My Introduction

Discussion Board Forums Introductions! My Introduction

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  • #80266
    pfox2100
    Member

    Just for clarification, what is the difference between a Whipple or resection?

    #80265
    mattreidy
    Participant

    Yep – your thoughts echo mine… why knock me down with chemo first? A brief call with my soon to be local Oncologist made me start to agree with them.

    If I were to need a Whipple, that’s major, life-altering stuff. So why subject myself to that if the cancer is just going to keep spreading? Recovery from that surgery would take months and I’d be unable to have chemo during that time, so then I’d be even worse off.

    Best case scenario now which I am hoping for is:

    1) The PET shows no other spread
    2) I can find a surgical oncologist willing to cut out the new little tumor WITHOUT a Whipple
    3) I do adjuvant chemo and keep it from coming back

    The more-likely scenario is:

    1) There may be spread elsewhere
    2) I do chemo for a while
    3) I do my best to get into a trial, perhaps joining Melinda’s success with NIH NCT01174121.

    It’s no fun being back on the roller coaster…!

    #80264
    pfox2100
    Member

    well I am somewhat disappointed that they are just going off assumption and not known facts at this point. Are they going to wait and see what you PET says? What if there is no spread, would they still want you to do the chemo and then take out? And if that’s the case why can’t they take out if it could come out now and then do adjuvant chemo? I am sure these are all questions that you most likely have asked already. I am hopeful for you and I am not assuming the worst! I am the worst at staying positive for myself, but great at offering support and being optimistic and positive for others! You will be in my prayers. Take care.
    Porter

    #80263
    mattreidy
    Participant

    Hi Porter – basically, yes. Mayo is assuming the worst.

    I’m starting to see the logic. It makes sense to try Gem/Cis and see if that prevents growth and spread for 2-3 months, then if it has, look into resection. Based on where this new tumor is they think it might require a Whipple to remove it and that’s not a minor procedure…

    Thanks for the note!

    -Matt

    #80262
    pfox2100
    Member

    Hi Matt I wish you luck on your next week appointments. Is Mayo just assuming that this has spread and that is why they won’t currently operate? And this is just based on an assumption rather than tests/images? I wish nothing but the best for you and please keep up posted on your latest updates. Blessings and take care.
    Porter

    #80261
    mattreidy
    Participant

    Catherine,

    Thanks for note – I’ll be driving up Monday morning. The appointment isn’t until Noon on Monday so I’ll be fine, even with traffic. I won’t be staying over this time but will keep your hotel tip handy!

    I appreciate the thoughts and tips very much!

    -Matt

    middlesister1 wrote:
    Matt. Not sure if you’re driving up Sunday or Monday. Traffic can be bad around dc and baltimore. I know the holiday inn near univ of md offers low rates(98) for patients. If you’re staying in Baltimore I would check with hopkins on hotel partnerships.

    Thinking of you
    Catherine

    #80260
    middlesister1
    Moderator

    Matt. Not sure if you’re driving up Sunday or Monday. Traffic can be bad around dc and baltimore. I know the holiday inn near univ of md offers low rates(98) for patients. If you’re staying in Baltimore I would check with hopkins on hotel partnerships.

    Thinking of you
    Catherine

    #80259
    mattreidy
    Participant

    Here’s a little update on my journey.

    I’ve got an appointment with Dr. Pawlick at Hopkins next Monday to get his opinion on resecting the new tumor.

    I’m being scheduled for a PET scan here at VCU/MCV next week to determine if there are other tumors or just the one.

    Mayo will consider resection, but only after I go on chemo for 2-3 months first.

    #80258
    darla
    Participant

    Matt,

    I too am sorry you are dealing with this. Don’t have much to add to all the good advice you have already gotten, but want you to know that I too am thinking of you and hoping for the best for you. Please let us know how things are going when you can.

    Darla

    #80257
    mattreidy
    Participant

    The only evidence of spread is this new small tumor, however, I have only had an abdominal scan recently, no full chest or elsewhere.

    DukeNukem wrote:
    Is there any evidence from a CT scan that supports the spread of cancer?

