Bone Mets Thread

Thanks for the info norah2024. Besides the lung inflammation at higher dose of Verzenio I have tolerated the treatment pretty well. I am encouraged from all of you and the other threads with different options if one protocol does not work another one will. I am encouraged also by reading different stories and from acquaintances that have had years of stability even if occasionally a protocol stops working. This encourages me so much

@norah2024 Have they done tests to see if you have any new mutations that might be causing this stubborness? Today I posted some news about blood testing to the clinical trials thread that you might be quite interested in.

Hi all,

I’m looking for some guidance about how progression with bone mets is handled and when treatment changes are made. I’ve been aware that I have bone mets for three and a half years, and have been stable on pet scans (until now). My pet scan results were posted in my patient portal, and I don’t see my doctor until later this week. There are 2 spots that we have watched since my MBC diagnosis that have fluctuated in SUV slightly. However, the latest report shows one of them tripling in SUV value, and the second one more than doubling. In addition, a new met is showing in my spine. It’ s likely that the new met has been there but was not detected on PET scans until now.  I say this because only 2 bone mets have ever been visible on Pet scan, but an MRI done when I was first diagnosed showed innumerable bone mets. Regardless, the report makes me think the cancer is starting to wake up.

Any thoughts about what I should be asking my oncologist at my appointment? I’m currently taking exemestane and Ibrance, and I’m guessing this is enough progression to cause a treatment change?  Anybody have a similar report, and stay on their current line of treatment? I had an adverse reaction of kisqali so that’s out. I’ve also not had xgeva or zometa in over 2 years – it’s a long story but we decided to take a break after the kisqali issues, but maybe that needs to be reconsidered. Would you ask for a specific liquid biopsy at this point?  I just want to make sure I’m informed enough to ask the right questions, and appreciate any suggestions. Thanks so much!

@norah2024 I'm really sorry to hear about any kind of struggle with insurance or lack thereof. I wish I had some advice about that, but I'm sure others are in a similar situation and could offer some. I hope the results were insightful.

@tougholdcrow

I truly thank you for your compassion and your advice.
It brings me great comfort to feel that someone is sharing my struggle with this illness and my difficult journey through it.

@norah2024

Thank you so much for your kind response. I’m so sorry to hear that you’re in a similar situation, and that you’ve been concerned about your treatment for nine months. I truly hope that you’re able to get a good plan in place soon.

I think I’ll also be doing some type of genetic testing to see if a mutation is driving this. I have a BRCA2 mutation, but we need to figure out if anything else has developed. How long did it take for you to get results from the genetic testing?

I really appreciate your kindness. Sending lots of support your way.

@norah2024, I hope that you get your results back soon, and that you get an effective treatment plan in place. I didn't realize that everything would have to be sent abroad, and I'm truly sorry that you're waiting for answers. Sending you my best wishes that you're able to stay on your current treatment.

I have a hereditary BRCA mutation so the plan for me is to start a Parp inhibitor. I did a liquid biopsy to check for other mutations, and those results will be used for future treatment plans.

Hi everyone. I have been reading through all your posts for the last couple of months, and they have given me such hope and a sense of serenity in not being alone with my recent diagnosis of Bone Mets. I just signed up and filled out my profile, and looks like I belong in this little diagnosis thread with all of you. I have also joined the "Porcupine Club" (Kisqali with Fulvestrant & Xgeva). Definitely not a fun treatment, but much more tolerable than chemo! Hate that I needed to join this group, but I am so grateful that you are here! A burden shared is a burden lessened.

Original diagnosis 2022 ER+/PR+, Her2low, mixed Stage 1, grade 2, mastectomy, chemo, AI.

Diagnosed with Bone Mets Feb 2025, no organs.

Hi @newzest4life, welcome and thank you for participating in our community. We're sorry for the reasons that bring you here. We wanted to comment to bump this thread for you in hopes to reach and receive more responses from our amazing members that may help you.

Hi all - Guess the last 6 months have more than made up for the mostly easy first 4 years of my MBC diagnosis. Not only did my cells develop a resistance to Letrozole and I had progression, the 3 months on Faslodex resulted in more progression. My progression has almost 100% been to bone.

So now I am 9 days since my first Enhertu infusion. Am glad to report that I still don't have any real se to speak about. Next infusion 7/15.

Started the radiation to my mandible on Monday 6/30. 3 treatments done and 7 to go. With the holiday and weekends will complete those on 7/14. Interestingly, my MO cancelled my Xgeva shot that had been scheduled for 7/1 after I raised the question about whether it was advisable to have along with the radiation treatment.

Regarding the extensive mets (and now a lytic tumor) in my T12 vertebrae, the progression first showed up on the MRI done in March (when I had to have the lumbar tap for the lesion on the spinal cord at T10 to rule out meningeal disease) and showed more progression on my PET in May. My RO mentioned to me that she wanted me to see a Vascular Interventional Radiologist to determine if radiation should be done first or if it might be better to have kyphoplasty done first. This morning, I received a video call from the Vascular Interventional Radiologist who my RO sent a referral to yesterday. He explained in detail the procedure (needles are inserted into the vertebrae to ablate (remove/destroy) the tumor and then cement is inserted to stabilize the area) and said I could either do this procedure first and then have radiation, or do the radiation first and then the kyphoplasty. He said to talk with my RO as to how she wanted to proceed. I told him that I thought she was waiting to hear his recommendation of the order to do both in. After discussing it with him and hearing the pros and cons (doing his procedure would cause me less issues since radiating first made it harder to insert the needles}, I decided to do the kyphoplasty first (in 2 weeks) and then have radiation to destroy anything the ablation might not have.

