stay because of these setbacks.  He was finally discharged but still with his feeding tube and stomach drain tube.  I'm not so sure we did the right thing with this Whipple after all.  My husband still can't eat so I don't prepare meals the way I used to.  he can't work either.  I see him going downhill physically and mentally everyday.  he is constantly nauseated and experiences a bout of dry heaves at least once a day.  He is depressed, also.  This may sound crazy but he actually had a better quality of life before the surgery. Except for a few days of sickness after his chemo he at least was still able to work and eat and (this may be TMI) but he still felt like loving me.  He told me today that he could feel himself going down and that he feels depressed.  anyone else have any advice or encouragement for us? http://www.cancercompass.com/message-board/message/all,41104,0.htm possumvalley Wed, 28 Oct 2009 00:00:00 GMT