Bone Mets Thread
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I will be starting Afinitor tomorrow, and I had my first two injections of Faslodex on Monday. I have been told that I will now be immunocompromised. Husband and I spent 2020 not going out much, had groceries delivered to the car's trunk, no eating out, no visitors due to the pandemic. We are both vaccinated. Do I have to shelter at home again now that I am immunocompromised? Husband really liked having people over this summer. I don't know what to do, and I won't see my onc until Sept 10th. What do you do? I was on Verzenio and Letrozole for 10 months before this. Thanks for your advice.
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In reviewing the literature I haven’t read anything definitive on how long to stay on Xgeva. Currently I’m not having a problem being on Xgeva every 3 months. However I don’t want to be on it nor off it if counterproductive. Next appointment with MO is in October. I will follow up as others have re length of treatment. I’m surprised the lack of standard guidelines on the same.
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woodland- will you be getting a booster vaccine? I ordered a bunch of N95 masks now that they are readily available for non medical people and wear them if I go inside anywhere. I do live in a highly vaccinated city- but, want to take extra care now.
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I haven’t even on Xgeva, but was on palmidronate for almost three years. My MO had me stop due to concerns regarding creatinine levels. When those stabilized (it was due to Verzenio) I asked about going back on it and he said no, not necessary as it stays in the system. I have read three to five years as optimal for bone strengtheners. I would suggest everyone keep an eye on it and ask their MOs as staying on too long has ramifications.
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I will ask my MO if I remember next time. Xgeva is a mononclonal antibody and has a different mechanism of action than the bisphosphonates so I'm not sure how that plays into how long it's effective/beneficial/benefits exceed risks profile
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woodlands, can you message your MO?
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Moth, about how long individual can or should stay on xgeva, the answer depends on several factors, eg status of HR and how long have been on hormonal therapy (bone loss is major long term se of hormonal therapy), menopause status, status of bone Mets (osseous metastases)/ increase the risk of bone complications (fracture), bone health/ age related bone disease such as osteoporosis and early osteoporosis caused by hormonal therapy, etc. so it is a complex equation with several variables. I heard 3-5 years too as Candy mentioned, bear it in mind that xgeva is relatively a new medication. some oncologists watch bone status via bone scans to study the level of bone loss (as well as other things), when the speed of bone loss is high and individual must continue hormonal therapy, then additional considerations will be added to the complex. I was told that oncologists- based on several factors (some listed above) and individual conditions- make a decision to switch to some other bone strengthener treatments -usually prescribe for arthritis/ osteoporosis conditions- like prolia which is also a new medication, aka denosumab.
and you are right, bisphosphonates and denosumab are different, xgeva is a RANKL inhibitor.
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My bone mets seem to be nonactive now, focusing on liver mets. I had monthly xgeva injections for 22 months, most of that in conjunction with faslodex shots. When I switched to exemestane, I continued with the xgeva for a few months. I'm now seeing MO every other month instead of monthly and have switched to every other month for xgeva shot. Always been an exerciser, never had osteopenia, before MBC, nor as of last bone density 1 yr ago. Seems the time varies alot for each of us.
I was told by a nurse that xgeva is same drug as prolia, but 2x the amount. I looked that up here. https://www.drugs.com/medical-answers/xgeva-prolia-compare-3547973/
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Well, the fatigue/weakness/aches are a little better every day, and today I hauled groceries home about a mile and was more or less ok but this still isn't right. I was perfectly fine Monday morning before that injection and now my left hip is aching, my pelvis is "tired", and L5 is hurting some. Also had a few days of squishy tummy and sneezing/runny nose. Usually its heavy pelvis and legs/fatigue on injection night, squishy tummy in the morning and that is about it. Maybe some slight lingering fatigue into day 3.
Im not due to CT scan until mid October, though I had a spine MRI in July that was ship shape. I figure I'll call it in on Tuesday (long weekend here) if this continues. Took the Covid PCR test this afternoon though there may be a reporting delay given the weekend.
My treatment with Xgeva has been spotty - I was on it for five months, then stopped for 4 or 5 due to Covid, then back on it since last November. I was fine when it was stopped; had we not planned to fly to the US in the middle of September, July would have been my last injection for three months. But oncologist wanted to make sure I didn't have any problems while away, so we agreed on this August injection.
Thankful its the weekend!
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Interesting to read about folks experiences with Xgeva. I was originally prescribed Zometa but objected to the IV (a big threshold for me as I have only one decent vein), so my ANP switched to Xgeva jab every 6 weeks. No SEs on it all so far and my ANP said Zometa would have likely given me flu symptoms so I’m grateful for the Xgeva!
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I need to start xgeva (it'll be every three months), but the doc hadn't received clearance from my dentist (just a paperwork issue, thankfully), so I'll delay for another few weeks. May coincide with bloodwork in a couple weeks. I've been really nervous about onj, but hope it won't be an issue.
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Good evening everyone. I recently found out I was Stage IV after an MRI for pain management. In the last three weeks I’ve had the MRI, a CT/PET scan, and a bone biopsy. According to my scan I have innumerable lesions on my entire skeleton. And I was able to view my biopsy results today even though I should’ve waited. Positive for metastatic breast cancer, hormone positive. I was holding out hope that maybe I had some other bone disease even though we knew the odds. I’m supposed to sit down with my MO tomorrow to make a treatment plan. But I’m freaked out and depressed. I’ve read these forums since I was first diagnosed in 2017 but never posted until the last weeks. I’ve read a lot of positive things on here but it’s just really hard now.