On the way home from my radiation treatment, we stopped by the facility where my port was put in last week. With the long weekend, I wanted to make sure it was healing ok. I happened to mention to the Vascular Surgeon there that I was going to have kyphoplasty in 2 weeks. He said he also performs kyphoplasty (figured he did since they are both Vascular surgeons). We had a conversation about why I needed it and he asked who would be doing it. When I told him who, he not only said he knows the doctor, he also said that he was a great doctor and agreed that he would do the procedure first for the same reasons the doctor at my cancer center had enumerated. So, I now have my second opinion! 🙂

On the way home, I realized that I had another question for the Vascular Interventional Radiologist and put a call into his MA. Not even 15 minutes, I received a video call back from the doctor himself. This, to me, confirmed that I am going to be in good hands.

Sorry for the long post but wanted to give you all the facts.

Has anyone on this thread had kyphoplasty done to a vertebrae? Did you do it before or after radiation? What did you experience during your recovery and how long before you felt "back to normal"?

Thanks for "listening". Happy 4th of July! 🌟💥

@going2beatthis

Sorry you need to go through all that for your back. But thank you for detailing it. I wouldn't be surprised if it's in my future. I hope all goes well.

I have terrific back pain too.

Ladies, a question. Do bone mets hurt more with bad weather? I don't remember from 8 yrs ago when met was first found!

Hi everyone! Does anyone on this thread know anything about using Hyperbaric Oxygen treatment for radiation induced either necrosis of the jaw from Zometa / Xgeva or using it for ulcers from radiation? I have a late effect throat ulcer from radiation to cervical spine over a year ago for bone mets. I believe I am also developing jaw necrosis. If you have or know anyone who has used this method for healing can you please re-direct me or share? My radiation oncologist recommended this and I should be starting Monday. I am currently unable to eat solid food since April because of this so hoping for a story of hope if anyone has one!

Hi @iacmelis11, Because it’s rare my RO initially brushed off my unexplained dropping O2 levels when I was hospitalized for a burn about 6 weeks after rads; it was probably the start of pneumonitis. I went through treatment for anemia and pneumonia after chest X-rays were finally done. Eventually a NP ordered a CT since she thought my cough sounded like I had lung cancer. The local radiologists described the damage to my lungs but didn’t know the cause. I googled it and came up with radiation induced pulmonary fibrosis. My RO confirmed the diagnosis and referred me stat to an ILD pulmonologist. The scarring pattern for RIPF is very distinctive so there was no denying it. I also had an almost totally excised 5 mm thyroid goiter remnant regrow to 8 cm in six months in addition to the swallowing pain. I had radiofrequency ablation to my thyroid since it was deviating my trachea and interfering with breathing. The ulcer in my esophagus was lasered by a gastroenterologist during my scheduled endoscopy for Barrett’s esophagus. My pulmo, endo, thyroid surgeon and gastro all believe in radiation scatter damage even though my RO remains skeptical.

The pulmonologist wasn’t surprised about the rare RIPF since my GI issues meant my lungs had probably already been damaged by inhaled gastric acid. That would also predispose my esophagus to damage. My previous goiter which had grown for many years before surgery would make it more likely to regrow after radiation. The pulmo thinks I probably have a yet to be found gene misregulating transforming growth factor beta 1 which is meant to heal injuries but actually causes damage when it continues working when it should stop. I’ve tried to let my RO know that nobody blames him since he is following SOC but he is still defensive saying the only proved contraindication to rads is sarcoidosis. My MO asked my RO to order another brachial plexus MRI due to increased weakening of my arm. He has reluctantly done so and said he will now refer me to neurology. From my perspective surgeons and MOs acknowledge SEs since they treat them and see their patients’ pain but not so much ROs since they refer to other specialists.

According to the studies I have read pentoxifylline and vitamin E doesn’t work as well for radiation damage as HBOT. The low level laser is another option to try if necessary. I still think that radiation is effective and safe for most people but ROs should be more helpful when things go wrong. Needless to say I turned down interventional radiology for an indeterminate tumor in my acetabulum which can’t be biopsied without breaking my hip.

In regards to your ONJ my bc was diagnosed by an oral surgeon since a mandible biopsy showed osteomyelitis. He debrided that part of my jawbone and put me on IV antibiotics to clear the infection. I now have a bridge on the lower left side of my mouth since the bone is too thin for implants. He said that while the diseases are different this treatment has been successful for ONJ. I was lucky to be sent to this oral surgeon after a failed root canal. Dental schools are a good place to find oral surgeons who deal with this (most don’t.)

I sympathize with you since that jaw pain had me on opioids and was just one notch below catching fire on my personal pain scale. Sorry for the long post but those of us who have SEs from rads need to help each other since our problems are often dismissed. Hopefully your current treatment will help.

Thank you both @going2beatthis and @maggie15 for engaging in this conversation. @going2beatthis did the sore at the back of your mouth go away eventually? I will say when I had my 5 days of rads in Feb of 24, I had the predicted 3 week sore throat and then it got better and I had no issues returning to normal foods. This situation I am in now - 1.5 years later - seems to be stumping my RO and MO so I don't think this late effect radiation sore stuff happens regularly. I am wondering if because I had some fungal and bacterial infections if that somehow "brought it on" and in that case I would have to blame being on verzenio for the lack of white blood cells to fight these things off. I did drop down to 100 of verzenio but not until this June. This throat issues started at the end of April. It's such a guessing game meanwhile I can't eat solid foods.