ANYONE ELSE SUFFER FROM SPONTANEOUS FRACTURES SINCE STARTING AI THERAPY???
I am ready to snap!!! #funnynotfunny I DID snap!
this is the 3rd time since the end of my ‘treatment’ for breast cancer that I am pretty well crippled due to #'d metatarsal(s)
quick condensed recap:
-dx with breast cancer march 2020
-bone scan clear
-2 X lumpectomy
-16 X radiation zaps
-AI started 2020--within same week #'s to 2 metatarsals
(I of course blamed the Anastrozole, but all the medical types poo poo'd that idea)
-walking boot and physio X months
after the original break this darn foot NEVER felt the same again..I am not 20, so I get it….I guess that's part of the privilege of getting older, our bodies don't bounce back like they used to.
I ‘baby’ it; if I have extra busy days in the clinic I have to come home and just stay off of it.
I've spent a bloody fortune trying to find a pair of shoes that supports it properly….and then pretty sure I refractured just due to increased activity in the spring…..played doctor on myself and treated at that time.
FINAL STRAW…..went for a short walk last weekend and foot was 2x the size….yep…it's broken……(to be confirmed by bone scan again this week, PS: how much is too much diagnostic radiation????), but I'm pretty sure I know what a fracture feels like, and this is it!
-how do you up your calcium to account for the decreased bone density side effect of AI?
-I know nobody can answer this for me, but I wonder if I should just ditch the Anastrozole and try something else?
I CANNOT sit around for the rest of my life……I am so FRUSTRATED with this…..my pre cancer lifestyle included 15-20000 steps per day; these days I'm lucky if I get 4-5000 in…….
I know in the scheme of things this is not a biggie, and whining to folks who are not in the ‘cancer club’ makes me seem so frivolous; so thanks for listening and understanding.
any feedback mucho appreciated!
#breastcancer #Anastrozole #bonedensityposttreatment #calcium
I am tagging @Runner Girl into this for you. I know she had switched off meds recently to the Anastrozole herself. She may be able to offer you some tips re the bone loss and how to manage it. Have you asked your oncologist the pros and cons of switching to another drug that may not have as much of a severe side effect? Might be worth a conversation.
You mention your pre cancer self. I and many can relate to that issue of reduced stamina, ability and all else that follows us long after the treatment ends. It is worth sharing with others here - because we “get it” suffer from it and endure it. People would see me after my treatments and the hair grew back etc… and say the usual “you look great” and assume all has returned to normal. My standard reply after a while is / was “I am an old rusty car with a new paint job”, and I am sure you and others can relate to not wanting to go through all of the issues we have with our new normal.
Back to your foot: Have you had opportunity to sit down with anyone such as an Orthopaedic specialist? I suggest this on two fronts:
1 - the issue with the bone loss potentially creating your fracturing, and
2 - Obtaining information and contacts re: supporting your feet as best you can with the condition issues and also looking from the prevention perspective.
You and I know how frustrating it is to work through the obstacles of dealing with our chronic issues toward being the best we can be. We have our lows that just require getting through that period until we can make sense of how to move forward again. I am constantly in and out of that myself - so we are in good company here - right?
Hope my tag, and suggestions and “getting it" help you Sue.
Keep well and keep moving forward.
P.S. - How much diagnostic radiation is too much? The standards set are meant to keep us from suffering too much - however we will each require different amounts / types based on our individual situations. My Unknown Primary and the number of PET, CT, X ray and other tests required prior to after chemo surgeries and radiation itself and surveillance afterward has definitely exceeded the standards set for an average person - but weighing the risk / benefit has always lead to me requiring and accepting the extra doses. Giving you an option for medications or means to reduce the bone loss will hopefully reduce the diagnostic need due to the fractures.
I am so sorry that you've broken your foot, yet again. Fortunately I haven't broken anything yet, but I've just finished my first 60 days on Anastrozole.
