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

  1. #31
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    Sep 2017
    Quote Originally Posted by ddessert View Post
    You had mentioned that she was briefly on Creon but they later stopped it. Is she back on Creon?
    Yes, she is back on Creon upon our insistence, after I discovered what it is used for. The ward doc appeared reluctant to prescribe it back, even hinting that it was in vain. She didn't actually say so but went like ''ok ok we'll put her back on Creon, even though....'' and didn't elaborate further.

    __________________________________________________ ___________

    I thank everyone for all the replies and your support. You can't imagine how much it means to us.

    __________________________________________________ ___________

    Here in my country insurance or personal finances is not a problem because we have free health care. However it hurts when you discover that the doctors whom you're placing your total trust are kinda betraying you? I can't understand why this is happening. For example:

    Today I had a good look at the papers my mum in law had, since her date of diagnosis in April 2017.

    And I found TWO outrageous things!

    1) That she had been moved from the normal cancer wards to the palliative ward, and I'm quoting, ''in view of poor pain control''.

    Now she never complained of any pain. Never even felt any except the first time she was admitted (and diagnosed) in April. And it was a very mild discomfort even back then. She just went for a checkup because she felt the type of discomfort a woman feels when she's on her period, or when one has mild gas. Only in her case it was higher up and not lower-belly as is usual with these types of discomfort. So she went to have it checked out because she thought it might be relevant to her hiatus hernia. So what's written is a total lie.

    Note that she is in full control of her mind and senses, we're not speaking of a forgetful old lady here or something.

    2) At the palliative ward she was regularly being given morphine even though she never had any pain!

    I discovered this when I saw her discharge letter stating the medicines she was given. All of them are in pill form except for Maalox (to reduce stomach acid). The only liquid medicines which were given to her in very tiny measuring cups where the Maalox and something else I didn't know what it was. The nurses said it was protein but I wondered how could 2 scoops of protein powder be mixed to make such a tiny amount of liquid? I didn't question them because I trusted them.

    However on the discharge letter there was this Oromorph written down 2.5mls/5mg to be taken every 4 hours.
    Though I was there in the morning and it was me who informed the ward doc about her desire to be discharged, I wasn't there when she left in the afternoon, but relatives told me that the ward doctor asked her if she wanted to take morphine with her and obviously she replied in the negative. So the doctor struck out the Oromorph. I'd post a photo of the letter but it's against the rules is it?

    I had no idea about this, I thought that morphine was given by injection only and didn't know that oral suspensions existed. My mother in law had assured us that they hadn't given her any injections - because we had asked her because we were worrying since while in the ward she was always so tired and asleep all the time.

    So imagine my surprise when I googled Oromorph and discovered what it was!

    No wonder she was sleeping all night and half of the day, with a very bad appetite and having a lot of tremors while she was in the palliative care ward! Her hands had been shaking like she had Parkinson's.

    Now she's been at home for nearly 2 weeks. She's began regaining strength. Our only worry is that she's a picky eater and she had always been like that - I've known her for 22 years now - we'd go to a restaurant, order a salad and main course, eat the salad and leave nearly all of the second plate there because she feels full. And that was when she was healthy.

    However, thankfully, the days when she couldn't get out of bed and had to wear a diaper are over. So are the days when she couldn't pick up a fork by herself because her hands would be trembling all over the place.

    Now she only wears the diaper just in case because she's afraid of misjudging the need for passing gas and accidentally soiling herself. She goes to the toilet by herself, gets in and out of bed, eats by herself and today she even spent the morning on her feet dusting the furniture!

    __________________________________________________ ___________

    We are all very angry at what had been happening at the hospital. I mean 2 days before we discharged her we thought she was on the verge of passing away. She was asleep, with her mouth open and totally unresponsive to our words and we even touched her on the face to wake her up and she didn't respond. A priest came that day and gave her the last rites. The following morning, she was like wow what a long sleep I slept. Now we suspect it had been the morphine... Today she laughed it off (yes she's actually so normal, speaking, laughing, playing with her grandson...) saying she can't believe that the priest was brought.

