Starting Denosumab when bone mets are stable -advice needed

[Guitarbella]

Hi, I was diagnosed Feb 2021 ( 4 and a half years after my primary BC diagnosis); with multiple mets to my lungs and a small area on a rib, with an axillary mass infiltrating my pectoral muscle. I have been taking Palbocilib and Letrazole and after 2 scans the cancer is currently stable. I saw my SMBC nurse today who suggested I think about starting monthly Denosumab ( Xgeva) injections next month. Apparently it can help “ slow things down” ie progression, and if the cancer in my bones starts progressing before my next CT scan in February 2022, it will have already begun to strengthen and repair my bones. ( At least that was my understanding) . I am wondering if anyone else has started on Denosumab in a similar situation with stable bone mets? I do not like the sound of all the side effects and am keen to avoid it as long as possible. On the other hand I don’t want to be thinking what if… if I don’t start it. My nurse wouldn’t give an opinion just said it was up to me. So I am hoping you lovely ladies can help.

Many thanks

Bev

[blms]

Hi Bev. Yes, I had been on every six months of Prolia (same drug ) but much much weaker than xgeva-which is what they are talking about giving you. When my cancer advanced to my bone is when xgeva began. It is dramatically stronger than its baby sister Prolia. My body adjusted pretty quickly to xgeva but i think mainly because I had been on Prolia already for about 4 months before MBC diagnosis. I have been getting the shot every month on my taxol infusion day but now I am not taking as much taxol and therefore getting the xgeva every 6 weeks. I am eager to go on every 3 months which some ladies online have said works just as well. I do not really have a strong reaction to this drug. Hope this helps. I just got back from infusion and need to sleep!

[Fiercefighter13]

Hi there! I was diagnosed with Metz in my spine, 4 ribs, pelvis and clavicle in July of 2019. I had surgery to remove my ovaries in August, then was started on Ibrance, and Letrozole in September. My doctor had a hard time convincing me to take the Xgeva injections because I was afraid of the side effects. I finally decided to take the injections starting that November. It’s been two years, and I haven’t had any side effects. The combo so far has worked really well. My doctor advocated for the Xgeva and told me it helps the Ibrance and letrozole stave off progression and strengthen bones that the cancer damaged. My understanding is that keeping bones from breaking from the cancer damage, has better outcomes. I know it’s hard to make choices about new medications. It’s a tough road we are all on….wishing you well!!

[Gwennie123]

I have been on Xgeva for 3 years. Shot monthly. I haven’t had any side effects from the Xgeva. I have fatigue from Xeloda. Had major fatigue from taxol . Good luck.

[MadameKa]

I have been on Denosumab for well over three years with no side effects at all.

[wendle3007]

I was diagnosed with mets on spine and pelvis at my first scans. I'm on 4-weekly injections of Denosumab which they started when I started chemo in April this year. Have to take calcium and vit D supplements too. Absolutely no side effects. I have to have a blood test before each one and I now have a nurse come to house to administer injection rather than waiting around at hospital.

[AvidBooklover]

I had one spot of cancer in my hip joint in Feb 2019. Did targeted radiation in April. Started Xgeva after my dentist okayed it. First monthly and then every three months. No progression so far. Also on Ibrance and monthly Faslode shots.

[diamags]

I was on monthly shots for 7 years, now every other month. I've had no problems with it.