I take calcium and magnesium supplements multiple times daily. 2 cal/mag and 2 mag capsules in the morning, 2 cal/mag capsules about 2 in the afternoon and 2 mag capsules about 8 pm. Because of my IBS I cannot take in dairy products. So far this combo has been working well for me.
Thank you @ACH2015 for the information and the tag.
@supersu when I was deciding which one to take, Letrozole or Tamoxifen, my oncologist sent me for a bone density test prior to giving me a prescription. I would start there, have a bone density scan and you will know what you are dealing with. If it is from Letrozole, then you can take something called Prolia for bone loss. There are a number of options, but first you need to find out the health of your bones.
I've been on anastrozole for close to 4 years. I had a bone density test before starting, one after 2 years and will have another in November. I highly recommend you start there. I take calcium, magnesium and vitamin d to help. I have a bad knee and have trouble walking but I do weight bearing exercises which are also supposed to help.
Please try to get a bone density done soon. Let us know how you make out.
I had my first dose today and am taking 2500iu vitamin D and 500mg calcium. My bone scan was good at low risk for fracture and as soon as the anastrazole is established I will get iv infusion of the bone builder zoledronic acid every six months.
Hang in there!
I am taking about 2500 mg of calcium/day, have been for many years now as I was warned I am a candidate for osteoporosis and I cannot have dairy because of my IBS.
I am taking 800 mg of magnesium/day. 2 capsules in the morning and 2 capsules at bed time.
I take 8000iu of vitamin D per day. 5000 in the morning in the form of drops in my protein drink and 3000 in the afternoon as gel caps. This was recommended by my naturopath.
I have not been offered Zoledronic Acid.
thanks everyone for your insight and suggestions.
I was truly at the end of my rope when I wrote the original post. a little time, a little pizza/gin therapy and your kindness and allowing me to be so vulnerable in my frustration has me back to my ordinary old self---
I have gotten requisitions for: BMD & bone scan. even tho I have had crazy amount of medical radiation this past year, I am going to opt for yet ANOTHER bone scan….to confirm the break and to offer me some reassurance as I have had some concerning new aches & pains. sometimes peace of mind is worth a few zaps….ha ha ha
as for someone's suggestion that I consult with my onc….I was kicked to the curb as soon as my 6 month check up was done…not even sure if they'd take a call??
I am hitting up my family doc for this followup - she is a gem.
thanks again for your support
it means EVERYTHING
Thank u sister! I Don’t want to wine or whimper too . You took my exact words and thoughts out of my mouth in FEW valid points as Runner girl on another issue CT scan reaccions !
So when I fell twice…
She saw an old injury found determined from X-ray techs this emerg doc
And who took the time with me waiting 6 hrs. showing me on L’INE hosp s creen
( so we looked at my hosp.on-line càncer scans file too ) with broken bone bits from heel spur. Sending letter 2 my GP
But notice now from falls; I m cannot bé on it prolonged either or run touch it against sheets , table , start not Even materials . Frustrated too ; Even more sedetary. Either u name the source of pain :that spasms , shoots, aches sting ing , pinches & sends me to the moon ! Asked for a brace at hosp. bc a womans Gotta move I told my own GP too . Got a boot for better longer movements .
Emerg Dr . I think I am go to ask her for coffee at hOSP . At least thank her for her extra effort time to find out more with me & show ing on the screen plus ask from X-ray tech s .Uou said it all
Bone D test I had to ask for it , but onco said to have my GP do it . Must be your private insurance benefits bc u had other stuff done to begin . I did not have !😵💫wondering !
Did bone density show low
Who advised that ? What about heart attack from so much calcium ?
Hmm so much D what about liver was this prescribed ? I asked a dietician about D she said 1200 any more will not be good toxic to liver
Sorry : Don’t understand your cancer free then why Anistroszole ?
