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 2 of 4 FirstFirst 1234 LastLast
Results 11 to 20 of 39

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

  1. #11
    Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Location
    Wylie, Texas
    Posts
    1,706
    Blog Entries
    7
    You could ask if the weight gain is all water retention. Her inactivity (stuck in bed) might be contributing. You did say she felt better earlier with some physical therapy.
    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

  2. #12
    Regular User
    Join Date
    Sep 2017
    Posts
    20
    They're sending her home, oxygen tank and all, because ''there's nothing they can do more in hospital''.

    What's worrying us, apart from needing the oxygen tank, is that she seems to have zero energy. Even though she's eating her meals and taking Ensure she's very weak to the extent of needing help to get in and out of bed.

    It's like she's going away, little by little.

  3. #13
    Regular User
    Join Date
    Sep 2017
    Posts
    20
    Update. You were right @ddessert

    2 days after my last post above she was back in hospital due to shortness of breath.

    Yesterday they decided to do paracentesis fluid aspiration.

    They did it 3 times, leaving 4 hours between each session, and in the first 2 times 7 liters of ascetic fluid was removed. I don't know how much they removed during the third session since it was after midnight.

    Her belly wasn't big, only a little. The problem had always been her legs. Her legs are normally skinny but since ''she was diagnosed with DVT'' they had swollen up to 3x their size. However since she's naturally skinny her swollen legs didn't look that big to people like nurses and docs who had never seen her before.

    I put ''diagnosed with DVT'' in parenthesis above because now I'm having my doubts. Actually I had them earlier, because how come they diagnosed DVT when both legs were equally swollen? As far as I know the swelling only affects the DVT leg and not the other one as well? But doctors studied and should know much more on this topic than a lawyer, isn't that right?

    Anyway now after the paracenthesis her legs are no longer swollen and she can move around much more. But for some reason the nurses are insisting that she wears a diaper and not get out of bed... Even though she insists that she can walk and take care of herself.
    To be honest I'm losing trust in our health system. Her son told me that it seems like they are experimenting on her, and waiting for her to become bedridden.

    I'm soooo confused
    Last edited by Bengal; 09-29-2017 at 08:06 PM.

  4. #14
    Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Location
    Wylie, Texas
    Posts
    1,706
    Blog Entries
    7
    I think you should trust your gut on this.

    The recommendation to stay in bed sounds similar to a blog post I'm working on: The Worst Medical Advice I Ever Received

    DVT can affect both legs, but it is rare.

    Perhaps ask the doctor if staying in bed is the best thing for DVT? Just in case her diaper and being bedridden is just a 'convenience' for the nursing staff. Because inactivity is a major cause of DVT.
    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

  5. #15
    Moderator Top User BobInBonita's Avatar
    Join Date
    Mar 2014
    Location
    Bonita Springs, FL USA
    Posts
    1,790
    Bengal,

    I'm so sorry to hear about the ongoing problems your MIL is having.

    I have a couple of thoughts that hopefully will help at least a little bit.

    The Dr asking her about her wishes and CPR if she had a crisis sounds like it could have been handled with more tact, but it is a good, legitimate question for all of us "of a certain age", and especially appropriate with our medical state of affairs. Nontheless, the first time a Dr asked me, I was shocked and appalled because I did not feel anywhere near death at the time. I started to go into my technical description of "well, if this happens, I want this, ad if that happens, I need to consider this other option". The Dr looked at me and simply said "Mr Lang, if you have a sudden crisis we may have 1 or 2 minutes to decide and begin, or anything we do will probably not help anyway. If we needed to know right now, would you want CPR or not." The immediate decision for me was yes, I would accept CPR. Even though my wife and I had talked about it several times, it had never been in the context of an immediate crisis. Now, several months later with my condition deteriorating, we have changed our opinion and would decline CPR. I have the big orange "DO NOT RESUSCITATE" order taped to the side of our refrigerator. These are important discussions to have. Hopefully the whole family will be on-board with decisions that are made.

    Almost 50 years ago, I took Human Anatomy and Physiology. One of the recurring themes was how many disease processes across organ systems, led to edema, and how edema then led to failure of other organs. It was a downward, negative spiral. The only good news was that if the edema could be broken, progression could be stopped.

    I would have a frank discussion with her Dr about the nurses. Unless there is a medical reason, activity and movement almost always helps attitude.

    Best wishes that things continue to get a little better for her.

    Bob
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  6. #16
    Regular User
    Join Date
    Sep 2017
    Posts
    20
    Update:

    She felt great after her abdominal and leg swelling went down after the parenthesis. Her abdomen had not been that swollen but her legs where x3 their size though they didn't seem so since her legs are naturally very skinny so even though swollen they seemed proportionate to the medically untrained.

    Thing is, they kept with the parenthesis till today, so it's like 3 or 4 days with fluid continually draining. This morning barely any fluid came out so they closed it.
    What worries us is that she kept getting weaker. So it's like the first day of parenthesis she was great, lifting her legs, walking around and being happy on how light and energetic she was. Then from the 2nd or 3rd day everything mysteriously went downhill? Today she was continually drifting in and out of sleep. She even said something ridiculous, and then laughed it off saying that she had just dreamt it.

    She doesn't seem to be in pain. 2 days ago she woke up with pain during the night and she asked for sugar water and the pain went away (??) or so she told us.

    This morning they moved her to another ward... one where patients who are no longer receiving chemo are placed.

    Her oncologist had said that chemo now is out of the question, but if needed she can have morphine.
    This sounds very very bad.

    _________________________________

    I've been reading and researching. Is it true that when pancan patients get ascites they're nearing the end? Is it true that ascites in this case means that there's mets and they can't be cured?

  7. #17
    Regular User
    Join Date
    Sep 2017
    Posts
    20
    Guess what.

    Today I was speaking to my sister-in law and told her about Creon. (I have been extensively reading this forum and seen that it's given to nearly all pc patients.)

    I didn't mention Creon by name, only asked if they had been giving her something to aid digestion since it's very likely her pancreas isn't producing the digestive enzymes necessary. She asked me what this pill is called, and when I told her it's Creon she exclaimed that she had been taking it but some days ago they removed the prescription!! She exclaimed saying that it's from since she was put off Creon that she started getting weaker and weaker.

    We're very frustrated at this. She was put in the palliative ward, and we were told that they give no treatments there except morphine for the pain.
    She's NOT in pain at all and does not need morphine, but why withhold the Creon? Why withhold something which was helping her get nourishment from her food? No wonder she's getting skinnier by the hour and barely manages to stand up, she's so weak now.

  8. #18
    Wow! That's terrible. Is that in the US?
    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

  9. #19
    Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Location
    Wylie, Texas
    Posts
    1,706
    Blog Entries
    7
    If you can't move her, I'm wondering if you need to get lawyers involved?
    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

  10. #20
    Senior User Dead Man Walking's Avatar
    Join Date
    May 2017
    Location
    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
    Posts
    298
    Dear Bengal: Could you please tell us where this is happening? The rather arbitrary demarcation of "nothing but morphine in the palliative ward' does have a klunky 3rd world feel to it. I looked into the cost of Creon, and it's approx. $5 per pill in USD, so it isn't exorbitantly expensive like azacitidine or Neulasta. My condolences for all the difficulties that you have had, and I hope that you can find some peace and resolution coming out of this situation.
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Oncologist estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

 

Similar Threads

  1. Update on Mother - July 2017
    By DixieDoodle78 in forum Brain Tumors Forum
    Replies: 3
    Last Post: 07-23-2017, 11:48 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
  •