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Thread: My beloved mother in law diagnosed with PC April 2017.

  1. #1
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    My beloved mother in law diagnosed with PC April 2017.

    My beloved mother in law whom I have known for over 20 years was diagnosed April this year. She's very active and seemed extremely fit at 70 years of age and had gone to hospital complaining of stomach pain, from which she used to suffer regularly. She thought it was her hiatus hernia from which she had been suffering since I ever got to know her. But alas it wasn't to be.

    An ERCP was performed and she needed a stent, which brought total relief and she felt as good as a new-born. But during those same tests they diagnosed PC :'(

    She was put on Folfirinox. After her third round she got incredibly weak. Twice she had to be given blood because her red blood cell count went too low. She's constantly exhausted. She was always a picky eater (probably due to her hiatus hernia) and now it's gotten worse and she has lost a lot of weight.

    To complicate matters she also got a deep vein thrombosis which landed her 12 days in hospital. We were abroad and she didn't tell us about the swelling, and she went to hospital an entire week after the symptoms started...

    I'm not sure yet about the details of her PC like whether there's metastasis or which stage it is. However she said that the oncologist had told her that it was inoperable.

    But I'll be asking her to show me the papers now since it's evident that she needs guidance - had we known her leg was swelling we'd have told her to go to hospital immediately but she decided not to inform us in order not to bother us since we were on holiday and went a week later. We can't risk anything like this repeating itself.

    Thing is that I looked at her papers when we went to pick her up yesterday and saw the diagnosis of hiatus hernia and esophagial varices. Ever since I knew her I always remember her saying that she used to cough up (sorry TMI) black stuff but she always insisted that her endoscopy never found anything wrong apart from a 'slight stomach hernia' which she could control with pills. Now I'm thinking that she might used to say that in order to be able to enjoy eating what she wanted?

    Because when I saw her papers today it was stated that she had a ''large hiatus hernia with esophagial varices''.

    What's more confusing is that whenever I research esophagial varices, which is the condition she had for over 20 years and most probably doesn't have any connection with her PC all websites say that they are caused by cirrhosis of the liver caused by alcoholism. My mother in law never drank. Perhaps occasionally during some event but she's certainly no alcoholic.

    So basically now my mother in law is dealing with 3 things... her ''stomach'' problems (hiatus hernia and esophagial varices) which she had since ages, and now the PC and the chemo side effects.

    She's at the point when she's attributing every symptom to her PC now. Having seen her papers I'm really really enraged that her hiatus hernia wasn't corrected 20 years ago when she was only 51. The Folfirinox caused her the low red blood cell count and the anemia which was corrected by transfusions, but it's not causing her stomach problems because she used to have those before, unfortunately.

    I'll be updating when I get more information about her original diagnosis. I was staying a step back because I wanted to keep her hopes and spirits high - she doesn't understand medical jargon and I wasn't able to obtain much info since I'd be at home taking care of our toddler and letting my husband, her son, to be with her.

    But now I decided that I need to know as much as possible to help her. She's the best mother in law in the world and I'll be taking care so that she gets the best treatment!

    Please send your thoughts for my lovely mother in law and feel free to share your stories, especially if you used or are still using the Folfirinox Chemotherapy.

  2. #2
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    This morning she was re-admitted with a fever of 103F.
    It went down within a couple of hours, without even being treated for it.

  3. #3
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    Have they try to do blood culture, to see any possibility for infection? My father infection symptoms almost the same like yours mother in law. Its an ON and OFF fever without any treatment, but after a view weeks, the fever happen followed by chills.

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    Thanks for replying czwing.

    She had been discharged 3 days ago after undergoing antibiotic treatment for negative rod bacteria (blood culture was done to determine it) though originally she had been admitted because of DVT.

    As of update, she now has fluid in lungs (pulmonary edema?). No fever but she's on oxygen.

    It's such a pity, she was so fine yesterday and actually had an appetite. What could have caused her pulmonary edema? Is it an infection, an effect of the pan can or a side effect of her chemo? We don't want her to decide against her oncologist's directions to quit chemo for blaming what happened to chemo.... :'(

  5. #5
    Moderator Top User ddessert's Avatar
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    Hers sounds like a complicated case. One guess might be that the pulmonary edema is caused by another blood clot that has traveled to the lungs. You stated that she's already had previous blood clots (DVT), so this would not be a stretch. Blood clots are also an occasional side effect from FOLFIRINOX. I imagine with the previous DVT episode, she is already on blood thinners to try and minimize more clots.

    Trying to correct the pulmonary edema might take precedence over cancer treatments. First, they'll have to figure out the real cause.

    It's hard to know which problem is more acute.
    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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    Thanks for replying ddessert.

    6 days have passed and she's still in hospital, on oxygen and having nebulizers every 6 hours.
    2 days ago they aspirated a sample from the fluid in her lungs, but no results yet.

