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New here - hubby has stage IV gastric w/ mets to omentum, liver, lung & chest

2caret's picture
2caret
Posts: 1
Joined: Sep 2009

HI. I am posting here for help. My husband (45yo) was dx in Dec 2007 with stage IV inoperable gastric cancer. At the time it had already spread to the omentum (the lining of the abdominal cavity) and chemo was the only treatment available. He went thru 2 chemo protocols in 14mo.(first was cisplatin, taxotere for 7mo - second was oxaliplatin & 5FU for 7 mo.) Then we were told that no more FDA approved chemos were available for him since it had now spread to his liver and we should look into clinical trials. That was 7 months ago. In June he was going to start a trial but his counts were great, he was feeling the best he had in a ong time and the docs suggested he take the summer off from chemo and see what happens. We agreed (since we have 3 kids) and we had the most amazing summer ever! You never would have known he had stage IV cancer! Then in Aug, we went in for a scan & bloodwork. The docs wanted to monitor him. The scan showed growth in the omentum and the liver spot was larger. So, we found a new trial and began a week later. This trial kicked his ass to the wall and back... it was AWFUL. After just 2 rounds (4 weeks) his scan showed so much growth in the omentum, an enlarged lymphnode on his chest and fluid surrounding his right lung. OMG Are you kidding me? So, no more trial. This brings us to today. We are waiting for test results of the lung fluid (pleural effusion) to see if its cancerous. The docs are pretty convinced it will be. So, now we have to see if there is an FDA approved treatment that he can go on since it has now spread to the lung and chest... maybe a lung cancer treatment? We will meet wiht the docs either this week or next - waiting for the call. THIS SUCKS. IT BREAKS MY HEART. I have loved this man for 23 years - more than half my life - and I cant stand to see him suffer. He has lost 70 lbs in 9 mo, walks like hes 80yo, talks like hes a drunk (from all the meds) and forgets everything that happens within minutes. He is a shell of himself. What is the hardest part is our 9yo son who knows daddy is sick but doesnt know that he will die... and my 21 yo son who is praying so hard that he doesnt lose his father, and my 18yo son who is away at college but and trying to forget his dad is sick. And then theres me. The sole caretaker. The one trying to hold it all together. The one who deals with everything for the kids and my husbands illness. The one who is ready to lose it at any given moment becuz I dont know how I will live without him. How I will deal with my kids losing their dad. How will I help his parents who have already lost 1 child (2.5 yrs ago) to a heart issue, and watched their other child go thru breast cancer? I have tried like hell to keep it all together. to be strong for everyone - but I cant do it anymore. We all need help - but my husband is the most stubborn and refuses to go to talk to someone. He doesnt even want a social worker coming. SO, that is why I am here... what do I do? I dont know if he will be with us for Christmas - I need to prepare my kids and I have no idea how to do that without completely tearing their lives apart. My heart breaks for every single person who has been touched by cancer - however that my be - it is an ugly, mean, nasty monster that has to be stopped - but is just too big for me. And as string as mu husband is - and even tho he has defied the odds already - he knows he cant beat the moster. But he will not go down without a fight.

