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Thread: Worried about Husband

  1. #11
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    IndyLou- I love the idea for the notebook and am going to start one today. Thank you for the suggestion.

    JohnR- Thanks for the reminder to take care of myself.

    ddessert- That is great info I will be sure to bring up when he has his appointment. We should hopefully hear something today about when that will be.

  2. #12
    Super Moderator Top User ddessert's Avatar
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    Perhaps a bit late, but today's Twitter #PancChat is on Twitter in 5 minutes where the topic is pancreatic cysts.
    I will try to ask some relevant questions on your behalf and post a link to a summary of the entire chat. There will be experts (doctors/surgeons) on the chat to discuss cysts and what to do about them.
    I am @pancanology
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  3. #13
    I started a notebook the day we found out and it helped. Don’t forget to date your entries. Keeping notes is so helpful and helps you ask questions you may have forgotten to ask. I would refer to my notes the night before every visit and write my questions down.
    His fight is over. How brave he was. 47 years of love.

  4. #14
    Super Moderator Top User ddessert's Avatar
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    I was a little rough on them. I think I might've been the only patient, too. They just get talking amongst themselves in their own language. The summary link should be up there tomorrow.

    Next month's topic is the rarer subtype of pancreatic pNET cancers. Not too relevant for this forum, but I still try to stay informed for the few that come here.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  5. #15
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    Aug 2019
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    ddessert- Thank you for letting me know about the twitter chats. I've never been on twitter, but I will see about signing up so that I can see them.

    Marian333- Thank you for suggesting that I date entries. That is an excellent idea!


    We are currently still trying to get his biopsy scheduled. They gave a referral for someone who doesn't do them! I'm trying to get him into MD Anderson here where we live. It's an offshoot location from the main one in Texas. I'm really trying to be patient but it is so hard. I'm the one all the scheduling and everything is falling on and I'm just getting a little overwhelmed.

    I really appreciate all of your suggestions and support and wish all of you the very best.

  6. #16
    Super Moderator Top User ddessert's Avatar
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    Here is the link to the chat on pancreatic cysts:
    https://wakelet.com/wake/92e1db71-94...4-5afb399b8223
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  7. #17
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    Aug 2019
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    6
    Just an update. My husband finally has his biopsy scheduled for later this week and then we will have to wait two weeks to meet with his doctor to get the results. By that time it will have been 3 months since he first got sick. My whole family really can't believe how long this is taking when it seems so urgent. Anyway, that is where things stand right now, no real answers yet.

    Thanks again for all of your helpful info given above. I made that notebook and it has already come in handy since we all know where the paperwork/phone numbers are etc, and I had a place to write my notes at his pre-biopsy appointment.

 

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