Bone Mets Thread
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hi everyone. I haven’t been checking in lately. Life has been getting in the way. I have a question. Do any of you take the Prolia shot? If so, how was it at first, and also after having it awhile? I am facing starting this and I am wondering how it is going to affect my quality of life. Thanks, GiGi
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Hi gigil
I was given Prolia every 6 month 2017-2022 as I was borderline osteoperosis. I have bone mets in 2022, MO stopped Prolia and prescribed Xgeva every 4 weeks (still ongoing). I understand both meds are from same company. Xgeva is twice Prolia strength. I do not have side effects from both meds.
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@gigil , Denosumab (Prolia) is very frequently prescribed. Like every treatment, the side effects can vary from person to person, so it's always difficult to predict. They also depend on what other treatment you are having. But some do experience muscle and or bone pain, or pain in your arms and legs. They'll monitor your calcium levels in your blood to make sure they aren't too low.
Talk with your treatment team about calcium and vitamin d supplements to take while you're on denosumab.
We really hope you manage the treatment well!
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I have denosumab once a month, I’m not aware of any side effects. It worked really well for me.
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Hi folks. Got thru the Pet scan today with the help of lorazepam 1 mg. Left me a little loopy, but since they did the scan from the tip of my head to my knees, had to have anti-anxiety meds. Glad the did the head, too. Took about 35 minutes. Now the long wait for results. See MO 12/11 unless they upload to my portal, which I was able to get working again.
Hope everyone is doing well, and not too much cold and/or snow.
Laurel
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@irishlove, the waiting period can be challenging, but we want to wish you the best of luck as you await the feedback. We're thinking of you!
The Mods
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irish, I'm glad you made it through your PET scan. Mine is on Saturday. Looking forward to more info on this progression. I saw my MO today, got my Zometa infusion and my Faslodex shots. My genetic testing report came back positive for the PIK3 mutation and a couple of others including the ATM. She said there is a brand new medication that was just approved this week that is an alternative to Piqray. I hear Piqray is a bitch and even my MO said she'd like to avoid it if we can. There are some clinical trials that are available, which I think is a good thing.
We're waiting on the PET scan, then can begin radiation to my esophagus and once that's finished, I can start the new medication.
One of my tumor markers was up. My CEA was 6.64. It's usually around 2-3, although lately it's been creeping up to 4. Liver enzymes are also elevated, but that might be due to all the Tylenol I was taking last week. Despite it all, I feel hopeful.
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@sunshine99 Best of wishes for your pet scan and I hope it is kinder and gentler then expected. With those mutations it does open the door for different options. It seems everyday something new hits the news feed on drugs coming to market for b.c. Oh I just know that you will get back to your normal after radiation is done. I hope the RO is doing the type of radiation this is not widespread. I think it's SRT?? Have you asked? It's not available in my area, but it is in Jacksonville. Less risk of damage to areas that are healthy. You've been on my mind for weeks now. I'm so glad they are finally moving along with your care. You know your body and you knew something was up. Some folks just try to ignore it and obviously it's not gonna go away and more damage is done in the meantime. If you are religious, I will pray for you. If not, you have all my thoughts for a good outcome. Hugs, Laurel
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Laurel/irish, thank you for your encouragement and your prayers. I don't remember what kind of radiation the RO wants to do. I know it's 10 sessions. My insurance company did call me to say they did NOT approve the type of radiation he wants to do. I wrote it down, but, of course, I can't find that slip of paper with the notes. I think she called, mainly to reassure me that these decisions are usually reversed, and she didn't want me to worry or stress about the denial. I thought that was really sweet of her.
I'm hoping "something" will work out with the genetic testing, too. It's considered out of network, but I didn't pay the last time, even though I was told that it might end up costing me 4K. I was actually encouraged by the test results as they showed some mutations that respond to treatment. Now we just need to find a treatment that won't kill me, right? There are also some clinical trials available, but I have no idea what those are about or how those work. I will see my MO again in two weeks.
Again, thank you for your encouragement and prayers. They are truly appreciated.
(((hugs)))
Carol
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Hi everyone. I've been following along for some time and must say I'm a bit surprised. Some of what I'm reading isn't what my doctors have told me. Leaves you wondering what to believe.
I'll start in the beginning. 40 years ago I had a hysterectomy. Dr told me it was important for my bones to take calcium and vitamin D and magnesium. Ok. I took some. Not what was considered enough.
30 years later my dr tested my vitamin d levels because of my aches and pains from letrezole. Way low. 17 ng/mL. 30 to 100 suggested range for average person. Who knew your body needs estrogen to make/use D. Post menopausal/cancer patients should average 50ng/mL when tested. I needed 5000 units a day for that to happen. Yes it helped. I'd highly recommend getting your D levels checked.
5 years later dr told me to quit calcium. Get it in diet. Body won't absorb it from supplements. No problem here. I drink plenty of milk.
I don't remember who told me how much magnesium to take. No doubt I did some online research and yes indeed we need magnesium for bones and more. Little in our soils/diets. There are various forms of it. I keep it under 400iu and settled on magnesium glycinate.
