Bone Mets Thread
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Oh Shana - I so feel for you! Mine is spine, neck, ribs, shoulders, and sometimes hips, knees, and ankles. I too have weakness and unsteady feet, and occasional tinnitus and headaches. Also get occasional nausea and less so the big D. I think most of it is side effects from the drugs - especially since you and I have some similar stuff going on. Mine does get a little better at times, then a little worse, etc., but there is always something there. If I miss a day or two of Verzenio I feel much better. I always feel worse the first week or so after the faslodex shots (like now), and feel really, really bad after the Zometa. Tylenol helps some but I'm rather afraid of the other alternatives for pain, e.g. nsaids, opiates, etc. I guess I'll just keep trying to put up with it, because I'm not sure there is really anything out there that would work better for the cancer at this point. How are your electrolytes? I have had a low sodium/low potassium problem ever since I started cancer treatments. They used to give me IV's fairly often. I've managed to keep the potassium up with a bottle of coconut water and a banana every day, but I have not yet conquered the low sodium. I have gotten the sodium up a bit though, and I have to say, it does seem to make a difference with some of the aches, weakness, and headaches. If my sodium is up higher, that stuff is noticeably better, but not gone. Just a thought, that you might want to monitor what your electrolytes are like when they do your labs.
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@shanagirl; @threetree; @chicagoan I am coming up to 6 months after extensive dental treatment. My onc, and more recently her locum, are pushing hard for me to begin denosumab/xgeva/prolia. They are seriously downplaying the potential side effects and the stock answer is that none of their patients have had onj or an atypical fracture. Because, in a lot of respects, I seem to be a bit of an outlier I have concerns that I would either end up with onj or the atypical femur fracture and so am pushing back for need of it now.
I have also been told that this drug can help slow bone mets but from the reading I have done there is hot debate about this claim - noting that i am talking about reputable studies and analysis of published studies.
I have concerns because: I only have sclerotic (osteoblastic) lesions (innumerable) and I understood these drugs impact directly on osteoclasts not osteoblasts - indeed the only studies that mention its effects on sclerotic mets are the studies on prostate cancer; I don't have bone pain; my dexa scan of 10 months ago showed a bone density of .08 in hip, but numbers of 4 plus in spine and non-dominant forearm and I have read studies that suggest it is not helpful if you are not osteopenic or have osteoporosis. Subsequent bone scans don't indicate bone destruction/reduction.
To be clear, to date I have done everything my onc team have requested - from treatment to exercise and restrictions - not allowed to do resistance training (and i love resistance training - it is my zen place) because of sternum lesions. I am getting very tired of the gentle, and not so gentle bullying I am getting about this drug. Unfortunately, it is not so easy to change oncs as I am in a rural region.
I have full bone scan and ct scan in 9 days time and onc appointment in 2 weeks so will prepare once again to "discuss" why this drug is necessary for me. Thanks for bearing with me.🙄
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@shanagirl Two weeks seems a long time to talk to someone in your oncology office given how badly you are feeling. Does your MO have a physician's assistant you could speak to in the meantime?
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shanagirl I’ve had a similar experience starting a few weeks ago and went to the emergency but there was nothing new (but my cancer is currently active).
It’s motivated me to finally organise my disability parking permit and register for disability support.My MO reminded me to use pain relief and rest- sounds crazy but my husband often has to remind me to take pain relief or tells me to go lie down.
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@malleemiss251 - My mo tried to push Zometa on me too. I had ongoing dental issues initially and kept pushing it off whenever my onc asked me about starting it.
I remember having read about bisphosphonates about 12 years ago and that even back then, it was mentioned that over time your bones could become more brittle. After hearing what others have experienced with ONJ and other bone issues and knowing what I do from a long time, I decided not to go on Zometa. My onc finally gave up on asking me about starting it after about 1 1/2 - 2 years into my treatment. She never suggested going on anything else. For me, I am glad I made that decision.