You are asking why we are taking Anastrozole. The answer is we have to. Our cancer is driven by estrogen. Even after menopause our bodies still make estrogen by way of the adrenal glands. Anastrozle, Letrozole and Exemestane are aromatase inhibitors that block the production estrogen in our bodies. Recurrence rates are much lower if we take this medication. It wreaks havoc with our bodies to be estrogen deprived, causing bone fractures and untold other issues. Many women cannot tolerate the side effects and end up quitting their AI ahead of time.
I hope this helps explain why we are on this drug.
@supersu You said: “as for someone's suggestion that I consult with my onc….I was kicked to the curb as soon as my 6 month check up was done…not even sure if they'd take a call??”. I suggested speaking with your oncologist regarding seeking other medications as options due to the suspected bone loss. Who monitors you if not the oncologist as to the medications and follow ups ?
anastrazole is to blame but it’s also helping me stay safe from progressing to stage 4. Also they said my chek2 mutation is biallelic (so I have 2 copies of it), which is why I had another primary tumor on right side, and the GIST tumor…awww cancer, the gift that keeps on giving…
my second mastectomy went well, and surprisingly I love my tissue expanders and cannot wait to have the implants exchanged in October. These new boobs are wonderful! They are high and tight! They look and feel so much better than the original ones, and I love shopping for frilly bras. The original ones hurt all the time, and all that pain is just gone, so that has been a real blessing.
thanks for the follow up!
update: as per my tests this week, bone density is just fine.
my problem turns out to be an unhealed fracture from last JULY….I guess at this point the investigation turns to WHY it has not healed over the space of a year……
my family doc is the one who co-ordinates my health care now and I am being referred to orthopaedics…..no one thinks it is the meds.
I was told at my 6 month check that I was being discharged from the cancer centre care. I found it kind of weird, since I read here that folks are followed for much longer…..but OK……I dunno….I've never had cancer before…I just go with the flow ;)
fingers crossed I never have to access the cancer clinic again
I find it interesting you were discharged so soon as well. If a person is prescribed medications for cancer control and recurrence prevention, I'd think the follow up would be with a medical oncologist - not a GP.
I hope you get to the bottom of why your year old break did not heal, and the solution comes sooner than later.
I meant to add that I have been dealing with a lot of bone pain the past couple of years, and underwent a bone scan (with radioactive dye) last December to make sure there was no cancer going on. It was clear, and I recently spoke with my GP recently and mentioned the pain is still there. I am now waiting for a bone density scan myself. I had to take large amounts of prednisone during part of my treatment phase, and the GP wants to see if it or something affected my bone density. Always something going on to measure risk benefit with all that radiation - right? Many of us in the same boat.
ugh….I know what constant 24/7 pain does…it is a slow burner that zaps a lot of joy and almost all energy…so sorry you are dealing with that!
back in the day, I actually performed bone density scans, and I do recall that high dose prednisone is indeed a high risk activity for bone density.
the happy news is that your bone scan is all clear.
good luck with that, and I truly hope they can find something to alleviate your pain….so draining.
personal note: I have really enjoyed chatting with you and the others this last few weeks…thank you so much for sharing your story & experience – the generosity in this community constantly blows my mind. thank you.
enjoy your sunday!
it is so smokey here in alberta, I am afraid to go outside….wild fires are out of control and at ‘sunrise’ it feels like it is evening it is so dark out.
Thanks @supersu , its been nice talking with you as well. Always something we get out of sharing our experiences with each other.
Interesting that you used to conduct the bone scans tests yourself. I was not aware the bone scan I had was specific to checking for cancer and not density. Let's see what the density test shows. The prednisone was needed after the immunotherapy failed and helped to repair my colon that was severely inflamed as a side effect. Thanks for that insight.
The smoke you mention - B.C. fires? I remember when Quebec forests were on fire a decade or so ago. I am in Ontario and went outside one morning and thought our forests were burning. Scary stuff when it is so thick and smells so fresh. Hope these fires are brought under control sooner than later.
When the smoke is thick and strong - best to stay indoors and not breathe it in.
