Bone meds?

MarcieB

I am curious about how many of you are currently taking medication to improve your bone density? And how is that working for you?

Kp2018

MarcieB, thanks for the question. This interests me as well. As a small framed, normal BMI, fair hair and skinned, OLD female, I am prone to develop osteoporosis.

Before my diagnosis, I took alendronate for several years which seemed to work very nicely for my osteopenia. It was discontinued after the risks of continual use of alendronate became known.

After treatment, and after a bone density scan showing progression to osteoporosis, my oncologist recommended annual Reclast (zoledronic acid) infusions. My understanding is that even though it, like alendronate, is a bisphosphonate, it does not stimulate bone regrowth in the same way as alendronate.

Since dormant tumor cells are known to hibernate in bone marrow, as little stimulation of bone growth as possible is thought to be desirable. My oncologist suggested that the reason for Reclast is to PREVENT further bone loss as opposed to improving bone density.

As for how it works for me, I won't know until my next bone density scan next March. The last one, two years ago, shortly after the first Reclast infusion, showed pretty severe osteoporosis in the left wrist area. The next scan should be telling.

Are you taking any medications to improve your bone density?

Thanks again for starting what should be an interesting and helpful thread.

MarcieB

Kp2018, thank you so much for your response. I need as much information and witness stories as I can get because I will need to make a decision about it soon. I was taking Boniva. I say "was" because I stopped. I took it once a month for over a year and every day I had to take it I knew I had to allow for at least two days of some kind of discomfort. I asked my doctor about the possibility of "jaw death" which I had read about, and she told me it was always a possibility, but I was on a very low dose and should probably be fine - especially if I didn't require any procedure where it would be necessary to drill into my jaw bone. (yikes!) It just scares me because the left side of my jaw is probably the only place in my body that has not gone back to "normal" since I completed treatment. It feels - crunchy - in my ear.

Last December I had a very bad time with it, including times when my feet didn't hold my weight right when I took a step. I am not overweight. I am also small framed even though I am tall (well...not so much anymore!) so I stopped taking it. It's been 9 months since my last pill and I haven't told my doctors. I just didn't want them to talk me back into it!

My friend, who is 7 years older than me and a 6 year survivor of Triple X BC, has a different doctor, different medical system. She told me her doctor suggested she have a bone density test and my friend asked the Dr if there was anything that could be done if the test showed trouble spots? The doctor said, "Not really..." and then explained all the med varieties, their success rates (success is a relative term), and the possible complications which could occur. The complications were more dangerous to her, all things considered.

So I had a density scan yesterday and waiting for the results. I originally had osteoporosis in my femur neck and osteopenia in my forearms. But, that test was taken shortly after chemo, which I cannot help but wonder if the chemo drugs had an affect? There was nothing in my spine or hips.

I do a yoga stretch and walk every morning (which I could not do during my treatment). I have upped my consumption of yogurt and healthy dairy, and I do weight bearing arm exercises every day now too.

So, we'll see? But, every instinct I have is screaming at me to avoid those drugs. I hope we hear from other people here.

lynn1950

After chemo, I developed oseopenia. This progressed to osteoporosis, which progressed despite Boniva. I have now been on Prolia for 5 years and the (mild) osteo porosis has stablized in my htps and is now reverted to osteopenia in my forearms. I am 12 years post treatment and I took Arimidex for ten years. I take a calcium and D3 every day.

2943

I took Prolia for 4 years and spinal health specialist changed me to Fosamax for two years. Had to stop as needed dental. I then am now dealing with 6 fractured crushed vertebrae. In the beginning of determining treatment. Appt with spinal surgeon Mid Oct. until then , I am a hurting Mama.

omaalyce

After chemo, I was diagnosed with rheumatoid arthritis in 2020 after a year of trying to figure out what was wrong. My rheumatologist has me on a Reclast infusion once a year for 5 years. Then we will look at it. I have just had my 3rd shot this past August and prior to that I had a bone density scan. I had one in 2019 and there is actually improvement in my bone density since she started me on these shots. I have had no adverse reactions to these and will continue the infusions. Good luck!

