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Topic: When does it get better? (Question from my mom)

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: Nov 8, 2021 12:30PM - edited Nov 8, 2021 01:00PM by booksnbikes

booksnbikes wrote:

Hi All!

My mom is about to start her 3rd cycle of Ibrance, and has been feeling pretty crappy throughout the first few months of treatment. She keeps asking me, "When does this get better? Will I ever feel even half like myself again?" but I am stumbling around in the dark as much as she is. This message board has been a great source of information and perspective (my mom is not on the boards but I often read posts to her), so, I told her I'd pose this question to you fine folks: Was anyone super sick when they started Ibrance/treatment? Did you eventually start feeling any better? What helped?

Some background: While in many ways my mom is doing better than she was, it feels like she is stuck in this revolving door of symptoms and side effects--nausea, vomiting, lack of appetite, low blood counts, fatigue, alternating constipation and diarrhea-- most of which we are able to manage pretty well with the help of her palliative care team, but it's taken a lot out of her. She's lost 60 pounds since May (dx was in August) and basically only has the energy to leave the bedroom for the the living room for a few hours, and then back to the bedroom again. She was very independent before all of this, and it's been tough for her mentally to have to rely on my brother and I for most things now.

She hears stories of others carrying on with their normal lives while in treatment (such as her brother, who has prostate cancer) and while she is happy for them, it makes her feel like there must be something wrong with her that she can't do the same. The nagging thought, "Am I always going to be this way?" is becoming louder and louder lately, despite the fact that she is feeling better, even if only incrementally so.

The good news is that we know the treatment is working, even after a dose reduction and a long break between her first two cycles. She had her first PET scan 2 months into treatment (1 month earlier than planned, due to a second opinion we got at the nearby teaching hospital), and it showed significant shrinkage in all of her mets, which were extensive. Her oncologist was practically jumping out of her seat to tell us!

So, my mom wants to stay the course and is heartened by this latest news, but also is looking for a little hope that she's not always going to feel this way (even knowing she'll probably never feel 100% like she did before cancer). Any stories to that affect would be much appreciated! ❤️


Daughter (38F) to MBC Thriver (69F) diagnosed August 2021 Dx 8/2021, IDC, Left, Stage IV, metastasized to bone/liver/lungs, Grade 2, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole)
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Nov 9, 2021 01:01PM aprilgirl1 wrote:

Hi Booksnbikes, for me, the first few months were hard but in my experience it got much better! It's great that the scan shows that treatment is working, even after 2 months! As my treatment started working, I started feeling better - and I also had a dose reduction of Ibrance due to low white blood counts. Thank you for helping her (and thank your brother, too!). I have been on Ibrance /faslodex for about 2 years and I do feel almost normal. I work, exercise and enjoy life. The reality of a stage IV dx is tough and hit me hard at first but....trying to thrive while I can! I am now 57 so was dx as stage IV at 55.

recurrence in distant lymph nodes (superclavicle/mediastinal & more)" You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass Dx 11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2- Chemotherapy CMF Radiation Therapy Whole-breast: Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Surgery Lumpectomy: Left
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Nov 9, 2021 01:50PM moth wrote:

I'm not on ibrance but I was quite ill when I started treatment and got very weak during the summer of 2020. I was in bed a lot; even sitting was tiring. There was at least one appointment with my MO that summer that I strongly considered asking for a wheelchair because I was so weak. I couldn't drive myself because I was constantly so tired and zoning out.

(And before this I was super active. full time school, clinical rotations, plus doing agility with my dogs)

The thing I learned was that "getting better " was going to be hard and require active participation from me.

It only takes a few days of inactivity for muscles to start to atrophy. It's crazy how fast we lose strength and I also think that having cancer is metabolically difficult so it, plus the treatments, plus periods of inactivity, can all make us weak very quickly.

Baby steps. Walk around the house. Go down the driveway and back. I remember cooking with a chair because I'd get so tired standing by the stove that I needed to sit down. gradually the muscles and endurance came back and soon I was walking with my dog again, and eventually doing zumba etc.

To get back.to normal will require a plan almost like training for a big running competition. You can't expect it to be quick and it won't happen by itself.

There is a new book out called Moving Through Cancer by dr katherine schmitz which might help you set up an exercise and strengthening plan. Or see if your insurance covers a PT or kinesiology referral for rehab.

Beat wishes

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, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Nov 9, 2021 01:53PM SondraF wrote:

I was a mess at diagnosis due to one particular met in my sacrum that made it difficult to walk and use my right leg and eventually put me onto crutches. Most of that Christmas (2 years ago) I was trying to stay on top of the pain it was causing, I was weak and tired a lot of the time and adjusting to the diagnosis and the mets. But slowly over time the radiotherapy to that spot worked and the drugs started working and my two month scans were exceptional as well - the oncologists were thrilled at the response. I would say it wasn't until April I felt more like my old me (which I hadn't been for three years and attributed to a bad work situation!) and not until June when I had regained a lot of lost strength.