I was also kicked to the curb with follow-up monitoring handed off to me and my family doctor. They gave us a list, and timelines, and I put it in my diary/calendar, and then contacted my family doc a few months before CT scans, colonoscopy, etc. were needed so they could be ordered. I got an ongoing req for quarterly cea bloodwork and monitor results on our health site. It was my understanding that due to the patient volumes, anyone that they were not actively treating, or could not help anymore was dumped. We have community health centres that I have contacted to connect with dieticians, exercise specialists, someone to talk to, etc and they are excellent. This is in Edmonton.
Thanks for the info and input here. It is important for all of us to keep ourselves in the loop with surveillance and monitoring. I fail to understand why someone that has undergone cancer treatment(s) and is discharged by their (medical) oncologist, then has follow ups with a GP while taking a cancer drug for maintenance and ongoing preventative therapy. To me, there should be a schedule that the oncologist looks at blood work or other testing to ensure the drugs prescribed are doing their job, and if adverse side effects are present - recommend an alternative drug be used. I understand the shortages and demands on oncologists - especially after playing catch up due to covid - but we don't want to fall through the cracks either - right?
Hi there, I have had the chemo, the radiation the bone scans for density and the one to check for bone cancer. I had a double mastectomy in October of 2020, with 27 lymph nodes involved. My oncologist has set me up to have a medication called Zoled for short to help prevent osteoporosis. I presently have osteoarthritis. I will be getting this intravenously every 6 months. It only takes about 15 minutes. I have been on Letrozole for 5 months. I like runner girl take extra calcium about 1,500 daily and magnesium 250 mg about and I also take two 1,000 units of vitamin D because for some reason my doctor found my vitamin D levels very very low. I hope this is helpful. Take care.
Hi Have u seen this link updated Systemic Therapies http://www.bccancer.bc.ca/systemic-therapysite/Documents/2021 ST Updates/ST Update_July 2021.pdf
There is another drug besides Anastrozole . But I too am on this with IBrance /Palbociclib this is my 7 th month and my WBC showed below one ! I am off of Treatment with a blood test in 7 days .
Could it bé the work Insurance Plan coverage ? Check , go to CCS pagès& u will see an article and table chart of DIFferent càncers & how long they are covered by your employer work & HR Ie 36 weeks for some càncers ?!Check with other moderator which going to be extended for time off for cancer .
Now this new sub GPO I got thinking it was also interested in my heel seeing it was Tendonitis on my xrays that should not of be done and with Calcium built up there on the tendon . Broken bits of spur bone still. It feels like it is on fire up to my knee all misaligned as I walk . In the morn , get out of bed , my knee feels stiff swollen and twisted . He reccomends an ultra sound be done . Asked me could he go ahead or did I want to see , speak to my GP ( for years worsening ) . Her handling this, nothing done , partly my fault. Wondered then why did I need to see an Orthopedic surgeon being , diabetic then worries me and only wondered how to afford the cost of Orthopedic & in appt time . Men do not go , sports athletes are put in the hospital for 6 months !
Right now if I lift my heel up like a high heel , it feels better . Its a huge golf ball size growth of variïous tissues . I saw a Podiatrist* . He gave one of three assessments with solutions possible and being MBC . The least invasive to the most . All I know is the pain is unbelievable , nothing in meds help. Lol knock.me out with brandy milk . But just being off of it not driving . And when being weight baring , walking or standing on it certain times frustrated .
Even got a boot . Definitely seeing a Osteopath for his opinion could hurt . Now a days of COVID measures and vaccines with variances will they see U unless your a candidate for surgery ? They R the highest paid physicien specialists . Of course u & SuperSu know this .
There are other side effects for Aristrizol I have my reservations too nor like it either . A physically dramatic menopause I do not need ! Some doctors avoid saying let’s forgo that . That it was good that my Oncologist s Female avoided to do with hysterectomy at PM leaving Ovaries inwhich just disappeared ! 🐼Elle 29 🦉Q: Do your toes curl ?
