What does everybody take/use for a bone strengthened? Do all of you take calcium? I was given one IV of Zometa but I didn’t receive anymore as it cause my blood calcium levels to drop extremely low. When I asked my oncologist what I should be taking to increase my bone strength he said he wasn’t up to date on the newest meds I’d ask my family doctor. I asked her and she said she wouldn’t prescribe anything without my oncologist telling her what to give me. She doesn’t want to give me something that might interfere with my Ibrance or cause the cancer to progress. (Some meds use estrogen to increase the strength which is a big no for me ). I have cracks in four vertebrae which my orthopaedic surgeon is watching. Any info would be greatly appreciated
Bone Strengthening : What does... - SHARE Metastatic ...
Bone Strengthening
I just started Xgeva. But it may have the same issues as Zometa for you as they are similar. That said Xgeva can cause high calcium...
Could you ask your GP to call your oncologist to discuss so they can agree on what won’t interfere with your Ibrance ? Or meet with your orthopedist and ask him/her?
It seems odd that your oncologist doesn’t have some idea of what might work. It doesn’t have to be the “latest” necessarily.
Some times I find I have to be the go between for the doctors. I know they are busy but a quick email would fix things. I will write down xgeva. Thanks
Odd. I recently started getting injection of xgeva bc of two holes in my spine created she said by my stage iv breast cancer, mets in lungs. She is having me take calcium supplements bc she said it lowers the calcium. See below.
Does xgeva lower calcium?
Taking Xgeva can lead you to have hypocalcemia (low levels of calcium). And if you have hypocalcemia before you start taking Xgeva, the drug can lower your calcium levels even further.
My levels are being monitored. If my calcium drops I will take it. I’m the meantime I’m on 5000mg of vitamin D a day.
I just started on it though. We’ll see what happens.
My calcium levels are in the normal range it always at the low or normal. The xgeva takes the calcium from your blood and puts it back in the bones I believe.
I also take Xgeva shots and have for over a year now. I rely on my oncologist and her staff for most of my health decisions as they want to know what’s going on to make sure nothing interferes with the Kisqali. Most of the ladies on here take Ibrance but I began my journey with Kisqali.
I haven’t heard of Kisqali but I live in Canada. Xgeva is a needle ?
Yes. A monthly shot.
It’s new-ish. My insurance turned it down at first then I switched doctors and the new one pushed it through. But it’s a standard of care drug so if you can’t tolerate Zometa and it makes sense for you then I would think it’s ok in Canada?
You have to make sure you don’t need invasive dental work like implants or root canals before you start. As it can cause a side effect called necrosis of the jaw. Although my dentist and oncologist said that’s very rare.
It also made me dehydrated but Sri king more water helped right away.
Thanks. I am always so thirsty it seems all I do is drink water. Lol.
My onco was very adamant that I make sure I would not need any dental work done before starting the xgeva injections. There was some poster on here a few weeks ago who had her whole mouth replaced with implants which is quite a long and extensive procedure. The lady said she waited until all the implants was all done and then a few months later started the xgeva injection but had to eventually stop getting the xgeva injections because her jaw and implants were causing her a lot of pain.
Oh dear. That doesn’t sound good
Prior to being diagnosed metastatic, I had been on Denosumab -brand name Prolia for several years - injection every 6 months through my primary care physician. My oncologist was happy I have been on Prolia as she said it was also beneficial for breast cancer.
Thank you.
Hi there
I have a monthly injection of Denosemab (Xgeva) and have done since my diagnosis
I’ve also been told to take Adcal...a calcium and vitamin D chewable tablet...two a day
I’m annoyed at your oncologists reply about calcium...sounds as if he needs to do some reading or go on a course....none of these treatments are new for goodness sakes
Barb xx
He told me to take calcium when I first saw him but not which kind, I researched and read on here what ones wok best. He didn’t even mention a bone strengthener till I asked yet all of you seem to be on one from the beginning.
Hi Sarcie
It depends if your bone mets are osteoblastic or osteolytic...the lytic ones have low calcium and are weaker but the blastic mets are tougher so I would ask
Most ladies have a mixture of the two types...I know I have
Maybe you don’t need the bone strengthening injections
Barb xx
I honestly don’t know what mine are. When I had my hip replacement surgery my surgeon told me my bones were hard but really brittle.
