CancerCompass message board discussion started by LSUSAN on 1/3/2008 http://www.cancercompass.com/message-board/message/all,19347,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My father is a professor who was teaching and going to the gym 6 times a week.  My father never drank or smoked and always ate healthy.  He also survived open heart surgery that he had over 2 years ago and recovered fully.  5months ago my parents were supposed to go on a trip to Europe and it was cancelled because my father started vomiting and was rushed to the hospital and they performed an MRI and the only thing they found was that he had some stones in his gall bladder and they in turn removed it and he was okay since then, but has been complaining of heartburn.  Then at Thanksgiving he said that he was feeling weak and he looked pale and his appetite was down so he went to the Dr. and they checked his Hemoglobin and it was low so they checked his stool and it was positive for blood so they sent him in for en endoscopy/colonscopy.  I figured that since my dad was on aspirin therapy that perhaps he had a bleeding ulcer.  I then called my mom, who went with my dad to the procedure, and she couldn't even speak and she was crying so hard.  I asked her what was wrong and she said it was not good.  I could feel my stomach drop and was soooo---scared and then my mom told me that my dad was just diagnosed with a 10 centimeter adenocarcinoma tumor in his stomach!!!  I fell to the floor and that was when our lives dramatically changed.  Things would never be the same again.  I was absolutely beside myself in disbelief and horror.  We in turn, through a formal CT scan were able to determine that the cancer in his stomach has also spread to the regional lymph nodes and liver.  The surgeons also determined that this was one of the largest stomach tumors they have seen and spreads completely through the posterior wall of his stomach and is at this time inoperable. And due to the spread is incurable.  We even had an independent radiologist review the MRI from July of this year that was done when he had his gall bladder removed and confirmed that there was no sign of this cancer.  How can a cancer grow so quickly!?!?!?  Is this unheard of?  Can this type of cancer truly grow this quickly from nothing to what I described above in only 5 months time????  According to my dad's oncologist who has been recently assigned to him, he says yes, it's possible.  My dad has also had a chest wall port placed and is now receiving oxyplatin, Epirubicin IV every three weeks and is also on daily Xeloda in an attempt to try and shrink this tumor in his stomach so that they may be able to perform palliative surgery to remove it from his stomach since this tumor is causing him to bleed out and he required about 5 transfusions of blood last month.  Since he started the chemo his bleeding seems to have subsided and he is stable now but complaining of feeling very tired.  My problem is that I moved to California a year and a half ago from NJ, which is where my dad is and I feel so guilty for not being there because I don't have enough time off at my job and I have not been in my job for a year to take FMLA.  I own a condo out here so I need to make my mortgage payments and I offered to come move home to help my mom and dad out but my mom says that I should stay put because she can't stand the cold weather in NJ and her wish is to come live in California someday and that I am holding the ticket to her future.  This is sooooo---difficult and I am feeling so powerless with no options and I feel very alone and scared being so remote from my folks at this terrible time.  I could even come home for the holidays.  They did have a trip planned to come out here but it had to be cancelled at the last minute when they received this terrible news about my dad.  Also, because I live so far away, I tried asking my dad's Dr. how long he has but he was unable to give me any definitive timeframe.  I just want to make sure that I see my dad before something terrible happens.  Does anyone have any advice to help me with this?  And based on anyone's experience with this terrible disease, does anyone know how long my dad has or what lies ahead for my family in terms of disease process and what to expect?  Thank you. LSUSAN Thu, 03 Jan 2008 00:00:00 GMT My heart goes out to you and your family.  I lost my father in Nov 2007 to stomach cancer, and I come back to the board from time to time as a form of therapy, to help me through my grieving.  I too lived out of state when my father became ill.  His story started with bloating, feeling full quickly, a lot of burping.  He let it go, tried to help it holistically, with teas, herbal cleanses, etc.  