Wasn't it because that’s all your coverage by insurer ? Does that happen to everyone at 6 months . What u r diagnoses Advanced ? A lot of us got aggressive Cancers right at onset of the Epidemic became a Pandemic prolonged with uncertainties . The population being wiped out possibly ? Anxiety uncertainty around the corner with mass hysteria. GN
I always enjoy your posts - so full of info/questions/and emojis!!!
I don't know that my anastrozole has anything to do with my health care situation, but I guess anything is possible. it is dispensed directly from the cancer centre, so I would presume that they are utilizing the most cost effective drugs as long as there are no indications not to????
I am waiting for an orthopaedic consult re: my foot.
so sorry you are in pain. until I felt it, I would not have said that foot pain was a ‘big deal’, but we both know it really changes the quality of life. ugh…..
I hope you can get some relief/help soon.
sounds like you have lots of folks on your medical team that can help you.
Thanks @Supersu 🦦 Art visuals as Emojiis help orient my texting & editing as a little light hearted chuckling . I imagine you as a super hero in your cape emoji . And championing through your cancer to go back to work , instead of take a leave all that living and costs to figure out does have more supports in health care delivery with illnesses as cancer .
Its the every day life we have . I had to get a cleaning lady my daughter found wonderful a friend of her mother in laws Si far wonderful for me uplifts m’y burdens under cancer s agenda . Nothing to complain about this AI treatment plan to give it my best but know . So cleaner asked me sympathizing with my cancer schedule . I said: « Oh it’s nothing really I am so grateful to have this treatment plan ! It’s just figuring the side effects and handle we seem to have to do ourselves . Can I just change our schedule bc I find I get run down more as this end of cycle . «
FYI : And I am glad I noticed how I felt more tired , low appetite , wanting to sleep longer , wanting to only eat red meat beef and munch only . And urinating alot too . Pain prolonged t night just more tired . How do U this while working ?
Changed doctors should I be concerned they manage all the time with the system of health limited or restricted delivery as noted on here . All pple are entitled to get cancer.
treatment and care .
But we need to ask know what it is , before I had corpirate coverage under my dad and hubby and Iniversal Health Care with the province . Now here it’s seems a lot is some how arranged with your doctors as a team as Oncologists .
I now use a Satellite Cancer Clinic under the Unbrella ☂️Primary Oncologist Cancer Centre and BC agency . With my new sub GPO insisting he get a copy of lab results , to look at it before leaving . He only works partime the nurse said . « Oh dear I think in my head « Are they reducing my care ? 🤷♀️ Should I ask be concerned ?
💁♀️🙇♀️🙆🏼♀️Honestly we have to assert or be kindly asking out doctors what to do ! I have been with my own GP /FP speak openly . It’s your body I keep thinking like a mantra when listening to doctors like my heel ! I think this is how they are getting around the fact I do not have extended private employment health insurance . Like group doctors in TO at clinics . Its those little subtle or direct comments being spoken « « Ig we can only have one bone density a year « The rest is paid by the patient . I put that link on my page that clearly states for what cancer there is what covered under Systematic Therapy updates for each drug / medication combo .
? 🦃( It seems during COVID doctors made more concessions ? Or some double booked my Diabetes specialist office denied I had a prebooked year appt just at a time I needed his consult pre cancer surgery ! That my Surgeon intervened to tell that Endochronologist office to advocate saying « That is not the way we do things ! »
🦢So admire the way the women here take on their cancer challenges to share here as I am not in the workplace with retired small income . Pumped up to prove how we can do anything , despite the whirlwind most of us went through initially from Ultrasound Mamm to 1.5 hrs surgery. to assessment with a Priimary Oncologist team in 2020 / Get this cancer monstre out ! Let’s move on to back to living our lives . And don’t mess around with us !
🦍Jump right back into life with an Attitude « we can do it .! « Only I am retired at a slower speed . I was amazing that in 3months Cancer recovery for yourself . You are back to work proving it ! Supersu !!!
