Walking on egg shells with MBC bone ... - SHARE Metastatic ...

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Walking on egg shells with MBC bone mets .

Thatflowerlady profile image
22 Replies

Happy New Year Everyone !

A question , has anyone else had fractures due to bone Mets ?

In september I suffered a fractured hip . I have a metal plate , rod and pins to enable me to be able to weight bare . It has been a long painful recovery with a few ups and downs . The hardest part for me is the psychological part of knowing that my bones have gotten to this point of breaking without trauma . I have a palative care pain team taking care of my pain management but wonder if other MBC thrivers have any tips on dealing with their mental health . Living life to the fullest without being too reckless can be a bit of a challenge . Any tips on dealing with this stage and side effect would be appreciated .

thank you

, That Flower Lady

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Thatflowerlady profile image
Thatflowerlady
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22 Replies
Dragonfly2 profile image
Dragonfly2

Beautiful Christmas arrangement! It explains your name for sure! Im sorry you are struggling with bone mets and fragile bones....I too had a terrible situation when I was first diagnosed and would have featured my pelvis in time. Since then I have had radiation to the tumor which stopped the cancer there and for th past 2 and a half years Ive been taking SOmeta which is strengthening my bones. At this point X-rays show that my pelvic tumor has literally refilled with bone and I can walk normally...the Zometa (an infusion) which is zelodronic acid is used by patients who suffer from bone loss... please see if this should or can be added to your treatment...best wishes for the New Year!

Bettybuckets profile image
Bettybuckets

Lovely flowers! I was going to add that an xgeva shot is comparable to the IV Zoe at and is helpful to strengthen bones. So that is another good option for you.

Thatflowerlady profile image
Thatflowerlady in reply to Bettybuckets

I had received the Xgeva shot for 5 years prior and quit in Nov 2021. My oncologist felt I had likely received as much benefit from it that I was going to get . But it has made me wonder if the bone Mets got worse after I quit taking Xgeva ?

Bettybuckets profile image
Bettybuckets in reply to Thatflowerlady

just checking sis you take the shot quarterly or monthly? My onc suggested I have it quarterly so that I could stretch out how long I was on it. I started it in nz and they would only pay for 24 shots… or two years but by taking it quarterly I could go a lot longer. Now I am in USA and my Onc here thought that strategy was good so still getting it quarterly

Kerryd22 profile image
Kerryd22

I’ve had two heavy falls on concrete in the last month or so and feel fortunate not to have done any damage either time although my head hurt a bit after the last time. I was diagnosed stage four de novo when an MRI ordered by a physiotherapist showed metastatic bone disease in my right hip ball and joint. Also in my spine at T7. That was in 2015 and I had radiation on the hip and T7 that year. I’ve been on Xgeva since then. My skeleton is riddled with bone mets from the skull downward. The radiology consultant warned me that if I fell and broke my hip I’d spend my final days bed bound and I wouldn’t live long. I’m on palliative treatment and she thinks I wouldn’t find a surgeon willing to operate under the circumstances. She told me to do weight bearing exercises to help build bone strength but I don’t do much except the usual tasks such as walking, gardening and cleaning.

I know that some people have had issues with Xgeva but I feel it’s what has helped keep me on my feet even after doing the very thing the radiologist warned me against!

If you aren’t taking one of the bone strengthening drugs along with calcium and vitamin D then I encourage you to talk to your doctor about it.

All the best

Kerry

Thatflowerlady profile image
Thatflowerlady in reply to Kerryd22

I guess I should consider myself very lucky that we did find a surgeon willing . All plate , pins and rods, loaded for walking .

13plus profile image
13plus in reply to Kerryd22

As an aside, it is really wise to seek out good PT to build more strength in your ability to balance well (more challenge than everyday activity provides), so that you have a much better chance of preventing a fall. Prevention is the key to preventing fractures. My pelvis is also riddled with lesions

Thatflowerlady profile image
Thatflowerlady in reply to 13plus

what exercises have you been instructed to do ? Have you had any previous fractures?

13plus profile image
13plus in reply to Thatflowerlady

My original lesion-related injury (that eventually led to my METS diagnosis but months later -it’s a long story) was a partial compression fracture of one of my lumbar vertebra, meaning it collapsed on itself when I sneezed hard. It brought me crashing to my knees it was so incredibly painful.

But I teach movement (Pilates) and fitness and somehow I eventually got myself moving again over a few weeks. I thought I’d done something to the disk. I was just incredibly lucky to already be strong enough in the core that I was able to build myself back slowly.

So I can’t make suggestions here sorry, you need individualized and appropriate exercises that require a proper evaluation by a professional. I suggest it as something to seek because you mention having already fallen twice badly. I mean, to be honest, it’s kind of like playing with fire to not get yourself agility and balance training to prevent another fall.

As an example of why people fall hard: Walking is good exercise, yes but it also depends how well we walk. We all trip at some point, that’s a given. The difference is, if someone has, over time, lost their ability to quickly pull their foot up higher in response to a trip, then they have zero ability to get that foot back out in front of themselves in time to “catch” themselves, and that’s what leads to a hard fall. Your body goes forward but both feet get left behind.

For anyone aging, cancer or not, falling is the #1 thing that leads to hip, leg and arm/shoulder fractures. So us with bone lesions need to take a special interest in how to prevent an accident. I have a lot of lesions in my pelvis now along with spine , and keeping active helps avoid issues with them. I dread getting anything close to my previous injury.

Sorry for the long reply!