    I'm not even sure whether the edema is in her lungs or in the pleural cavity because I'm hearing everything through 3rd persons who have no idea and wouldn't know the difference. But I'm suspecting it's in the pleura because when I mentioned it to one of her daughters she said that the docs had mentioned the word pleura.

    Her legs are still a bit swollen. But how come both legs if she had the DVT in only one of them? One of her daughters told me she seems to be gaining a bit of weight. I hope that it's so, and it's not fluid. She also said that the tumor was getting larger. I asked her but did they do a scan, to which she answered no, but she was thinking the tumor was getting bigger because her belly seemed slightly larger than usual.

    After they did the aspiration, which hurt her a lot to the extent that she started crying out that she was being killed, she was (and still is) in a very bad state. Too weak even to walk, and even more short of breath.

    I'm disappointed in our medical care because this morning they told her that the end could be near and that the body can deal with only so much, and she started crying 'because a doctor told her she was going to die'.

    The doctor also asked her directly whether she would want defibrillation if her heart stopped. Putting aside ethical issues about whether he should have asked her directly, why on earth are they thinking that her heart would just stop? I've been lurking on this forum for a couple of weeks before registering, and haven't read about pan can causing the heart to stop??

    This morning she wasn't good at all, at one point a doctor asked one of her daughters whether they wanted a priest to administer the last rites.
    However the daughter insisted that staying in bed was doing my mom in law more harm than good, that she needed to move around. They got her a physiotherapist to do some exercises and massage and all of a sudden she got much better - still very short of breath but dammit I think the doctors are ruining her morale and indirectly telling her that fighting would be in vain.

    I'll try to make it a point to go and see her tomorrow, even instead of her son (my husband) if necessary.

  7. #7
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    They ask those questions because she is able to make the decisions at this time. Even though a sudden stop of the heart is not the major issue of Pancreatic cancer...it still needs to be addressed. My dad had a form on his fridge and on our fridge when he visited that we were not to preform CPR. We even told my teens the plan. It is an odd conversation when someone seems to still have quite a bit of life in them but you'll be reassured to know the plan and her wishes. My gram has advanced directives and she is not terminally ill.

    Edema is common with Panc. cancer for many. Her stomach bloating is also common. The doctors should be able to tell if she is retaining fluid.

    I hate hearing she is uncomfortable. I hope she is able to get some rest and feel comfortable soon.
    Jan 15, 2016 Father went to the ER with extreme abdominal pain...
    Jan 16, 2016 unofficially diagnosed with pancreatic cancer stage IV in the tail, too many mets in his liver to count, spleen and lung.
    Folfirinox-2 doses in February 2016
    March 2016-discont. chemo
    Apr 2016 severe onset of diabetes
    June 15, 2016 Celebrated he/my mom's 47th Wedding Anniversary eating pier fries/fried dough (I think this was his goal...to live to make it 47 years)
    June 15th, 2016 at 11:00 PM experienced sharp abdominal pain not managed with pain meds at home
    June 16th, 2016 at 3am went into the hospice home for pain management (walked into the facility).
    June 16th, 2016 by 11am...we learned this would be where he would spend his last days (shocked because at 9am he took a few sips of coffee)
    June 17th, 2016 at 8:20 pm...sun was setting, windows were open, birds chirping, my mom/me/my brother were all by his side with our hands on his body as he took his last breath at 68 years old.

  8. #8
    Moderator Top User ddessert's Avatar
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    Heart failure can often cause pulmonary edemas, so they are associated with each other. I was wondering if the nurses and visiting doctors just assume that there is a heart problem causing it, without checking into the individual patient's health history?
    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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    The day before yesterday, one of her daughters told me she looks better and seems to be gaining weight.

    I think they're getting it all wrong.

    Today's update: my husband went to visit, and he said she doesn't look good. Both her legs are swollen equally - that means it's not the DVT which is causing the swelling because she had DVT only in one leg, so why would the other leg be also swollen? He also told me that her belly was larger than usual.

    Dammit I don't think she's gaining healthy weight.

    This Wednesday, after my own parents come back from abroad and they can baby-sit our toddler I'm damn sure I'm gonna stay with her through the mornings and seriously see what's happening.
    So far it's been very frustrating. Either our relatives are not being told anything or (very probably) they're not understanding.

  10. #10
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    Quote Originally Posted by ddessert View Post
    Heart failure can often cause pulmonary edemas, so they are associated with each other. I was wondering if the nurses and visiting doctors just assume that there is a heart problem causing it, without checking into the individual patient's health history?
    She never had any heart problems. You say heart failure can cause pulmonary edemas, perhaps can pulmonary edemas also cause heart failure?

    I also used to think CPR was standard procedure... 30 years ago my grandpa had heart failure (not cancer related) and they just administered defibrillation to try to get his feeble heart pumping again, they didn't ask relatives, I was there and only 10 years old. I can still hear him shouting to stop because apparently it hurts. He didn't make it.

    I never thought it was a choice.

 

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