5 years post diagnosis… but bad news…

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  • #51068
    lainy
    Member

    Mary, P.S. They did take out the duodenum along with the head of the Pancreas in Teddy’s Whipple and his Gall Bladder. Everything else was re arranged. I see, said the blind man to the deaf man.

    #51067
    lainy
    Member

    Mary, thanks for clarifying. I hear duodenum and right away think it will be like Teddy’s. I understand now. Just try to stay really strong, my friend. It makes it all the more scary and tough when so much is taken out of our control. Yes, plese do keep us posted, I know you will.

    #51069
    marylloyd
    Member

    Lainy,
    By what I’ve read the duodenum is tied to the pancreas in such a way that they can’t really just take it out. They would take part of the pancreas and stomach too. I don’t know. This is all pretty new and we haven’t had much time to question things. He still would need a stent because of the stricture in his liver. That is what has been causing all of his infection issues. Tom is 63. He’s been very healthy most of the time. This past year has really taken a toll on him but I think his survival rate would be quite high because he is physically strong-at least when he isn’t battling these crazy infections and taking nasty antibiotics. He was on Augmentin which we quit right after reading Scragots post last week. Lainey, if he doesn’t have the surgery he would end up like Kris and some of the others that were unable to eat and vomiting blood etc. because his duodenum would completely close up and food could not go through. He’d have to have feeding tubes and God knows what, I can’t imagine him going through that. I would rather see him get a severe infection and go quickly then starve to death. I still hope that it really isn’t cancer but what are the odds of that. His tumor markers have been sky high for a long time and they were just waiting to see where it would pop up. Anyway, I appreciate your concern. Believe me nothing will happen too quickly. Dr. Bloomston is being very cautious. He’s been with us since day one and we really do trust him. I’ll keep in touch. Mary

    #51071
    lainy
    Member

    Hi Mary! I am so sorry to hear about Tom’s turn of events. I hope I can be honest with you. Teddy had a Whipple in the very beginning but it involved more than the duodenum. I am wondering why they would do a Whipple for that one site. Why not try radiation or cyberknife? Another puzzle is why he would have a stent once the Whipple has healed? And why would the biopsy not show anything? Something doesn’t sound right, I am sorry to say. I am not a medical person but I remember vividly what Teddy went through. The Whipple is the largest surgery to the human body. Not life threatening but huge. While we can’t ask for promises I would want to know his prognosis if he has a Whipple vs not having one. And why can’t something else be tried? I’m having a gut feeling on this, so sorry about that. I forgot, how old is Tom? Teddy never had a biopsy on the duodenum the CC always showed up only on a PET. I suggest you have a frank talk with his doctor. Best of luck, I feel your pain.

    #51070
    32coupe
    Member

    Mary,
    So sorry to hear about this latest developement. Praying that Tom can again get through this one. God bless the two of you…

    bob

    #5325
    marylloyd
    Member

    Tom is currently in the hospital again with infection problems. This is the third or fourth time in 2-3 months. They are telling him the swelling of his duodenum is probably cancer. The crazy thing is all of the tissue biopsies have come back negative. I’m not in denial but its hard to get my head around the idea that this is cancer if the biopsies are negative. Anyway the plan is to wait and see. His Dr. does not want to attempt surgery(a whipple) until his duodenum completely closes. This worries me but he’s concerned and Tom is too, about his quality of life. The whipple will cause him to have a permanent external drain, I guess, because they won’t be able to change stents anymore. Why do I feel like I am a newcomer to this whole miserable disease when we’ve been dealing with it for so long? I’m going to e-mail Dr. Jenkins and get his opinion. I trust his Docs, they do a lot of these surgeries at OSU but I think we should see what someone else says. Ha! I’m actually going to take my own advice. I’ve been telling people to get second and third opinions for years as many here have. I am really depressed….I had hoped this time would never come. I knew it probably would but he’s always been so lucky. I guess his luck has just run out!! Take care, Mary

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