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Im sorry you’ve had to join us, katyblu, but welcome to the thread . This is a difficult time, I know, and waiting to speak to the oncologist is hard but hopefully you’ll feel a bit better once you get a treatment plan in place.
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Katyblu - Welcome to this thread. You said your scan mentioned innumerable lesions. Were they described as sclerotic? My initial CT and PET/CT mentioned innumerable skeletal sclerotic lesions (which are healed lesions) as well as lytic lesions. It was the lytic lesions that were troublesome. I’m just throwing this out there in case you are not yet educated in the difference. Many women who experience a hormone positive recurrence in their bones are started on a hormone blocker (pill or shot), cdk4/6 inhibitor (pill) and possibly a bone strengthener (shot or IV infusion). This is not always the case but seems to be the most common first line of treatment. Give yourself some time to grieve and adjust. The beginning is the hardest…the shock, the unknown and general sadness that your future plans have been upended. But many of us do well on treatment even if it’s not a walk in the park (I’m just being real). Hugs to you. Reach out any time you need us. This group has a wealth of knowledge.
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Katy, RK's response was spot-on! And we're here for you!
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Katyblu, I’m sorry you’ve had to join, but you’re in the right spot for support. If you haven’t seen, there is a Zoom meetup on Mondays at 2:00 Eastern for those with MBC. We won’t be meeting this Monday because of the holiday, but it’s a group of great ladies that meet and discuss questions or whatever else comes up. No worries if that’s not something you’re interested in or you need time to process. I just wanted to let you know.
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Welcome Katy, we’re here for you. The next few months are going to be tough but things often get much better once you have a plan. Good luck!
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Katyblu - From my experience, I find that no matter what I read in my report ahead of time, I almost always feel so much better after talking to my oncologist. Hang in there. Lots of folks here for you.
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Thank you for all your responses. I think I’m still in shock a bit and overwhelmed. But I am looking forward to talking to my MO. I do very well with plans and structure so that will help keep me focused hopefully. I really appreciate all the support here. It helps to know there are people out there thriving with MBC
RK, my scan said the lesions are sclerotic. So that means they’re healed? I appreciate your insight!
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Katy, I wanted to chime in with my two cents. When I was diagnosed with mets to my bones and met with the RO, his nurse used the term "palliative radiation". That term freaked me out a bit, because I thought "palliative" and "hospice" were the same thing. They're not. Palliative radiation, although not intended to "cure" your cancer will very probably reduce your pain in the affected bones. It did for me. I had a total of 13 sessions - 3 to my spine and 10 to my hip. It was amazing how much it helped.
Keep us updated.
Carol
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Katyblu I was DX Mets last month so I am new to Mets also this is hard and scary right now. - i and am getting started already with shots of faslodex then some bone strengthened or something they are still figuring me out a bi
I have a lot of mets head to toe and sll in between I have a lot of skull Mets which scares me so many doctor preferred I didn’t need to know
But even with all the Mets doctor says there are treatments to try so she is giving hope which makes me think there is hope for me and you
Knowledge is power as they say - but I am not sure how much power we may gain as we learn more but I do know I will feel some direction and control with some important choices to be made
Would like if you could keep posted and I will do the same as we started with similar first DX ILC large tumor etc just wondering if we will have same treatments and maybe help each other with this difficult beginning to a very scary journey
Good luck - Beth
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sunshine99 I am newly DX last month and within a week doctor has sent a full palitive care team to me at my home
Scaring the crap outta me I have to admit the word palitive scares me
Not sure if this is normal did everyone here get hooked up with palitive right away
It’s nice to hear your radiation palitive two cents
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Well I had my MO appointment today. My mets seem to be concentrated in my vertebral bodies and sacrum, with a lesion or two on my ribs. I am starting I range, Arimidex, Lupron, and Zometa next week. And vitamin D supplements. This is all just overwhelming. I’m only 41 and I’m active duty military. My MO also ordered a brain MRI to just rule out brain mets since I’ve had some chronic headaches. I’m not in a lot of pain but I’ll keep the palliative radiation in mind. Having a plan does help and my MO said women tolerate this treatment very well, sometimes for long periods. But I still can’t get the negative out of my head
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Katy, I was diagnosed at 41 too, I hear you. It sucks and it's hard but your MO is right, ibrance works well for many. Hang in there.
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Hi Katyblu, just wanted to say hello & sorry you find yourself here.
Was also going to say that radiation to bone mets can be for pain relief but can also be done with intent of killing the met/lowering/eradicating tumor burden. I had a small bone met pop up on my thoracic spine which was totally asymptomatic. It was radiated with the objective of killing it.
The first few months of a mets dx are just hard. There's no getting past the negative. It's a sucky situation to be stage 4. It just is
Hang in there. It does get better esp once you see how you respond to treatment and how things settle down. 0 -
Katyblu, I was initially diagnosed in 2017 too, and mets discovered this summer. 41 as well. I just want you to know you are not alone because I know how lonely this can be, even if you have support. I hope starting treatment gives you peace of mind and great results.
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illimae and moth - Thanks! It does help having support from people who’ve already been through this. I’m hoping for better days soon
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Katyblu, I'm glad you will be able to get started with treatment soon. I also wanted to thank you for your service. I hope you felt a little better knowing they will start next week.
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KBL - Thank you! I do feel a bit better with a plan. Now I just want to get it started.
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I totally understand. The waiting is gut-wrenching. I’m sure you’ll be posting how you’re doing. Hugs
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