Topic: Bone Mets Thread

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jun 22, 2012 04:09AM - edited Oct 28, 2021 03:22PM by moderators

Posted on: Jun 22, 2012 04:09AM - edited Oct 28, 2021 03:22PM by moderators

Jac53 wrote:

I've started this thread after suggestions that it would be useful.

Mod Note: We have removed the original link as it is no longer viable. At one of our member's' recommendation we are offering this link as a resource for you.

https://youtu.be/YpFfLrITfEI


Jeannie. "You only live once, but if you do it right, once is enough." Dx 6/19/1995, 10/15 nodes Dx 2/18/2011, Stage IV, mets, ER+/PR+, HER2- Dx 7/2/2012, Stage IV, mets, ER+/PR+, HER2-
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May 19, 2022 09:44PM rosie24 wrote:

RK, I hope your Mon appt with your MO explains what’s really going on. And I hope the next steps don’t bring big changes, if any. My recent lumbar mri had little useful info, by luckily I also had a ct that gave a whole lot of details. Unfortunately it showed new spine mets above the lumbar region.

I couldn’t get my chemo Mon due to low platelets, 93 yikes. But I did get my first Zometa infusion with fluids. I had been warned about side effects and they sure showed up. 101 fever on Tues and Weds, sleeping a ton, body aches. Claritin and Advil/Tylenol helped but I still feel like I’m dragging. I had an MO appt yesterday and although my morning temp was 99 and I took Advil it was 101 at the appt. I’m surprised they didn’t send me home. Even though the doc assumed it was the Zometa, he wanted to rule out a blood or port infection so I was sent to the lab for counts (platelets back to 225, yay) and cultures. I’ll hear the results tomorrow. Hoping for nothing serious.

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy; Lumpectomy (Left) Surgery 12/3/2019 Lymph node removal Radiation Therapy 3/18/2020 Whole breast Dx IDC/DCIS, ER-/PR-, HER2-
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May 19, 2022 10:06PM gailmary wrote:

rk, I too am sorry to hear of your frustration. I would be one that wants detsils. I've become quite the crybaby and I dont apologize for it. I'll be anxious to hear what your doc says. Best of luck. That advocating for yourself isn't always easy.

I know my doc reads the scans himself and he's confident he knows better cause he has a huge 5 foot screen with the latest technology to examine them by. Ugh. I have to wonder how carefully he would compare when there are many to look at.

Gailmary

Dx 11/25/2008, IDC, Left, 2cm, Stage IIA, Grade 1, 2/12 nodes, ER+/PR+, HER2- Dx 4/13/2017, Stage IV, metastasized to bone Radiation Therapy 5/24/2017 Hormonal Therapy Faslodex (fulvestrant), Femara (letrozole)
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May 20, 2022 02:16PM rk2020 wrote:

Dang Rosie you’ve been through the wringer with SE. I described my first Zometa infusion has hideous but as bad as it was, it was only about 14 hours of hell. Intense but short. I was SO unprepared for any SE because I started the same day she suggested the drug to minimize my long travel time. There was no time for research. After several mishaps in my care, I thanked that MO by firing her. Anyway, I’ve now got 9 infusions under my belt but I still have to get IV fluids and slow the infusion rate to 40 minutes. I no longer take Claritan as it didn’t help me. I tried one infusion last summer without hydration. Nope. Not doing that again.

Gailmary- I used to have an MO who read my scans and would show me the visuals too but unfortunately I moved from that state so he’s no longer my doc. I wish my new MO was proficient in reading scans. She told me at my last visit that if my scans come back and don’t enough information, she has no problem either asking for a second read or ordering a PET or MRI (depending on what we feel is best). I’ll be interested to hear her take on Monday. I probably believe my liver results but I definitely need to understand if my bones are progressing or not. If I’m getting mixed results from xeloda, what’s next?

Surgery 5/1/2016 Lumpectomy (Right); Lymph node removal (Right): Sentinel Chemotherapy 6/20/2016 AC + T (Taxol) Radiation Therapy 9/1/2016 Whole breast: Right breast Hormonal Therapy 1/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 3/10/2020 Faslodex (fulvestrant) Targeted Therapy 3/28/2020 Ibrance (palbociclib) Radiation Therapy 2/22/2021 Other part Hormonal Therapy 9/1/2021 Arimidex (anastrozole) Targeted Therapy 9/1/2021 Verzenio Chemotherapy AC + T (Taxol) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External Radiation Therapy Whole breast: Breast, Lymph nodes Local Metastases Radiation therapy: Bone
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May 20, 2022 08:53PM rosie24 wrote:

Thanks RK. My Zometa was ordered for 30 min plus fluids and the nurse did a bunch of calculations aloud and said, 15 min will be fine for Zometa, 30 min for fluids. Little did I know it made a big difference. I’ll be speaking up next time

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy; Lumpectomy (Left) Surgery 12/3/2019 Lymph node removal Radiation Therapy 3/18/2020 Whole breast Dx IDC/DCIS, ER-/PR-, HER2-
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May 21, 2022 12:10PM sunshine99 wrote:

Rosie, I don't remember if I posted this before. My first Zometa infusion was the hardest with SEs. The second one was a little better and after that I had no real SEs other than fatigue and maybe a bit of a fever. In March of this year, my MO changed my Zometa frequency from monthly to quarterly. I'll have my next infusion on June 22. I wonder if I'll have any SEs after being off for a few months. Hmmm. I hope not. I hope your future infusions get better for you. I'd certainly speak up and tell the nurse how awful your SEs were (no harm in exaggerating if you need to get your point across!)