MarcieB

I am grateful for all this input! Yesterday I got my bone scan results. It showed the osteoporosis that was present in my femur neck (narrow part of the thigh), has improved to osteopenia. The osteopenia in my forearm is stable and my overall bone density has improved. My doctor sent me a message saying she is pleased with the results and for me to continue taking Boniva - (she doesn't know I haven't taken it for 9 months)

I know we need to be up front and honest with our doctors, so I DO plan to tell her. But, I also think we know our own bodies better than anyone else, so sometimes we might need to trust our own judgment. I have decided to tell her I will not be taking any bone meds until a bone density test comes back with bad results. Then we can revisit the options.

Carool

MarcieB, I’m glad you got good results on your bone density test.

I’m years overdue for a second b.d. test (my first showed osteopenia in my hip). Kp2018, I appreciate your info on possible dormant bone tumor cells in marrow. I’ve had vague thoughts about the possibility that these bone-growth-enhancing meds causing bone tumors, and what you said corroborates these fears (though I’m sure the chances of developing a bone tumor are very small). I’m going to avoid these meds unless it becomes urgent I take one of them (Reclast, then).

MarcieB, I’m glad you brought up this topic.

MLT

I have BC Mets in my sternum. I was getting an Xgeva shot every month, recently changed to every 3 months. Osteopenia has improved. I also take calcium and D3.

2943

My bone Dexa numbers improved while on Prolia. Hopeful to return once this back issue gets moving in a positive direction! Hugs!

Redporchlady

Right after chemo my ONC and primary put me on Fosamax for 5 years because I was osteopenia. I just went off the meds back in November 2020 and also started strength/weight training in November 2019. I will be 58 in October and started strength training almost 2 years ago. I had a bone density test done and no longer am osteopenia and also improved my bone density. My primary states I should be fine going forward with my calcium supplements and strength straining. He said the weight bearing exercise will keep my bones strong. Because of strength training I am in the best shape I have ever been in. I am 5'9", 135#, can squat with 65#, hip extensions with 195#, dumbbell lunges with 2 45#, Bench press 65# and lat pull downs of 95#. My trainer knew I had a full axilla dissection on my right side (lymphedema possibilities), arthritis in my hips and knees. It has taken a lot of work to be even where I am at but I no longer worry about lymphedema, my bone density or arthritis. Best thing I ever did!

Carool

Redporchlady, wow! That all sounds great! I’m so sedentary these days (I’m 73, btw). If I had a red porch (or any color of porch), I’d be sitting there all day!

Redporchlady

My trainer works with people into their 80's! He is 35 but amazing. I loved my red porch. After my cancer we sold our 10 acres and farmhouse and now live by a lake. Less stress! But I had a huge wrap around porch on a 100 year old farmhouse.

Carool

Your red porch sounds wonderful!

MarcieB

Redporchlady, I think we all have wrap around porches in our souls...I love that yours is red! Thank you for the information, I really believe the weight training can make a difference for all of us, no matter where we are in our recovery. I discovered the YWTL regime for strengthening the shoulder/back area and I do that now with 2 pound weights. My back is much straighter - I don't need a doctor to tell me that, I can tell. AND - I can now rock a sleeveless house - move over Michelle Obama!

Lorie

I have had bad bone scans, osteoporosis for years. After the cancer treatments, I got one shot of prolia and then my teeth started having issues. Am not finished with dentist so have to postpone future prolia for now. Had heart issues and was sent to cardio rehab and started exercising. Graduated and needed to keep something up so now walking the dog a mile each morning and joined Planet Fitness($10/month plux tax) and kept up the cardio and started on the machines in the circuit room which are weight bearing exercises for arms, legs, etc. Wish I had a trainer like you REDPORCHLADY. Is he part of a fitness center or a private instructor? You go girl. Will be curious to see if there's any improvement in scans after starting exercise. Won't know for few month tho Marcie.

