Discussion Board Forums Introductions! Close friend newly diagnosed

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  • #47575
    ilias
    Member

    sdas…i am so sorry to hear such sad news….may your friend rest in peace and be in God’s hands.

    My Condolences
    Ilias

    #47574
    sdas
    Member

    It is with a heavy heart that I am logging in. I decided to resurrect the very first thread that I started in this message board.

    My good friend Alok passed away exactly a week ago. Alok – Dr. Alok Bhandari (age 44) was Professor & Chair of the Civil & Environmental Engineering Department at Kansas State University, an outstanding person, and my very close friend.
    http://www.engg.ksu.edu/files/engg/imagecache/highlight/highlights/Bhandari.jpg

    Alok was the second person with CC to participate in this Phase II trial at the NIH: http://www.cancer.gov/clinicaltrials/search/view?cdrid=683241&version=HealthProfessional&protocolsearchid=11220695

    Tragically it did not work. His first CT scan (Nov 2012) following the NIH treatment showed that the tumor had spread extensively to his lungs and liver. Alok’s health started deteriorating rapidly shortly afterwards. He passed away last Wednesday, shortly after 12:00 PM. He suffered a great deal during his final two days.

    Sanjoy Das

    #47573
    chezwrightaol-com
    Participant

    SDas, I’m very saddened to hear this set-back, but I do want to say as others have, that there is no telling what will be down the road. When I was diagnosed, I was put in touch with some one else with CC who lives near me. He, too, was operated on only to discover that it had spread. He was given a few months…..6 YEARS ago!!! He has gone through a number of rounds of chemo…has lost his hair and regrown in…has had his share of bad days…but has been here SIX YEARS to see his children get 6 years older, to enjoy many,many good days. It is hard to get into living one day at a time and to focus on healing thoughts, but your friend sounds young, energetic and ready to move positively through this experience. We are all here for him..and for you..as you support him in this journey.
    K.

    #47572
    katja
    Member

    SDas,

    I’m so so sorry to hear your news. You will all be devastated. I always find it hard to believe that the first scan could be so wrong in this sort of case. I do think a second opinion could help, if only to back up the view of no surgery. There are people who have seen tumours shrink through chemo enough to be resected. I suppose this would depend on the extent of spread.
    You have already been a remarkable friend. Hoping that you will get some sort of game plan and a way forward soon.
    Kate

    #47571
    marions
    Moderator

    sdas…..I am so sorry to hear of the newest developments with your friend. As we have witnessed often on this site the true extent of the disease only can be determined during surgery. Scans present themselves as an invaluable diagnostic tool however, scans cannot detect nodules less than 1 cm in size (the plates itself measure 1 cm.) Please, do not give up on hope, as that and some realistic optimism will carry you far. You can count on your cheerleading squad (that’s us) to be with you all the way.
    All my best wishes,
    Marion

    #47570
    gavin
    Moderator

    Hi Sdas,

    I am glad to hear you say that you will fight and I do hope that your friend will fight this also. Yes there is hope and I wish that you and your friend do not give up hope. I know from my dads fight with CC that he got some bad news along the way, such as a result from a CT scan that we didn’t want to get or that he couldn’t try this or that treatment. And when he got such news it would knock him back a bit after he heard it and it was hard to take. But my dad bounced back and a day or two later he felt a lot better and was thinking along the lines of “okay, we can’t do that so what can we do next then”. It might not feel like it right now, but you and your friend will bounce back and then the next stage of the fightback will begin.

    Did your friends doctor talk about what type of chemo they would do, such as the Gemcitabine / Cisplatin combination? There are many types and combinations of chemo and many of the members here have shared their experiences of chemo. If you look at the chemo board or use the search function at the top of the page then you will find a ton of discussions from the members here about chemotherapy.

    You ask what is the prognosis now with chemo and this is a question that neither I or anyone else here can answer for you. We are not doctors, and can not give medical advice like that. Members here will share their experiences of chemo and what it was like, but no one can say what the prognosis is for anyone.

    One other thing I would mention to you is about the possibility of your friend seeking a second or even a third opinion. Is this something that your friend has done or would consider doing? Again I will say to you that I hope that you and your friend do not give up hope. Please keep coming back here as much as you want, even if you feel like venting, shouting or letting off some steam. We know how you feel and what you and your friend are going through, and if you have any more questions then please ask and we will all do what we can to help.

    My best wishes to you and your friend,

    Gavin

    #47569
    sdas
    Member
    Gavin wrote:
    Sdas,

    I am very sorry to hear this news about your friend. I can so understand why you want to be alone right now, but please know that if you want to come here then we will all be here for you.

    Gavin

    Hi Gavin, and thanks a lot. What is the prognosis now, with chemo? What I got off the web was gloomy, but that does not reflect the latest advancements.

    #47568
    sdas
    Member

    Thanks everyone… we’ll FIGHT it. There is always hope.

    #47567
    gavin
    Moderator

    Sdas,

    I am very sorry to hear this news about your friend. I can so understand why you want to be alone right now, but please know that if you want to come here then we will all be here for you.

    Gavin

    #47566
    lainy
    Participant

    Dear SDas, I am so very sorry about your friend. We are here when you need us. I am wishing for the best.

    #47565
    darla
    Participant

    SDas,

    I am so sorry you have gotten such disappointing news about your friend. I understand why you are feeling so badly and need to be alone, but know that we are all here to help and support if and when you are ready.

    Things change and new treatments become available. I will be hoping for the best for your friend. Take care.

    Love & Hugs,
    Darla

    #47564
    sdas
    Member

    Kate,

    Thanks and I am glad to hear that your dad is doing great. As for my friend, we just heard terrible news that the tumor has spread all over and unresectable. He went to surgery earlier this morning, but the whipple was NOT performed. He’ll be on chemo. The initial assessment based on the CT scan was inaccurate. I don’t know if I’ll be able to continue here…. We’ll try our best to handle this ordeal. We are so attached to them, they’re practically family. Right now I badly need to be alone.

    Warmly,

    SDas

    #47563
    katja
    Member

    Hi SDas,

    Glad to hear things sounds so positive in your friend’s diagnosis (whilst still remembering that your friend needs to recover from massive surgery). My dad (Malc2073) had the same diagnosis and a very successful surgery – although they did find that some lymph nodes had been infected microscopically. They can never know this until after the histological reports.

    The whipple always takes the head of the pancreas – there was apparently some research which found that bile duct resections were not as favourable as whipple (pancreaticodudenectomy). Do be prepared for a scary few days after the operation but do trust in your surgeons – ours were amazing.

    I’m sure my dad would be happy to relate the positives to your friend – when he’s not busy swimming, walking or taking my increasingly active baby off my hands.

    Kate

    #47562
    sdas
    Member

    Yes Kathy, Marion is quite correct. My friend’s CC is quite close to the pancreas and away from the liver. (Klatskin’s / Hilar is the one that is closer to the liver but still extrahepatic).

    In fact, in my friend’s whipple procedure, no part of the liver is expected to be resected (not sure about the pancreas). It is scheduled in 2 days, and hopefully we’ll all be breathing a sigh of relief.

    Warmly,

    SDas

    #47560
    marions
    Moderator

    Kathy…from what sdas is describing it appears that his friend has distal bile duct cancer. The location of the tumor dictates which surgery is performed.
    Distal bile duct cancers (those near the ampulla of Vater) are treated with a Whipple resection, which is a resection of the proximal duodenum (first portion of the small intestine), head of the pancreas, common bile duct, and gallbladder. The Whipple procedure is the same operation performed as for cancers of the head of the pancreas.
    All my best wishes,
    Marion

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