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@going2beatthis. at my very first appointment with my onc she said she was not going to push denusumab and that she was flexible about it - my choice - she even noted it on the drug ino pack she handed me. I suspect now that she was "flexible" about it then cos she thought I would soon be in hospice. However, I seem to be surprising a lot of oncs and now they are seriously pushing the stuff. The nagging about and stress of confrontation about it is really taking a toll on me - stupid, I know - but it is really eating at me. We will see what happens after scans and appointment.😀
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malleemiss251,
I can identify with the pressure you describe from your oncologist re starting a bisphosphate. I refused it when I was stage 1, because of the risks, but when I was diagnosed stage 4, I felt less certain about refusing it. I did however see a periodontist before starting, at the urging of a dental hygiene friend, and I'm so thankful I did because the periodontist found symptomless deep pockets around 2 implants. I've continued to see the periodontist every 3 months and have been able to keep my implants stable and rest of my mouth healthy.
I think I need to trust the concerns about risk that have come up in my mind again. I've never had much bone pain and if my next bone scan is stable on my new treatment (Enhertu) why not stop the Zometa? I too have had some difficulties with my oncologist in the past ("it's our protocol" has been a frequent answer to questions) so figuring out what to say and how to say it so I'm heard can be a challenge for me. I think I will ask about getting a dexa scan.
Please let me know the outcome of your discussion with your oncologist.
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kbl did you have muscle aches at the beginning of ORSERDU? All of a sudden after very little pain I am having muscle pain in my shoulders and sides. Not sure what I can take with this med.
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About Zometa versus Xgeva, there are some differences:
- Zometa is a biphosphonate, Xgeva is a monoclonal antibody. They do have similar side effects, however Xgeva is somewhat less likely to cause osteonecrosis of the jaw. Not sure if the risk of femur fracture is greater, lesser or the same with Xgeva.
- Xgeva is much more expensive than Zometa which could be a factor influencing which drug doctors choose for their patients.
- There are articles right here on BCO indicating that Xgeva is slightly more effective at reducing your risk of bone-related problems from MBC. Here is one link: . I had also read somewhere and I can’t remember where, sorry, that Xgeva was more effective at preventing cancer cells from taking up residence in the bone, so it does a little more than just strengthen or harden the bones. If I find my source for that I will come back and add it.
4. Xgeva can be more convenient since it is an injection versus an IV infusion.
As for lessening reaction to Xgeva, yes I was also told by my nurses to drink a lot of water on the day of my injection and Claritin was suggested also.
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Thank you @olma61 for you zumeta/xgeva post. I was wondering the difference. I'm on xgeva at the moment, and one oncologist told me to switch to zumeta, but another one told me to reduce xgeva to 1 shot every 3 months rather than ones a month (as i took it for 2 years already). I will look at the link in your post, and think I will stick with xgeva, with the reduction. I like all the info and help i found in this forum!
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olma61 - Thanks so much for the Xgeva-Zometa comparison list. Didn't realize how much the cost factor plays into this. I'm going to read about monoclonal antibodies too. First I ever heard of them was re Covid. I just don't like the idea of switching drugs a lot, but I am going to investigate further. I just don't know that Zometa was ever really ready for prime time and makes me nervous about the medical industry pushing things out there that maybe shouldn't be, but again, I just don't know enough about any of this right now.
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And then there's this research article, which says Xgeva is more likely to cause ONJ than Zometa... good grief!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8218501/
One thing I recall reading a couple of years ago was that since Zometa stays in your system for a long time, it was recommended during the pandemic, so that patients didn't have to come in as often (usually given every three months vs Xgeva monthly). Also recommended for patients living father away from a medical center.
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@threetree youre welcome and another interesting fact about Xgeva, its the same drug as Prolia (commonly used for osteoporosis) but in a higher dosage.
