Mom's recent diagnosis and quick slide downhill

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zeek_mama
zeek_mama Member Posts: 5
edited September 2020 in Stage IV/Metastatic Breast Cancer, Open to All To Contribute

I am new to this support forum, and caregiver to my Mom who was diagnosed in May with MBC (she originally had a stage II tumor removed ~10 years ago, followed be chemo, radiation and 5 years of Arimidex) and a clean mammogram in August. It showed up with Mets to many internal organs (including lung) and spine.

Her oncologist was confident Letrozole and IBRANCE combo would be helpful but she's had SUCH a rough time since May with everything continuing to go downhill, trouble breathing. several visits to emergency room, two hospital admissions. She hasn't been able to eat and without taking in enough her potassium fell to dangerously low levels. Then in one of her hospital visits she broke the head of her femur and had to have a partial hip replacement so now she is also rehabbing from that. Then a UTI, treated with antibiotics which lead to terrible c difficile infection where for a week she couldn't even make it to the bathroom.

Now she's essentially bedridden, constantly exhausted and can't even walk, she's so deconditioned. This has all happened so quickly. And Friday two weeks ago we learned that her cancer is responding to the IBRANCE/Letrozole and the lymph nodes are shrinking and less are positive. so it's working. But why does she feel so sick? She just says she wants to die even though she's only 75. Her oncologist says she shoudl feel better. I don't know what to do anymore, it's hard working full time, raising my daughter and trying to spend full time caring for Mom. I want her to get better. Has anyone been through this? Has your loved one regained their mobility and positivity as the cancer got under control? She's in a rehab place now as she can't even stand at the moment but we really want her to get mobility back so I can care for her in my home. Appreciate anyone who has been through similar letting me know what got them through.

Thank you all. It's heartbreaking and inspiring to read your posts.

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  • nopink2019
    nopink2019 Member Posts: 329
    edited August 2020

    Calendar age isnt her issue. Looking ahead at nothing better than life now is, and complimenting her health issues is COVID isolation. 1 year ago I hiked 5-10 miles twice a week, skied in winter, lifted weights and tent camped whenever I could. 3 months of awful side effects from 2 attempts to find drug for me and I signed a DNR and wrote my obit. Haven't seen a gym, trail or camped along side a river since mets. Scans are looking good, but before addressing my mental issues I didn't care much.


    Has MO referred her to nutritionist, PT, counselor? Prescribed antidepressant? MBC isn't all that's going on and it seems scans show that is headed in right direction. If her MO isn't addressing side effects, find another or find help in these areas. Rehab sounds like the perfect place now, stay as long as she can. Get her in PT room often. Find distractions, might be audio book while on cycle. Play cards, do puzzles, something mentally engaging. All of it has to be addressed.
    Doubt any of us feel we'll ever be ourselves again, but some folks have been NEAD for years and seem active again.
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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2020

    zeek, psychologists are good at getting us to unpack our problems into separate boxes to examine and deal with them individually and keep them from snowballing-she's had hip replacement and c difficle infection, which are each really tough, and come on top of the shock and endless appts that come with a new mbc diagnosis- but by far the most important thing is that she is responding to I/F, which means that once you get her past these other problems, her life really can be just as wonderful as it was before,for years to come

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  • moth
    moth Member Posts: 4,800
    edited August 2020

    Recovery is possible but at the end of the day, she is the one who will have to push and get through it. It is very hard work to recover from deconditioning. I think given her age & the series of illnesses stacked on top of each other, you will have to be patient.

    One thing I would recommend is making sure she's eating enough, and specifically enough protein. She's fighting cancer & rebuilding bone and other tissue. She will need lots. If the food at the rehab facility is inadequate (& honestly, so much of institutional food is), I'd be sure to supplement with her favourite meals.

    Remember to take care of yourself too - eat, sleep, get some fresh air. Ask your family and friends for help - you no doubt need it.

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  • KBL
    KBL Member Posts: 2,521
    edited August 2020

    zeek, my mom did not have cancer but was in a nursing home and told us she was ready to go. She was 81 and didn’t want to do any of the physical therapy or get better. As frustrating as it was, there was really nothing we could do. She wanted to what she called go home and be with my father who had died many years before. She did pass away, but it hurt that she didn’t want to stay here with us. 

    I can’t speak for your mom, as I don’t know what she’s feeling or thinking, but hopefully someone at the rehab can give her some help. Can you say what level of Ibrance she’s on?  I was only on 125 mg for one cycle.  It was very hard l, and I couldn’t get past the fatigue and my ANC dropped too low. They dropped me straight down to 75 mg, and the fatigue has gotten a little better. I still need naps most days.

    I hope your mom starts to feel better and can get up and moving soon. My heart goes out to you. I understand when a mom says they don’t want to be here any longer. I’m giving you a virtual hug. 

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited August 2020

    Sounds like she's suffering from some depression so addressing that may help. A doctor may be able to prescribe something, It's a shock to the system to be diagnosed with mbc and takes time to adjust to the new normal. You can only take it a day at a time. As a caregiver you can support your mom but you will have to accept that some things are out of your control. That's hard to do when you want so much to help and yet feel helpless. Instead of trying to make your mom's decisions for her or get her to make the choices you want her to make, try to respect how she feels and allow her the power to decide how she wants this to go. You can say things like: It has to be so hard. I'm here to help but the choices are yours. I love you more than anything in the world. I’m here for you,

    It's hard on you, too, so be sure to take care of yourself during this time. Best wishes.

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  • zeek_mama
    zeek_mama Member Posts: 5
    edited September 2020

    Hi everyone - I want to thank you all for the terrific and thoughtful responses. I thought it might be good to post an update. Mom stayed in rehab for almost a whole month - all of August pretty much. There she was able to get a psych & nutrition consult and start OT and PT which she had daily. We adjusted her meds, started her on Remeron to help with depression and she's been on antibiotics to help get the c diff under control. During that whole time she was on the letrozole but off the IBRANCE. She went in to rehab wheelchair bound and unable to walk. I picked her up a few weeks later and she could walk a bit using the walker but needed assistance to get from sitting to standing. They started her on Pro-stat to get extra nutrition/protein and got her on a routine where she's drinking 3 boosts/ensures a day plus eating a little soft food (think cream of wheat, soup).

    Well in the 2 weeks she's been home with me she's made fantastic progress. She says she doesn't even remember anything about the rehab or the hospital visits. She's back to her regular disposition, she's drinking her nutritional drinks and eats a little each day and she's working HARD at PT. They come to the house once per week but the real work is every day when we go through the exercises and I coach her form. In that two weeks she's gotten strong enough to get out of a chair to use her walker to walk to the bathroom and use the toilet herself etc. She can get in and out of her hospital bed herself. It's AMAZING.

    I am so glad we didn't give up on her. Honestly I think she's stronger now than she was before her diagnosis. She's just three days from completing her third cycle of IBRANCE now before her week off and her bloodwork looks good this round. I hope she's able to stay at this new steady state for awhile.

    Again, thank you all as we keep fighting this fight.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2020

    such good news. Thanks for posting.

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  • nopink2019
    nopink2019 Member Posts: 329
    edited September 2020

    zeek_mama, Uplifting news about your mother. Tell her she's inspired me to do better to get myself out of the dumps and get moving both physically & mentally. Yay, Mom!

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