Please Tell Me There Is Hope.My Dad Is Diagnosed With Stage Iv

hi everyone.im new to this forum.my dad had trouble eating,he said it seemed as though it felt like food would get stuck in his throat.he had lost a lot of weight but he thought it was due to his new style of eating habits.when he was at my house for thanksgiving he didnt eat much.when we got together at christmas,and he spent most of the time in the bathroom vomiting.he looked like a different person because of the weight loss and it was at that point i was scared and afraid of what news was down the road.he had an appointment for a CT scan the following week which revealed a tumor in his esophogus.it was later revealed where spots were seen on his liver as well as his lymphnoids (please excuse my spelling errors).the main part of this tumor is where the esophogus meets the stomach,its in both places.as a precaution he had a feeding tube put in 4 days ago and he is having problems with mucous,and is in a lot of pain.we met with his oncologist to discuss chemo treatment which begins next week once every other week,there is this other drug which he needs as well which i believe is a 1 time thing where he has this drip for 48 hours has to wear this thing on his side and a nurse will turn this off after 48 hours.im very concerned.its been 4 days since the feeding tube installation and hasnt met with a nutrionist to begin the feedings.2 days ago he had blood work done which revealed he is anemic and dehydrated.im praying that once these chemo treatments start that it will shrink the tumor and allow him to at least eat.he needs to put weight back on and get some of his strength back.there are so many questions one of which i asked my dad why something wasnt discovered earlier?he said he dint know and in fact he had a complete physical in september.is there anyone else on this board who is or has experienced anything similar?its my dad's 70th birthday on sunday the 27th.looks like the big bash is put on hold until the cancer is in remission.thanks everyone.

It is tough to tell you that everything will be ok since everyones treatment and condition is so individualized.  However, there are some success stories and here is ours.

My wife (only 43 years old) was diagnosed with Stage IV in March of 07.  We caught it very early due to NOT accepting that the pain in her abdomen was simply an ulcer and DEMANDING an endoscopy which identified the stomach cancer.  Although we were dealing with just two small tumors (one at the top of her stomach and one in her liver) she began an aggressive chemo treatment referred to as ECF which included: Epirubicin, Cisplatin, and 5FU - the 5FU was delivered continously using a pump that she had to carry around with her.  Each of the chemo treatments were three weeks in length (she received the E and C only once every three weeks).  Post 4 rounds (12 weeks) her tumors were no longer visable on a CTScan and she was classified in remission.  During these treatments she was in good spirits and remained dedicated to beating the cancer.  She did however, lose her hair but not her appetite and remained well hydrated and in good health.  She received two more rounds of ECF and then we took a month off.  This brought us to late September when she was placed on another 6 month chemo program including Oxaliplatin and Xeloda (the Oxaliplatin she received once every three weeks and the Xeloda she took orally on a daily basis for the first two weeks and none in week three).  She has been on this regimen since October and completes it in March 08.  She remains in remission based on rescans taken in December 07.  She has experienced increased pain and is worn out at this point due to being on treatments for so long (almost 8 months now).

She does however, remain in remission.  The doctors did initially suggest a surgical intervention but we declined this option due to the opinion of other oncologists that the only was to beat it (since it had spread to the liver) was through chemo therapy and they did not agree on the drugs so we had to research and make our best guess on what we wanted to use.  So far our decisions have been good ones but it remains the health teams guess as to which will work.

Please, do all the research you can and obtain alternate opinions.  Be aggressive and motivate your dad the best you can by providing support and encouragement.  The goal is to beat it as the alternative is not acceptable.

Our prayers and thoughts are with you, your dad, and your entire family.

Keep us posted.

Steve

Hartford, CT

steve in hartford?

small world,im in wethersfield.thanks for the reply.its very toguh now as my dad has not been able to eat just drink a little here and there.we have not been instructed how to use the feeding tube as we are waiting to hear form a nutritionist.he had  PET scan on friday and we are awaiting the results.today is his 70th b-day and i think he is going to be treated this AM with an IV because he has been dehydrated for the past few days.

