Living with Metastatic Breast Cancer: Bone Pain Experiences?

I'm mBC with 2 mutations plus the BARD1 I had a reoccurrence 8 months after my double mastectomy. I was diagnosed in 2019. Had axillary lymphnodes taken out in 2023. 7 out of 17 were metastatic, metastasis. I'm on leþrozole and Verzenio. I've had a lot of symptoms this year vaginally blèeð nose bleed stomach cramps hand and feet cramps tired no appetite. My potassium is always low. Veŕzinio has been really challenging.

Have you had any radiation treatment on your bone metastases? I could barely walk prior to radiation treatment. I've been on Letrozole and Ibrance. Only diagnosed in December. Next PET is in May and that will determine next course of radiation for my spine, etc.

Ellen, I have mBC with bone lesions too many to count. I have been on Cymbalta 90 mg since I started my journey. 9 years 3 months. It's actually a depression med, but it also depresses bone pain. My psychiatrist started me on 30 mg the first month, then; 60 mg and finally 90mg. I have not ever had bone pain. If your oncologist won't prescribe it, find a psychiatrist. Believe me mBC causes depression.

Thank you all. It is so comforting to talk to people that are going through the same issues. Hope this finds all of your journeys in a good place. Will ask about radiation and Cymbalta.

I had 2 breast cancer treataments 15 yrs ago. I had a clear mammogram last year . Now i am diagnosed with stage 4 metastatic breast cancer. It seems a cell from 15 years ago has spread to my femur. I had a surgery to put a rod in, as a legion formed on the bone and hollowed it out. I am recovering from that and hope to walk normally . Has anyone had anything like this or know about it? The dr said it was rare but i don’t see anything specifically about that. God bless you all in your journey.

I was just diagnosed in December. The breast cancer was found because of the amount of pain I had in my legs, hips and pelvis. I have a tumor in my left femur and my right femur amongst others in hips, pelvis and spine. Orthopedic oncologist did a balance test on me in the office at the time I was told definitely some type of cancer and said rods in my legs weren't necessary at this time. He immediately sent me for radiation and to a medical oncologist after my bone biopsy. My xrays since that time have shown no new growth of those tumors so status quo. My next PET scan will show how well radiation, letrozole and Ibrance have done their job.

Joanie I have a rod in my tibia , too many tumors that needed radiation. I walked out right after the procedure and have never had any problems. My leg feels stronger than before.

Thank you Tracey & rhonda .How long have you both been in treatment? I am in radiation now & will be on meds for the rest of my life. I guess that’s what metastatic means that you have to keep taking medicine to hold back the cancer.

I was told that once it metastasized there is no cure. (diagnosed after it already metastasized to bones) Doctor also said I was looking at least five years and in that time more advances could be made which will prolong my life even further. The medication is supposed to keep it from spreading and keeps us alive. When tests show that they're slipping, time for a different treatment. I did radiation on my legs, hips and pelvis. At that time I was only on Letrozole because oncologist didn't want to add Ibrance until the radiologist was done working on my pelvic area. Now on the Ibrance and they are hoping some of the mets on my spine have shrunk so they can now do radiation on the back. I've only been in treatment since December. I take the medication like clockwork and I'm thankful that I still have years to go.

A friend told me to take Zyrtec or Claritin (yes allergy meds) to relieve bone pain. My doctor said ok so I tried it. I am less uncomfortable now.

Radiation to the bone pain area really helped with the pain. Only one zap needed.

I've had MBC for 15 years and have been on almost every oral therapy. Lessions on the spine have come and gone. It's frightening but I hope it's encouraging to know that you can survive a long time. On the PET scan in March they said my sternum looks moth eaten. Apparently Orserdu is no longer effective. More scans in June. My faith in God keeps me stable. Please try not to panic.

Virginia H this is very encouraging to me. Thank you for sharing you have been here for 15 years. I have been NED since February, but every time I have a scan I start to panic that the cancer will come back. My only hope is in Jesus, and I trust Him with my life.

When my MBc came about it was it my liver and throughout all my bones with one spot in the brain but after chemo treatment, I would take a Claritin tablet for five days and that seemed to help with the bone pain. You might try that.

I am so happy to have found this site. Nice to talk with kind people who are also experiencing this disease. I have been completely overwhelmed with anxiety. No longer able to work and feel so tired all the time. This is such a devastating disease to face.

Hi everyone I’m new to this sight. I have mLBC. My fist diagnosed in 2011 in left breast. My mom and aunt had BC also so I opted for bilateral mastectomy. Then was on aromasin for 7 years . I went t to the ER with abdominal pain they said I had appendicitis. When the went in they removed my appendix which had metastasis in it along with it being on my omentum which is on your intestines. They believe it’s on my colon but they couldn’t get a scope in, they even tried a child scope. I also have it on my spine. I’m on Ibrance, Fasledex and Xgevia. So far it’s working but the Hot flashes are getting extremely bad. I feel like a baby when I tell the doctor. Have nausea, abdominal pain, back pain now headache. Has anyone found anything that helps with the hot flashes? Thanks in advance. God bless all of you 🥰

Effexor has been doing the hot flashes I've only had a few since my 2022

Lynnette, I take Veozah for hot flashes and basically have none with it. The ins co made me try gabapentin first which did nothing then they approved Veozah so that is now covered and it’s great. The nurses need to be familiar with the appeals process to get the approval as not all are. Good luck!

Hi Lynnette, yes I take Veozah and basically have no hot flashes now! It’s often not covered at first. My ins co made me try gabapentin first and when that didn’t work, they approved Veozah and cover it fully. The nurses need to be familiar with the appeals process and what needs to be done. Some are more than others. Good luck!

The experience you're describing with bone pain that comes in waves is something many in this community can relate to. Pain patterns can vary greatly from person to person and may change over time, so connecting with others who understand this journey can provide valuable insights and emotional support. Consider discussing these pain patterns with your healthcare team, as they can help develop strategies to manage symptoms and know what to expect moving forward.