My Introduction

Discussion Board Forums Introductions! My Introduction

Viewing 15 posts - 271 through 285 (of 405 total)
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  • #80281
    iowagirl
    Member

    Hang in there, Dude……thinking of you.

    #80280
    mbachini
    Moderator

    Matt,
    Praying that the PET has absolutely nothing to light up! You are doing a great job seeking all the options out there. I am sorry that surgery isn’t an option and that you are forced to do chemo before trials. Jumping through the hoops can be so frustrating. I did Gem/Cis for 6 months, Gem alone for awhile and then Taxotere for several months. My hope for you is that after 3 months of chemo, you will have a quick surgery (NO WHIPPLE) and be free of this burden forever!!! Please know that you are in my daily prayers…hugs.
    Melinda

    #80279
    marions
    Moderator

    Matt….you answered a questions many of us ask: why not remove the tumor? However; as Dr. Pawlick explained, the disease is metastatic and removing this one tumor may not prevent other tumors from developing. And then what? You are feeling good and have a good plan on hand. That’s great.
    Hugs,
    Marion

    #80278
    mattreidy
    Participant

    I saw Dr Pawlik at Johns Hopkins today and asked for his opinion about just going in and cutting out my new small 1.2 x 1.2 x 0.2 tumor.

    He was in agreement with my surgeon at the Mayo clinic that I should first try chemotherapy to see if the existing tumor will respond but more importantly to see if more tumors appear or not over the next 3 months or so. If I respond well to chemotherapy AND there isn’t more metastatic spread then both he and my Mayo surgeon are agreeable to respecting this new tumor.

    I’m not surprised by his recommendation. As he said, surgery wouldn’t be the first card out of his deck for me given the circumstances. He did indicate that it is unfortunate and not a good sign that the cholangiocarcinoma recurred as quickly after my last surgery as it did.

    The new tumor isn’t impacting my health so it’s not urgent to get it out.

    I have a PET scan in Richmond on Thursday to check for additional tumors and will meet with local oncologists next week to start the ball rolling on chemotherapy. I will have the chemotherapy locally.

    If this route proves ineffective then I can enroll in clinical trials for more innovative but risky treatments.

    #80277
    kvolland
    Participant

    Yes, you can technically live without your liver but again yes, enzymes and insulin for the rest of your life. They actually try really hard to do do a pancreas transplant if they can….eventually if they can. Also sometimes if they do a Whipple for pancreatic cancer especially they will have to do insulin and enzymes too.

    KrisV

    #80276
    iowagirl
    Member

    Didn’t know that either. Totally remarkable!

    #80275
    pfox2100
    Member

    I never knew that! Good to know!

    #80274
    lainy
    Participant

    Porter, no question is stupid! I found this article and it is amazing!!! At John Hopkins they have a Pancreatic Clinic. You will find this article unbelievable!!!!

    http://abcnews.go.com/Health/woman-chronic-pancreatitis-pancreas-removed-insulin-liver/story?id=18366874

    #80273
    mattreidy
    Participant

    My understanding is that it is possible however, you’d need to take enzymes and insulin for the rest of your life.

    pfox2100 wrote:
    Can they remove an entire pancreas? Can one live without one? Sorry, I feel like these are dumb questions but these questions came to my mind say if one had pancreatic cancer or mets in their pancreas, can the whole thing come out? I was under the impression all of a pancreas could not be removed.
    #80272
    pfox2100
    Member

    Can they remove an entire pancreas? Can one live without one? Sorry, I feel like these are dumb questions but these questions came to my mind say if one had pancreatic cancer or mets in their pancreas, can the whole thing come out? I was under the impression all of a pancreas could not be removed.

    #80271
    lainy
    Participant

    Porter, they only removed the head of the Pancreas and that was to see if the Pancreas had CC in it.
    BTW, the stupidest (not sure that is a word) things can happen. When the Surgeon went in on the 1st Whipple and he got to the Pancreas, he had to stop. It was a 4 hour surgery to that point. He came out and said I have not so good news and I had good news. My first thought was that I didn’t hear the word bad. Turns out the dye from the Endo leaked and totally made mush out of the Pancreas and the surgeon needed a healthy Pancreas to cut. So that is why it was aborted and done over 3 weeks later.

    #80270
    pfox2100
    Member

    All of a pancreas can be removed? I have never heard that before. That is good to know! Lainy, I liked your response. Well said!
    Porter

    #80269
    mattreidy
    Participant

    That’s great to know Lainy – thank you!

    #80268
    lainy
    Participant

    Matt, my Teddy had an aborted Whipple and 3 weeks later the real deal. They removed the Duodenum, the head only of the Pancreas, the gall bladder and did a little rearranging. He had clear margins. Never had chemo as they said where the CC was located it would not help. Now that was 9 years ago and a lot has improved. Yes, it is true that the Whipple is the biggest surgery to the body but NOT life threatening, whereas Heart Surgery can be life threatening. I remember his Surgeon appearing after 8 hours and saying, “Stick me with a fork I am done”. Then the wonderful words “all clear”. The next day he was sitting up and the 3rd day walking. Yes, it takes some time to heal and there are possibilities of bumps in the road but always fixed and in the end it bought him 5 years. There were not life changing issues. He still went back to work, he golfed and what I noticed was that his eating habits changed. Like, he was a chocoholic and never wanted it again. Too sweet. He loved his glass of wine at night and lost the taste for that. Again, no regrets and would not have done anything different. In fact when he had his, there was only a handful of Surgeons doing it.
    My thoughts are to not make any decision until the whole jury is in and then put together what all the pros say and make your decision. I just wanted to tell you that it may not be a walk in the park but we didn’t consider it a nightmare either. Best of luck on your appointment.

    #80267
    mattreidy
    Participant

    The Whipple procedure involves removal of part of the stomach, gall bladder (mine is already gone), part or all of the pancreas, as well as the common bile duct.

    There’s a good set of videos and other information at http://www.whipplewarriors.org/the-whipple

    Lots of risk of leaks and infection as well as digestive and insulin related issues post-surgery with that procedure. They rank the complexity right up there with a heart transplant.

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