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Thread: New to Forum, wife has pancreatic cancer

  1. #1
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    New to Forum, wife has pancreatic cancer

    Hello, First post.
    My wife was diagnosed with PC stage 4 in March 2017, mets to liver, abdominal wall, and just recently progression to right lung (pleural space). Folfirinox was stopped due to progression and now currently on Gem-abraxane.
    My wife has been severely fatigued and weakened to the state that she needs help standing and walking short distances. Also has had pleural effusions requiring Pleur-X drain. The drainage has decreased since the Gem-abraxane was started which was 3 weeks ago. So that is encouraging. Although the chemo is being given to hopefully help with her discomfort and improve her quality of life, it has been a rough time over the last 6-8 weeks. Symptoms and weakness just seem to be getting worse. It's hard to know if this is the cancer or the treatment. The latest problem is swelling from the hips to knees and it causes more discomfort. This started after second round of the Gem-Abraxane. She also had transfusion for lower hemoglobin.
    It is nice reading others posts and to know we are not alone.

    MinnMJG

  2. #2
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    Minn
    Very sorry that you had to find use of the forum. Hoping that all goes well with your wife and her treatment. I am not familiar with the chemo regimen that your wife is on, but I do know from my own brief experience with m chemo treatment that it does take a toll on you physically and the effects are cumulative. Not looking forward to resuming my treatments come October but we have to do what we feel is best for us in the long run. You are most definitely not alone. As much as possible keep yours and your wife's spirits high, it may be difficult at times but do your best for her and yourself. Take care!
    eds
    1/8/17 Diagnosed with Operable PanCan
    1/31/17 Started Immune therapy clinical Trial at Hopkins
    2/13/17 Whipple Surgery
    5/8/17 Completed SBRT treatment at Hopkins
    5/16/17 Started first cycle of Chemo Gemcitabine and Xeloda
    6/1/17 Admitted back into Hopkins with Gas in Abdomen from perforated bowel
    7/5/17 After a week in the hospital and a months rest delay Chemo for 3 months
    7/21/17 Quarterly CT Scan shows no evidence of Recurrence
    9/29/17 Quarterly CT Scan shows local recurrence of growth on the pancreas body

  3. #3
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    eds,
    Thank you very much for the kind words of encouragement. I never thought our lives would need all the support from people like you and our friends and family, but grateful for everyone's huge hearts. Wish you strength and peace as well come October.
    Minn

  4. #4
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    Hi,

    Sorry you have to be here, but glad you found us, gem/abrax also cause low HB on my father, 6 cycle of gem/abrax and 5 times blood transfusion done in between the treatment. It is good if you can keep your wife stay active, but not too tired. Morning sun also helped my father when he was on the treatment. So far he could handle the side effect.

    Every one have their own reaction to the drugs regiment, you can ask your wife doctor to give you advice how to handle the side effects. I really admire my father onco dr, he guided us to eliminate the side effects when we complained to him.

    Best wishes for you and your wife.

    Czwing

  5. #5
    Moderator Top User ddessert's Avatar
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    Minn,
    If the treatment appears to be effective but the quality of life is not where she wants it to be, she can request to lower the dose or lengthen the schedule. This particular dosing and schedule of Gemzar/Abraxane has been studied pretty well, but there is no evidence that it is "optimal" at killing off the tumors. A lower dose might work just as well. We have to strike a balance between a) killing the tumor; b) avoiding adverse effects; and c) keeping the quality of life she wants. b) and c) definitely argue towards lowering the dose and/or lengthening the period between treatments.

    We assume that more chemotherapy will kill more tumor cells. But if the treatments are not tolerable and she has to stop, that's not helpful in the long term. Personally, I think there's an optimal dosage/schedule unique to each patient. Some can tolerate a lot of chemo and others, very little. But our dosages are set by the maximum tolerable by perhaps a dozen or so clinical trial participants several years ago. If they were all "heroes", the dose for everyone else will be too high.

    It may come down to a discussion with the oncologist on how much your wife values quality of life versus quantity of life.
    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-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  6. #6
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    Thank you all for the info. We touched a little on the tolerance of the chemo and the balance of quality of life during last treatment. My wife has wanted to push with every treatment and wants to keep the gas pedal down to kill the tumors. I have seen it taking it's toll and she is now so weak. The oncologist has offered the same opinion that adjustments may be needed to balance the quality of life. It is scary for my wife thinking that decreasing amount of chemo or frequency is going to give the cancer more of a chance to progress.
    MinnMJG

  7. #7
    Moderator Top User ddessert's Avatar
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    I'm grateful you've already had that conversation!

    I might plant the notion that more is not always better.

    I watched a YouTube video a while back talking about this. I'll try to dig it up and post it for you. It talks about 'nadir' and cancer treatments. I have found that some oncologist webinars can be full of useful information.
    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-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

 

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