thanks,

cncguy 

Are they saying it is esophageal cancer with mets. or stomach cancer? I can't tell what board you're posted on for, but I don't see you on esophageal board which is what it sounds like to me from experience.  He will probably feel appreciably better after hydration, but hasn't he had anyone from VNA or anywhere come to show how to use feeding tube and get set up with supply of food.  That was how it worked for us.  I would call VNA if you have one providing for you and raise holy hell to find out why this hasn't been addressed and to make sure someone didn't drop the ball.  They prescribed food for us and started setting up services before we left surgcal day care.  You need to be nutritionally viable if you are going to have a shot at all. I also practice tongren healing which is a form of energy healing and it has made a huge difference in quality of life for my husband through treatments.  I'm mentioning it because I know there is a group which meets for guinea pig class in the Hartford area, so if you were interested in reading about it you can find info online by googling tongren healing.  My huband was diagnosed with Stage 4 esophageal with mung mets over two years ago.  Although it has been a struggle at times along the way, it has been over 26 months since diagnosis, so there is clearly a reason for hope if you're all willing to put in alot of hard work to push through it.  Will keep you in my prayers.  

I reread your post again, and would advise you to look at esophageal board.  My husband presented with exact same symptoms, and cancer was at base of esophagus.  It used to be considered stomach cancer frequently when it was located there, but I believe at this point it is mostly considered a separate cancer.  It is frequently stage 4 before symptoms present themselves, so often misdiagnosed as GERD until it has presented with more specific symptoms such as difficulty swallowing.  We begged for an endoscope for months only to have primary care keep saying it was only an ulcer or GERD.  He was very wrong!

hi tongren-

  thankyou for the reply.at 1st i thought it was esophagus but after meeting with the oncologist on thursday much to our suprise it is at the bottom of the esophagus and where it meets the stomach so both places.its unvelievable,seems as though the tube was installed on tuesday with no mention of how or when to use it,just shown how to clense it.its 8:40 here now and im going to be speaking with my dad shortly,i believe he is going in this AM for an IV to treat the dehydation and im going to see if there is any new news regarding the tube.ill update this post shortly.

thankyou,

cncguy

i just visited with him today and he is feeling a little better.he is able to drink but not eat.when we suggest he eat something he thinks we are forcing him to eat.hes been drinking soup,chicken broth just to name a few.i asked him that after a few treatments if tests show that your tumor has shrunk,will you be trying to eat more?he said yes,he would even go buy a steak and cook it on the grill.the problems is right now when he tries to eat ,whatever he eats gets stuck as the tumor is right where the esophagus meets the stomach and its blocking it so to speak.during the week when i was visiting he was eating eggs and had a hard time with those.tomorrow he is getting treated for dehydration via an IV,tuesday he is getting a port installed to get ready for the 1st chemo on wednesday or thursday.i did get a list of the drugs and they are as follows: folfox,oxaliplatin,5 fluorourncial,folinic acid,and avastin. thankyou, cncguy

You'll know if the tumor is shrinking without a test because swallowing gets easier.  We did liquid diet for a while, then progressed to soft food and back to well chewed regular food.  As we went through radiation it got easier to eat, until the throat got sensitive near the end.  I made a fresh organic soup every morning, (didn't want any chemicals or pesticides moving through his esophagus) so I came up with a few interesting soup recipes until we moved back towards regular food, then we went into things like applesauce and mashed potatos.  Cream of wheat has been a morning staple in my house ever since (tried cream of rice for variety but he didn't like it).  You'll get the hang of it and learn to adjust. 

hi-

  my dad had a busy day today.i thought he was just going in for an IV to treat his dehydration,but along with that ,he (and his girlfriend) met with a social worker and discussed many things.he was at the hospital today from 11 to 5,and when i called at 5:30 he was in bed.he gets the port put in tomorrow which sounds like a 5 hour visit,and he will be instructed how to use the feeding tube as well where it is being used while he sleeps.this is going to be a long road and from what i hear,and things will get worse before they get better.

talk soon,

cncguy

My father was diagnosed in March 2007 with the same exact cancer as your father. Started at the esophagus, and infected the upper portion of the stomach. He was also Stage 4, and was inoperable due to lymph node involvement, and malignancies in the perionatal cavity. My father was 63 years old, in great health, and took good care of himself. He also presented the same symptoms. Eating and feeling like the food was getting stuck in his chest. Even liquid was a chore for him, he would vomit everything and anything right back up. He was given a feeding tube for nutrition also. Is your father a candidate for surgery? As I said, my father was not because the cancer was just too far gone. He was resistant to chemotherapy and passed away a short 7 months after diagnosis. I hope and pray that the chemo will work for your father. I am not trying to be a downer by any means, and I am sorry if my story frightens you in any way, but I indentify with exactly what you are going through and wanted to let you know about my Dad. Have the doctors given a time frame? Did they mention that he may have a chance if being cured?

 My thoughts and prayers are with you.