Redporchlady

Love it MarcieB! I know that I have had people ask me how did I get those shoulders and arms. I wear sleeveless too now. I think the key is just keeping moving and do what we can. Lorie - he is a semi-private instructor. He owns the gym and works individually with you but there are others he works with at the same time. We are just always doing our own routines but he is quick to correct us so that we don't injure ourselves. That is great you can go to Planet Fitness!

MarcieB

I love all the interaction we have discussed here. I think it says a lot for us that we can take active part in the decisions about our treatment. And we don't have to just sit by and take pills, we can walk, and exercise, and eat healthy, and all kinds of pro-active things! Honestly, I think I can hear Helen Reddy singing, "I Am Woman...." right now! (lol!)

ChicagoSandy

I had my first DEXA in Nov. 2015, half an hour before my first radiation treatment--a month before starting letrozole. It showed preexisting osteopenia. I have GERD, so an oral bisphosphonate was not an option. But, according to a consulting endocrinologist, neither was "doing nothing." Weightbearing exercise was okay but ballistic (running, jogging, jump-rope, impact aerobics) was not, as I have bilateral knee implants. I wanted Prolia, but Medicare Part B & supplement said it was a "drug" and wouldn't cover it, and Part D said it was a "facility-administered treatment" and punted back to Part B. Out of pocket, it'd have been >$4K per shot twice a year for 3 years.

So I got one Zometa (Reclast) infusion, which was a nightmare: trouble finding a vein, painful with each click of the infusion pump, and then 3 days of a "faux-flu," spiking a 103F fever at one point with several days of foot neuropathy.

But a couple of months later, Medicare reversed course, saying it would cover it for breast cancer patients taking an aromatase inhibitor and diagnosed with osteopenia. So I had my series of 6 Prolia shots over 3 years--with no side effects and at no cost to me. My Jan. 2018 DEXA showed slight improvement; and in Mar. 2020 (just before the pandemic shut down elective procedured), one reading (an upper arm) was within the "normal" range. We'll see what Mar.-Apr. 2022 shows.

I was quite nervous about the spectre of ONJ, but I did not have any extractions or dental implants done. An upper central incisor abscess made that tooth, which protruded, a bit "wiggly," but root canal fixed that--and my dentist referred me to an orthodontist, in order to straighten my upper teeth and thus stablize them. So I had Invisaligns--at age 68! I'm 70, and still faithfully wear my clear retainer. Geriatric orthodontia helped me keep my teeth (knock wood).

ChicagoSandy

Should also mention I've not returned to the gym since first needing arm/wrist surgery in 2018 (shoe-malfunction fall) and then the pandemic shutdown. I'm afraid to. I just walk when I can and carry heavy grocery bags when I need to.

legaljen1969

Sandy, that is quite a little journey to get your Prolia shots. It sounds like it was worth it in the end. I love that you had Invisalign in your 60's. I have been thinking about doing that too (I'm still in my 50s).
I don't know when I will be able to get back to the gym after wrist fracture. I am so annoyed. Every time I want to get back at it, something comes up and derails me. I am with you on the walking. I try to walk as much as I can and I carry heavy bags if I have to.

cards7up

Diagnosed 2015 due to a T11/12 fracture. Had a biopsy done due to my previous NSCLC diagnosis and it wasn't cancer, thankfully. After my BMD, I started Fosamax and took it for 3.5 years. After my second BMD, there was very little improvement and my endocrinologist retired. Got a new one and she recommended IV Reclast. Had one a year ago and due for my next one at the end of October. I only had a few heart palpitations overnight. I had some improvement this time and hope to gain more with the next infusion. I've found that being totally hydrated and taking your calcium/Vit D on a regular basis has helped me not have side effects. Be sure to hydrate after as well. I also had them slow the drip down to half an hour instead of 15 minutes. My new doctor orders a blood test checking calcium, Vit D, and some bone markers. I have that done 3 weeks before the infusion. Last year my Vit D was too low so they prescribed 50,000 IU'S for 4 weeks and then once a month thereafter. I'm active as I'm a caregiver for my sister who has NSCLC and other health problems. As with any drugs, you could have side effects or even long term side effects. When the doctors order the meds, they're looking at the here and now and have no idea if you'll be one in that very low percentage that will get serious side effects. There are some drugs you can't take if you've had radiation treatment, which I did. But my doctor knew this. Seeing a specialist that deals in osteoporosis is a necessity. Your PCP or Ob/GYN are not the ones who should diagnose you and recommend treatment options, unless they're certified osteoporosis specialists. I will continue to do what I need to do to keep me upright and walking. I'm not going to worry about long term, as none of us are promised tomorrow and why worry about it.