Oh my God other thing I ask to my oncologist !!!! Never hear it. I don’t know which I have 🤷♀️
What is the difference between the two words that you used. I was recently told about three months ago that two small holes (one in L and one in T, I forget which one was like L9 and T15 or vice versa. She said it was caused by the breast cancer. If I have those two small holes, does that mean that it will definitely spread to my other bone areas eventually.
I know, unfortunately, that yours is in numerous bones areas, so I am wondering if that means eventually mine will spread to other bones.
I did have a CT scan of my back bc of the severe lower back pain I was experiencing, but the pain specialist who I just started seeing and who gave me pain meds (what a relief) said that my pain was NOT caused by the cancer. I worry now that they will take me off the meds which have made such a big difference in my life.
I don’t know the difference in the type (or the words Barb used ). I don’t think having a couple Mets to your bones means it will spread to more bones. All of my bone Mets were found at the same time. I have had only one new met in my skull in two years and my oncologist wasn’t sure if it was an actually met (will know if it’s still there the next scan ).
My oncologist said not to take calcium as my levels are fine. I take vitamin d though as my levels are low. Too much calcium can cause kidney stones he said.
Bottom line is you need to have blood work and the treatment individualized for your situation. I would push back on the doctor, ask about all of this. Agree with Barb that this is not new
I spoke with my oncology nurse and she said she will speak to my oncologist but it is my family doctor’s responsibility. I will keep at them till one does something. I am meeting with a naturopath next week for the first time so hopefully she will have some good ideas. She deals only with cancer patients and seems quite good
That doesn't sound right. The bone issues are caused by your cancer, right? Therefore it would seem to be an oncology issue?? And if your bones are already brittle it is not something to be ignored.
I really feel we need to push. push. push. I always say that the doctors deal with this every day, but we only get to do it once and it needs to be right.
Apparently my oncologist only deals with the actual cancer ??!! He doesn’t prescribe anything but my Ibrance and Letrozole. My family doctor does the pain meds and everything else. I feel it’s a power struggle some times. If all else fails I will contact my orthopaedic surgeon as he is the only one that told me about the 4 partial fractures in my spine. He has me back regularly to check on them.
Same issue here. I was finally having lower back pain but my onco does not deal with issuing pain meds and my primary will not do anything for the pain and I kind of do not blame him so my onco referred me to palliative care and that dr. is wonderful. She is willing to give me the opiate pain medication and gabapentin for my pain but she said (after looking at something on the computer) that my lower back pain is NOT from the breast cancer.
I am NOW able to walk without the severe lower back pain but scared they will stop it if they think (like the pain specialist said to me) that they do not believe the pain is from the cancer. I would hate to finally be able to walk without lower back pain if they decided to stop the palliative care if they feel it is NOT from the two small holes in my spine that my onco said were caused by the breast cancer but should not be causing me pain. I hate that someone else holds the power over me as to whether or not I should have a better quality of life. I was NOT imagining the pain for sure.
I understand completely. I was in excruciating pain before I received my cancer diagnosis and my family doctor basically said take Tylenol. As soon as I received my diagnosis she was suddenly giving me all kinds of pain meds. I was so upset that she didn’t believe me when I said I was in pain. You shouldn’t be in pain, it’s not fair so they should continue your meds no matter what the cause
Funny. My onco will suggest some things sometimes but then tell me to get it from my primary doctor. My primary doctor always assumes that something is because of my cancer and he will tell me I should be getting it from my oncologist. I think my primary doctor is scared to give me anything because he knows I have stage iv and would rather the onco take care of any issues. Whereas the onco feels her part is only treating my cancer (which makes sense) and for other issues, she tells me I should be going to my primary. As if I didn't have enough issues.
I have been on Xgeva for 10 months. I do quarterly injections. When I started the oncologist nurse told me to take Calcium capsules to help the body absorb the Xgeva. I take 1000mg/day of Calcium capsules with D3. ❤️🙏❤️
Hi. It is the same I take 🥰
My oncologist prescribes Calcium and Vitamin D and these are both measured at each monthly blood test before I am give the next 3 weeks of Ibrance.
I have also got some from my GP (I just asked for them and she prescribed them) when I forgot to take them with me from the hospital.