beexonex116
Posts: 2
Joined: Sep 2009

I agree, cancer is the devil. Its a monster. All I can tell you is spend every last moment with him. Be beside him. I just recently lost my father. He slurred the last two weeks of his life. He told me two days before he passed that it was time for him to go. I sat by his side the whole day and didn't leave until it was time to sleep. I stepped into the next room for about 45 mins and my dad decided to release his last breath. I ran back in with my sisters screaming. I saw him pale, i screamed dad and he opened his eyes one last time with his hands reaching out to me and shut it back and laid back down with tears rolling down his eyes. He knew when he was to leave. There were so many signs. Its so hard to think back about everything. You're very fortunate, I only had 5 months with him. When I think of the 5 months, it seems like a dream as if it never existed. I would suggest your son come back from college and spend his last few months together with his dad. I quit college to be with my dad. I have a lifetime to go back to school but I only have one chance to be with him. He was grouchy and mean, but he didn't want to be. He was sick, he was in pain, but he loves me and I love him. He's my father. You only have one dad and one mom and that's it. I never regret what I had with my father. I was his babygirl. I miss him dearly. My life is horrible. I can barely function. I lost my mom when I was 9. I always regret I was too young to know anything so I always love my dad and gave him everything. I was also his caretaker. I battle with him I never accepted losing the battle, I thought he was going to win. He wanted so badly to live but they took the best of him. Cancer is so evil. I never knew anything about it. Stomach cancer is the most scariest. The say patient don't die from cancer but from lack of nutrition. So I had my father on Tpn because he was dying from dehydration. His kidney failed and it spread to his liver. Tpn causes the cancer to grow, but that gave me more time with him versus losing him more quickly. He lost 60lbs in 5 months. He had lost 11lbs in one week until i had him on tpn was wen he got his weight back. He felt stronger but really he was getting weaker. He was throwin up blood due to all the damage of cancer. I wish you the best. Be by his side don't ever leave! you won't regret it. I wish I can have another day to care for my father, to hold his hands, to hold him up so he can use the restroom or stretch his legs. To have one last chance to hear his voice, to hear him yell just to hear or see him. My life seems dead! i give anything to be where you are with my father, but now he's gone. Ppl say he's in a betta place and not feeling pain anymore, but how can being dead a betta place. It angers me wen they say no more pain, but i was controlling his pain, so maybe i wasn't doin a good job. Maybe I didn't do enough. I wish I can have him back.

claudia520
Posts: 4
Joined: Aug 2009

I am so truly sorry to hear about your husband. Let me begin by telling you that my dad who is around your husband's age was also diagnosed with stage IV gastric cancer this past July. He's been trough five chemos and there is one more to go before a scan can show results. After I read your story I realize that we have some things in common. My mom and I, but I give all the credit to her, is the sole caretaker of my father. We are three daughters, I am the eldest at 24, then a 19 year old, and a 17 year old. My mom works hard day after day to keep the family and household going. I help her with the expenses as my father cannot work anymore and even though she is a tough cookie, it breaks her to see my dad "walk like an 80 year old man" and he also lost about the same amount of weight as your husband. I cannot tell you everything will be ok, smile because we don't know. The doctors don't know how much my dad has to live, he even said to stop asking because the key is to live and enjoy every single day with that person as if it was the last one.... IT HAS BEEN WORKING FOR US!
so don't be afraid, DO IT! my mom and I cried every day since we found out, it was impossible not to, especially when we were around my dad, but then I decided that the best thing was to think about the future and live the present. I took my parents to a Yankee playoff game a couple of days ago, my dad loved it!! and even though it was only four hours long, he forgot about his "monster" for four hours and that brought his spirits up!
so did my mom, she was just happy to live the moment with him. I think you should talk to your kids, be honest with them, they will appreciate it later. Treat them like little adults, and don't hide it. I am so happy to hear that your daughter is in college and she should concentrate, think about how happy your husband will be when he sees her graduate!
Your older son, he's brave ... I just know it! I am 24 and I bet you we both know what it's like as we are going through the same.
PRAY! it's a great thing to do! Have family dinners (if your husband can tolerate them) plan a dinner where you make him feel comfortable, after my dad got sick, we all went on a neutropenic diet with him so he didn't feel alone. Oh and for Christmas ... tell your husband it's family time and he better not make any other plans or else he gets no present :), that's what we're doing in my house.
God Bless you and your family!!!!! just have faith.

malinnaf
Posts: 2
Joined: Jan 2010

Your post hits very close to home for me. This is my first night on this board, and right away I find someone so close to my situation. My husband was dx in Sept 09, with GEJ cancer, mets to lymph, liver, ungs, adrenal and rib. He turned 50 in Oct. Our children are 11 and 9. This has been a living nightmare. First he was dx with gall bladder and had surgery...no improvement. Then they thought he had a hiatial hernia so sent for a scope to see if it was interferring with stomach. They found a mass, not what we expected. Biopsy - adenocarcinoma - not what we wanted to hear. They "thought" it was early since they saw nothing during the gall bladder surgery. Fast decline, ends up in hospital with severe dehydration, malnutrition, liver failing. THIS hospital tests much more thoroughly, comes back with all the above mets. NOT what we wanted to hear. Started chemo on Oct 3 (taxtere, oxaliplatin and xeloda), has shown decrease in tumor markers, and then scans showed decreased size in primary tumor, lung and liver mets, adrenal mass and rib met. YAY finally good news! Now we find out, he now has 3 new spots, on the L2 and L4 vertebrae and sacral body. Just when it looked like it was turning around. Rescanning this week to see if those are growing or show any other increases. Yes, my kids know daddy is sick and has cancer, and they even know that the drs dont expect to "cure" it but they are comparing it to his diabetes, they are sure that his medicine will keep him well. They dont understand that dad may never get better, and may in fact get much muc worse. We have been together almost 21 years now, he is my best friend and companion, and all he can do now is sleep and try to eat. Absolutely heartbreaking. This is the most awful disease...stay strong as best you can, even as you have to continue your previous life, and add to that full time caregiver and, for all practical purposes, single mom. I will be praying for you and your family even as I pray for my own. We will get through this, we have no choice.

