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  • Some Folks may be moving in

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    Old 12-16-2019, 10:09 AM   #1
    RamblinWreck
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    Some Folks may be moving in

    Hello:

    I had been on the Pancreatic Section of the cancer forums, but that forum is now closing:

    https://www.cancerforums.net/threads/57818-The-Cancer-Forums-is-shutting-down-(31-Dec-2019)

    So, you may be seeing bunch of new comers such as myself.

    RW

     
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    Old 12-17-2019, 11:49 AM   #2
    plasticbricks
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    Re: Some Folks may be moving in

    Glad you made it over, RW! I just joined. Couldn't get my old username (legodude) so this will have to do.

    Hope the others make it over here too.

     
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    Old 12-18-2019, 07:27 PM   #3
    ddessert
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    Re: Some Folks may be moving in

    Here too, for now. Would really like to see the pancreatic/liver cancer forums have their own as there is very little in common between the two, other than location inside the abdomen.

     
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    Old 12-31-2019, 04:22 PM   #4
    Jamiepat
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    Re: Some Folks may be moving in

    I'm here as well, for now. If someone gets together a new board with signatures, let me know!

     
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    Old 01-08-2020, 03:49 PM   #5
    susanmac1
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    Re: Some Folks may be moving in

    I am here too! SO glad to see you all here!

    How about that PC news? Olarparib is approved for PC, for brca mutations and stable tumors. I have AtM but hope this get me closer to getting in on it!!

    Patty how are you, I think of of you often.

     
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    Old 01-08-2020, 09:22 PM   #6
    Jamiepat
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    Re: Some Folks may be moving in

    Quote:
    Originally Posted by susanmac1 View Post
    I am here too! SO glad to see you all here!

    How about that PC news? Olarparib is approved for PC, for brca mutations and stable tumors. I have AtM but hope this get me closer to getting in on it!!

    Patty how are you, I think of of you often.
    Susanmac! How wonderful - thought I would never hear from you again! I've joined several other boards looking at their usefullness. Nothing matches our old board including this one. Wish they would listen to us about the signatures, etc.
    I am taking olaparib for a few weeks now! My platelets bottomed out at 50 before the IRE and have only come up to 69 as of this monday! I couldn't take chemo without further endangering the platelets so here I am on this cool new drug. Cool because I have no side effects and apparently it's somewhat kind to my platelets as they have increased a bit while on this. just hope it works.......I'll know soon. You need to try! I just read an account (think it was published by John's hopkins) that described an atm patient who was having good success with it. Non brecca, just atm. You will love it. The inflamation in my stomach has healed and it doesn't hurt to eat. This was caused by the chemo by the way and actually was healing while the rest of my insides were recovering from the ire since I had to break from the chemo for surgery. Anyway, push your Dr to advocate for you - you deserve it!

     
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    Old 01-09-2020, 10:08 AM   #7
    plasticbricks
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    Re: Some Folks may be moving in

    I saw the news about Olarparib when I was waiting to see my oncologist. I asked her about it, and she said it's a no-go for me.

    I don't have any BRCA mutations, but I do have ATM. However, it's somatic (not germline) so she doesn't think it would do me any good at this point.

    I'm not sure I believe that. I'd like to get more info about it, especially regarding the studies and work done at U.Penn by Dr. Reiss-Binder. I live in Houston, and I'm not a patient anywhere else outside of Houston, so I have no idea of where to start.
    __________________
    best regards, TJ
    April '19: diagnosed Stage 4 PC (mets to liver)
    starting CA 19-9: 489000
    May - Aug: FOLFIRINOX
    Sep - present: FOLFIRI (b/c of neuropathy)
    scans have shown shrinking tumors
    current CA 19-9: 9889

     
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    Old 01-09-2020, 04:34 PM   #8
    ddessert
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    Re: Some Folks may be moving in

    plasticbricks,

    Not sure if you can get into MD Anderson, but Dr. Varadhachari was my oncologist there. In 2011, she allowed me to try the non-standard Gemzar/Cisplatin combination treatment based off of a single paper that reported an outstanding response in BRCA2/PanCan. That was pretty razor-thin evidence at the time.