It's 2500mg calcium carbonate - the best sort for absorption - (equivalent to 1000mg of Calcium) and 8.8mg of colecalciferol concentrate equivalent to 880IU of Vitamin D
The brands I use are "Accrete D3 one a day 1000mg/880IU"
or "Calcichew D3 FORTE 500mg/ 400IU "(two of these a day)
Hi Sarah,
I'm sorry to hear that zometa does not agree with you. Like you, my bone health is very important to me. When I first met my oncologist she recommended Adcal D3 (calcium carbonate and vitamin D3) which I get on prescription every month. I also take a dose of vitamin D3 + k2 (spray) every morning, as the spray is easily absorbed into my body. I have also made some dietary changes. I eat lots of cruciferous vegetables and try to juice most days. I work out too in order to help strengthen my bones. Can you do some gentle exercise? I don't know if that's a possibility with the bone cracks in your vertebrae that you mentioned.
I must say I am surprised at your oncologist's and GP's responses. My GP likes to defer to my oncologist too, but I always end up with an answer from at least one of them. Can your GP call your oncologist to ask about possible drugs or supplements that might help? Or refer you to someone who can help? It's unacceptable to just fob you off and leave you hanging. You need solid answers so you can start taking a drug or supplement that will help strengthen your bones.
I hope you can get some answers soon.
Sophie
P.S. If you are prescribed Adcal D3 make sure you get the capsules, as the chewable tablets contain soya (at least they do in the UK. Perhaps it's different in Canada). I try to avoid soya in its processed form as much as I can.
I will ask about the Adcal (you and Barb both take it but I assum it is available in Canada).
I was really upset that the two Doctors were like that. I do understand my family doctor being nervous on which to prescribe but she could have sent him a fax asking for help. I don’t understand why I have to do their work.
I have my ortho docs email so I might just drop him a line and see what he says. He was actually concerned over the fractures where as my oncologist just mentioned them in passing. I was lucky my ortho doc saw them on my scan when he was giving me a checkup on my hip. If he hadn’t I wouldn’t have anybody concerned about them.
It’s just so frustrating when they don’t work together or contact each other.
Let me know how you get on. I agree that it is unacceptable that you are having to do all this work yourself. Where is the support from your medical team? Your doctors should be concerned about your bone health. How can that just be brushed aside as if it doesn't matter? You could end up with serious fractures. I'm sorry you are in this position. Can you take someone with you for support when speaking to your GP or oncologist? It can be so draining fighting for our rights, but you deserve so much better than you have received so far.
Sophie
I spoke with my oncology nurse and she said she will speak to my oncologist but that he wouldn’t normally tell my family doctor what to prescribe. She was a bit upset that my family doctor didn’t take the time to research herself. All she had to do was check webmd.
I agree that your family doctor should have taken the time to research for herself. You should not have to do it. You do not need the added stress that this has caused you.
Sophie
I guess I will have to stop being polite and nice and start getting cranky or cry. Maybe Then she will get her act together.
I find that being polite, but firm, helps. I sometimes make a note of my complaints, or what I want to say and then when I see my GP or oncologist I can let them know about my concerns. It also comes across better if I state the facts and keep my emotions out of it.
Sophie
I always have things written down so I don’t forget and I am always polite, even when I shouldn’t be. I’m not very aggressive lol
I'm not aggressive either! But I am pretty forthright and persistent when I need to be. I have had to follow up on a number of occasions, such as when my oncologist has forgotten to put referrals through or someone is slow in getting back to me about a query or issue I have . If I am told I will be hearing back within a day or so, and I don't hear back I am right on the phone finding out why.
Sophie
I honestly think you need a different oncologist and family doctor . I would be looking around.
We have such a shortage of both there is no body to see.
Check webmd! 🤦♀️ And they get mad when patients quote Dr Google...😱
I know. They always say don’t trust what you see online.
I seen a photo frame that was hung on a wall in a doctor's office that said "Please do not confuse google with my medical degree." I thought it was hysterical and I am sure all doctors hate google and hate when a patient states "Well, I see on google that......."
My primary doctor (new since I have medicaid but he knew my old primary doctor who suddenly died) but he refuses to have anything to do with my cancer. I think he worries about medical liability which in US is a big thing.
My calcium levels are at the low normal range each month. I will ask about the calcium supplement to see what they say. I spoke with my oncology nurse today and she was upset my family doctor didn’t investigate herself to see which one was the proper one for me. She said she will talk to my oncologist for me.
