Researching what I can do for my bones to help. I have had my fill of zoledronic acid and zometa. Currently on a break from them. My Onco. went 2 years on, then 3 years off, then 2 years on…to preserve my jaw. I am current of for another year and a half before she will consider another round of treatment in this area.
It has worked but I currently have 3 spinal fractures.
I have seen lots of you are taking Calcium and Vitamin D - my oncologist is not a fan of supplements or natural remedies but we "barter"; some stuff I try some I do not. I want to try but would like to know what doses everyone is taking.
I am currently being treat with AC (Red Devil!!) and have convinced her I can take high dose Melatonin - she agrees for insomnia but I researched the benefits for cardiotoxicity and other side effects.
Looking forward to some informative feed back that I can take with me Wednesday!
Thanks a bunch. Cheers,
Tammie
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Despite my many mets, including my spine, my bones are relatively strong. I am lucky because my spinal mets are mostly osteoblastic (growths) not osteolytic (holes). I attribute this to my taking tamoxifen for 5 years after my early diagnosis, and for two years after my MBA diagnosis. In fact, I took 40 gm of tamoxifen daily for the first year before my oncologist said that the Saskatchewan formulary didn't allow it. It became apparent in the second year that 20 mg of tamoxifen was not enough for me.
I based my consumption of 40 mg. on the following research study. I'm still waiting for a further paper from this European group. The link is: frontiersin.org/articles/10...
Front. Pharmacol., 31 March 2020 Sec. Drugs Outcomes Research and Policies Volume 11 - 2020 | doi.org/10.3389/fphar.2020....
Integrated Data Analysis of Six Clinical Studies Points Toward Model-Informed Precision Dosing of Tamoxifen (by Lena Klopp-Schulze, Anna Mueller-Schoell, Patrick Neven, Stijn L. W. Koolen, Ron H. J. Mathijssen, Markus Joerger and Charlotte Kloft)
Thank you so much for all your very informative posts. I have reviewed my most recent MRI and PETCT but can't seem to find if my bone mets are osteoblastic or osteolytic. What am I missing?
My earliest (2019) CT Scan mentioned, "New sclerotic lesions throughout the thoracic and upper lumbar spine compatible with osteoblastic metastatic disease."
My latest CT Scan (2023) similarly indicated, "Innumerable sclerotic lesions throughout the spine, shoulders, sternum, ribs and pelvis are similar to prior consistent with metastatic disease. Stable compression fracture of the L1 vertebral body with 25-50% loss of height. Stable coarse calcification posterior to T9. Background degenerative changes. Bilateral L5 pars defects."
I think, though, that a report in between these two suggested that there is an osteolytic lesion in the midspine, but, perhaps the radiologist was noting the L1 fracture (the result of my falling through a ceiling many years ago)??
We seem to be very fortunate in that our health system in Saskatchewan provides very detailed scan reports directly to our individual accounts.
Thanks for sharing Cindy! My loss of height is at 25% and Oncology is not worried, sharing your report has reassured me it is not uncommon. She gave me good info about the fractures today. Turns out I have "bigger fish to fry". I will share more at the end with every one just reading through everyone responses now.
Thank you for the information and yes Tamoxifen was great for me while it lasted - I was on it a couple of year before it failed. Back in 2014 when i was diagnosed it was standard of care. Been through about 5 hormone treatments before Fulvestrant and Ibrance. Now AC and struggling a bit, it was hard to get past the no end date on how much chemo.
I was instructed by my oncologist to take Caltrate Plus daily because Xgeva draws the calcium from your blood into the bones. Without adding the supplement your calcium reading will be too low in blood tests. I know this to be true because I was initially casual about taking the supplement and my oncologist noted it. So now I take the 600/1000 calcium & vitamin D tablet daily. I’m having Xgeva every three months now. I can’t have the injection until the blood test is checked.
I’ve had two falls recently and not broken any bones. I’ve been taking Xgeva for nearly 8 years with no signs of problems with it but I do take the supplement. I can’t really understand any doctor having a problem with it.