My dad was 55, an avid athlete, and a certified health food store nut =).  I still wonder why every day, but I trust in God that this was the way his life was to go. I flew back and forth a few times in the 6 months we had from diagnosis to his passing. It was hard dealing with the guilt of not being there all of the time, but a social worker in hospice who had recently lost her father to cancer told me that you will ALWAYS find something to feel guilty about.  It is just human nature.   Your dad knows you have things to deal with as well.  Just try to balance your time with him and the rest of your life.  My father did not respond to chemo, the tumors had spread to the lymph nodes, and it was too aggressive.  He slowly stopped being able to eat.  He had severe hiccups to the point he almost couldn't breathe.  Lot's of fluid buildup.  He had a J-tube, radioactive stints put in to help shrink another tumor, eventually tube feedings, and then that had to stop.  My daddy lost almost half his weight.  It was a shock seeing him again when I came back into town. He was so little and weak. You MUST be positve, and if you have compassionate and caring docs and nurses like we did, they will tell you NO ONE can tell you how much time he has, that it is up to GOD.  SAY WHAT YOU NEED TO SAY! No matter if your dad has another year or twenty years. It is so important to not have regrets about anything.    Take turns with appts, monitoring meds, and don't forget to listen to what HE wants.  My dad would get frustrated with us when he felt we were doing things for him instead of asking him.  God bless you and your family, and keep us posted. tashfish Thu, 03 Jan 2008 00:00:00 GMT  On 1/3/2008 tashfish wrote:My heart goes out to you and your family.  I lost my father in Nov 2007 to stomach cancer, and I come back to the board from time to time as a form of therapy, to help me through my grieving.  I too lived out of state when my father became ill.  His story started with bloating, feeling full quickly, a lot of burping.  He let it go, tried to help it holistically, with teas, herbal cleanses, etc.  My dad was 55, an avid athlete, and a certified health food store nut =).  I still wonder why every day, but I trust in God that this was the way his life was to go. I flew back and forth a few times in the 6 months we had from diagnosis to his passing. It was hard dealing with the guilt of not being there all of the time, but a social worker in hospice who had recently lost her father to cancer told me that you will ALWAYS find something to feel guilty about.  It is just human nature.   Your dad knows you have things to deal with as well.  Just try to balance your time with him and the rest of your life.  My father did not respond to chemo, the tumors had spread to the lymph nodes, and it was too aggressive.  He slowly stopped being able to eat.  He had severe hiccups to the point he almost couldn't breathe.  Lot's of fluid buildup.  He had a J-tube, radioactive stints put in to help shrink another tumor, eventually tube feedings, and then that had to stop.  My daddy lost almost half his weight.  It was a shock seeing him again when I came back into town. He was so little and weak. You MUST be positve, and if you have compassionate and caring docs and nurses like we did, they will tell you NO ONE can tell you how much time he has, that it is up to GOD.  SAY WHAT YOU NEED TO SAY! No matter if your dad has another year or twenty years. It is so important to not have regrets about anything.    Take turns with appts, monitoring meds, and don't forget to listen to what HE wants.  My dad would get frustrated with us when he felt we were doing things for him instead of asking him.  God bless you and your family, and keep us posted.Thank you so much for your response and your very kind words.  I really appreciate you addressing my feelings about living far from my dad and after reading what you wrote, I feel better because now I feel like I'm not the only one who had to face this dilemna.  I really admire that although you went through a terrible ordeal, from what you described, with your dad, that you are still able to reach out and give someone like me some reassurance.  Ever since I found out about my dad's diagnosis I have felt so alone and it feels so good to hear from someone else who went through this and I felt a great sense of comfort reading your response because I could tell that you really understand how I am feeling right now.  I would like to continue to keep you posted on what's going on with my dad.  This has got to be the hardest thing to accept and deal with.  Thank you and God bless you : )  LSUSAN Thu, 03 Jan 2008 00:00:00 GMT lsusan,keep the faith. yes, this cancer is a very tough one, but there have been great stories on here. i too agree that you should be sure to say any and everything that you want to now, to your dad. don't leave anything on the table unsaid.my dad was diagnosed in july. and i am lucky enough to live next door. but i am the youngest of 6, and many of my siblings haven't been able to come and see my dad as much as they would like to. i have doen alot of things that will help keep his memory alive...even if he lives 20 more yrs. i have made a memory book and had my siblings and aunts & uncles contribute stories and memories that they have had w/ my dad. i made dvd's of my dad reading to my little girl so that if he does lose this battle she will be able to know him. i started a carepages so that family and extended family can keep updated on anything going on and they can leave messages for him and i can post pictures too.be there for both your folks. this is a tough journey at times and they will need all your support. a phone call can mean so much. read all that you can. this forum is a great resource. i have gone back to the 1st pages and read through everything. help your folks w/ questions for the dr. as sometimes when you are going through this process it is hard for the patient to remember things to ask.take care of yourself as best you can. i am so sorry that you have to go though this. i go through days where i am a basket case and can't function. but i always come back to positive side of things. there is another member on here who always says "NEVER GIVE UP" take those words and run with them! you & your family will be in my thoughts and prayers. peace, kris lippygirl Thu, 03 Jan 2008 00:00:00 GMT Hey Susan, greetings from NJ!  You're not alone in this battle.  We're all dealing with this horrible sickness one way or another.  My father is currently winning his battle against stomach cancer and he originally had a bleak 6 month prognosis (July 2007).  The best thing you can do is to try to be there for your father.  Phone calls are very important.  Let him know you care and that if he needs anything, you'll be there for him.  Never give up hope.  The mind is a powerful force and I truly believe it's capable of curing disease.  I suggest watching "The Secret" for inspiration.Just out of curiosity where in NJ is your father being treated? ~Mike Steeda Fri, 04 Jan 2008 00:00:00 GMT Dearest Susan,I am so sorry that your family has to endure this tragic disease, but all is not lost. Kris had a very valuable point, read everything on this board with regards to stomach cancer. My partner was diagnosed February 1st of last year. He has been doing the SAME treatment your dad is now on since we could not have the stomach removed due to full penetration of the walls into the abdomen. He has not had many side effects from the chemo, energy is usually zapped on day 4,5, and 6 after infusion. That is pretty much it. He has felt good enough to travel pretty much every three weeks in between treatments. We have been very blessed. About 5 or 6 months in, we did stretch out the IV treatments to every 4 weeks due to lower neutrofil counts. Just last month, we have had to go back to every 3 weeks as the CA19 (tumor markers) have been on the rise, now standing at 90 from a low of 36 after first rounds of treatment way back when. We did have to go from daily Xeloda in between IV treatments, down to just the 10 days immediately following IV infusion due to hands getting red and the associated neuropathy. Our initial best guess from the doctors, and it IS ONLY a best guess as everyone is different, was 8 to 10 months with chemotherapy. Well here we are at month eleven, and leaving for Cozumel in a few weeks, if that tells you anything. We are starting to notice some changes, but all in all, he is still rocking. Most of the information you will find is all negative, but I must tell you, that has not been our experience. Life is what you make of it, and attitude is a HUGE part of it. Just be strong for your family and enjoy every minute you have. Most people don't get the chance to know when you are going on to a better place, so make the most of it. Our thoughts and prayers are with you and your family. God does take care of the rest.Peace and Love,Scott Eliot1 Sat, 05 Jan 2008 00:00:00 GMT Dear SusanI know how hard it is top be away from your father , I am in the same boat with you , My father has stomach cancer  since nov.2006, and he is still going from one chimo to another one , each chimo helps him just for 3 months,  his doctor in Russia said  that surgery its not an option , what I am trying to say , think possiteve , never give up, he migth live years  , going from one chimo to another one, hopefully to the surgery .I stayed with my father for 3.5 months , and came back , I had a my second boy , but it so,sooooo hard i havent seen him for 9 months,I am planing for the to come , so I can take him for second opinion in NJ  ,NY, I live In NJ,Susan when i was reading your msg  I had a feeling that you talking about my father and my feelings, As you said he was healthy eater and non smoker, and everything happened so fast , it did........B e strong, call him , talk to him, that helps a lot, just do what you can to keep him happy and smile .Susan witch hospital your father went to, Do you have any idea which one is good or any good stomach cancer doctor?God will never leave you  and your father and any of us , we are his children, always remember.  hayk56 Mon, 07 Jan 2008 00:00:00 GMT  On 1/4/2008 Steeda wrote:Hey Susan, greetings from NJ!  You're not alone in this battle.  We're all dealing with this horrible sickness one way or another.  My father is currently winning his battle against stomach cancer and he originally had a bleak 6 month prognosis (July 2007).  The best thing you can do is to try to be there for your father.  Phone calls are very important.  Let him know you care and that if he needs anything, you'll be there for him.  Never give up hope.  The mind is a powerful force and I truly believe it's capable of curing disease.  I suggest watching "The Secret" for inspiration.Just out of curiosity where in NJ is your father being treated? ~MikeHi MikeI see that we have the same story , the only difference my father is out of state but he is cominig by the end of jan , He has stomach cancer since nov 2006, he is going from one chimo to another one , no opiriation so far, i am planing to  take him  for two or three diffrent opinion , where did you take your father, do you know any good doctors ?How is your father feeling , is he eating?any help will helpfull kristine hayk56 Tue, 08 Jan 2008 00:00:00 GMT Hello Everyone, I am responding to this topic/chain since it is very close to what I am going through. I live in NJ and dad is in India. He was diagnosed with stomach cancer in Dec 2007. Mots of you may know that this type is most common in Asian countries - mostly men over 60. (Adenocarcinoma). His tumor was large and we had to go in for a total gastrectomy and spleenectomy. there were 5 lymph nodes out of 24 where cancer had spread (metastiscis?) This was categorised as Stage 3/4. Dad is 71 years old. Went for a 6 month of chemo after that (5fu, cisplatin and Epirubicin). He was cancer free(?) till Oct 2007. His PET and CT were clean. In Oct/Nov timeframe vomitting started and his eating dropped, enregy level dropped again. We have been going through ots of investigations (Enteroscopy, Laproscopy, Stent placement, etc.). But no major success. Seems bowel loops are all entangled and hard to move around. Surgeon can not do much. He was not advised another chemo. he has a PICC line and feeds via TPN and saline every aternate day. it is very painful and depressing. Are there any other options? conventional? unconventional? his CT Scan came out clean for otehr parts. Not sure for how long it will remain like that. He has fought so well till with it. I wish I could do more. I have taken time off from work for last 6 weeks. Planning to return back to NJ soon. My prayers and wishes for everyone going through this. lobster100 Sat, 12 Jan 2008 00:00:00 GMT Hi. Very similar stories. My father was diagnosed with Stage IV stomach cancer in July with mets to liver. He had a stent placed in his esoph to help him swallow. He went through chemotx with minimal side effects. This past week he had a Jtube placed because he can no longer swallow foods without throwing up. I have been helping him adjust to the tube and pump but I leave on Tues to go back to California. He is in NJ... He has little support system and his spirit and morale are very low. He doesnt want phone calls or visitors. He lives with his gfriend who is disabled and barely able to help him. What a mess! I live in California and work as a Pediatric ICU nurse but I cant leave my entire life to move here to care for him. I am not sure if we should put him in a nursing home? He may want to try second type of chemo but his MD appt is not till the 29th. He is very weak and tired. I also don't know what to expect as far as his symptoms from this point forward. It is hard to tell how long he has to live. His mind is as sharp as a tack.  Any advice is greatly appreciated. For the first time as a nurse, I feel very unsure of what is next.Thanks for your response.  WhendeeRN Sat, 19 Jan 2008 00:00:00 GMT