Jst4Shacaz's picture
Jst4Shacaz
Posts: 1
Joined: Feb 2010

I am sorry for what all of you are going through; he's been in the ICU for 10 days now and his family has not been very supportive, they critize me for not being with him 24 hours a day anymore. Besides a household to take care of and going to work (fortunately 20-25 hrs. a week) to pay the household bills, I have to take care of the kids (17 and 6 yr old twins), and a baby on the way. The twins cry everynight because he's not coming home from the hospital and because I'm not home to eat dinner with them and put them to bed. My 17 yr old is considering not going to college to help me out with the new baby, but I am pushing her to go to college, this is not her burden. I've expressed to his family that being by his bedside 24 hours a day, will not pay the mortgage, auto loan, food, insurance and utilities. As a result, the ICU had to restrict the visitation because his family was upsetting him by trashing me. He understands the situation I am in and I am doing the best I can. He worries about me and the kids when he dies, because he knows his family will never step in to help me. I feel sad for him; he should be focusing on fighting to get better, not stressing over the future of me and the kids. He's approx. 1 1/2 hrs. away from me, because the traffic is so bad, wish he was closer. I feel helpless, that I cannot make him better. He's lost 40 lbs. in a month, he has a breathing tube and is on a morphine drip. The doctors tell him he will die . . . he has an infection in his lungs, so until that is taken care, they will not discuss his options to treat the cancer. He's only 49 and I am not ready to let him go and it angers me that the doctors have to remind him that he will die. I know I will pull my family through this, but it is unfair that my children must suffer through this pain of losing him.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello and Welcome, so sorry to hear of your story. I am a caregiver for my dad. He survived esophageal cancer, his tumor was at the opening to his stomach. Now in December 09, he has mets to his liver. Spent 8 days in hospital with a blocked bile duct. Had to get a stent put in duct to drain it. Also had to have stent put in esophagus because scar tissue formed almost closing it off. Recovering from this surgery is still taking place. He is very weak and tired. He too has lost 30 lbs. He started taking an oral chemo xeloda for the liver cancer. This worked well last year for the esophagus cancer. This time he is having alot more side effects. The chemo that is killing the cancer is killing him as well. He only has one more day left, then a 2 week break. Then a pet scan to see what has happened to the tumors on the liver.

I am telling you my story to make you know that you are not alone. From one caregiver to another, I know what you are going through, and I am here to help you. I am around the same age as you too. I am 45.

As far as the infection in your husband's lungs, it is true that this has to be cured before any chemo treatment can be started. As far as family is concerned, I have a brother who lives in NJ which is about 8 hours from us. Since the day my dad was dx 11/4/08, he has been in denial. He will hide his head in the sand, and never want to discuss it. Thanks alot, that leaves me and my mom to do it all. He will not even discuss it with my dad, even when my dad tells him he needs to talk to him. Every family has someone who is not helpful in one way or another. God bless you and your children for doing the best job you can. God bless that little baby soon to be born. You have to learn to rejoice in all of these happy things. As hard as it is, you have to do it. Hang in there, and stay in touch. You can also chat with alot of great cancer survivors on the chat line. Come on and join us one day. I will be checking in on you and your husband!
Tina

As far as your husband's infection, it is true that he does have to recover from that before they can start any kind of chemo treatment.

kenandkat
Posts: 3
Joined: Jan 2010

Do you know what your husband's tumor levels were at dx? Ca 19-9 and CEA? My husband was dx in oct 09 and is on his 8th round of taxotere and 5fu. He has an amazing frame of mind and works daily.At dx my husband's levels were 133,000 and 667 which were very high.... and now 2100 and 1.

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