She is really nice so I’m hoping she will at least get an answer from him and let me know. I will tell my family doctor what he said. I’m thinking I should get paid for doing all this. 😉
This is me scheduling all my scans. Calling the Onc and the hospital scheduler...every stinking time 5-6 phone calls! Seriously am I on the payroll here! 🤦♀️😱😂🤣
LOL. We should get something out of this.
Sorry you are having this turmoil over something so simple. Everyone passing the buck. That should never happen. Do you have any alternatives like getting a better oncologist?
My oncologist looks after everything no matter what I need. And he books my appointments and gives me a print out of all the dates I need to know. I thought that was normal procedure but sounds like not everywhere.
Good luck with sorting it out. I think enlisting the nurses for help like you did is your best bet.
They are so wonderful. Good at sorting things out if they can. Sometimes they are dealing with a doctor with an ego or attitude and then they have their work cut out. Wishing you well,
Cheers, June S.
I live in a small area so there are no options for oncologist.
Is there a cancer association that could provide you with transportation to see a specialist or see someone occasionally for a second opinion when you need help? Usually they will service small communities and it is free but I am not sure if that resource is available were you live.
I see someone suggested the pharmacist for medicine info, which I think is a good idea. Hope this might help.
Cheers, June S.
I drive to our major city. We have free health care in Canada but in the smaller provinces we don’t have as many options.
I get it. My "forgetful" onco actually thanks me when I said Aren't I due for a CT scan now since the last 3-month scan showed two holes in the spine. She will say Oh, yes, thank you for reminding me. UGH.....
I take Boniva once a month. Blessings, Hannah
How did u score that? Did others not work for u? XGEVA didn’t work for me...made me dizzy/light headed and had headaches...Zometa made my EGFR go down to 59. 1 point below normal. If I could get on the pill after 3 1/2 years that would be awesome...😎
Boniva is a pill. I haven't been on anything else. My cancer isn't in my bones. It is in my right lung. Blessings Hannah
Xgeva, and my onc told me to take calcium and vitaminas D. But you need to take vitamin K2 for better absorption and that's what I do.
What is K2. I don’t think I have heard of that.
Vitamin K, K2 garbanzo has it.
Wow - I’m sorry you were sort of given the run around by your medical team. You’d have thought one of them would have the answer to a simple issue. I’m hoping your PCP can talk to your oncologist and come up with a plan.
I have a Zometa infusion once a month as long as calcium test is high enough. My oncologist recommended I take Calcium supplements available at Costco. They’re adult gummies and I take 3 per day. They’re 500 mg each and also contain Vit. D3. So far I’ve not had to miss an infusion due to low calcium so the gummie bears must be working.
Good luck to you and all best,
Red
I was told to take only one of those per day. 500 mgs. Wondering why now such a lower dosage of calcium supplements. It also has, as she suggested, Vitamin D in them.
I’m assuming my onco based this recommendation on my blood work. At any rate, I’ve been taking them for 3 months+ and the calcium level is where it should be. If you’ve been advised to take only 500mg , then it’s just because that’s what your doctor considers necessary given your level.
We’re all different so I shouldn’t worry You’re taking less.
All best,
Red
I learn so much from this board. Until I was diagnosed, I really did not know much about breast cancer. I just stupidly thought there was only one kind. If you got breast cancer, that was it. I had no idea it was in grades i, ii and iii or there were various types. I learn so much from many of you ladies that make me feel more knowledgeable bc I would not want to read it up on it.
But now, unlike most of the other women, I do not say "well, I seen on Google that .....", I now say "Well, the ladies on the board say .........." and she actually seems interested when I tell her what experiences some of you have or what your oncos have tried.
The "ladies on the board" is my new mantra. I do not need to use google because I go by what the "ladies on the board" say. LOL
Lol. I tell my doctor the ladies on the forum take .... I explained that it was a great forum with women with the sane type and stage and meds.
Hi Sarca, pity your G.P couldn't give your Onocologist a quick ring to work out together what would be the best for you to take. ???. I've got Rheumatoid Arthritis, Osteoathritis and Osteoporosis. The bottom of my Spine is very weak. I have to have Bone Density tests every now and again because of it.
I can't take Estrogen either. But my G.P put me on Adcal. I take 1 tablet twice a day,to be taken evenly apart. I also take a tablet called Alendronic Acid. 1 to be taken every 7th day.
You need to get your calcium levels checked 1st,before taking any kind of supplements or bone strengthening medications..
Sometimes we have to be a Go between with the GP And the other Doctors.
