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Thread: i need help understanding

  1. #1
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    i need help understanding

    My mom was diagnosed with multiple myeloma in September 2014. She is 64, very active and stubborn. Avoided going to the docs for about a year with severe back and rib pain. My father and her are very private. It is very hard for me to be involved. Mom is very afraid of catching anything and has shut herself off. She is on so many pain pills and medications, valcade injections. Once a week steroids, revlamide and some anti depressants. Its like she isn't even there anymore. She is suffering with explosive and constant diarrhea. I guess I need to hear from someone that this is normal? I am going to her next doc apt. But they really don't want me there.

  2. #2
    Hi Nmz

    Welcome to the site. I am sorry you are dealing with this and i understand... completely. If there is a word beyond stubborn...that is my MIL.

    My MIL was diagnosed Jan. 2014. She is 84? She started suffering severe back, neck and rib pain a good 4 months before that. She is still on pain meds and beginning to complain about bone pain again. She also swings back and forth between diarrhea and constipation....which is a battle for her. She too has more or less shut herself off from the world...only going out for doctor visits and such. I know she is taking some drug... but am unsure of the name... it is related to thalidomide and the FIL must sign for it in triplicate.

    Question. Has your mother done chemo? Infusion chemo that is.....
    Last edited by shaww; 03-09-2015 at 12:04 PM. Reason: added specification
    I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing.

    Only I will remain.

  3. #3
    Moderator Top User ddessert's Avatar
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    While on chemo they could've told her she he susceptible to infection which would stop the treatment. General (untargeted) chemotherapy interferes with the body's ability to make red and white blood cells. That means that infections are harder to fight. And if she gets one, they need to stop the chemo to allow her body to make more white blood cells to fight it. And that allows cancer to grow unabated.

    Same story for the diarrhea. The intestinal lining is also affected by chemotherapy drugs and that causes diarrhea.

    It's not easy for a parent to "worry" their children about their health problems. For their entire lives, it's always been the other way around.
    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-Dec 2016 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  4. #4
    Very sorry your Mom has to deal with this disease. I was treated for MM in 2001, age 42 at that time. The first thing you will want to understand is what the treatment plan is. Typically for a patient age 64 in otherwise good health the goal is to reduce the amount of MM with chemotherapy. If and when reasonably good response (reduction of total MM tumor burden) is obtained, then a stem cell transplant would follow. If her oncologist is not working towards a stem cell transplant, then there should be some very good health reason why not (64 is not too old). I would consider a 2nd opinion if that is not where treatment is headed.

    Why do you think she is afraid of catching anything? If her white blood cell counts are holding up OK, she should not be unduly afraid of getting sick. Yes, she should be a little more careful than normal about being around crowds of people - but there is no reason to be a hermit unless that is what her doctor is telling her to do. Get a mask to cover mouth/nose when she has to be in a crowd (oncologist should have them).

    As far as diarrhea, yes chemotherapy causes that, but you should describe her symptoms in detail (how many times a day, etc.) to the doctor. I myself had diarrhea for weeks after hi dose chemo, and when I complained to the doctor he said you shouldn't still be having that - switched antibiotic and that was the problem. Communication with you doctor is essential when you are undergoing cancer treatment. It your Mother finds it difficult to discuss with her doctor, you can try the best you can to help make sure everyone is on the same page. Don't be afraid to ask anything. I hope they can make some kind of adjustment to help her side effects. If her personality has changed, that's a side effect too and they should know about it! I wish your Mom the best.

 

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