OK - I have had enough now.! I am 3 years post dx and on the lovely tamoxifen. I got plunged into a chemo induced menopause at 42 and all the awful crap that goes with it. I feel old, depressed and about 80!
Last month I developed mild lymphoedema in my left arm - just another reminder of surgery - how can you ever move on???
ANyway yesterday I got sent for a bone density scan as my last one was 2 years ago and they want to check my bones OK because of early menopause and guess what…?? - they have lost density since 2006.!! The radiographer told me it was only mild but they ma y put me on bone strengthening tablets!! Lovely!! Everyone else in the clinic seemed about 60 - 70 which I suppose is the ago osteosporosis develops. I came out Sooooooooo fed up - I am only 45 for god’s sake.
Sometimes I REALLY wish I had not had chemo as it caused so many problems that never go away and I wish I was told all this at the time. I was told I had 88% odds of being OK without and 98% with . At the time I thought that 10% worth 6 months of hell but now I think it’s actaully a lifetime of hell and Let’s face it I could hav e been in the 88%!
Sorry to whinge on I am just sick of it all. It never ends. ANybody else on bone strengthening tablets because of an early menopause??
Hi Alise, although i am not as young as you (a young and very fit 47 at DX)i certainly know what you mean about it being hard to move on. I have the constant reminder as Taxotere made me permanatly bald. Like you i wish i had been warned!
I hope the bone strengthning tabs work for you.
I was on Tamoxifen for 2 years and stuck with them. Then they put me on Femara and have to say (touch wood) i feel so much better.
Arent Tamoxifen supposed to be better for the bones and worse for the heart and Femara are the other way round.
The only thing with Femara is i get stiff ankles and cant walk for a few seconds when i get out of bed. Also if i get up from a chair or driving etc my hips kill me and i cant straighten but again its just for about 8 or 10 seconds.I feel alot clear headed and although i have put on over 3 stones i just feel alot better.
Sorry i am not much help regarding your medication but i am sure someone on here will give you some help.
SX
We’ve chatted on a lymphoedema thread before, Alise!
I had my ovaries out at 37 (1994) - I’m now 52 Nothing was said to me about osteoporosis (and I wasn’t as clued up as I am now!).
In 2001, I paid about £30 for a heel scan from a mobile unit at a local gym and the results weren’t as good as they should have been for my age, ie I didn’t have osteoporosis, but I was heading that way far too fast. Showed them to GP who said he’d never heard of a heel scan (!!! don’t get me started), but agreed that I was at risk and arranged a DEXA scan for me. I had to wait a year for it but it did confirm the heel scan results.
I have to say that I was a little disturbed by the fact that it was only by taking the results of a scan by a commercial operation to my GP, that any action then followed. As I mentioned further up, the possibility of drastic loss of bone density was never mentioned to me by anyone involved in my cancer care.
I have heard that calcium is very expensive to produce as a supplement, so maybe there is an underlying cost issue here.
So…since 2002, I’ve been on anti-osteoporosis meds. I take a Bonviva tablet (ibandrondic acid) once a month and then Cacit (Vitamin D3, etc) every night. Not a single side effect, no problems at all. Like you, I’ve been having a DEXA scan every two years and I had my latest one just over two weeks ago. My spine and hips are now ‘normal’ and ‘slightly better than normal’ for my age, respectively.
I know what it’s like; it’s that ‘yet another crummy spin-off from bc treatment’ feeling, but this one is at least easy to spot and gets treated (not always the case with some of the others, as we know)!
So, yes, the answer is I am, and I think that quite a few others who post on here are too. No doubt they’ll be along in due course.
I had a dexa scan in 2006 that showed quite a lot of loss of bone density which worried me, this being just a year after oopherectomy and arimidex. I started to take bone strengthing tablets but they didn’t agree with me so I decided a bit of self help was in order. I started to take a supplement called osteocare which is available without perscription. I also bought some hand weights and use these every day and I also started walking for 3 - 4 miles about 4 times a week, in addition I also made sure I had enough calcium and vitamin D in my diet. A year later I had another dexa scan that showed no deterioration, and then another one last year which was the same as the previous one so I was quite pleased that my efforts were having some impact.
Add me to the list ! I’m a similar age to you (44 now) and it would appear similar problems re lymphoedema, osteoporosis, etc, etc although I have bone mets (being greedy!). I have chemo/early menopause induced osteoporosis and am on a daily calcium tablet (Adcal D3) and monthly iv drip of Zometa and understand these treat the bone mets and the osteoporosis at the same time. Have a look on my profile for my diagnosis/treatment. For me, it was a no-brainer to have the chemo as it was the only way to shrink the tumour before surgery. The hormone therapy is something I am also keeping going on in spite of the side effects as it does increase my chances of survival from about 15% to 25% over 5-10 yrs (allowing for the fact that the bone mets are incurable but hopefully manageable for many years !). I have just been granted retirement from work on ill-health grounds - a saga there but it’s all worked out - so I can plan to get exercise by strolling on the promenade and going on my bike. No gym for me because it’s not my thing and some stuff will aggravate the lymphoedema. I’m having kinesio taping for the lympho and fortunately don’t need a sleeve at the mo.
I had a DEXA scan last January and was told that I have osteopenia which is particulalry bad in my spine where it was virtually osteoporosis. I am on Arimidex which can cause this, but this was meant to be the baseline assessment so I did not expect problems. I was put on weekly alendronic acid and Adcal D3 twice a day. I have just had another DEXA scan and await the results. Admittedly I am older than some of you as I’m in my fifties, but with the awful aching joints from Arimidex I feel more like a ninety year old sometimes. I do try to do lots of exercise which I hope is helping.
HI just found your message… sounds like ive had similar treatment to you . .had ovaries removed so plunged in to menopause overnight… on bone strength pills that add calcium and vit D they are called Adcal-D3 taken twice a day. my oncologist says all women should be on these …after a certain age! to prevent brital bones they do not cause me any side affects only good ones …take heart . Happy Days Cali
Yes, it’s amazing that all women aren’t offered anti-osteporosis medication as a matter of course, isn’t it? Fractures cost the NHS a fortune; you’d think they’d be falling over themselves to get something down everyone that would save them money, wouldn’t you!
Obviously, osteoporosis isn’t yet a ‘cool’ enough disease, so the population at large will have to hang until a few famous people have it, I imagine.
BTW, I was told that the ibandrondic acid (Bonviva) that I take once a month enables the bones to absorb calcium more readily…