Bone Mets Thread
Comments
-
My MO called and ordered letrozol to start immediately and blood testing and an EKG before starting the Kisqali. She has also ordered radiation for my spot on my spine because it is putting pressure on my cord and she doesn’t want it to get any worse. Also I received my Guardant ctDNA report and it indicates .8% PIK3CA. Do any of you know about this marker and have thoughts? My MO said it meant there might be some differences in my treatment but she is going to start with the letrozol and Kisqali to see how it goes for 3 months. Then more scans to see how it is working.
I am getting nervous. I am also really sick of all of the cancer I have had to deal with in the last 11 years. It seems way too much!
3 -
I have Pik3CA also. I think it’s pretty common.
0 -
@wren44 Did the PIK3CA change your treatment? Just curious. It sounds like the SEs from the PIK3 treatment protocol include spiking blood sugar. I am already pre-diabetic so it is a bit of an issue. I also live alone so not sure how this will work.
1 -
I haven’t had any blood sugar spikes. I don’t know if it changed any treatment plans.
1 -
@eleanora thank you so much for this recommendation! It is very helpful to have the name of a specialist who deals with this type of thing. I have scoliosis and severe degenerative disease in my spine so perhaps a physiatrist could help so I could function better.
My MO has referred me to a radiation oncologist next week for short course palliative treatments. Perhaps that will help.
0 -
@wren44 I am glad to hear that you have not had trouble with the PIK3 treatment protocol.
0 -
@tallnterrific Kisqali is known to drop glucose numbers, so I think of it as a side benefit. I had PIK3 developing in my initial genetic testing, but I've been stable for 2 years and started treatment 2 1/2 years ago, first chemo, then Kisqali and letrozole. My oncologist used the phrase, "long term survival," so I'm assuming everything is under control despite the PIK3 indicator.
0 -
I will not be seeing my oncologist for two months. I am having the radiation and genetic testing, but what happens if they dont find any actionable mutations? I know it's good that I was stable for five years, my oncologist said to me, " Don't worry, you won't be going anywhere for a while but how do they know?
I am not that bothered by the progression, but I would like them to be more certain.
1 -
@sunnidays , I also have no actionable mutations. And I’m also nervous about what comes next! Hopefully I can stay on my current treatment for a long time.
2 -
@tougholdcrow thank you for noting the Kisqali effect of lowering blood sugar! That may be one of the few good SEs I have heard. I am in the middle of a short course of radiation. Between that and the steroid they put me on I am already noticing great relief from the muscle spasms stimulated by my tumor!! That is amazing. Does anyone know how many times in tge course of treatment they can use radiation like this? I start Kisqali in two weeks. I am a bit nervous. I have several indications for blood clots like factor V Leiden, a genetic variant called JAK2, as well as a very strong family history of PEs from clots among my mother and 2 of my sisters. I have not had any clots myself but wondered if anyone here has been advised to go on blood thinners as a result of having MBC and going on Kisqali?
I also learned that I am now HER2+ (or at least low showing - score of less than 10) so does that provide another line of treatment?1 -
For those of you who have had bone mets for a few years have you have bones break including vertebrae? What are all of your recommendations for avoiding bone breaking if it can be done.
0 -
Tallnterific. I haven't broken a bone from mets but it was close. I was told the radiation would strengthen it pronto.
My concern now is osteoporosis from the meds and possible fractures from that.
Xgeva was recommended to prevent fractures and keep cancer from settling in bone again. That was 9 years ago. It hasn't been back. I've had the 1 bone met.
1 -
I've had many fractures (ribs, spine, sternum, shoulder), and they are from a mix of bone mets, osteoporosis, a bone biopsy, and a fall in which I fractured my shoulder and a couple of additional ribs. I took Zometa for about 1.5 years and I have to say, I actually felt like my bones were stronger, and I never had a fracture during that time (2024 - fall of 2025). I had a lot of side effects though, so last fall we put the Zometa on hold indefinitely. It does stay in your body for quite awhile from what I understand. I did progress last fall with more bone mets, but no fractures. I started Xeloda last January and the mets are essentially "healed" for now, and again, I've had no new fractures.
As for prevention, I think things like Zometa and Xgeva can help if you can tolerate it. Also, excercise like walking, dancing, etc. can help. I think diet makes a difference too. Calcium supplements, yogurt, cheese, etc.
