Skip to content

5 years post diagnosis… but bad news…

Discussion Board Forums General Discussion 5 years post diagnosis… but bad news…

Viewing 15 posts - 31 through 45 (of 81 total)
  • Author
    Posts
  • #51111
    marylloyd
    Member

    Marlene,
    I too am sorry your husband is having such a hard time. I would also recommend getting a second opinion. Metal stents are permanent as Lainey indicated. I’ve never heard of them being removed. I agree with Lainey that things sound kind of strange. We’ve both been involved with this disease for a long time and are experienced with dealing with difficult situations and Drs. I hope you get some answers soon.
    My Tom is doing much better right now. It will be 2 weeks on Weds since he was hospitalized and I had to drive to Columbus! It’s been wonderful. His color is better and he is gaining back some weight. Also the swelling in his abdomen has really improved, which is good news. He has to have his esophagus scoped on Weds in Canton, then is getting a chemo treatment on Monday in Columbus. We’re just hoping it doesn’t wipe his blood count out. I think the infection and chemo together were the culprits last time but the infection is gone now so hopefully he tolerates things a little better. Thanks Lainey for your kind words!! You are a great help to so many on here. Take care, Mary

    #51110
    lainy
    Member

    Hello Marlene and welcome to our wonderful family where you will find the most courageous and caring people from all over the world. I am sorry to hear what a rocky journey your husband has had and I have a few questions for you.
    Where is he being treated? Have you ever gone for another opinion? Some things sound very strange. I have never heard of the portal vein not showing up.
    Guess anything is possible. Also why did they say the metal stent was temporary? It is more permanent than the plastic ones. Have you notified the ONC of his weight loss? There are so many shakes and special meds out there for upping ones appetite. My husband loved the Carnation Breakfast and I would blend the vanilla one with a banana. The shakes take the place of a whole meal. Hoping your husband takes a good turn here and please keep us updated on his progress. Oh, I would suggest you repost under Introductions as I am afraid your 1st post may get lost on this very long thread.

    #51109

    My husband had a diagnosis of cholangiocarcinoma (bile duct cancer) in June of 2008. He had the chemo and radiation treatments and they almost killed him. He has had the bags (2) outside his body draining his bile duct. We were told the radiation damaged the bile duct; it also damaged his portal vein which now does not showup on an mri or pet scan. The bags were removed and metal stints were placed in his bile duct. He has removed milk products from his diet to avoid blockage of the bile duct. We were told the metal stints are temporary. His last pet scan showed no sign of cancer. He was told by his oncologist that he is malnourished. I should mention that 30 days ago my husband had a hernia repaired. However, he is not gaining any weight; in fact, he has within the last month lost 10 pounds. We are very concerned. If anyone has had any experience with this kind of thing, please let me know what you did to gain your weight back.

    #51108
    lainy
    Member

    Dearest Mary and Tom, I am so sorry that Tom is going through all of this! Teddy’s infections occured the same way and his CC had returned to his Duodenum as well. I think I have mentioned in the past the Tom and Teddy were following the same paths. Teddy’s CC also never went to his liver.
    Without ever meeting you I could tell you were the kind of people that 100 Pumpkin pickers would show up for, how wonderful is that? In case you never guessed, I also am a control person, never letting anyone do anything for me. When we got Teddy’s final prognosis a year ago June all of a sudden we were being taken out to dinner like 4 times a week for about 6 weeks. I realized that it was our friends way to doing something. So, I learned to just go with the flow. I hope you both have a little quiet time now and just like Cinderella the pumpkins are gone but you still have your Prince!

    #51107
    marylloyd
    Member

    Hi friends,
    I feel like I need to write a book about the past few weeks but I don’t have time and I am lousy at typing! I will keep it short and sweet. He had his biopsy on Thurs. Sept !. Friday night in the middle of the night he woke me up because he was vomiting blood. I rushed him to our local hospital where they admitted him to the ICU. He was bleeding from his esophageal varices so they banded them, gave him a buch of blood and watched him for a day or so. He started getting very confused and agitated which they blamed on ICU psychosis but after he went to a regular room and continued to get worse they found his ammonia levels were high. They treated him for that with lactulose, a laxative, and he got better quickly and came home on Thurs, the 7th. He was doing pretty well so we went down to see about starting the clinical trial on Tues the 12th but his biopsy came back inconclusive so he didn’t qualify and started chemo instead. ( His recurrence is around his duodenum not in his liver, he has lesions in his liver but obviously they aren’t cancer). He felt lousy on Weds, went to a followup appt with his Doc that fixed the varices locally, came home and crashed on the couch. I checked his temp about an hour later because he was freezing and it was 103.8. I rushed him to Columbus and they found he was septic with bacteria in his blood and bile. They changed his bili drain and started IV antibiotics, almost admitted him to the ICU there because his blood pressure was so low but that got better. Now his blood counts are very low so they are talking about him being there for another week! People ask me how I am and I just say I am along for the ride. I feel like our lives are completely out of our control. I just have to go along with the flow and that drives me crazy because I tend to be a bit of a control freak! Lately we have had a ton of people offering to help in any way, I’ve always been reluctant to accept but I accept gladly right now. Things are pretty overwhelming. Last Sat on a beautiful Sept. afternoon almost a hundred people came and helped pick our pumpkins for us. We were in Columbus and our daughter called us in tears when she saw how many had shown up. We cried too. We have the best friends and neighbors in the world!! I hope everyone is hanging in there. That’s all we can do. Take care and thanks again for the love and support on this blog. Mary

    #51062
    gavin
    Moderator

    Hi Mary,

    Thank you so much for letting us know how Tom is doing. And I am happy to hear that he is feeling better these last few days. And also happy to hear that his fluid problems have been helped and that his appetite has improved also. I will keep my fingers crossed that this continues. I will also keep everything crossed for you and Tom and I so hope that he will be able to take part in this trial. Please let us know how this goes and remember that we are all here for you.