    The only thing which is holding us back from pursuing immediately for malpractice is that in my country we have only one government hospital, which in turn has got only this one palliative care ward.
    So ultimately (and very sadly) one day she'd need to go back there, and she'll be in that same ward, under the same doctor's care... you get what I mean...

    __________________________________________________ ___________

    I only took a copy of her discharge letter to mention here but I had a look at all the other documents showing her diagnosis. I'll write them in a separate post and elaborate more when I have all the copies in front of me at hand, otherwise this post will be prohibitively long.

    Thank you all for listening, and I say a prayer for all the members here every time I pray for my mother in law (which is every day) [[[hugs]]]

  2. #32
    Well, Bengal, you and your mother have the dubious distinction of having been victims of the most incompetent medical care I have ever heard of. In one of your initial posts I definitely got a rank whiff of some rotten doctoring, but when I didn't hear back from you I assumed the worst. I'm very, very glad to hear your mother is still alive and kicking. Based on what appears to be a lack of alternatives, I'm sure you will think long and hard about entrusting your MIL to the same bunch of hacks, and it may be that you choose to not to ever go back to that place. As far as any legal matters, about the only worthwhile motive that may appeal to you is to try and make sure that nobody else has to go through the same thing, but it would be a lot of work for questionable gains. It's all up to you, and I don't want to influence your decision one way or the other. I'm very glad that your mother is still with us, and I wish you all the best in the future.

    Sincerely, DMW
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 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 Onc 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
    12/4/17 Diagnosis: Uncontrolled refractory AML

  3. #33
    Regular User
    Join Date
    Sep 2017
    Here's her history so far. I'm writing this from memory since I don't have papers in front of me. I'll elaborate further when I have everything.

    __________________________________________________ ___________

    I've known my mum-in-law since 1995, she was only 49 way back then, only 7 years older than I am now myself.

    She used to complain of a ''delicate stomach''. She could never eat much before feeling full, and she suffered from reflux.
    Apologies for the TMI but her reflux was black meaning that it was blood combined with acid.
    She used to say that she had an upper hernia, a hernia in her stomach. Later I found out that it's called a hiatus hernia. She was never operated for it for some reason even though it all started when she was in her 40's. She used to have endoscopy regularly.
    Reading her latest hospital documents, it is stated that she has esophageal varices (swollen veins in the esophagus) as well. Probably they were the reason for the black reflux, because they bled...

    She's very petite (less than 5 ft tall) but she was a healthy weight and very beautiful - she used to complain that her ''Dolly Parton'' breasts were too large!

    She never smoked. Never took drugs. She never drank apart from some single glass of wine during special occasions like new year's or during a wedding which she used to dilute with soda.

    __________________________________________________ ___________

    She was diagnosed April 2017, this year.

    She was complaining of a ''period-like pain'' and ''gassy pain'' but it was in the area of her stomach rather than in her lower belly. She never described it as a pain. She described it like a ''period'' discomfort, or the type of discomfort one has while needing to pass gas.

    Currently I don't have her papers here so I'm quoting from memory:

    Found 3.5cm growth on head of pancreas.
    Some weeks later it was stated that the growth was 4cm (I don't know if it actually grew or perhaps they measured it from a different angle).
    No metastasis.
    No lymph node involvement - my photographic memory remembers that.

    Biliary stent was placed and the discomfort went all away.

    [Just me asking here, does this mean it's only like Stage 1?]

    Decided the tumor was inoperable due to close proximity to Celiac Plexus.

    Chemo was started... 3 months later in early July. Folfirinox - once every 2 weeks.

    First 2 sessions were fine. After the 3rd session in mid-August BOTH her legs swelled up.

    In August she was started on Creon.

    DVT was diagnosed.

    It was decided to stop the Chemotherapy (folfirinox). No alternative was offered.