Kerryd22 profile image
Kerryd22 in reply to 13plus

I fell backwards so had no chance to save myself. I live alone on a large property and do all my own chores. Physiotherapy costs $90 for about 15 minutes. And it’s not covered by my insurance nor by Medicare unless it’s inpatient treatment. I was diagnosed de novo by a physiotherapist who ordered an MRI when her treatments didn’t improve my hip problem. I’d previously gone to a physio and a doctor for vertebrae pain but no one performed the right tests. All it means is that I could have been diagnosed a year earlier. My T7 is at about 40% of its regular height now. Considering I too got back to normal after the initial problem and I don’t exercise these days I reckon I’m doing ok without adding more to my day.

13plus profile image
13plus in reply to Kerryd22

I think you read me wrong - I'm sorry I didn't mean to offend you! It's just that I'm used to the fact that most people don't do enough physical activity (but think they're doing ok). I see you're a fellow Aussie :) I've lived in the States for a long time now but from Melb originally. Whereabouts do you live?

Kerryd22 profile image
Kerryd22 in reply to 13plus

that’s ok. I used a personal trainer for several years but I can’t work at that level of intensity now. I’m not sure if the current issue is related to a medication side effect or it’s something different. My mother had a less common form of Alzheimer’s and unfortunately I’m showing similar symptoms. One of her problems was balance issues. So far I have the memory problems and now the balance or lack has started but it could just as easily be related to Exemestane. Doctors say not to worry about it. It’s not as though memory problems are solely due to Alzheimer’s anyway. Or that there’s a cure. So far I’m well padded enough and my bones are strong enough to withstand falls!

I’m in Brisbane.

13plus profile image
13plus in reply to Kerryd22

My mother-in-law had Alzheimer’s. I’m sorry you had to witness your mum going through that and I hope it’s not that in your case. Yes I guess not much to be done about it yet anyway , unfortunately. Enjoy your summer!

Hopeful4Cure profile image
Hopeful4Cure

I would agree. I too have zometa every 3 months, plus I take vitaminD3 in a tinture (oil) at .50ml at least 3 times a week. I eat a lot of cheese also and try to get as much Vit D as possible.

Teddielottie profile image
Teddielottie

Another lovely flower display ! I am sorry you have had a fractured hip but I hope you are able to control the pain . I was fortunate to not have extensive bone mets and so far have not had any bone fractures , but I may start taking a bisphosphonate in a tablet form in the near future. I do however take Adcal ( vit D and calcium) which is prescribed by my onc ( and my calcium levels are monitored with my monthly bloods) Take care ! x

Thatflowerlady profile image
Thatflowerlady

I hope the no fractures continues for you . I must say it has not been fun . I have palliative pain management that is constantly monitored we are working on introducing a new medication to help with the nerve pain . We are currently waiting to see if it works or if hydromorphone will be increased .

Teddielottie profile image
Teddielottie in reply to Thatflowerlady

Anyone with extensive bone mets/ bone fractures should always take extra care . I know someone who has experienced this and they have had to have a full shoulder and hip replacement at the same time and the recovery is very hard . Take care ! x 😘

13plus profile image
13plus in reply to Teddielottie

Ohhh, that’s a terrible Double surgery for your friend to endure. I can only imagine how bad that would be, having helped someone regain strength after a hip replacement. The poor thing. I hope she continues to heal with time.

I dread anything major happening with my pelvis - it’s probably my biggest fear actually

Hazelgreen profile image
Hazelgreen

According to the Internet, "Bone metastases result in lesions or injury to the bone tissue. There are two types of lesions: lytic lesions, which destroy bone material; and blastic lesions, which fill the bone with extra cells." It might help your peace of mind to know if any of your bone mets are blastic, and less likely to fracture.

Although I have bone mets, they are mostly blastic so my skeleton is generally thicker where the lesions were, not full of holes. For this reason, I have felt no need to take Zometa or Xgeva, both of which have side effects (such as joint pain, and possible jaw osteonecrosis).

According to one study on the Internet, both meds helped delay fractures in cancer patients, but Xgeva helped delay the time that people got fractures by 8.2 months longer than Zometa.

I am sorry that you have had this pain-filled time, and hope that the coming months will be better for you. Best Wishes, Cindy

PreciousPete profile image
PreciousPete

Within a eeek of being diagnosed with MBC to bones and while I was lying still on the radiation table for my 5th and final radiation treatment to my spine (L2 to T7), my right humerus broke. The technician knew my arm was sore because I couldn’t put it flet on the table tucked in next to my side so she placed a small wedge underneath my elbow which was just enough for me to take in a full breath and once I slowly relaxed, I not o ly felt the break, I heard it.

At the time of diagnosis I also had 7 fractured front ribs.

It took the specialists over 6 eeeks and my mother phoning them to get my arm fixed and I had surgery to put one large plate with screws from elbow to shoulder and another shorter plate with screws on the back of my arm at my elbow and running up the backside of my arm.

I am on an oral bone strengthener Clasteon. My oncologist also recommended Claritin for bone pain (up to 4 tablets per day) which has helped…….it has to be Claritin brand.

I just passed 5 years and counting on my first line of treatment for stage IV!!

RLN-overcomer profile image
RLN-overcomer in reply to PreciousPete

Wow You are truly a sister/warrior in this battle. You are winning, and still standing.I am inspired by you,and some of the other sister/warriors who fight to be here for their/selves, and their/our loved ones. I pray you will have a Happy&Healthy 2023 New Year😇

PreciousPete profile image
PreciousPete in reply to RLN-overcomer

Thank you! I want to be around for years to come….:my youngest child is 22 and I feel it’s way to soon for me to go to heaven……we both need more time together.

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