Even though it's not right.
Take Care Gjkas
A few other ladies said they take Adcal. My mother takes something every 7 days also. She has to stay sitting up after taking it. She has degenerative spine
I only take calcium and D3. I had a big, bad met in my femur above the knee, that's why when I slipped in my kitchen and fell, landing on my behind, it broke! BUT ... after over a year, happened in January of last year, ortho says it is healing nicely and will have my final look-see appt. with him on the 27th, along with xrays and my leg feels strong although I will most likely baby it for the rest of my life. So it is my uneducated guess that if it is healing at the break right where the met was, then the met is gone? will report back after xrays. you know after a break the bone scan nuclear material goes to that site anyway so they can't tell anything in that area is what I was told i.e. met or no .... whew ... I do exhaust myself! 
xo
I would guess if it is healing than the met isn’t there. Good luck.
I receive Xgeva injection once a month for bone strengthening and I also take 1800 mg ( 3 - 600 mg pill of calcium). I have bone, liver, and lung Mets. So far so good!
I take a calcium magnesium supplement. I am going to have my 1st IV zometa in April. Will let you know how it works when I get results. I also have a fracture in my spine.
Have they done anything for the fracture? My four they are watching and waiting. They said if it stays the same they won’t do anything but if it gets worse they would do something, what that is I don’t know.
No they have not done anything. My radiologist offered to send me to a surgeon and I declined because I had so much going on and that fracture was not giving me pain so also just watching it.
Sandra is right. It doesn't sound like you have a good oncologist at all.
I take Calcium twice daily and I am on Zometa every 12 week. I’ve not had any issues. I actually had Zometa infusions every month for 18 mos but have since been moved to every 3 months.
I take VitD and Calcium. I also have Denosumab infusions once a month that help. That’s just me though. Always best to go with professional advice. I have ER + HER2 negative Stage 4 Secondary Breast Cancer in my pelvis,spine,ribs, (3 are fractured), shoulder blades, skull and lungs. All are Oestrogen driven. Hope you get some help. I also take Letrozole and Ibrance.
Zometa calcium D3 walking
For me its been about three months since they found holes in my spine from the breast cancer. I had been diagnosed with mets to my lungs.
I was started with an injection of xgeva (along with my falsodex injections) and my onco told me to buy calcium tablets with Vitamin D (500 mgs.) to take once per day. Apparently both the one you were taking and Xgeva cause lower calcium levels so my onco, and from what I read most oncos, advise their patients to take calcium supplements every day to help with this. I take 500 mgs. of calcium supplements with Vitamin D.
Thank you for the info.
Can you talk to a Pharmacist maybe at your cancer clinic. They would be the best source of info. I asked about calcium both the Onc and Pharmacist said ok. And lm on Palbo and Letrozole .
I will speak to my pharmacist.
I found this online. I never know why they prescribe certain drugs.
"A study has found that Xgeva (chemical name: denosumab), a targeted therapy medicine, is better than Zometa at reducing the risk of a skeletal-related event in women diagnosed with metastatic breast cancer that has spread to the bones. The study also found Xgeva improved quality of life more than Zometa."
I assume that because it lowers the calcium level, that is why my onco said I need to take calcium supplements every day.
Thank you.
I was diagnosed with mbc, in March, 2004, with "extensive bone mets" from the get go. That was before Xgeva but it was standard of care to be given one of the bisphosphonates, like Zometa or Aredia, by IV for bone mets as those meds both strengthen bones and help bone mets heal. The risk of osteonecrosis of the jaw was not yet well known but became known a few months after I began treatment. I turned out to be allergic to them and ended up getting just a half dose of Zometa, with pre meds of benedryl and hydrocortisone. I also got a longer infusion time and extra fluids. I tolerated that quite well and was switched to Xgeva when it became available. It's my impression that usually if we need anykind of invasive dental work, it's best to be off the bone meds for 3 months before and 3 months after the dental work. I find it odd that oncs don't prescribe the bone meds in Canada. I was also told to take calcium. I've been fortunate to do really well and am only on third line treatment now. When I've had progression, it's been very minor. I have some lower back pain now but don't really know if it the bone mets or other back issues I've had for years. The onc wanted me to see my neurosurgeon and the neurosurgeon has referred me for physical therapy and to get an injection of cortisone in my back. I'm pretty tired and I have a rash and just had some allergy testing done.