    I think there's more current evidence for PARPi+ATM than we had in 2011 behind BRCA2+Platinum.

    I've spoken with Dr. Reiss-Binder on a few occasions and she has always welcomed patients to have their oncologist consult with her for ideas and recommendations. She has told me that she would make sure any patients that needed PARPi would get it with or without a clinical trial. I have not tested her on that yet...

    While Dr. Varadhachari should also be up on the latest research. If you do see her, drop my name and tell her I'm still around. She had mostly given up on me when I first arrived so reminding her that sometimes leaps of faith do pay off could be a good thing.

    David

    PS - I have the signature line working. Just not visible on the mobile site.
    __________________
    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
    Aug 2012 - Downgraded to stage IIA
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

     
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    Old 01-09-2020, 05:09 PM   #9
    RamblinWreck
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    Re: Some Folks may be moving in

    Folks:

    I pm'ed the admin today. You should be able to have up to 12 lines in your signature now. I would like more, but this is a good start. Prior to today, I couldn't get more than 4 lines in my signature.
    __________________
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-15-19 - Urgent Care says "BS" on "Miralax"
    7-19-19 - Abd CT Scan reveals pancreatic mass
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced ~ 40%
    10-4-19 - Onc suggests chemo chng bec CA19-9 obtained at 1st & 2nd treatments is high. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

     
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    Old 01-10-2020, 04:10 PM   #10
    Jamiepat
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    Re: Some Folks may be moving in

    Plasticbricks - You should pursue the lynparza route if you need to. I can't find the article that I was telling Susanmac about, but it was a man who had been treated with an atm somatic mutation. Article expressed surprise that a somatic mutation would be responsive, but really, why not? i think that they have not thoroughly explored every sub group of pancreatic cancer for response. Including me - no applicable mutation, may not have responded to platinum drugs, am on only 1/2 dose. Last ca19 showed a slight decrease although I am still recovering from ire surgery so the picture will be muddled for awhile.

     
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    Old 01-13-2020, 06:52 AM   #11
    plasticbricks
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    Re: Some Folks may be moving in

    Quote:
    Originally Posted by ddessert View Post
    plasticbricks,
    Not sure if you can get into MD Anderson, but Dr. Varadhachari was my oncologist there. In 2011, she allowed me to try the non-standard Gemzar/Cisplatin combination treatment based off of a single paper that reported an outstanding response in BRCA2/PanCan. That was pretty razor-thin evidence at the time....
    Yes, I'm plugged into MD Anderson, but only for getting second opinions. My regular oncologist (not at MDA) suggested doing this because she's a general oncologist and not specialized in GI cancers and there's no one else at her practice that is.

    I had a choice between Varadhachari and Wolff. I chose the latter.

    I will see Wolff later this month, and I will question him about PARP inhibitors. I'll also suggest that he talks to the dr. at U.Penn.

    Thanks for the advice, David! You are always very helpful.

    Quote:
    Originally Posted by Jamiepat View Post
    Plasticbricks - You should pursue the lynparza route if you need to. I can't find the article that I was telling Susanmac about, but it was a man who had been treated with an atm somatic mutation. Article expressed surprise that a somatic mutation would be responsive, but really, why not? i think that they have not thoroughly explored every sub group of pancreatic cancer for response. Including me - no applicable mutation, may not have responded to platinum drugs, am on only 1/2 dose. Last ca19 showed a slight decrease although I am still recovering from ire surgery so the picture will be muddled for awhile.
    That's my thought too.. why not? Let's give it a try! My regular oncologist just closed the door on that one. She thinks she's got it figured out.

    As I said above, I'll question my oncologist at MDA when I see him later this month.

    If you find that article, please let me know. And thanks for your advice!

    -TJ
    __________________
    best regards, TJ
    April '19: diagnosed Stage 4 PC (mets to liver)
    starting CA 19-9: 489000
    May - Aug: FOLFIRINOX
    Sep - present: FOLFIRI (b/c of neuropathy)
    scans have shown shrinking tumors
    current CA 19-9: 9889

     
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    Old 01-23-2020, 08:27 AM   #12
    johndoe60
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    Re: Some Folks may be moving in

    Nice to see some of the old friends here.

    John

     
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