I've Been doing well. 7 years ago a single lesion was found in my humerus. I'm still on faslodex. I had been on xgeva 3 yrs but developed jaw pain so stopped. No progression yet.
Anybody else told to take magnesium supplements?
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gailmary,
My Vit D level dropped unexpectedly while on Verzenio, even when I was taking an oral supplement. I now take 5,000 i.u. sublingual daily to avoid any stomach absorption issues and have my level tested at least once a year. Most recent was 80ng/ml.
I take 400mg Magnesium (Magnesium Lysinate Glycinate) twice daily - it's the dose the bottle says to take. I take it for nighttime leg cramps and it definitely helps. My doctors are aware and no one has advised against.
I do not take any calcium. Was told to stop by my Primary. I'm a big dairy eater.
The jaw pain that you developed…..was it pain only or other symptoms of possible early bone necrosis? Any treatment needed? Did all symptoms resolve when you stopped Xgeva?
Your long term status of bone only is remarkable! I just read an article about Margaret "Peg" Geisler who in 2018 at age 82 was 36 years bone mets only. She's had many more treatments than you, but I Googled her name and I think she's still alive! After meeting her, Dr. Mark Burkard, Univ of Wisconsin Hospital medical oncologist, developed an on-line survey for long-term metastatic survivors to tract lifestyle factors such as diet, exercise, etc.
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@gailmary I've got a hard core 20k unit pill of vit d to take once a week for ten weeks as I was low, although I don't have the figure. I did not know about estrogen helping to make vit d, that is interesting.
Ladies, I can NOT recommend getting this nasty cold going around. I've now got secondary ear and sinus infections like I'm 10 years old again. It is awful, worse than covid was for me last year. Terrible sore throat, cough, low grade fever,packed sinuses and swollen neck nodes. No fatigue oddly enough, except now I've got the bacteria side which is making me sleep a bunch. Not covid, or at least these tests aren't picking it up. Hubs was over it in three days, I'm on day 11. Wearing masks everywhere this winter after this!
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I had a bone scan yesterday and although it's the first one in over a year, I expected it to say "stable" as in previous reports. Wrong. I have new bone mets in every part of my spine, my skull (new for me), glenoid, left femur and pelvis. I've had next to no skeletal pain, so I thought that correlated with no progression in the bones. Also, in my twisted thinking, since I recently had symptomatic peritoneal carcinomatosis confirmed by surgical biopsy, that would be the only important thing going on. (It's enough!) But ok: I have been off any kind of treatment for almost 2 months, so it isn't too hard to connect the dots.
No mention of cord compression, thank goodness.
I have a phone consult Monday with my onc. I think my weekend is going to involve some meditation and maybe lorazepam.
Thank you for listening.
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@jodyj I'm so sorry you have that progression report. I just rec'd my bone scan report tonight and it's bad. The part that scares me the most is skull: right lateral orbital wall and left posterior parietal region. Uptake increase in femur/hips/base of spine. I've been on Zometa infusions since April. Scan in August was looking good, MO said no radiation needed. The soft tissue report hasn't come in yet. Well I have a temp. MO since mine moved and he's another 8 minute man. Appt. is Dec. 11th.
I'll pray for all of us, we sure need comfort and hope.
Laurel
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Oh Laurel, that's not what you needed tonight! I'm so sorry. If Dec. 11 feels too long to wait, is there a support line you can call to reach someone at your cancer centre? Just to touch base earlier instead of waiting a week and a half. That's what I would do!
Like you, I'm a little spooked by mention of the skull mets. I never had these show up before. I know there's a real distinction between these and brain mets, but I'm not too knowledgable about this yet.
Wishing peace, comfort and courage to us all
Jody
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@jodyj I am pretty new to MBC, having been diagnosed in March of this year. I've never had the need to call the cancer center before. I guess I'm shocked as each report showed good improvement, until now. Well, I use lorazepam, so I will get some sleep tonight. Guess I'll call Monday. Thanks for responding and I'll be in your corner if you'll be in mine.
Laurel
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I'm sending love and support to you both, Jody and Laurel. I hope that you can rest this weekend (with whatever meds you need), get hugs from any loved ones who might be near, and that there are good treatment options to stop/reduce the current progression.
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I'm there in your corner, Laurel. We can definitely cheer each other on.
And sf-cakes, thank you so much for your caring words and support. They mean a lot. I'm so glad I've begun to get over my fear of posting to this forum. It feels good to connect.
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Jody and Laurel,
You got some pretty crummy news. I sure hope it doesn't pain you much and that your next treatment works wonders with no discomfort. I am aware of a number of women that had skull mets a few years back. They are still around. There is hope. No reason to give up yet.
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So did either of you suspect any change? Any symptoms at all? I don’t get scans very often and I really wanted to believe I’d know if there was progression, I guess the problem is we get used to our aches and pains. That’s terrible news to have before Christmas (especially), I’m really sorry for you both.