If I was having the meds through IV then the oncologist prescribes it but when it comes to writing a prescription he only does my Ibrance and Letrozole. My radiation oncologist wrote me a prescription for my opiate as I couldn’t get in to see my family doctor but the medical oncologist won’t ?? Thankfully now my family doctor lets me call her office and tell her I need a refill as she writes the prescription. One of my family members go and pick it up. She can’t call it in to the pharmacy as it is written on triplicate.
You had great success with treatment if you were first diagnosed in 2004. May I ask how old. you are? What is this thing with the teeth/jaw being affected? I wish you continuing good health and a happy, long life.
Yes, I have had "great success" and consider myself very lucky -- I think I have nice lazy cancer cells that respond well to standard treatment. I was diagnosed the month of my 58th birthday, and now I will be 74 next week. The teeth/jaw thing is called osteonecrosis of the jaw. Osteo refers to bone and necrosis refers to death. I don't know what the current rate of ONJ is for those of us who have bone mets and are/have been on bone drugs like Zometa or Xgeva but when I was first diagnosed, it was considered "rare." My onc told me that it is less likely to happen if we have had good dental care our whole lives, but some of the women I have known who developed it were upper middle class women who had grown up with regular dental care. It is thought to be more likely to occur following invasive dental work, like extraction or root canals. We are often told that we should have anything like that that we need done before starting treatment. Or if something comes up after we've been on the bone drugs for awhile, going off them for 3 months before and 3 months after the dental work often reduces the risk of ONJ alot. I had an extraction a few months after being diagnosed, and after having about 4 to 6 Zometa infusions, right before the risks of ONJ became publicized. I had no problems and my jaw healed just fine. I needed a root canal about 8 months ago and it had been 3 months since my Xgeva shot, so I had the dental work done and then waited another 3 or 4 months before the next one. When I first heard of ONJ, it sounded really scary to me, but I soon met two fellow metsters who had it and they were managing it quite well. They both lived near a prestigious dental school and saw a specialist there. One of them had kept having infections in her mouth and that dentist suggested she brush her teeth with Arm and Hammer Peroxicare tooth paste and rinse with original formula Listerine mouth wash, and the infections stopped, so I have superstitiously used those two products hoping they will give me some added protection! lol We also recently bought one of those electric tooth brushes that also sends jetting water into the mouth at the same time that we brush and really like it alot. It gets more little bits of food from between my teeth than I have ever seen in the sink before while brushing......... I think that cost about a hundred dollars, but seems worth it to me. The longer that I live with this stupid cancer, the less I worry about it. I really am ready to die, not in a morbid kind of way but just ready to face whatever comes next.
Thank you so much. You are so experienced having been on the treatments so long. Since your cancer cells are lazy and well behaved :), you are not ready to die. Not at all!
Zometa is an IV drug.
aaahh, I know nothing except I have stage iv with mets to the lungs and now two small holes in my spine so I get an extra injection. I never knew once what my tumor markers are, what my calcium level is, none of that. I just get my CT scans and to me that is the important thing. Quite frankly, I would be bored knowing bc I am not sure what it means anyway. I just need to know if it spread or not every three months, or if for any reason, we have to switch treatment.
So far it's been a bit under three years and it has worked for me. I never worry about these things bc I don't know about them. I tried keeping a diary book when I went for visits. I did it once and got bored with that too.
I never read or take out from library any books about cancer. I went into a Barnes and Noble (so few of them left but one still in Brooklyn) and there is a wide selection of Cancer books that I passed on my way to another section. I wondered which author of any of those books actually got it right.
My only issue now is how to stop constipation while taking the opiate medication. I will have to cut back if it continues. I am taking so much stuff I was advised to take to avoid it but not really working. So I may have to cut back on the opiates or just use them every other day or something.
I agree. Why worry about what we can’t understand. I don’t know if you have Restoralax in the US but it works really well for me. I was in rough shape with the constipation until the Pallitive nurse suggested Restoralax. It is a powder that you can add to any cold or hot drink. It dissolves completely and doesn’t add any flavour and most important doesn’t get think let other kinds. You can adjust more or less as needed. I use some everyday to keep things moving. None of the other things worked for me.
I was surprised how quickly the constipation started. I think it was like the third day of taking the lower 5 mg. of percocet and I don't care what the doctors say. If you get a generic brand (which is what they do in US) and it's a crappy brand, you feel the difference or rather you do NOT feel any different.