    [But I still can't understand... why did BOTH her legs swell up when she was diagnosed with DVT and even had an IVC filter installed? In one leg obviously? And the swelling didn't go away despite the IVC? The swelling only went down when she had parecentesis.]

    She also started suffering from shortness of breath, this was in late August/early September. They gave her an oxygen tank.

    Then they tried to check (or clear?) her lungs through some type of aspiration which hurt so much that she started screaming that she was being killed. That was one point where she started going downhill, after that intervention.

    In the meantime both her legs remained swollen. They didn't appear very swollen to the normal eye (remember I said that she's a very very petite person), I mean her swollen legs were smaller than my own muscular ones but they ordered compression stockings which at the end of the day didn't solve anything apart from making it harder for her to keep her mobility.

    Finally (all this happened before 11th October, remember) they decided to do paracentesis.
    Her stomach wasn't that swollen and even her legs appeared normal to those who never knew how tiny she originally had been...

    Anyway, they removed 10L of fluid.
    All before she was put in the palliative ward which was around a week before the day she discharged herself.

    Once in the Palliative ward they withdrew the Creon. She spent like a week without it till I did the necessary research and insisted she took it again.

    The fluid never returned. I just saw her today and her belly is normal and also her legs. This is after nearly 3 weeks have passed since her parecentesis.

    I had read that once malignant ascites starts... then it's the beginning of the end? But she's been a good 3 weeks now without ascites... could it have been a side effect of the Folfirinox?
    I mean she was perfectly normal from date of diagnosis in April till late July. It was only when she started Folfirinox in late July that problems started surfacing?

    We're hoping for the best.

    __________________________________________________ ___________

    I'll be posting here again when I have all the papers in front of me.
    I know it's not a reliable test but if I remember correctly her Ca19-9 was less than 37 the last time it was checked.

    __________________________________________________ ___________

    And another thing, so far she had no aspiration from the tumor site to know really what's going on. What I'm saying right now might change when I obtain all the documentation...
    Apparently they're only guessing it's pan can.

    __________________________________________________ ___________

    This will sound outrageous to some but what I'm suspecting is that a younger person got diagnosed and space was needed in the oncology ward.
    And they sent the weaker 70-year-old in palliative, inventing an excuse that she needed pain management (for the pain she never had) to justify it all.

    Excuse me but I feel like wanting to vomit if this really was true.
    Last edited by Bengal; 10-23-2017 at 08:32 PM.

  4. #34
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    Join Date
    Sep 2017
    We visited her nearly daily since then, my husband always but me not so much since I have a young toddler.

    To keep it short, barely two weeks ago she was really great. She was cooking, doing light house-work. She was still skinny but the color and musculature of her face showed that she was slowly 'getting better' and my husband said that he felt more meat on her when he held her by the arms just a week ago when her daughter even took her for a soft massage and to a heated pool, which she really enjoyed.

    That was what my husband and his sister were saying. I mean she was really appearing better but I couldn't help sensing otherwise.

    Last week she had an appointment for portacath flushing. We had promised her a day at our house to enjoy quality time with her youngest nephew, and we were to treat her with her favorite rabbit recipe.

    As soon as I saw her I felt troubled. Her eye-whites were yellow, as was her skin, and she was troubled because she was having episodes of passing out. In fact we used a wheel chair because she could hardly move.

    I told her in front of my husband that it's better to take her to the ER but she refused.

    Then she couldn't eat. For the entire day she barely drank 100ml of water. Red bell was ringing, she wasn't able to give attention to her nephew at all and started dozing off.

    Called ambulance (this was 7th November evening). Took her to ER and she was admitted immediately.

    From there on it was 2 steps forwards and 3 steps back. I believe she managed another 4-5 days after admission only because she was given pureed food and intravenous fluid. She barely pooped and peed only very little. Her small tiny body was shutting down. I realized that last week but was unsure whether to say anything because I didn't want to distress my husband and his family.

    She left us in a lovely way though. Smiling. She stopped grimacing. She was never in strong pain to need morphine - I mean it hurt her when she got washed, but she never yelled for pain relief. She was in pain only while being handled.