    Hugs,

    Gavin

    #51106
    nancy246
    Member

    Hi Mary and Tom, So glad things are going much better for the both of you! I hope Tom gets in that trial. Sounds very interesting! Hugs. Nancy

    #51105
    jladams
    Member

    Dear Mary,
    I have been following your posts. It is great that your husband is feeling better. I hope he qualifies for the study. Sincerely, Johanna

    #51104
    lainy
    Member

    Hi Mary and Tom, I am so very happy to hear of the improvement Tom has had. I will cross everything I own including my eye in hopes that Tom get the trial. You are so very lucky to have such wonderful doctors and of course your attitudes help as well, immensely. I know you will keep us posted and just wish I could reach right out and hug you both!

    #51103
    marylloyd
    Member

    Hi friends,
    I can’t believe it’s been so long since posting. We’re still hanging in there! Tom has actually been feeling much better the past 10 days or so. His fluid problems have been solved with stenting and medication. His appetite has improved, but he has lost enough weight that he looks gaunt. He’s on a steroid that helps the nausea and obviously helps his appetite. I give the Docs a lot of credit here. They jumped right in and handled all of his crisis situations, some preemptively and he is doing pretty well considering all he has been through. The news is now that we are back at the hospital for him to have a biopsy done so that he can be part of a clinical trial that OSU and MD Anderson are doing jointly. It is a drug called MK-2206. This is the second phase of the study. If he qualifies then he will start on Sept. 13th. The results of the first phase are posted on line. You can just plug in MK-2206 and it should come up. I actually haven’t read it myself! It is a targeted therapy that affects the protein of the cancer cells and stops their growth and hopefully will result in remission. I hope all goes well so that hecan take part. They have to get the results of this biopsy and he has to have bloodwork next Tues and if all is well then he will be on it. I have to go so I’ll keep in touch, Love Mary

    #51102
    marions
    Moderator

    Mary….I am so thrilled to hear from you. My fingers are crossed for the stents to reduce the swelling so that Tom will be less grouchy. Nothing is easy about this disease; watching unattended things piling up certainly can flair up the tempers.
    I am sending all my best wishes for continued improvement.
    Hugs
    Marion

    #51101
    lainy
    Member

    Hi Mary. Well on the whole it is good news and especially that Tom is improving.
    I don’t think it is necessary at all to apologize to anyone for being out of sorts. Neither you nor Tom need to do that. Anyway sometimes it’s just good to let it hang out! I mean what the heck, can’t you guys take a little pressure???? Just kidding, you know. I tried so hard not to loose my patience with Teddy as after I would feel so guilty. But sometimes that good old car ride was great to let it rip. Keep the good news coming, we love it!

    #51100
    marylloyd
    Member

    Hi Friends,
    Today is Tom’s third day home after a lot of “repairs” done on him in the hospital. He feels that he has been tuned up and is ready for another few thousand miles! He had a stent placed in his vena cava. It was being depressed by the duodenal swelling and that was causing the fluid buildup in his legs and belly. That is improving every day so it’s obviously working. He had a stent placed in his duodenum to keep that open so he can eat, although like everyone else he doesn’t care about food. His diet is restricted too so there are things that he wants that he can’t have. He had a new external drain placed in his liver so that is still uncomfortable but seems to be getting better every day too. All in all he is improving, he’s getting grouchy so thats a good sign. He’s frustrated because he sees so much that needs to be done and he can’t do it. He expects everyone to get at things and we all have a different schedule and different priorities. I had to tell him to give me a break the other night. I was exhausted from all of my “chores” and he was getting a little irritated about something and I had enough. I try to be patient and not get irritated myself but like I told him I can’t help what’s happening to him. If I could do something about it I would in a heartbeat but I can’t. We’re just all doing the best we can with the cards we’ve been dealt! He’s always been a great patient and I don’t blame him for getting grouchy. I would be a real pain if it was me! Anyway, I appreciate everyone’s thoughts and prayers and support. I feel a little better about things since he has stabilized but I know we have a tough road ahead. Hopefully he’ll be able to start chemo in about ten days or so. His bloodwork has been good, they’re mainly worried about the swelling in his feet and legs and that is getting better. Thanks again, I’ll stay in touch. Love, Mary

    #51099
    marions
    Moderator

    Mary….we have been in this club together for many years now and Tom has continued to surprise us many times over. I so much wish for him to be able to do it again therefore, the stents “just have to work” in order to give him some comfort.
    Although, the most painful time imaginable, it also is the most precious time as it allows us to focus on each other with extraordinary intensity. Take in, dear Mary. It will give you the strength needed for the time to come.
    All my love,
    Marion

    #51098
    nancy246
    Member

    Mary, We are here for you and Tom. Doug and I have been together 35 years and married over 33 and I have a very hard time imagining life without him. I know I will survive but I am scared of the grief and loneliness. He too is my best friend and soulmate. I will rely on my friends on this board to help me through when the time comes because I know they will understand.
    I am sending positive thoughts that they will be successful with the stents and Tom will be feeling better and you two can go home to enjoy time together. ( Hoping your heat wave cools off as well!) Hugs. Nancy

Viewing 15 posts - 31 through 45 (of 81 total)
  • You must be logged in to reply to this topic.
©2020 - All Rights Reserved, Cholangiocarcinoma Foundation
Scroll To Top