Per the US law, the pain specialist could only give me the first time a weeks' supply and then I had to go back to see her. If I never took opiate medication before OR if I had not been prescribed it in three months, they are only allowed to give a week's supply for the first time. I felt like the pills were like placebos, they were so weak.
But the constipation started by third day and it was scary. I was so uncomfortable and could not sit and then I got myself all agitated. It took another three days and I was pushing like I was in labor (I never had kids but I imagine it was similar LOL). It was scary.
So I then started taking so much stuff at once. Loads of stool softeners, drinking glasses of water with Metamucil, taking four times the amount of lactose she prescribed for me and drinking water non-stop and still nothing was happening.
Finally, after pushing and so much pain, I had a movement. You would have thought I won the Lotto. I started crying I felt so much relief only to see a small marble-size piece. All that work for that
When I went back, she gave me 90 of the 10 mg. of percocet to take three times a day. So I kept heavy on all the above items and now I have severe diarrhea, but I would take that over the severe constipation any day.
Funny thing is that I had called a friend in FL who I knew took gabapentin. Heard her mention it once but had no idea what it was but the pain specialist also gave me that to take in addition to the percocets plus I have to make an appt. for a physical therapy evaluation.
We were on the phone for almost an hour, discussing poop and bowel movements. She is two years older than I (and she does not have cancer). At one point I said, how did it happen that we used to talk about men we were dating, new clothes and makeup that we tried and now we just spent an hour on the phone discussing bowel movements. LOL
I used to wonder when I was much younger, when older women discussed these issues and said I would never be one of those women when I get older. But life laughed back at me and now I am one of those ladies.
My friend and I discuss poop a lot as she has issues with meds also. I find the Restoralax doesn’t cause diarrhea. I understand completely on the child birth reference as it is just like that. If you get really constipated again there are suppositories. My niece worked in a seniors home and she told me about them. She gave me heck for letting it get so bad she said to use them next time to get things started.
In Canada for in my province the doctor can write a one month supply of an opiate. When you need a refill you cannot get it until the last day of your present prescription. They are trying to cut back in over prescribing here also.
Well that is all the pain specialist can write. Just a month supply so she told me she gave me 90 and wrote three x per day but I am trying to only take two per day. But then I have to go see her again before she can write me another month.
She is so good though (unlike my onco who is the most forgetful person I know). The pain specialist is having me go back to see her on 3/4 ONLY because she will be out of the country attending a seminar when I would be due for a refill. This way she is "seeing" me and can write and send to my pharmacy to hold until I am ready to get my second refill. So at least she was thinking ahead and realizing I would not be able to get bc she would be out of the country so she is making me come in early so that legally she will be able to write the next rx for me and give to me pharmacy to hold until the legal due date.
I dont know what went on last week with my onco visit. I usually wait about 10-15 mins once put in the room but was in there an hour and then seen her quickly pass by with a man (who I recognized as a doctor who is head of that whole oncology dept.) My office door was not closed (they usually close it while waiting but they did not). He is very ANTI-opiate as stated on the website and little clips of videos he did.
It sounded like he was reprimanding my onco. At one point I clearly heard him say "She is actually doing better than she was doing 6 months ago." I immediately thought OMG....is he talking about me and he is angry with my onco for referring me to palliative care and for getting opiate meds (he must get a list of who is getting opiate meds in the oncology department).
The odd thing was that my pain specialist said that they do not think the breast cancer (two holes in my spine by the cancer) is the reason for my lower back pain.
So I always do this. It could be him talking about another patient but I clearly him say that. He may be annoyed that she forwarded me to palliative care OR it could be another patient.
She then basically came in and I mentioned that the pain meds made the difference and that for the first time in weeks, I had walked for several blocks without pain. She seemed kind of stressed and rushed and I complained how long I waited and still had not gotten my infusion shots so she just said I will go ahead and tell them to take you immediately.
She seemed upset. I am not sure if he was discussing me or if she got reprimanded for something else but it did sound like that.
I dont know what to expect now when I got on 3/4 or if the pain specialist is going to tell me that they decided I cannot go to palliative care for the meds.
Hey, I have been using 800 mg. of ibuprofen for two years. So now worried,
Wow. He may not have been talking about you but it may have still have upset her. Hopefully it’s all better next time.