2 -
@gailmary and @threetree thank you for your comments. This helps a lot. I am concerned about taking Xgeva because they say they say you have to also add calcium supplements to your diet while on it and I was treated for kidney cancer last years and have had stones many many times over the last 20 years. I cannot take calcium supplements without getting stones and a stone in my one good kidney would be very problematic. I am trying to ramp up my food based calcium intake as that is usually a safe approach. So far my MO has not started the Xgeva but I start Kisqali next week so we will see.
There is so much I don’t know about all of this. So far radiation has given me significant relief. I hope I don’t have any SEs from radiation as many have mentioned in this thread. But I am just grateful for feeling able to move more normally from the pain relief. I am so early in the process. My heart goes out to all of you who have been at it for several years!! Thank you for all you are dealing with and for the support you give us all!
4 -
Re supplemental calcium, I think calcium citrate is supposed to be the form that doesn't wind up sitting in your arteries and kidneys. That's what I take, and it's been OK so far. I kind of do a mix of supplementation and diet. I tried getting all of my necessary calcium through diet, but my labs would still return low calcium numbers, so I broke down and started supplementing too. I eat Greek yogurt every day, but it really doesn't have all that much calcium in it. Cheese has notably more, and to my surprise, I read not too long ago that just plain old milk, like we were given as kids (for our bones) really does have a whole lot of calcium in a glassful. It looks like those 3 glasses of milk a day some of us had as kids, really did do the job. I haven't been a milk drinker in ages! With diet sources, I think you do have to use dairy. Plant foods have some calcium, but I don't think you could ever get enough from just plants. If you aren't completely put off by them, sardines with skin and bones are a real good source too.
Another thing I saw a few years back was how 4-6 prunes a day can help a lot with calcium - not because they contain calcium, but they contain Boron, and apparently Boron helps get the calcium you do consume directly to your bones where you want it. That seems to be part of the issue with calcium sitting in arteries and kidneys - we need certain other elements to help get that calcium we do take in, directly to our bones. I think vitamin K2 helps, and so does Boron. There might be more, that I'm unaware of. The vitamin D I take also has K2. And don't forget the vitamin D - that's a big help in getting calcium to do what it's supposed to do. Walking outdoors helps get Vitamin D and strengthens bones at the same time.
Some years back I read where another poster on here, RuthBru, said that she also does the prune thing, along with dancing and walking, and if I remember correctly, she was doing real well with her calcium situation. Just some more random thoughts here that might be of help; at least I hope so.
1 -
Wow so many thoughts. I've got more. Magnesium is supposed to also be taken with D and calcium. Recently I'm seeing ads for how important to consume plant based calcium instead of crushed rock. It should get to bones better. Supplements use calcium from algea. I've had minimum 2 glasses a day of milk my whole life. Didn't help much. Sounds like there is research to be done. I do a bunch of prunes too. I guess that medicine is that strong.
1 -
@threetree and @gailmary once again you are both a font of information on the subject. I think I heard that celery is a good source of vitamin K as well and here’s a weird way to add magnesium-banana peel steeped in hot water for 5 minutes before bed. Apparently banana peel is very rich in magnesium. You need to cut the ends of the banana peel off and wash off the chemicals and stickers, but it is a nice flavor especially if you add a bag of lemon ginger tea to the concoction. And it is a great sleep aid. Just use a quarter of the banana with the ends cut off and drop it in the hot water.
2 -
Hope everyone is doing well.
I dont know what it is, but the site doesn't seem as active as it used to be.
I was thinking of starting a thread for those with long-term bone metastases, say over five years, and specific issues related to that, but I don't know if it would get much traction.
I discovered that there are a good few luckers, but they do not want to join the site, and I met a woman who is going to extreme measures to hide that she has breast cancer; she has told only one person, her husband, and she won't tell her children or wider family. She used her holidays for treatment because if she took sick leave, her boss would know- very weird.
So yes or no to a separate long-term bone, only considering I know some lukers wont joine and to be fair, people want to take a break from cancer sometimes.
I had the radiation, and a week later, it seems to be helping.
2 -
@sunnidays How long have you had bone mets? Sorry I haven’t been here long as I was just diagnosed in May. I just finished radiation and then had a scary incident where I passed out, stopped breathing had low heart rate and pulse ox. Apparently I had a UTI and then the inflammation from the radiation plus (no doubt) some over doing. I was also sweating profusely and vomiting. Of course I was taken to the ER no stroke or heart attack. But today they are doing a brain MRI to determine if I had a seizure or have brain mets. It really was a shock into this stage 4 level of disease. Luckily I haven’t started the Kisqali but that was supposed to happen next week. I still am nauseous most days since the incident. Sometimes it feels like the treatments are worse than the disease but I guess we don’t want to find out.