    She started smiling and joking over very trivial stuff from yesterday. She only cried in pain when the nurses came to clean her. She yelled that her bones hurt. She thought that it was because she lost weight....
    I think she had metastasis in her bones and we weren't told. Of the past 2 weeks her arms turned nearly all purple with purpura/erythom...(whatever it's called?) We were thinking it was the effect of chemo, but would chemo really START to affect platelet production 3 months after last treatment?

    In a way it was a relief seeing her so happy... She was smiling and so serene yesterday, she worried a bit because she was seeing ants on the wall (there weren't any though obviously), she thought her daughter who was feeding her was me at one point. I realized that was a quirk because her daugher's with her 24/7 unlike me :'(

    I was so happy to see her so happy that but it raised a big red flag. I wanted to tell my husband, ''look your mom's in peace and ready to die'', but on the other hand who on earth am I to say such a thing?
    Because in a way I couldn't believe myself. I mean she started gently chastising the person in the opposite bed (who's in her 60's but looks like 30) for going to discotheques and possibly doing drugs.... whereas she obviously doesn't. She complemented me on my hairstyle... while I have white roots growing all over. This morning she grabbed my husband quite strongly asking him to take her to a hair-dresser to dye her hair (she did lose some hair but is far from bald).

    Yesterday I covered her head with a shawl because she was feeling a lot of cold. I roughly cross-checked her body temperature with mine and she was indeed quite cool. I told the nurse a couple of minutes later and the nurse told me not to worry because she never had a fever. I said NO, I'm not saying a fever but the opposite! She's way too cool it's not normal, and the nurse returned an expression I could never forget.

    Then she started ''snoring''. But she never snored before.

    Then she started smiling. Suddenly she wasn't all the time asleep like before.
    She started joking and waving to the patient opposite.

    She always suffered from her hiatus hernia for over 20 years, and she had been splitting black for all these years due to it. She did that again, spent all day and night, spitting.

    Then it was in the morning.

    Then... right after 1:15pn

    Greyish-silvery smoke all over.

    My husband left asap as soon as he saw it over his mum's body.

    As soon as he left, relatives started calling him to come back.

    He couldn't bear it.

  5. #35
    Dear Bengal: Well, it sounds like it is finally over. I'm sorry for your loss, and also sorry that your mother had to suffer through such a primitive healthcare system on that island you live on. The worst is now behind you, so you can start putting your life back together and remembering all the good years that you and your mother had together. If there is anything I can do, please feel free to ask.

    Sincerely, DMW
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 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 Onc 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
    12/4/17 Diagnosis: Uncontrolled refractory AML

  6. #36
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    "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. "
    In what country are you, Bengal? Where is your MIL being treated?
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED

  7. #37
    Senior User
    Join Date
    Aug 2016
    Im sorry for your loss Bengal, Indeed Im on the same condition like you, My father told me, he still want to fight, but his body wont follow his mind, so sad that Im not able to gave him the best treatment, There is no off label treatment here, my father so unlucky, that he already prepared to go back hometown, when we thought he will fine after done the Radiotherapy, I blamed myself because I was not put more attention on his treatment, I thought it was the side effect from radiotherapy treatment.

    All my family trying to encourage me, told me that this is the best way for my father, but one week had passed, I didnt know how to move on, I felt I never tried my best.

    I asked my father to forgive me, but Im not able to forgive myself, Im not ready yet to accept this. I hope that I can keep my life busy and time can heal my heart, I hope this will work for you too Bengal, stay busy and enjoy your life!

  8. #38
    Experienced User
    Join Date
    Nov 2015
    Sorry for your loss. That's hard, but at least she seemed to have a peaceful passing;

  9. #39
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Blog Entries
    I happy that the end was not painful for her. You did what you could, it can be so hard to fight a medical system that does not seem to be rooting for success. But now is time to take care of you and your family. Peace.
    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


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