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@jodyj @irishlove I know it’s lousy news to hear but I just wanted to chime in that I’ve had skull mets for some time now and nothing has moved to any other area of my head. Specifically my September head MRI said extensive abnormalities in the calvarium including frontal and parietal bones, clivus and left occipital condyle. I did have a lesion in my left mandible but there hasn’t been any recent mention of that and I’m no longer symptomatic. Enhertu quickly cleared that up. I also have lesions in almost every vertebrae from C2-L1 and of course, I’ve got lesions elsewhere. Honestly, both of my MO’s are more focused on my liver than my bones and I haven’t done anything to especially target my skull. I’m currently on Enhertu (although next Tuesday will be my last Enhertu) and it does give me some peace of mind that Enhertu crosses the BBB. Capecitabine does as well. Hugs.
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@rk2020, that's encouraging info about your Enhertu treatment. Thank you! Provides hope! I can feel myself gearing up to fighting mode, which is something I don't usually identify with. But I want to knock back the new extensive bone mets as well as the more troubling and symptomatic abdominal and GI mets. I've never had chemo before, so I hope I adapt to the Taxol quickly and get to my next stable plateau before long. That's my plan! Whoa, one day at a time, says a voice in my head. Feeling strangely hyper this morning.
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@gailmary, I haven't given up hope at all. Onward to my next treatment (Taxol)!
@margesimpson, Symptoms and high tumor markers seemed mostly connected with recently confirmed abdominal mets, so that's where my attention has been. I haven't had major skeletal pain - occasional aches, but nothing that comes close to the compression fracture pain I had when diagnosed with MBC 4 years ago.
I have never taken bone strengtheners. I was and am concerned about jaw necrosis because of my history of tooth extractions and implants. I'm wondering whether my oncologist will push for that now.
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@jodyj the bone injections were my game changers. I was also worried about the side effects as I’ve a history of tooth and gum issues and had an implant but it’s really helped. I was supposed to get a rod put in each leg, they did one and waited a few months for it to heal (so I wouldn’t need a wheelchair) and the other leg improved enough to not need it with only the needle (it wasn’t as bad as the other leg to start with).
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@margesimpson, I'm glad to know you had a good experience with the bone strengtheners. I'm keeping an open mind about them now, but I'd prefer not to risk the ONJ.
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Thanks everyone for support and information. Like Jody, I'm ready to fight. Of course stuck waiting on MO appt.. Just recalled last visit to office the receptionist said they were very short staffed, so I think I'll just wait for my appt. on Dec. 11th. I took time to compare scans from 8/9 to this one 11/28. Hmmm, this Radiologist did not give in-depth reporting as the last one had done, who was a PHD. No one ever mentioned orbital wall metasisis, let alone increased uptake, so that's the one I'd challenge and worry over. Still waiting on the rest of the report.
As far as symptoms, I'm not the best person to comment on that. I have MS 23 years and so much inflammation in my body that I always hurt, especially nerve ending pain. Today I decided to push against that inflammation with Claratin, Aleve and back on LDN (low dose naltroxone). Huge improvement, so I'm gonna start the LDN back up again. I stopped it because of possible needs for opioid meds, which is a no go when on LDN.
We are helping to raise our 9 yr. old DGD, who lives with us along with her Mom, our DD for 2 years now. I gotta keep fighting for her.
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I hope you both are able to enjoy Christmas (if you celebrate it) without too much anxiety. This time of year can be extra hard.
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@margesimpson Thank you and Merry Christmas to your family, too.
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Good afternoon, ladies. It's been a while since I've posted here, but I read occasionally. I'm so sorry for everyone's progression! I am now also on that train. I get my scans quarterly and had my most recent one on Friday. I managed to make it all weekend without worrying, just kept really busy baking cookies and whatnot. But I was able to read the radiology report today and well, it is not great. I've had sclerotic lesions all over my skeleton since dx in Aug 202, even on my skull and mandible. I am amazed at all you ladies who are not on pain medication. I started an extended-release pain regiment in January 2022 and made it a long time before I ever had to take breakthrough medication. I was doing pretty good on my meds until a month ago when my pain really kicked up a notch. It's all on my left side, down the spine on that side and my ribs and shoulder blade. So I guess I knew there would be progression, but seeing it written down really hit hard. I'm still waiting to talk to my MO about the scan and new treatment, but I'm really upset. I have spots on my left iliac wing, right sacrum, left femoral trochanter, right acetabulum, and my sternum. The femoral trochanter, or whatever, seems to be the worst, which makes sense since sometimes it feels like bones are grinding together as I walk. AND there might be a lymph node involved. I really don't want any soft tissue to be involved!!!
I'm so worried…. And of course, I'm home alone. My DH has work outside the area this week until Friday. And since we're military, our families are far away. It just makes me so sad. I also hurt, I'm sure some of it is my normal pain but exacerbated heavily by the stress and anxiety. I need to switch scan periods so I don't have one right before Christmas! I've just kind of been paralyzed in action as I scour the internet for information.
Sorry for the word dump. I hope it makes sense.
Katy
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Katy, I’m sorry you were alone when you got this news and that you’re in so much pain. I hope your doctor can give you the new plan quickly so you don’t have to wait until after Christmas.
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