new stage 4 with mets to liver

Hooker
Hooker Member Posts: 6
Hey everyone I am pretty new to the site, but have been reading yaws post since the early April. I am a 37 year old male with stage 4 EC and mets to the liver. To begin my story, in the late spring I started having pains in my chest around the sternum area. I figured it must be indigestian, so I blew it off for about a week and it got better. Well later on around June or July it came back, I figured i must be eaten to much hot foods and drinking to much beer on the weekends, and was maybe getting an ulcer. So I slowed lifestyle down a little and after a few weeks got better. After a couple of weeks it came back to the same place in my chest only hurting more and when I would swallow food and fluids of any kind or sometimes just swallowing my own spit. Did not seem to be getting any better so I decided to go to the doctor. This is now sometime in the middle of August the doc decided to treat me for ulcers. First we tried prilosic, then nexium, and this went on until the middle of December. Then he decided I needed to see a GI for an endoscopy. I had my endoscopy 1st week of January (easy), after the drugs wore off he talked to me and my wife, and told us I had a real nasty ulcer, high displesia, and a small hiatel hernia, and barrets. He also told us he had biopsied the ulcer and esophagus in a couple of spots, and would be getting back to us in a couple of weeks with the results, and to watch what I eat and drink until then. So my wife and I left not even thinking of cancer. On Mon. Jan.17th the GI called me at work and told me I had stomach cancer (devastating), so I had a cat scan on Wed. and met my oncologist on Thur. at the Derrick L. Davis Cancer Center in Winston-Salem, NC. He told me it definately looked like cancer, but wanted a pet scan to be sure. I had a pet on the next Wed. and met back with the oncologist(Dr.Thomas) on Thur. He told me it was stage 4 EC with mets to the liver(shocker). He told us how he wanted to treat it, also told us about trial options at other places, and told us if we wanted to get a 2nd opinion he could recomend several other doctors. He give us the weekend to think about it. However my wife and I did not know nothing about cancer and we both got a christian vibe off of Dr. Thomas so we decided to go with his treatment plan. On the 1st Mon. in Feb. I had a port put in the right side of my chest. On Tues. I started my chemo consisting of Taxatore, Cisplatin, and 5 days of 5FU with a constant drip. With 21 day rest periods in between, I repeated this 2 more times. Had another pet scan good news the tumors have shrunk. I then met with a surgeon(Dr.Stuart) and with a thoracic surgeon(Dr.Duncan). They told me the next step would be a trans-hiatel-esophagogectomy(thats the cut in the left side of my neck and a larger cut from my sternum to pass my belly button). They felt with my age and my good health this would be my best option, they then told me all the risks. I handled my 3 rounds of chemo like a champ the dr told me to eat what ever I want so I did. I weighed 246 before 3 rounds of chemo 266 before the surgery that I decided to have. Surgery was the morning of April 19th, lasted about 3 and half hours they took 20% of my stomach and 80% of my esophagus, removed the spot off my liver and removed 13 lympnodes the cancer in the liver and 1 of my lympnodes came back positive. On May 23rd(today) I started what I am calling cleanup chemo. It will be 3 rounds consisting of the same meds as the 1st with 21 days in between each treatment. I have already have my feeding tube removed before I found out about the cleanup chemo which I never had to use. I am however concerned about losing more weight now down to 229 pounds post surgery since I had surgery I cannot eat or drink like I did before which I knew would happen. Any advice?