🐑What happens when work coverage is over referring to CCS page article on this and extending. Coverage longer in table chart for cancers .
🦧Good news my cancer is getting reduced again another 50 %under this AI treatment .
My meds AI are both , too despensed from Cancer Clinic .We do have protocols here too they follow ! But this 7 Th cycle I have been so tired they found my WBC too low at point 8 ! No treatment until they check blood lab again in a week . So I look forward to this break but find I do have low appetite too and will be ready to continue the challenge GRATEFUL i have this treatment plan !
But concerned I have 2 substitute doctors not expressing my anxieties to comment as others have here feel dumped after 6 months . WillI too lose my Primary Oncologist ?
... Happened so Quick to get run down , I felt this time at the end of my 7 mnths . cycle . Feeling the momentum still I have yet a list long , to do too . My body just not cooperating ALL the hidden aches and pains resurface at the end of the day making sure I take only mild meds like Ibupropen , Tylenol or Aleve and rest .Brush teeth gargle eat nutritious . Especially nor wanting to get Neutropenia ! By letting go of cleaning up garage : to make space to sell kids furniture or postpone dirty jobs dig plants gardening . Until I see lab results . Let those go for awhile do what matters to preserve improve my health . Do I take that risk NO as Dauntless a member said she was so sick had Neutropenia !
I do not like bed rest , so I got a modern double lounger inside ( Like those old chairs our dad , or granola may have sat in all stuffed with handles to watch hockey or curl up with grand kids or pets falling asleep in them ? ) Yes rest essential too as single women some have lots to do asking help or hiring contractors but be active too with stuff to do .Yes it bothers me the grass is not cut weedy a mess or house cluttered . But it will all come together .
As for lots of doctors I was getting no to little response with local clinic until I kept calling and as this GPO said the treatment in your body is progressive ! I did not have his time to inquire more . Did he mean it gets progressively worse ? Or progressively accumulates more in your body . I believe the latter bc I said I asked the Pham. b4 starting treatment that gave me a sheet of stmptoms side effect be aware of 🥲😜😅 There for the side effects will increase like ; pain , embolism, clots , and Osteo etc for AI , so far been minor like Red Hands ictchy skin ?
Personal fun ; 🏡🏘 Suburb life by the coast and all the amenities . My home is modest but beautiful area location affordable still with new and 90s homes suppose to be quiet family area well sought after . So the house next door 3 story looks over the ocean views we are a cul de sac . I will miss the family there . Do u like to look at houses , it’s under 46O realty I think Angela Ospray send u correct link if interested to move retire to the Island here .
Took me 4 years hunting online working and visiting family . I loved both places had such good pple church friends I left behind .
Today my 3 daughters come to help moi empty a bedroom , to convert into a dressing room for me . ( also my mum just transitioned to a nursing home shipped us all her furniture some my dad made ) Now we r figuring how to use fit in our places our homes . And a plan more organized house , to have a dressing room separate like a walk in closet but a room . And to just use my own bedroom for healing rest , sleep I need and a little less cluttered . Check out groups Here may inspire you too .
Was it you Supersu though that wondered did Anastrozole cause fractures? That thread here . As 2 doctors are most interested spending time with me to get my heel dealt with keeping me aligned and on it upright . I guess more now bc of cancer med Anisstrozole ... We R all here need this treatment I was IDC then bécame MBC given 2 years prognosis then told 10 year prognosis changed that quickly by my Oncologist I feel comfortable to be myself and wanted me to live longer being a positive approach . When I reported being shocked by the delivery of a GPO .
We all R here searching answers and what best to do in défense of our bones becoming like Swiss cheese . I think some of your communities hVe specific exercise programs for osteo ? I even asked the GPO in my situation . Where do WBC come from bones ?
So basically our bodies bones are being used to manufacture, our cancer treatment taking away from us Eg our bone health ?
cause “bone fractures “