Did any of you read the article on Breast Cancer and Osteoporsis in the BCC Newsletter? I have wondered, for some time, what all my treatment was doing to my bones but I think my Onc was fairly sure I wouldn’t be around long so it wouldn’t be a problem.
I have a family history of osteoprosis, early (chemo induced) menopause, eat little dairy, have had 3 lots of chemo, was on Taxoxifen for 10 years and Arimidex for a year - doesn’t look good according to the article!
Has anyone asked for, and got, a bone density scan? Has anyone, who hasn’t got bone mets, been found to have the onset of osteoprosis?
I would be furious if I found my remaining quality of life compromised by osteoprosis when it could have been avoided - I have enough other problems. I will be asking my Onc when I see him next!
Blondie
Hi Blondie,
Had bone density scan a few months ago and it was found that the treatment has weakened my bones, in particular my neck and lower back area. Started zometa a bisphosphonate yesterday to combat this. I’ve been on zoladex for the past year and tamoxifen since November and had AC and Taxol chemo. I’m 28 by the way so pretty young to have problems with my bones but at least something is being done about it now. I think the treatment has been the cause of my bone weakening as I never had problems with before dx.
teacup x
Hi Blondie,
I don’t have bone mets but do have osteopenia (stage before full blown osteoporosis) which was dx 3 yrs ago by a bone scan as I had bad hip, feet and had pain. A bone scan is different to a DEXA bone density scan, which is the test for bone loss. I had already had a DEXA scan before bc diagnosis, as I had been on steroids for 30 yrs for Crohn’s and my gastro ordered it. My bc surgeon ordered another DEXA scan 18 months ago and this showed significant bone density loss since starting Arimidex, which does not protect the bones as does Tamoxifen, but is a better adjuvant treatment to prevent bc recurrence. The surgeon prescribed a bisphosphonate, Alendronic Acid, which I take weekly, and twice daily Calcichew/Vit.D3 to strengthen my bones, and hopefully prevent further fracture. I broke bones in both feet last summer so he was concerned.
As far as I remember, when I had my first DEXA scan the technician said I ticked all the boxes (5 parameters I think) as my late mother had severe osteoporosis, I was on steroids for years, have Crohn’s disease, history of smoking, and hysterectomy at 41 yrs. There is usually a long waiting list for a DEXA scan at my hospital, but because I was “high risk” of osteoporosis I was seen in about 6 weeks. I would think, as you have a familial history, and been on Arimidex you should not have a problem in getting the DEXA scan.
Liz.
Hi Liz, I might try those Calcichew/Vit.D3 myself. Thanks for the tip. teacup x
I had a DEXA bone density scan when I started Arimidex in January this year and was found to already be suffering from severe osteoporosis. I do eat dairy, and have a good diet, but I have a family history of osteoporosis, mainly due to the fact that we are small built and slim, I only weigh seven and a half stones, I am 58 and had my menopause at 47. I have had FEC and Taxotere for primary bc.
I am taking a bisphosphonate (Alendronic Acid) once weekly, and calcium tablets daily, and am being monitored by the fracture prevention clinic at my hospital.
xxx
I am having Zometa by infusion. Liz and Justme, do you take your bisphosphonate orally?
Hi All
When I had my first bc in 1993 at the age of 37, I asked what effect all the treatment was going to have on my bones. I was basically given a pat on the head and told not to worry about it. A few years later, I paid for a ‘cheapo’ heel scan (it was about £30) as I wasn’t convinced. It showed the beginnings of a problem. I showed it to my GP who said he’d never heard of a heel scan, but agreed that it might be a good idea to send me for a DEXA scan. The DEXA scan gave the same result as my cheapo scan and I was started on medication for osteoporosis, which my onc was happy with. The latest scan showed that it seemed to be working. I think extra calcium and impact exercise is a good idea, but the osteoporosis medecine, is, I believe, specifically intended to boost the body’s capacity to absorb the calcium which you ingest.
S
All the women in my family seem to have/have had osteoporosis. I had osteoporosis before I developed cancer, and have been on Alendronic acid for years. Recent scans have shown that my bones are improving on this treatment, despite all the cancer treatments…
Try to get to see a specialist, with your history it shouldn’t be difficult!
Best of luck,
Lynn
Teacup…yes, my bisphosphonate is taken orally once a week.
xxx
Hi all… what an interesting thread that we can share…
Like justme, I take oral alendronic acid weekly…when I can bear to, as I need my morning cup of tea! I have read that there is another bisphosphonate (Actonel/Zometa?) which can be given as an infusion 3 monthly, but waste of time talking to my GP, and waiting for an appt with an Onc to discuss alternative to Arimidex which I have stopped thankfully.
As a matter of interest, when I had my 5 yrly review with my bc surgeon last February (retired Onc discharged me after chemo and rads 4 yrs ago…disgraceful!) I told him of my hip,feet and hand pains. Using the computer keyboard was a nightmare with my hands seizing up…I became ambidextrous. I could only walk on the toes of my left foot and the hip pain woke me every two hours at night. He sent me to see a Professor of Endocrinology, got an appt within 3 weeks, as he said this guy is doing research on side effects of Arimidex. An hour long consultation, most of which went over my head,referring to the World Health Organisation’s report on bone densitometry measurements and the meaning of “osteopenic”. He did send me a copy of his consultation notes to my bc surgeon, saying that I will lose no further bone loss, and reduce the fracture risk on average by 50% but continuing on the combination of Alendronate and Calcichew/D3. He ended his report by saying he thinks I am on the best combination of antiresorptive treatment for my bones and sees no benefit from changing the Arimidex. I had a metatarsal fracture in my left foot last summer, just from standing up from a chair and my left leg gave way, which left me in a wheelchair for 2 weeks and on crutches for 4 weeks, then hit my right foot on the refrigerator - another bone fracture!
Well, bully for the Professor… but he has not had to live with the painful side effects of Arimidex,or fractures, so I stopped it ,I guess, 2 months ago now, with the concurrence of my GP, but he knows little about bc, and Crohn’s,(which 30+ yrs of steroids has affected my bone density and exacerbated by Arimixdex). Am waiting an appt with a new Oncologist to discuss alternative adjuvant bc meds, but am continuing with alendronate and Calcichew/D3. Will ask about 3 monthly bisphophs infusions.
Aren’t we lucky we have this forum to share our worries/treatments/meds with? I know I am.
Liz.
What a fantastic response! I now have loads of ammunition to take to my Onc, actually he is responsive and cooperative, so I hope he will take notice of the information in these posts. I too felt, as Bahons2 puts it, I had been patted on the head and told not to worry - I do feel that I have grounds to be concerned and I will contacting him this week.
Thanks for all your support
blondie
Hi All
Does anyone take Bonviva + Calcium with Vit D? It’s so easy. One big tablet once a month when you get up first thing in the morning (ie on an empty stomach) with a large glass of water. No lying down or being horizontal in any way (eg, swimming), eating or drinking anything except water for an hour after that and then it’s just the calcium bit for the rest of the month.