What I would say about the fatigue is to get it moving. I dont care how short the walk is, but exercise can really help manage the mental and physical aspects. Most days I have down time at about 430 for an hour and while I can feel bone tired and like I need a nap, I don't and I make sure I focus on one small thing to get up and do. I do that and inevitably there is something else to be done and all of a sudden I forgot I was tired. I walk every day because losing muscle is the worst thing you can do, and I do other exercises as well throughout the week. Even when I was on crutches I focused on what I could do, then tried to do a little more the next day. I started at a five minute walk, but it was a goal to focus on that I could clearly measure improvement day by day.

Give it some time as everything is still new, but yes, eventually she will feel a bit more normal.

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole) Surgery Prophylactic ovary removal
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Nov 10, 2021 09:20AM booksnbikes wrote:

Aprilgirl, Moth & Sondra-- thank you so much for sharing your stories and what helped you too! I read your posts aloud to my mom and she immediately said, "Oh, I'm sorry they all had to go through this too, but I feel so much better knowing I am not alone." ☺️ She's also decided she wants to set one movement goal for herself each week to try and get stronger, and we're talking to her supportive care team about in-home PT.

Thank you all again. Your replies have really helped.

Daughter (38F) to MBC Thriver (69F) diagnosed August 2021 Dx 8/2021, IDC, Left, Stage IV, metastasized to bone/liver/lungs, Grade 2, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole)
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Nov 10, 2021 08:28PM aprilgirl1 wrote:

Booksnbikes - I am so glad you read our posts to your mom. She is not alone. Finding people on these boards that are on the same meds or dealing with this same stage IV reality has been so important and helpful to me, and also gave me a tremendous amount of comfort in the beginning when I was truly terrified and exhausted. Like Moth and Sondra wrote, baby steps to start but if you mom can keep moving it will help her so much with feeling better and gaining strength. Keep in touch and let us know how you are all doing, ok?

recurrence in distant lymph nodes (superclavicle/mediastinal & more)" You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass Dx 11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2- Chemotherapy CMF Radiation Therapy Whole-breast: Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Surgery Lumpectomy: Left
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Nov 12, 2021 04:03PM - edited Nov 12, 2021 04:03PM by booksnbikes

Aprilgirl- Thanks so much for your kind words. ❤️ Will definitely keep you updated. These boards have been such a big help to me, from both a practical and an emotional perspective-- I find myself turning to the Ibrance board for just about every question I have about my mom's treatment (though of course, I never post there since I don't have MBC myself). I am trying to encourage my mom to give the boards a go as well, since everyone here is just so lovely, and I think it would help her feel less alone. I'm hoping she'll join soon.

Daughter (38F) to MBC Thriver (69F) diagnosed August 2021 Dx 8/2021, IDC, Left, Stage IV, metastasized to bone/liver/lungs, Grade 2, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole)
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Nov 12, 2021 04:46PM exbrnxgrl wrote:

A lot of us are in your mom’s age group too so that may maker her feel more comfortable. Is your mom in SF as well? I am in San Jose.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Nov 14, 2021 03:07PM booksnbikes wrote:

exbrnxgrl - Howdy neighbor! My mom is in Davis, which is where I have been since August to help her out, but I think Davis-San Jose still qualify as neighbors. ☺️ We're occasionally back in SF for my mom's appts at UCSF (where she's been getting a 2nd opinion), so my (stupidly expensive) apartment in the city just serves as a crash pad for those visits nowadays. I think my mom is starting to warm up to the idea of checking out the message boards, so hopefully you'll see her on there soon.

Daughter (38F) to MBC Thriver (69F) diagnosed August 2021 Dx 8/2021, IDC, Left, Stage IV, metastasized to bone/liver/lungs, Grade 2, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole)
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Nov 14, 2021 05:35PM exbrnxgrl wrote:

booksnbikes,

You are a year older than my older dd, so definitely lots of age group peers for your mom as well as many other wonderful women of a varied ages. We lived in SF when we moved to CA but that was over 30 years ago. Older dd also lived in the city for quite a few years. I’ve had all of my tx at Kaiser Santa Clara with second opinions at Stanford. All the best to you and your mom

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Dec 22, 2021 04:58PM booksnbikes wrote:

Hi all,

I said I'd update you all on how my mom was doing, so I figured I'd let you know that she has been doing really well the last month or so! Her palliative care team put her on a steroid for a bit in November, and the changes were pretty amazing to watch! All of a sudden she could eat better than she had in months (I even caught her going to the kitchen at 10pm to get some leftover Thanksgiving pie 😂) and the nausea became basically nonexistent. She also switched from Ibrance tablets to capsules, which seems to have helped too. She started home PT and is continuing to build back her strength and stamina, even going on a walk around the park near our house the other day. And her tumor markers are about a third of what they were when she was diagnosed, so lots progress in all directions!

Thanks again everyone for sharing your advice and experiences too. I think that helped her a lot mentally as well. Wishing everyone a joyful holiday season. ❤️

Daughter (38F) to MBC Thriver (69F) diagnosed August 2021 Dx 8/2021, IDC, Left, Stage IV, metastasized to bone/liver/lungs, Grade 2, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole)

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