Mary1313

My oncologist recommended zometa for me (breast cancer survivor, no chemo, osteopenia) but my ENT husband said not to do it because of jaw necrosis. He sees a lot of it in his practice and says no dentist will touch me if I need a procedure. My dentist agreed. I’m taking D3 and K2 which pulls calcium from the bloodstream into the bones. Weight bearing exercises help.

debbien507

After my stage IV breasts cancer diagnosis 5.5 years ago, my onc started me on monthly Faslodex and Xgeva. The Xgeva is meant to strengthen the bones against bone metastasis which I had, but also can make the bones brittle. After about 4 years on the Xgeva, I got nervous about the jawbone osteonecrosis side effect and asked to have the Xgeva reduced to once every 3 months and my onc agreed. Fast forward to 1.5 years later (January 2020). I was having pain in my right hip and down my right femur. He ordered a bone scan. A spot showed up on my femur with the radiologist reporting possible cancer. My onc ordered an Xray, not believing it was cancer. Findings showed a "thickening of the same area of the femur." It looks like a pointed area sticking out from the bone.

After doing a lot of research, I believe this is "Atypical Femoral Fracture." Basically this means micro-fractures that can and usually do turn into a full fracture of the femur. I looked on the Xgeva.com web site and sure enough, a side effect of Xgeva is "unusual thigh bone fracture." Sounds like a different way to say "Atypical Femoral Fracture" to me!! They say it is rare. But it is likely to happen in both femurs. Well, not many of us have been on Xgeva for this many years. The ladies on the Prolia version of Xgeva (same drug, different name) for osteoporosis get half as much twice a year that we get every month.

What's the fix? Usually, they install a long rod in your femur so that it won't break. In my case, since I already have bilateral hip replacements, it means it has to be taken out (ouch), and a new one with a longer stem down my femur put in. My orthopedic surgeon has referred me to the head of orthopedic surgery at Stanford Hospital.

My warning...Keep an eye out for this side effect. It is rare. But I would guess that it is rare only because there is no data for people who have been on Xgeva for as long as some of us are now left on it. Consider reducing the frequency of your injections. Read up on "Atypical Femoral Fracture" and be on the lookout for it.

MarcieB

All of these experiences are extremely helpful to me. Now I have a list of questions for my doctor when I see her in Oct. I also feel more empowered to make a decision for myself. This has been so helpful to me and I hope for others as well. - which is what this site was originated to do!

Which brings me to another question - how did each of you, who commented, find this question? Was is listed on a Digest notification? Have you been getting daily Digest notifications? Since we cannot seem to post our questions under the QUESTIONS heading any longer, I am wondering how everyone fund their way to this question? I see names here I have not seen before, or in a long time.

And how in the world, can we find out who is in charge of this site these days? Wouldn't you LOVE to see it back in business, working like it used to? I wish we could get that to happen.

Redporchlady

MarcieB - I get an e-mail daily that just summarizes some posts that may interest me based I assume on my original settings. I know because your's showed up Bone Meds in the heading on that post it peaked my interest since I had been down that path and also learned some things about bone density. For me it was just pure luck I commented because I never come out to the site unless I see something that peaks my interest in my daily e-mail. Honestly I don't read those all the time either so again pure luck that I spotted this one. I agree it is very helpful for anyone looking for ideas and to help with questions for your doctor. I am glad you had a great response!