Comments

  • BMGky
    BMGky Member Posts: 621
    Hope you are doing well.
    I read your post with interest. i know very little about Stage IV EC with mets. I do know that the Winston-Salem area is replete with fine medical facilities and doctors. Since you are very young for most people identified with EC, that may be the reason they chose to operate as perhaps it does give you a fighting chance. I sure hope so. So many of the posts on here that speak of Stage IV report that the doctors do not do surgery but treat only with chemotherapy and radiation. I sure am hoping that your treatment plan works. My husband was stage IIB. He had a complete Ivor Lewis procedure. He still has his port with his surgery over a year ago. His scans all report him to have no evidence of disease. His surgeon says that if the port isn't bothering him, leave it in, that it can be removed at any time, and it's there in the event a future need arises. He has it flushed about every 6 weeks. As I understand, you are receiving post operation chemo. Did you also have radiation? Please continue to post here as it will be wonderful to hear of a Stage IV having successful treatment. Eating is a challenge. My husband still hasn't gotten the hang of frequent, small meals; not mixing liquid consumption with food consumption; avoiding sweets, etc. These all can cause dumping and/or stomach/intestine pain. Mr. William Marshall has some excellent posts on eating. Hopefully, he will see your post and offer suggestions. Right now, there has been just a bunch of "newbies" on the site. We all here are glad you found this site as it can help you; yet, so sorry you had a need to find us. Let us know how it is going.
  • This comment has been removed by the Moderator
  • Hooker
    Hooker Member Posts: 6
    BMGky said:

    Hope you are doing well.
    I read your post with interest. i know very little about Stage IV EC with mets. I do know that the Winston-Salem area is replete with fine medical facilities and doctors. Since you are very young for most people identified with EC, that may be the reason they chose to operate as perhaps it does give you a fighting chance. I sure hope so. So many of the posts on here that speak of Stage IV report that the doctors do not do surgery but treat only with chemotherapy and radiation. I sure am hoping that your treatment plan works. My husband was stage IIB. He had a complete Ivor Lewis procedure. He still has his port with his surgery over a year ago. His scans all report him to have no evidence of disease. His surgeon says that if the port isn't bothering him, leave it in, that it can be removed at any time, and it's there in the event a future need arises. He has it flushed about every 6 weeks. As I understand, you are receiving post operation chemo. Did you also have radiation? Please continue to post here as it will be wonderful to hear of a Stage IV having successful treatment. Eating is a challenge. My husband still hasn't gotten the hang of frequent, small meals; not mixing liquid consumption with food consumption; avoiding sweets, etc. These all can cause dumping and/or stomach/intestine pain. Mr. William Marshall has some excellent posts on eating. Hopefully, he will see your post and offer suggestions. Right now, there has been just a bunch of "newbies" on the site. We all here are glad you found this site as it can help you; yet, so sorry you had a need to find us. Let us know how it is going.

    to BMGky
    I am doin somewhat ok today, little naus and dir. Thanks for the info on the port my wife and I were just talking to eachother wondering how long they would leave it in after last round of chemo. I thankfully have had no radiation to date and hope that I do not. Just from my on lil experiance if your husband can drop all sugar from his diet it should help with the dumping, also look into diabetic options. Met with a nutritionast yest. She told me to try alternating solid food meals with liquid meals I hope this helps me and maybe yours to. I guess because of the surgery I am just goin to feel worst I went and had fluids today and scheduled more for tomorrow. Stomach feels bad but still able to eat lil right now. Thank you for repling to my post , will be praying for you and husband.
  • Hooker
    Hooker Member Posts: 6
    unknown said:

    This comment has been removed by the Moderator

    Hi Sherri
    I am hoping the surgery was to cure if not a long time remission. As far as the insurance goes its blue cross blue shield and to my knowledge they have not turned me down for anything yet. No therasperes for the liver, but they think they cut it all out during surgery I guess only scans will show. Thanks for the food tips.
  • Callaloo
    Callaloo Member Posts: 135
    Best wishes for a fast and full recovery
    I also read your post over several times to make sure I got the facts. I also re-read the NCCN treatment guidelines for esophageal cancer to see if I missed something, and I'm intrigued by your case. It sounds like you received very aggressive and unconventional treatment. I certainly wish the best for you.

    I also wish you could ask your doctors and share with us what made them recommend surgery in your case and if it was in fact performed with curative intent. It would help other stage IVs to know what new ideas are floating out there, perhaps provide us with some reasons to challenge the conventional wisdom.

    Currently, the treatment guidelines do not recommend surgery for any stage IV patients and, explicitly, when there are mets to the liver. The only mention of surgery for stage IV is palliation or "salvage" surgery, when the primary gastric tumor needs to be removed and radiation is not an option. So please tell us more if you can, and, in any event, keep us advised generally. I imagine a lot of people will be following your posts with great interest. Me included.

    Lu