A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 5 of 5 FirstFirst ... 345
Results 41 to 50 of 50

Thread: Almost 5 years NED

  1. #41
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Posts
    2,161
    Blog Entries
    7
    More on CTC test:

    One alternative to having a tumor biopsy (in case there's difficulty) is a liquid biopsy. It tests the blood stream for Circulating Tumor Cells (CTC's) but it's absolute reliability is often suspected. There was a study sponsored by the company that does liquid biopsies, Foundation Medicine, comparing them to surgical biopsies and they saw ~95% agreement in mutations. But for those of us who can't have a biopsy, it may be better than nothing. 2 week turnaround times.

    I'm sure that Dr. Beg knows much more about this than I do...
    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 - Radiation+Xeloda, 25 days in 5 weeks
    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 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  2. #42
    Newbie New User
    Join Date
    Aug 2017
    Posts
    9
    Yes, it removed the lung tumors by taking wedge shaped samples. The tool cuts and staples the area at the same time. Required an overnight hospital stay and he came home with a drainage tube. Pretty painful but he recuperated fairly quickly. We chose it because it is more accurate than needle biopsy.

  3. #43
    Kstacey, forgive me if you've already included this information somewhere, but can you tell me where you had the wedge biopsy done, and how many tumours they were dealing with? Thanks so much. Oh, and who was the surgeon? Thanks!
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time

  4. #44
    Newbie New User
    Join Date
    Aug 2017
    Posts
    9
    The surgery was done at UT Southwestern in Dallas by Dr. Kemp Kernstine. He removed 2 small spots in the right lung. There is still 1 on the right lung that a PET scan confirmed is cancer. The surgeon did not suggest removal of the left one. My husband will start chemotherapy soon. We are still deciding which type of chemotherapy to try first.

  5. #45
    Thanks so much! I wonder why the doctor removed two but did not recommend removing the third. It seems if it can be done, it would be good to take it ALL out.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time

  6. #46
    Newbie New User
    Join Date
    Aug 2017
    Posts
    9
    The surgery was not considered curative. It was used only as diagnostic. The two in the right were close to each other so he was easily able to remove both. Kernstine said he would never operate in both lungs at the same time anyway.
    The rationale for not removing the left one is that there is probably more cancer that is too small to see and it needs to be treared systematically with chemotherapy. To use David's words , they don't want to play "Whack-a-mole"

  7. #47
    Newbie New User
    Join Date
    Feb 2018
    Posts
    2
    Hi ,

    I'm a new forum member trying to find help for my brother. He received a very similar diagnosis as your original one earlier this week. He's 61 and just retired in Dec. He starts chemo the week after next. We're under the impression that if you start chemo that rules out being part of a trial until he goes off the chemo his Dr. in Great Britain is recommending. It looks like you were put on a chemo / trial combination from the beginning of your treatment. Am I right on that? Who directed you to the trial? I'm hoping he'll get a second opinion from MD Anderson, Johns Hopkins etc. Your progress looks really impressive and I am so pleased for you. Thanks, Vic

  8. #48
    Newbie New User
    Join Date
    Feb 2018
    Posts
    2
    Hi Jackie,

    I'm a new forum member trying to find ways to help my older brother just diagnosed this week with a 4cm tumor on on his pancreas and two small ones on his liver. Inoperable at this point so he starts chemo the week after next following a liver biopsy next week. That's so wonderful you were able to become a surgery candidate. What are your suggestions for getting to that point and is there any reason you haven't explored the immuno therapy trials? Thanks so much and keep up the fight. - Vic

  9. #49
    Hey, Vic. First of all, I'm in Japan, and found a very progressive surgeon who has been influenced by a progressive surgeon in Heidelberg, Germany. If you're in Europe, perhaps you could visit him. Markus W. Büchler.

    Since I am in Japan, I'm not sure about trials. It seems a lot of what we get here comes to us after it has been approved elsewhere.
    Anyway, what I was on was Gemzar/Abraxane. The condition for surgery was that I stay on chemo for one year, and that it remained effective in either shrinking or stabilizing the tumours. The ones on the liver were barely visible. Only one was visible on the CT, and two tiny ones were detected by MRI. By the time of surgery, they were practically gone. Because of their location, right on the surface, surgery was more readily considered. But I had to search around a LOT to find a surgeon who would do it. Many of them do rule out surgery automatically at Stage IV.

    There's a guy in this forum who has survived so far four years (or more?). He's in Europe. He has surgery at Stage IV as well. So, it seems that, is given a chance, we can have a chance at surgery and possibly longer survival even at stage four.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time

  10. #50
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Posts
    2,161
    Blog Entries
    7
    Vic,
    I was put on Gemzar/Cisplatin because of my BRCA2 mutation status. Not a standard treatment, but not a clinical trial.

    Some clinical trials want treatment-naive patients and others want them to have exhausted other possibilities. It all depends upon the specific trial, but the terms are always listed on the information page. There’s usually a contact point listed as well who should be able to give the details.
    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 - Radiation+Xeloda, 25 days in 5 weeks
    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 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

 

Similar Threads

  1. Exercise and Suplements almost 4 years after therapy
    By miloss7 in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 2
    Last Post: 11-01-2010, 10:10 PM
  2. Almost 5 years clear of Ovarian Cancer but...
    By Midnight_Butterfly in forum Ovarian Cancer Forum
    Replies: 1
    Last Post: 08-04-2010, 03:39 AM
  3. Muscle Pain almost two years after treatment
    By Donna S in forum Breast Cancer Forum
    Replies: 10
    Last Post: 10-11-2005, 08:26 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •