Join Us

We are 225,036 members in 83 forums discussing 163,853 topics.

Help with Abbreviations

Topic: Mom's recent diagnosis and quick slide downhill

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Aug 3, 2020 11:29PM

zeek_mama wrote:

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.

Log in to post a reply

Page 1 of 1 (8 results)

Posts 1 - 8 (8 total)

Log in to post a reply

Aug 4, 2020 12:40AM nopink2019 wrote:

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.
Dx 2008, IDC, Stage IA, Grade 3, ER+/PR-, HER2- Dx 2019, Stage IV, metastasized to bone/liver/lungs, ER+/PR-, HER2- Chemotherapy 8/22/2019 Taxotere (docetaxel) Chemotherapy 9/12/2019 Xeloda (capecitabine) Targeted Therapy 11/8/2019 Kisqali Hormonal Therapy 11/8/2019 Faslodex (fulvestrant) Targeted Therapy 5/10/2021 Afinitor (everolimus) Hormonal Therapy 5/10/2021 Aromasin (exemestane) Chemotherapy 11/14/2021 Xeloda (capecitabine)
Log in to post a reply

Aug 4, 2020 12:47PM Cure-ious wrote:

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

Log in to post a reply

Aug 4, 2020 02:26PM moth wrote:

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.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
Log in to post a reply

Aug 4, 2020 02:36PM - edited Aug 4, 2020 02:38PM by KBL

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. 

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
Log in to post a reply

Aug 15, 2020 09:09PM - edited Aug 15, 2020 09:11PM by DivineMrsM

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.

found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
Log in to post a reply

Sep 14, 2020 05:13PM zeek_mama wrote:

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.

Log in to post a reply

Sep 14, 2020 06:12PM MinusTwo wrote:

such good news. Thanks for posting.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Sep 23, 2020 12:47PM nopink2019 wrote:

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!

Dx 2008, IDC, Stage IA, Grade 3, ER+/PR-, HER2- Dx 2019, Stage IV, metastasized to bone/liver/lungs, ER+/PR-, HER2- Chemotherapy 8/22/2019 Taxotere (docetaxel) Chemotherapy 9/12/2019 Xeloda (capecitabine) Targeted Therapy 11/8/2019 Kisqali Hormonal Therapy 11/8/2019 Faslodex (fulvestrant) Targeted Therapy 5/10/2021 Afinitor (everolimus) Hormonal Therapy 5/10/2021 Aromasin (exemestane) Chemotherapy 11/14/2021 Xeloda (capecitabine)

Page 1 of 1 (8 results)