6 -
I have had bone mets for 5 years, but I suspect longer. I was stable untill about two months ago, but my oncologist is not sure if I have progression, so who knows what's going on. I had radiation for pain in my hip recently, and that has worked at relieving the pain but exacerbated some side effects I have from Ribociclib.
I can't believe I worked full time for 3 years when I was first stage IV.
I read a great article that I think kinda sums up what is happening; it was by the family of someone who died after many years of cancer treatment, like over two decades their family member didn't die of the cancer, but it was a contributory factor; they died of early onset of frailty, multi-system illness, polypharmacy. In other words, they died indirectly from the treatment and side effects of treatment, as treatment had prematurely aged them and their body could not cope with all the medication; the cancer was a minor contribution.
It's such a brilliant sum-up of how I see things.
4 -
@suniday i can completely see that. I had back pain before the biopsy like any 66 year old might. but it became significantly worse and debilitating after the biopsy. Then the radiation seemed to help minimize that pain back to pre-biopsy but had its own side effects.
The more I read about it all the more it seems that balancing cancer control with toxicity of the treatment is of primary importance. I don’t see myself trying every single line of therapy available just to stay alive a few more months. Perhaps I will feel differently when the effects of the cancer start to feel damaging to my quality of life, but I do not want my life to be about treatment and managing the symptoms of that treatment.
I did persuade my doctor to start me on 400 mg of Kisqali instead of 600 and to let my body get used to that first. She agreed as the recent research just discussed at the big oncology conference in Chicago is saying that 400mg is just as effective and less toxic. I will be advocating for myself through this journey to minimize toxicity and maximize QOL.
5 -
@tallnterrific I so agree with you about preventing so much toxicity in our bodies and having a good quality of life. I am constantly doing the same. Recently, my MO suggested I have a third brain MRI in three years and possibly even twice a year, just in case. (My first two brain MRIs were completely normal). According to all the guidelines, it is not recommended to have routine brain MRIs unless there are symptoms. So, that will be my stand. It’s tough sometimes, isn’t it? Wishing you the best!
Hugs, Pam 💗
4 -
I can remember over the years, occasionally hearing from or reading about someone who would say that somebody in their life who had cancer died, but died from the treatments, and not the cancer. It's such a shame. A world of nothing but trade-offs, and "lesser of evils" type choices.
2 -
The intended effect of the radiation is working, and the pain is about 95% better, so now I am thinking: will I go for a small hike at the weekend? Or maybe I am just having a good week? Pain is so debilitating. It's such a roller coaster
7 -
@sunnidays So glad to hear that the pain has subsided dramatically. Hiking? I say “go for it”! But keep it short, just in case. You are still recovering. Wishing you a fabulous weekend!
Hugs, Pam 💗3 -
@sunnidays I vote for the hike!!! I think we should do all the fun things when we feel good!
@livinglifenow thanks for your support.I just learned I have mets in the back of my skull too, still just bone though and good news is my brain is fine!! Boy I just started this stage 4 stuff and it gets serious pretty fast!
I have been working on a medical thriller novel about breast cancer for a few years now. Everyday seems unintentionally I get more content. I just need a break in the real life medical action so I can focus on the fiction!!4 -
@tallnterrific Sorry to hear about the new mets, but thrilled your brain is fine!?
You are writing a novel?! I am so impressed. Hope you get a break soon to work on it in earnest.
Hugs, Pam 💗1 -
@threetree this almost happened to my mother. They had her on a chemo protocol in the 1980’s that required doubling the dose with each treatment. She went in for a treatment after she had maxed out her dosage and the people administering the treatment didnt realize she was to remain at the prior level and they doubled it again. The treatment destroyed all of her mucus membranes in her body causing numerous blood clots. She was immediately hospitalized for pulmonary embolisms. She survived but it was touch and go for a week or so. She was never the same after that.
4 -
@tallnterrific - What a sad story about what happened to your mother! I guess these things are the "trade-offs" for at least getting some improvements and even "cures", some of the time. Healthcare still has a long way to go, so we just have to accept and go with what's out there. It just doesn't seem fair or right, but I guess it is "better than nothing".
2 -
I think we would put up with a lot of side effects for a cure because if it's a cure, it is a one-off and the end of treatment.
Hope everyone is doing well.
3