That is encouraging to hear.💕
Hi Sarcie, lots of good responses here, and as others have noted, we might all need different things as far as treatment goes.
I get an Xgeva shot once a month, along with a Lupron shot (to shut off my ovaries). They test my blood the day of the shot to make sure my calcium is high enough. I take Letrozole and Ibrance too (I am ER+/HER2-), and every day I take a calcium supplement with Vitamin D3, twice a day—these supplements do not interact with Ibrance/Letrozole/Xgeva/Lupron. My oncology team looked all that up before prescribing it to me. The twice a day thing is very important because our bodies can only absorb 600mg of calcium at a time, and I’ve been told I need at minimum 1200mg a day (they base this off your age). The Vitamin D3 is also important because it’s not easy to consume enough of that vitamin through diet, and Vitamin D3 helps your body to absorb the calcium. So think of them as a team that need to be taken together. It’s also thought that there might be a link to Vitamin D3 deficiency and breast cancer, though too much can lead to an increased risk of other cancers, like pancreatic cancer. Or so I’ve read. Basically, take as much as your body needs, but not so much that you’re challenging the other organs in your body. Your oncology team is literally hired to figure all this out for you, so I’d ask them what they recommend. My oncology nutritionist is actually the one who helps me—she works at my cancer center and all the oncologists defer to her (truth be told, many oncologists aren’t up-to-date on nutrition for cancer patients).
Xgeva can lower blood calcium levels because it takes the calcium from your blood (we do need SOME calcium in our blood to survive) and puts it into your bones to strengthen them. If it steals too much calcium from your blood, you can become hypocalceimic, which is easily reversible, but potentially life-threatening if left untreated for too long. I once went a day without taking my calcium (just completely forgot about it), and as I was walking downtown, my buttocks began to cramp so badly I could barely walk. My muscles would just randomly spasm, like a charley horse, then feel okay. My lips also began to twitch. I took some calcium, and within 30-45 minutes I was fine. When my blood was tested a few days later, it was below normal, but not terribly so.
There are two types of bone mets: osteolytic (they deteriorate bone) and osteoblastic (they thicken bone to the point it’s too hard). Both types can lead to fractures, though osteolytic lesions are more likely to do so and are also most often associated with pain. I have innumerable osteoblastic bone mets in seven vertebrae and throughout my pelvic region, yet I’ve never had any fractures nor have I had any pain, except from my treatment, which is somewhat ironic. It’s common for breast cancer patients to have both lytic and blastic mets, and sometimes osteoblastic lesions are a sign that the mets are healing (think of them like a thick scar or scab on your bone that will never go away). That’s not always the case, but if you read your radiology reports and see that your lytic lesions are now blastic, ask if that means they’re healing.
I’ve been on Xgeva since June 2019, and so far it’s been fine. Some people do experience considerable side effects, so it’s good to be aware, but not so focused on them that you imagine them to be happening to you when they’re not (if that makes sense?). For me, Xgeva has been the easiest of my cocktail of drugs. I’ve had far more side effects with Letrozole, Ibrance, and Lupron!
Thank you for all the info. My bones are deteriorating so mine must be osteolytic. I will add all these questions to my list for my next visit. You are very knowledgeable.
Hi MJ,
I found your response very helpful. You are certainly very well informed and knowledgeable about bone health. I sometimes experience soreness in my buttocks too. If I have been sitting for too long I start experiencing cramps and it feels uncomfortable when I try to stand up, but then the sensation goes away after a few seconds. I take my Adcal D3 and vitamin D3+K2 spray daily, I eat lots of cruciferous vegetables, juice greens, and exercise.
I do believe there is a link between vitamin D deficiency and breast cancer. I had a severe vitamin D deficiency some years before my diagnosis and I sometimes wonder if that was the start of it. I was prescribed a high dose of vitamin D and that helped resolve the issue. But then I stopped taking it and the symptoms returned, along with this disease. Now that my vitamin D levels are normal I feel so much more energetic, not sluggish and lethargic. I also feel nearer my age, rather than like someone much older.
Sophie x
I had one Zometa too and I fainted 36 hrs after. Since then, no more Zometa. There is an injection the name of which I don't know that is given instead. I am going to have it on March 26
Yes 1 a day and the injection every 3 months said they had done research and 3 monthly as effective as monthly Xgeva every 3 not sore
Would Xgeva be any different? When compared online it has a different mechanism than Zometa. It is the same as Prolea.,
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