I too have been searching for ways to strengthen my bones. Five years of Xgeva and ONJ results in no more bisphonates or Zometa. An Onc of my husbands noticed his calcium was high and asked him how much vitamin D he was taking. When he told her 6,000 she said it was causing the calcium to spike and to cut back to 2,000. We do take K2 and zinc. Trish was right to point out exercise which can be difficult but is huge for our overall health and our bone health. . My radiologist said walk so I’ve gone back to my you tube “walk a happy mile” Lesley Sansome. I feel I’m close to a dowagers hump but I’m going to ease into it as I have 2 compression fractures. I saw the cancer in my spine and clavicle and I’m hoping that the Verzenio will halt or slow the progress. If my bones are like Swiss cheese then it would take. 6 years to heal and I don’t think I have that long but you never can tell. I’m trying to eat as best I can, avocados , veggie wraps, sweet potatoes, soups. I did have a jam coconut sponge that I made with custard for desert so a bit of a diversion. I’ve been losing a few pounds so I want to add some back as when you start losing it goes fast. I can see my bloodwork in my chart and I noticed my red blood cells are lower and platelets too. I bought some liver so that will be a dinner this week sometime and good for my bones. Resting is just as important and I’m lucky to be able to do that. I try to do one thing every day and any more is icing on the cake. Good luck on your search and please share. I did think Tamoxifen blocked estrogen which is the reason so many of us have osteopenia or osteoporosis I know the Arimidex that I was on for 5 years was supposed to do that and that’s why they want you on Xgeva ti stop bone less. After around 5 years they’ve found that people get spontaneous fractures or ONJ but then there is no answer except diet and exercise. Hugs Chris xx
It sounds like you are doing everything you can to help your body be strong. I also exercise to Leslie Sansone. Her Walking at Home program is wonderful, so many different workouts to choose from. Some of them use an exercise band or light weights, which are great, too. I do these workouts several times a week. I never went on Xgeva or Zometa as I was afraid of ONJ and also the chance for different fractures. I take a food based multivitamin that contains calcium and Vitamin D as well as other vitamins and a Raw Calcium/Vitamin D supplement. Plus I have a smoothie every day with Kefir (which is a good fermented milk) and Almond Milk and an organic protein powder plus berries, kale, etc. I have not had a bone density test in awhile but feel my bones are relatively strong. Best wishes to you. Sending hugs.
Algaecal is a plant based supplement for bone strength that has many other nutrients needed for calcium absorption and bone growth. The Facebook group and website have so much great information about building your bones and lots of successful results. There is a book by Lara Pizzorno titled ‘Healthy Bones Healthy You’ (she is associated with AlgaeCal) that is very informative. I’ve been taking it for almost 2 years and will find out in April if it’s working. I have Mets to bones and do not want to take the conventional meds due to possible nasty side effects.
Hi Tammie. My MD Anderson oncologist (sure miss him as we moved) told me to take the calcium and D3 when I said I didn't want to take the bone building drug/shot. Also, I try and do squats, as any exercise, walking is best they say, strengthens bone! I also take high dose melatonin and will try to find the video that made me a believer in it and give to you. I get my melatonin from pure bulk . com (no spaces) as I can't stand the stuff that has additives and makes me groggy. When you take PURE melatonin, it has no effect on you other than sleep WHEN IT'S DARK, if it's during the day it has no effect on you, well no effect on me that is. Also, melatonin is a cancer fighter!
here it is: I can't tell you how many times I have watched this, lost count. I think it is fascinating what all he says about melatonin. It's long but worth it!
