Anyone with widespread bone Mets doing well?

[DDIL1]

Anyone with widespread bone Mets doing well? I’m ER/ PR+ HER- Lobular 4 affected armpit lymph. What I thought was several bone Mets on my scans I sent it to mayo and their report was much different. It said concerned for widespread bone Mets. Which now makes me much more nervous. Just wondering if anyone is similar and what and how long you’ve had it and how you’re doing?

Feeling different than I did it first when I thought I had a different diagnosis.

[Hidden]

Hi DDIL1 -

I had a similar "a-ha!" experience recently...

I've had "widespread, diffuse" bone mets for almost seven years (first 6-9 months was just one met on T12). I've been basically stable, with very, very slow, almost negligible, progression over the course of this time.

My similar experience was that I had my secondary at Duke review scans from Dallas in...April? They talked about one vertebra in particular being basically completely covered with mets. I went back to my local onc and asked why their report hadn't mentioned. She said that most of my bones look like this..."mottled" with cancer...so no news really.

Most scan reports focus on a few mets, for reference/comparison. But widespread/diffuse means - at least in my case - "dozens and dozens of mets, too many to count". So what I concluded after that experience was that *reality* hadn't changed but my *understanding* of it was clearer.

I hope this is the case for you, too...

Lynn

[DDIL1 in reply to Hidden]

Thanks Lynn, I can’t remember how long you had bone Mets and what meds. Is your diagnosis similar to mine?

[Hidden in reply to DDIL1]

I've had bone mets for 7.5 years (and just bone mets). The first 6 months or so was only one "met" in T12...after/since that, "widespread/diffuse". I was on Ibrance + Letrozole for a few years, then switched out the Letrozole for Faslodex. I recently stopped the Ibrance and started Verzenio, still with the Faslodex.

I hope that helps...

[DDIL1 in reply to Hidden]

It does help I’m switching to Kisquali I want the best drug for the longest time. I think that will work better for me than Ibrance I’m praying it will anyway

[Hidden in reply to DDIL1]

I also hope it works well for you, and for a very long time!

[life8888]

Yup bone Mets and still here. Able to control them with systemic therapies, so don't panic! Wishing you all the best.

[DDIL1 in reply to life8888]

Thank you!! How long and what meds are you on.

[life8888 in reply to DDIL1]

I was diagnosed last year, so it hasn't been too long 😅. Had total spine Rad to get function back in the legs. Currently on xgeva every 3 months, xeloda/capecitabine, plus vitamin d3 2000 ius and 100-400mg calcium citrate depending on how I feel. Also taking about 100mg magnesium glycinate morning and night to control leg cramps, but this supplement business is really tricky, because taking magnesium inhibits calcium absorption so please be careful! Walked 3 miles this morning unassisted, so the treatment I've been on has really worked!

[Nocillo]

I’ve had bone Mets to entire skeleton since 2015 and lobular to stomach lining for a year. I’m doing very well with no day to day pain. Thank goodness for the scientists who make our medicines! I started out on arimidex and faslodex for 6 years and when my stomach was involved switched to Ibrance and tamoxifen. Good luck to you!

[Cureforever in reply to Nocillo]

Hi NocilloI have bone Mets for three years. Once pet ct showed a liver met that was gone after oncologist put me on chemo pill. Recently I got the primary aggressive endometrial cancer which was operated. It was the early stage. But the pathology report showed breast cancer cells in uterer, ovarythat were removed and abdominal lining. I am very nervous. My oncologist said that it’s very rare. I mean a spread to abdominal. I have m pet ct on Tuesday and am very very nervous. I just read that you live with this for a year.

What treatment are you at? I am on a low dose of Xeloda now, the chemo pill. Hope for new drugs like ErSo and erx41. that may cure us.

Please, please reply to me

Thank you very much

Best,

Marina

[Nocillo in reply to Cureforever]

I’m currently taking Ibrance and Tamoxifen. I have two types of breast cancer, ductal and lobular. It is the lobular in the stomach lining. Check with your oncologist, but not sure a stomach lining issue will show up on a pet scan. Have you had a stomach endoscopy? Lobular tends to favor the digestive system according to my oncologist. Wishing you all the best!

[Cureforever in reply to Nocillo]

Thank you very much for your reply. I have lobular and it did not show on pet ct. I had the endoscopy in 2020. How your abdominal lining spread was detected? I was on Ibrance that stopped working. I also was on tamoxifen alone that stopped working as well. Now I am on Xeloda. How do you manage the abdominal lining spread if it doesn’t show on pet ct

I did not have a gi problems before the surgery that was done laparoscopically with gas After I started have my GI problems, gas, acid reflux, pain in the chest area, etc I blame it on gas that was used during the surgery that probably elivated the gi issues I had before But since I learned about a spread to abdominal lining, I do not know what to think Do you have GI problems?

Thank you so much

Best,

Marina

[Nocillo in reply to Cureforever]

Initially my stomach just didn’t feel real good and I didn’t eat as much as I used to, but I just thought it was age catching up to me. But then I started vomiting just about everything I ate and finally they did a stomach endoscopy and it was covered in red spots, the tumors. Once they switched my medicine after a few months I had another endoscopy and my stomach looked practically perfect. I hope this regime works for a long time! Such a dreadful disease, but I suppose they all are ☹️ I do not have GI problems now. Thank goodness.

[DDIL1 in reply to Nocillo]

I’m happy to hear many people experiencing positive results from the meds. I’m hoping I have a great respond for a long time. Thank you for the comforting story of your journey

[Cureforever in reply to Nocillo]

Thanks for sharing. I am glad you are fine. What meds were you before they switched you on Ibrance and tamoxifen. I was on Ibrance and exemestane as my first line of treatment, then tamoxifen as my third line. Now I am on Xeloda. I will see if the oncologist would switch me to something else. My problems started after the surgery. Thank you so much for your reply.

Best

Marina

[Aquamoron in reply to Cureforever]

Marina, May Tuesdays scan bring good news and clarity for a new treatment plan. ((Hugs)) Sending good vibes and prayers.

[Cureforever in reply to Aquamoron]

Thank you so so much!!!

[Cureforever in reply to Aquamoron]

Unfortunately not. My pet ct was bad. 6 lesions in the liver and lymph nodes in pancreas. I need aggressive chemo abraxane. I am very scared

[Contrarielle in reply to Cureforever]

Good luck, I've just been changed to an IV taxane chemo too. Hope you do wellx

[Contrarielle in reply to Cureforever]

Good luck for your scan results!

[Cureforever in reply to Nocillo]

Thank you for sharing. I already was on Ibrance, Faslodex and tamoxifen. I do not know what are my options now. I am on Xeloda but low dose. I am glad you are doing fine.

Best

[Nocillo]

Good luck to you!

[Contrarielle]

I've had mets in various bones for 6 years now so hopefully you will do well too.