@amel_83 yes, my oncologist also put me on quarterly Xgeva before we dropped it entirely. It’s a good compromise if you still want the benefit. If my dental situation was better, I may have stuck with quarterly Xgeva shots
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S-Fcakes and Olma61 - All very interesting stuff and thank you very much! I'm going to keep weighing all of this and then I will at least feel like I have some information on which to make a decision. I did decline Zometa for a couple of years when I was still stage 3. The onc I had then was sort of shaming/scolding to me about not taking it, and when I got fractures, she'd say stuff like, "Well, since you won't take…." and I'd just tune her out, because who knows? You can still get fractures with these drugs. Maybe, just "maybe" fewer fractures, but it doesn't save you from all bad bone issues, as she seemed to think. The onc I have now is much different and he said that while it is their protocol and they would like to give me "every opportunity" to beat this, etc., he said he absolutely understood my concerns about these drugs and that if I decided not to take them he would completely understand and respect my decision. Interesting, after hearing him say that, I decided I would go ahead and least give it a try. The onc who was considerate and respectful got me on board (at least for now).
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Shanagirl I am sorry you are having so much trouble. It is good you have a doctor’s appointment coming soon. Meanwhile rest and hydrate and find as much enjoyment as you can over the holiday. If you really feel terrible send your onc a message and ask if maybe you need lab and should be seen
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@jen1, i'm late to this discussion. i hope you are in the same good space as in your update post. i just recently experienced my first compression fracture in L1 vertebrae, which is the only spot so far that is active mbc. i woke with a jolt in the middle of the night 12/31/23 and was like "how the hell does one 'throw their back out' while they're sleeping?!" long story short, the way i learned about it was via a CT scan in my regular annual testing. once again, i caught it in the report because i read the damned thing completely, unlike my goofy mo. it was finally addressed on 5/9: i had a kyphoplasty + spine jack implant + radiotherapy ablation. the pain before the procedure had elevated to nearly unbearable, i'm still very sore, but it seems like the pain is from the procedure and not the pain that was coming from the L1. there are no words for the gratitude i have for this community in that i can always find one of us whose already been down the road i'm on. blessings!
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Thank you edge of no return for the response.
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Hi Ladies I wanted to give you all a update and ask more questions.
I had appt with my oncologist a couple of weeks ago. She mentioned that testing was done and I have a genetic mutaion. I think she said it was PIK3CA. She said that we might have to change medications . She did not go into it, she is happy that the Verzenio and flasodex seem to be working, however she will see how my next scans are and my tumor markers, are. I have read a little bit about this mutation but then I got very depressed and stopped reading. She just said that this mutation makes the cells grow faster but she is keeping everything the same but wanted me to be aware. She kept saying that I was responding beautifully to the verzenio and flasodex. She did not want me at this time to worry about the mutation right now we just will take it one step at a time. Do any of you ladies have this mutation?
I am having more and more pain still unsure if its from the medication or the bone mets.
edge of no return: Thank you so much for your input.
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@shanagirl its so hard to know just WHICH drug is causing the issues, or if its possibly referred pain. But I believe you only just started Fas and Verzenio in the last three months or so? The drug concentrations may have finally hit a point in your system where they have leveled off and here you are in pain land. Faslodex was giving me muscle pains throughout the month, they never really went away, so I was rather glad to move on (temporarily) from that one.
You may want to ask about palliative care services (no, its not hospice! :P) who can help you find a relief regimen (drugs + alternative therapies) that works for you - it takes time to find what works so best so start now. Thing about pain relief drugs is that you need to keep a certain amount in your system to control the pain, so if its constant pain, a tylenol here and there won't really cut it for long term management. I hate taking these opiates right now, but if its what I need to function then Ill take them (Im about ready to start weaning off, though). Some folks like to use massage or acupuncture, yoga or whatever to help as well - Im cleared to use a TENS on my body but not near the tumor, that helps immensely and is a fabulous distractor from the other pain going on. Some MOs are ok with those, some arent, I would ask, but it works great for my muscle and nerve pain.