Hi,I'm thinking of taking melatonin. I read you take 35mg. It sounds a lot. The advice is to take 1 or 2 mg. Did/Do you have secondary effects? Did you increase your intake progressively? Where do you get it from? Is it safe? I would like to take it because I have problems sleeping. Yet, if it's safe and can help reduce tumor burden I'd like to take more. Could you give me some advice? Thanks a lot. Lucie
copy and paste this link, take out the spaces. I was just told this doctor lost his license and that he is sketchy. I am doing more snooping/reading on him and Russell Ryder. I know when I bought the over the counter melatonin it made me sleepy, this doesn't and that was only 3 mg. if I remember correctly. they add stuff to it and my reason for liking pure bulk . com is because it is nothing but melatonin, but I found out yesterday that all melatonin is sourced from china; not happy about that! Here is the website, we are always having to make difficult choices it seems grrrrrrrr. you tube.com/ watch?v=Roh4lQXneQg
Thank you so much for the answer. I've found so 10mg melatonin tablets but I don't know which one to choose - slow vs fast release. What's the diffrence?
Lulu the "pure melatonin" powder I take, so they claim anyway, doesn't make me drowsy at all. The few times I've taken over the counter drugstore melatonin I think the additives are what makes me sleepy, felt like I had taken a benedryl, which is also used as a sleep aid. When I take the 35 mg. in the daytime it doesn't even make me drowsy. I am still in the valley of decision really, I do think I will try it but not 100% sure I found out it all melatonin is sourced from china, but then most of our prescription drugs do as well but as another friend on here pointed out, prescription drugs go through rigorous testing by the FDA (don't we hope???) Sorry to be so wishy-washy but that's where I'm at today.
watched the video and it was very informative. I then went to Chris Woolam’s Canceractive site and his article pretty much confirmed everything on the video. Thank you for sharing. Chris
about 35 mg., just the powder and not time-released as far as I know, but after watching video again, I posted it on here for everyone, I'm upping my dosage to 4 x's a day. so much to glean from this video.
Vitamin D at 4000iu a day is what me wife takes for bone health. Any type of strength training will also protect the bones. Doesn't mean you have to go to a gym. If no weights at home you can use vegetable cans until you feel comfortable. Then maybe purchase some small dumbells. If standing is to much try some chair workouts. Here is an example (full disclosure - I do not know her but have followed her fitness journey for years).
I hope my comment/question does not offend you - were your spinal fractures before you tookzometa or zoledrenic acid? I don't understand how the treatment is considered successful when you have had 3 spinal fractures??? I am so sorry you have had the fractures and are in this club none of us want to be in. 🌺
Not offended - asking questions is how we learn and grow!
I have over 35 tumors on my spine, sacrum and skull. I have other bones effected too but I am most concerned about my spine and not being paralyzed. I am a little concerned with the tumor on my femur, but feel confident it will shrink with regular chemo. I was not consistent from June - December last year. That's a whole other story!
At the time of my initial diagnosis I had to have surgery to replace my T12 - it was 80% tumor. The goal for my treatment has always been to halt progression, any regression is bonus. In and around 2017 I had a radiation to my C5. It really helped with the growing tumor but caused a micro fracture. After that I went on Zometa the bone healed tumor free.
Now the AC is possibly shrinking some of the lytic tumors (holes in my bones) and causing the fractures (2 that were stable are showing uptake and 1 new one). I also have an uptake in sclerotic lesions (growth on the bone or hardening on the bone). Time will tell but they are optimistic the bones are trying to heal.
I want to help them (my bones and healing) along, this will be a large component of my appointment tomorrow. My Oncologist is not a supplement supporter but I don't think I can get enough calcium, Vitamin D3 and K2 any other way. I also have to figure out absorption, I know protein can prevent it and I eat a high protein diet per my nutritionist to minimize muscle and weight loss. Part of the disruption to chemo is I have rapid weight loss. 75 pounds March to September. It is such a hard balancing act.
Sorry I am not complaining and just sharing the journey. In fact I like the weight I am at now! I still lose about 5 pounds every round of chemo so working on it!
I would look to add some calcium (no more than 500/600 mg at a time) and Vit D3. My oncologist always wanted me to have calcium even when on the bone building drugs. And find a physio who has worked with previous cancer survivors with bone mets - to help you build strength and stability (of the trunk). Aside from whatever the drugs may do to help heal your bones it is essential to have strength in the core, glutes and back muscles to protect the integrity of your spine , and that in turn will decrease any back pain you might be suffering. I was able to avoid radiation on a vertebral compression fracture through exercise . You’re best to avoid radiation unless you absolutely need it.
