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Thread: Whats Next

  1. #1
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    Whats Next

    I have stage IV pancreatic cancer diagnosed Dec 2011. Everthing is going fairly well. When will it turn to the worse? I am still getting chemo and the dr wants to continue with the idea of never stopping. I am a little concerned on what wil happen next. Most of the stuff that I have read makes me kind of scared. I am ready for what ever happens but i am feeling good. Is there anybody esle having the same experience?

  2. #2
    Super Moderator Top User Hope2012's Avatar
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    There is no timetable for what's next. Every person is different. If treatments are going well and continue to do so for a while then that's great! Keep in close touch with your doctor...they know your case the best and it would be irresponsible for anyone here to speculate on what's next and when.

    Be wary of what you read on the internet...know that averages are just averages.
    This dark night shall end and the sun will rise again...
    Believe

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

  3. #3
    Top User Carol Wal's Avatar
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    marvinm.....Live in the light of the good times the bad if it comes will come soon enough and we just never know everyone and bodies are different. Good luck to you and I pray you stay feeling good.....
    Oct 9,2012 Hubby's ( 65 ) ERCP, Stent put in also told might be cancer
    Oct 23,2012 ( ERCP ) diagnosed. PC on head of pancreas.
    Nov. 5,2012 Whipple at Loma Linda Hosp.... could not be finished due to heart issues
    ( 4 1/2 hours into surgery )told it's also attached to Portal Vein, now only Chemo & Radiation
    11-27-12 Surgery site Infection
    Waiting for Chemo/Radiation
    1-6-13...Still waiting
    1-18-13 appt with Radiologist on 22nd.
    1-30-13 Hubby started on his radiation and Pill Chemo ( Xeloda 3200 mg per day ) for six weeks
    3-12-13 ( Bowel blockage) in Hospital Fluid being drained
    3-21-13 Last day of Chemo/radiation...Now on a much needed break
    4-18-13 New Stent put in metal with mesh
    4-19-13 2nd round of ( Xeloda ) 2 weeks on 1 week off till ? 4000 mg per day for 6 months ( changed to 3000 )
    6-12-13 Large Hernia at surgery site/won't be repaired due to his heart condition also losing toenails ( Xeloda )
    8-9-13 Taken off all Chemo just Living Life now and Keeping him Pain Free "In God's Hands"
    REMISSION NOW PRAYING IT WILL LAST 1-10-14

  4. #4
    Top User Queensville's Avatar
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    Hi Marvinm, Welcome to the forum. Glad you are here. This whole pc thing can be daunting but don't worry we are here and will help you. Hope2012 is right, be wary of what you see on the internet, particularly since there are so many new types of chemo that give a longer lifespan.

    Cheers.
    Queensville
    July 22 2011 Hubby (64) Diagnosed PanCan. Sept2011- Feb 2012: Abraxane/Gemcitabine. Feb-May 2012:Gemcitabine only. June-Sept 2012 5FU. Sept 4-no more chemo - Just living life. Multiple stents. Jan 2013/18 month mark. Mets everywhere. Looking for a bumper sticker that says 'Stay at safe distance - Driver suffering caregiver burnout'. Hospice Thurs Feb 28 2013. March 12 2013 he went off to his new adventure where we will one day meet again. It was 20 months from date of diagnosis until now.

  5. #5
    Super Moderator Top User DebbieC's Avatar
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    Hi Marvinm,

    Welcome! I'm so happy to hear that you are feeling good...right there you are better off than a lot of people going through pancreatic cancer treatment. For some, this treatment can be just terrible but you are lucky in that you have quality of life. That is a big plus for you!

    One thing that is predictable about pancreatic cancer is that it's unpredictable. As hard as it may be not to look in the future being in the situation that you are in, just try to focus on today and that you are here, feeling good, and having hit the 1 year mark just recently is excellent! You may not realize this, but you coming here and telling your story will be an inspiration to people! Glad you're here!

    Debbie
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  6. #6
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    Hi Marvinm I too am coming up to my 1 year Pancan anniversary in March have had experience of a few different chemo regimes and doing Folfox at the moment. Also still functioning pretty much as per normal with a few adjustments as to food tolerance and portions. And horrible lethargy. My onc says despite no real results with tumour management I am doing well to still be going to work etc. it is scary not knowing what is happening in there though and having no control is no fun at all.

    I am taking each day as it comes doing the chemo days then trying to forget about it til next time. I was looking at info about abraxane/gem which has not been tried for me yet but think it is probably best not to look at the net too much wait see what the onc says and put my faith in their advice -at the moment the plan for me is to stick with folfox as long as possible tweaking it along the way if my tumours don't respond the next step will probably be trials. If you are worried about the next step even if you are doing well at the moment you should ask your onc questions take a list with you next time you go I know I ask my team some really silly stuff but if you are worried about it don't hesitate remember, they work for and with you and they won't mind.
    Diagnosed March 2012 non operable Pan Can with mets to liver and adrenal glands. Otherwise quite well. Started Gemzar in April did several rounds Then had scan in July showing no good results tumour imploding and mets had advanced. xeloda tablets were started with good results first scan came back with shrinkage every where not a lot but encouraging. Dec scan showed liver mets returned and gained in size Folfox started January 8 2013 Dr proposed 4 rounds then a scan. Completed 4 rounds scan results not so good pancreas tumour stable and 2 spots on liver also ok but small increase in size of 3 liver spot and more spots forming biloma a formed in liver. doctors describe me as asymptomatic. Currently on chemo break until further notice.

  7. #7
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    Thanks for all of the responses. It is a pleasure being able to chat with people that can relate to our situations. I think a big part of me that makes me feel as well as i do is my support that my family gives and positive attitude that i refuse to change. i do not tolerate anything negative. Evety day is a beautiful day. Thanks again.

  8. #8
    Top User Queensville's Avatar
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    Right on. What a wonderful attitude you have. So thoughtful to think of how this will affect your family and get support for yourself. Hubby goes to Gilda's Club and I believe it has helped him and me. He has his own programs, one is about having metasitized cancer and the other one is called, Living with Dying. I think it should be Living WHILE dying. But that's just me. He also parks his butt on the edge of the table when the ladies do their baking for the week. He calls himself a taste tester, signs in as such, and encourages other fellows to do the same. After a year he now has a small following of men who sheepishly show up each monday.

    I hope Marvin that you will be able to experience the joys and support that come from being around other people who are fighting this.

    Take Care,
    Queensville
    July 22 2011 Hubby (64) Diagnosed PanCan. Sept2011- Feb 2012: Abraxane/Gemcitabine. Feb-May 2012:Gemcitabine only. June-Sept 2012 5FU. Sept 4-no more chemo - Just living life. Multiple stents. Jan 2013/18 month mark. Mets everywhere. Looking for a bumper sticker that says 'Stay at safe distance - Driver suffering caregiver burnout'. Hospice Thurs Feb 28 2013. March 12 2013 he went off to his new adventure where we will one day meet again. It was 20 months from date of diagnosis until now.

 
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