Carol

my-sunny-side-up.com Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External Local Metastases 5/5/2020 Radiation therapy: Bone Radiation Therapy 5/12/2020 External Local Metastases 5/12/2020 Radiation therapy: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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May 21, 2022 01:38PM rosie24 wrote:

Thanks for responding Sunshine/Carol. I’m 6 days out from my infusion and still needing Tylenol to bring down the fever. With no meds, I was 102 this am. I’m really glad to hear your SEs lessened each time. I’m due for chemo on Monday and hope I can get it

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy; Lumpectomy (Left) Surgery 12/3/2019 Lymph node removal Radiation Therapy 3/18/2020 Whole breast Dx IDC/DCIS, ER-/PR-, HER2-
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May 21, 2022 01:50PM moderators wrote:

Hello, all,

We have organized a new meet-up for people age 45 and under with a metastatic breast cancer diagnosis and wanted to let you know in case you would be interested in participating if this meet-up description applies to you. The meet-up will be run by Julie Kramer, who had a metastatic diagnosis of sarcoma in her 20s.

Under 45 w/ Metastatic Breast Cancer

When: Thursdays at 1pm, ET (first meetup is May 26, 2022 1:00 PM Eastern Time (US and Canada)

Register in advance for this meeting: https://breastcancer-org.zoom.us/meeting/register/...

We hope to see you next Thursday, and please share with others who may be interested in being part.

-- The Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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May 21, 2022 02:05PM rk2020 wrote:

Oh Rosie - you shouldn’t be suffering like this 6 days out. I’m assuming you will discuss your reaction with your MO. Your MO may suggest switching to Xgeva. Read up on it just in case. I’ll include some videos in case you are interested. Both are excellent and worth the time investment. The Dr in the first video talks super fast and the second video slow. I actually increased the playback speed to 1.25. You can’t increase the playback speed if you cast the video to a TV. It only works on devices

https://youtu.be/8AmoeY9ohoY

https://youtu.be/YpFfLrITfEI

Surgery 5/1/2016 Lumpectomy (Right); Lymph node removal (Right): Sentinel Chemotherapy 6/20/2016 AC + T (Taxol) Radiation Therapy 9/1/2016 Whole breast: Right breast Hormonal Therapy 1/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 3/10/2020 Faslodex (fulvestrant) Targeted Therapy 3/28/2020 Ibrance (palbociclib) Radiation Therapy 2/22/2021 Other part Hormonal Therapy 9/1/2021 Arimidex (anastrozole) Targeted Therapy 9/1/2021 Verzenio Chemotherapy AC + T (Taxol) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External Radiation Therapy Whole breast: Breast, Lymph nodes Local Metastases Radiation therapy: Bone
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May 21, 2022 05:58PM anne16 wrote:

sharware, is the saline solution to flush out the r extra calcium? My latest blood work showed my calcium was a little high.

Sunnidays, great question! I am curious to know this too!

This may be a little too personal but for those with extensive bone Mets, do you still have an active sex life? I am afraid to break something considering it is in my pelvis too. But I hate that this is another thing we have been robbed of. I should have had more sex my 20’s and 30’s instead of being a good girl! Ha! So manyregrets…..

Stage 4; 2/16 nodes; ER+/PR+; Her2-; 12 years NED
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May 23, 2022 02:44PM emac877 wrote:

I'm late to the discussion on this but I agree RK2020, you have every right to be frustrated. I used to get PET scan every year but when my old MO retired my new one does a bone scan and a CT every 3-4 months and sometimes an MRI if there is clarification needed. It's hard to keep up on progression with so many different benefits and limitations of each technology. Bone scans frustrate me. They don't differentiate between arthritis, fractures or mets well. I have a large spot in my right tibia that was assumed to be a met because it showed up on a bone scan but on biopsy it was an area of osteonecrosis. I hope your MO has answers for you. They sometimes have pull with the insurance company if they are willing to call and negotiate the issue.

Rosie I'm sorry you hare having such a hard time on Zometa. It seems weird to me that a nurse would arbitrarily run it faster than ordered without a consult to pharmacy or the MO. I'm not sure what the scope is on that. It may be safe in theory but it doesn't take in to account the body's reaction. I would not be afraid to speak up. I hope you feel better soon. I have fewer side effects with Xgeva but it is more expensive. My insurance finally covered it because it's so hard to find a viable vein on me my MO went to bat with them over it. She wasn't going to put in a port just for Zometa infusions but we had to do several infusions and document the multiple IV attempts first to make a case for the switch.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/22/2018 Lumpectomy; Lumpectomy (Right); Lymph node removal Chemotherapy 6/8/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Surgery 12/11/2019 Radiation Therapy 12/23/2019 External Local Metastases 12/23/2019 Radiation therapy: Bone Targeted Therapy 1/7/2020 Verzenio Hormonal Therapy 6/22/2021 Faslodex (fulvestrant)

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