Also, I am curious why you’ve only had iBrance as a treatment and now straight to AC before other options? It’s such a tough drug. What was your oncologists rationale for that? Perhaps she felt she had to give you something strong that she thought would reliably slow the cancer down fast?
Core strengthening is something I did awhile back and should start up again.
Ibrance was not my first line. It wasn't available in Canada when I started my journey in 2014. I have been through 5-6 lines of treatment. Oh and come to think of it I also did Xeloda before Ibrance.
You have had quite the Souljourney, Tammie! I also have lyrics and sclerosis tumors throughout my thoracic and lumbar sacral spine and share with you that spinal cord injury is my greatest fear. I so hope and pray for good outcomes for you.🌺❤🌺
I had AC in 2006 for initial breast cancer diagnosis. In 2015 I was diagnosed with congestive heart failure due to chemo toxicity. My EF had reduced to less than 25% when normal hear EF is 55 - 60%. With medication my EF has improved to be in normal range. In 2017 I was diagnosed with MBC. I have been stable ever since with cardio and MBC meds. You may want to ask questions about the AC. I know most benefits outweigh the bad, but it is something to consider.
Thanks! Yes I am very aware of the cardio toxicity. I have a MUGA every 3 cycles and am taking a drug at the beginning of each cycle to minimize the cardio effects. Can't remember the name of it off the top of my head but can find it if anyone is interested. The melatonin is also supposed to be very good defense for cardio toxicity.
After 9 years I am left with fewer and fewer options, some treatments have worked for years, others only months. I am not a fan of the Taxol's cause I go a little psychotic on Dex. Steroids and I do not get along so I opted not to take them with AC. I was told it is unavoidable with Taxol's.
Thank you for sharing, our combined experiences may help some else out their trying to figure out their journey!
Hello and Thank you to everyone for your thoughtful replies!
Sorry this will is a long update! My appointment today went hours. I did have the opportunity to discuss my fractures and she is monitoring them and is expecting them to heal. I can take a daily supplement if it makes me feel better but she would rather I make sure I am consuming plenty of dairy and walking regularly especial since I have a treadmill and don't have to worry about falling on the ice or snow. That is the risk of winter walking in the Prairies Canada!
So some background to the intermittent chemo is that August I lost 20 pounds in 6 weeks and had to delay treatment until I could stabilize my weight. I resumed treatment the beginning of October only to get Covid and rebound Covid from taking the antivirals. I am still glad I took the antivirals. Treatment was delayed to November and after that treatment I got pneumonia followed by shingles. My immune system just tanked! I wasn't treated again until the second week of December and then a regular 3 week interval to the first week of January. 3 weeks from that is tomorrow.
I know there have been many comments regarding the validity of tumor markers mine have been fairly accurate at predicting trouble. Today they were up by over 100 points as well as my liver enzymes. Tomorrow morning first thing I am slated for soft tissue CT - brain, chest, abdomen and pelvic. We are hunting for the cause of the increase...
With that the larger portion of my visit was discussing next steps. I presented Verzenio as an option because our work health care insurance covers it - it is not covered under our provincial health care. The doctor suggested Paclitaxel would be next. I told her that I didn't want to do anything that required steroids. I turn into "the Hulk" on steroids, angry and psychotic. She will call me tomorrow afternoon with scan results and more scans if needed. They are looking into options for me including special request to use Venzenio and we will meet in person probably Tuesday.
What a rollercoaster ride after thinking things were improving in December. Thank you everyone for helping me prepare for this appointment. I was able to stay remarkably calm listening to all the information. Now I am just hoping to sleep tonight....
Trials are easier when the burden is shared so thanks for listening!
Thanks so much. During the worst of AC chemo I survived on large quantities of homemade turkey broth...lots of gelatin in that. So I was doing something really good and didn't even fully realize the benefits!
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Tammie
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