    There are people who have had multiple resections and are doing fine. I’ve never been satisfied with, “well, it might make things worse” argument. But I can’t find an oncologist either locally or at Mayo who agrees with me. Maybe it’s a good thing I went into nuclear engineering (reactors are easy to understand and control) instead of medicine. Besides, I hate the sight of blood – just like Dr. Martin.

    Duke

    #80256
    dukenukem
    Member

    Is there any evidence from a CT scan that supports the spread of cancer?

    There are people who have had multiple resections and are doing fine. I’ve never been satisfied with, “well, it might make things worse” argument. But I can’t find an oncologist either locally or at Mayo who agrees with me. Maybe it’s a good thing I went into nuclear engineering (reactors are easy to understand and control) instead of medicine. Besides, I hate the sight of blood – just like Dr. Martin.

    Duke

    #80255
    mattreidy
    Participant

    Mayo’s logic for not operating to take out the new (small?) 1.2cm x 1.2cm x 0.2cm tumor is that the cancer must have spread so I should start a systemic treatment ASAP. Taking time to do surgery and recover would delay the chemo and I’d end up right back where I started.

    I don’t like that line of thought.

    Maybe it hasn’t spread, maybe it won’t if they remove this one bit, who can know…

    I’ve got appointments with a GI doc, oncologist, and surgical oncologist locally in Richmond, VA at the VCU/MCV Massey Cancer center in the next two weeks.

    I’m also going to reach out to Dr. Pawlick at Hopkins for another opinion on the surgical side.

    Make sense? What else can/should I be doing while I feel perfectly normal?

    #80254
    pfox2100
    Member

    Matt I’m sorry to hear about your news. I know another woman who I met online who also had what was considered a successful surgery and she too just found a reccuence and it was in her abdominal cavity as well. Seems like this is a common area for cc to met to or recurr? I agree with Kris, if your gonna do chemo a port is definitely the way to go. As u might recall I was on gem cis prior to surgery and tolerated it well with minimal side effects. After surgery I was put on Gemox and along with the cold sensitivity like Kris mentioned , I didn’t tolerate that regimen as we’ll and had more side effects and it dropped my platelets more frequent than the gem cis. Did you mention why they are saying it is not operable? Please keep us posted , many blessings and prayers to you Matt.
    Porter

    #80253
    dukenukem
    Member

    My surgeon placed the port perfectly. Have not had an issue with starting the infusion. One nurse said it helps if I turn my head away and lift it – seems to help getting things going.

    Even before the port, the steroid kept me wired all night. Tonight seems to be no exception. I frequently don’t get to bed until 4:00 – 7:00 am. A big hit on a work schedule. I’m retired now but was on full disability once CCA was diagnosed. I did a little work, maybe 10-15 hours a week, mostly from home on a special project. Kept my mind active.

    Anti-nausea drug is administered during my infusion – works for me just fine.

    Julie’s right about co-workers who “tough it out” and come to work when they are sick. More than once I’ve seen it literally work it’s way around an area, jumping from cube to cube. Yeah, I was part of that chain. Did I go to work? Yeah. Do as I say, not as I do. Your immune system is weak. Don’t take chances.

    Ginger ale is right up there with chicken soup. Has to be at room temp and flat for best results.

    Keep fighting Matt.

    Duke

    If your appetite drops, you need to graze. Small “meals” more often. Keep your weight up. I make up hot chocolate using breakfast protein powders.

    Sennakot-S can be your best friend. I now use the generic version from WalMart.

    Crackers with peanut butter – yes!

    I started on gem/cis but stopped after one round. Onc was afraid of side effects. Went to carbo/gem.

    If you get tired at work, talk with your supervisor (and people you work with – as a manager you probably have an office with a door. Tell them when the door is closed, don’t interrupt – they will understand.) and explain the facts of life. You are doing your best. Maybe agree to a longer work day or work from home (Should be easy to do – managers always have paperwork to do.) to make up the “lost time” while you need to rest. There has to be a way to make this work for both of you.

    #80252
    mattreidy
    Participant

    Thanks for all the info and support so far – keep it coming please…!

    Does anyone have any tips for finding a doctor/surgeon who might be willing to resect my new tumor?

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