Exercise is important too, although lord knows that is the last thing you want to hear when you are aching away. The best I can manage is light arm weights and frankly I do feel better after a little 'workout' and getting the endorphins going. You want to be careful about laying about too much and getting deconditioned - Im very deconditioned right now and am also unstable on my feet, etc and it worries me. I know there will be a lot of work to come to get reconditioned too, better to not lose it in the first place. You could always start with finding a senior-focused chair workout (cardio or yoga even) on YouTube and commit to ten minutes at your speed and see how you feel. No major commitment and try from the safety of home to start. I like Senior Shape Fitness for her wide range of options for all skill levels (and she is so soothing) but there are loads of options on there. Try moving a bit (motion is lotion and all haha) to get those joints going and see if that helps divert the mind as well. Do you like water exercises or gentle swimming?
And to the comment upstream about keeping electrolytes up, definitely do that, add in some gatorade possibly. Ive had good success with liquid hydration supplementation (as seen in the Mel thread!). If anyone knows how to get sodium up a little faster, Id love to know. There is a fab pizza place near the hospital that does a great pizza that is soooo salty but it didn't seem to move my marker at all :P
No reason to live in pain, though, pain just makes everything more difficult/worse and increases stress on the body.
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@jen1, I have the PIK3CA mutation as was found with my recent spread. There is a recently FDA approved drug called TRUQAP (can't remember the long name) and I've been taking that. I had been taking Ibrance, but that failed. There's at least one TRUQAP thread.
I'm glad your MO seems to be on top of thing. Are you on Ibrance?
Carol
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I have this mutation but I’m doing ok on Ibrance so far
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I know the words palliative care can be scary.
I went to see a palliative care doctor after being recommended to do so by an occupational health doctor that my employers sent me to see.
It has been the best thing ever, my oncologist is excellent but is very busy the palliative care doctor spent an hour with me and went over everything and explained why I might be better to not have radiation for pain at the moment and has put me on a low dose transdermal patch for pain and explained in detail why its the best approach.
I am going to join a gym and get a better exercise program going as I had sort of let that slip.
I honestly would recommend them to anyone
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I immediately asked for palliative care from the get go. The doctor is great and got me on antidepressants, which were a game changer. Also Ativan for sleep and anxiety as needed. And Ritalin as needed for fatigue. And a referral for therapy.
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I had also asked for pallative care. They sent a hospice RN. Pallative care was not available either in our area or due to our insurance. I was told it was the former, but suspect the later. Well it's available now, and I have a wonderful RN pallative care nurse that comes to my home. She listens and gives great advice and prescribed meds that help with horrible bone pain, that my GP was not allowed to prescribe (insurance again??). Fear of lawsuits??? Who knows.
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@irishlove , that’s so great that they come to your home!
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Has anyone felt like this?
After seeing the palliative care doctor the hip pain stopped is it some psychosomatic thing every time I seek medical help for pain the pain goes away maybe it is because I had my Zometa infusion 3 weeks ago and it is supposed to help with bone pain.
I now have the transdermal patches and I do not know what to think they are the first opioid medication I have been prescribed so I dont want to use them unless I need them.
I am afraid on of getting addicted my husbands thinks thats funny and says, you are in your 60s and have stage IV cancer who cares if you get addicted?
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@sunnidays, for years I had problems with my left hip, it ached fiercely at times - I get diagnosed with cancer and I haven't had an ache in almost a year. My friends have said the same thing to me about opioid addiction - and then laughed when they realised most of the opioids don't work for me.
I do know that I get so stressed about the scan process that my muscles are tightly clenched for days beforehand. Then I get pain as the muscles relax. My scans are generally a disaster, process wise - either nurse destroys a vein, strips me mid scan in an open room or contrast leaks everywhere. Scan results so far have been good - but I am wondering what disaster will happen this morning when I have my next set.😱
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@sunnidays my MO told me that people who are afraid of getting addicted are the ones that don't get addicted. I am thankful for opioids for the days I need them because they work better than tylenol. A lot better. And it's nice not to have chronic, severe pain for a while.
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