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Old 04-24-2007, 09:36 PM   #1
Debra
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Our bones and AI's

Is there anyone else out there that is on something such as actonel or fosomax for their bones?
I am about to start fosomax since I was just recently switched from tamoxifen to Arimidex which supposedly causes bone loss. I had a bone scan stating I am osteopenic---I will be 42 next month. (total hysterectomy in December).
I was just googling fosomax and don't like what I see!! Lot's of negative things. I am so darn tired of trying to do what's best and getting so confused over the good and the bad info out there.
So do I want osteoporosis or risk my breast CA coming back? Any help or insight into fosomax would be greatly appreciated.
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Debra

Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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Old 04-25-2007, 05:10 AM   #2
Caroline UK
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Debra,
I so know what you mean, one scantily-informed/over-informed decision to make after another, isn't it? But somehow we muddle through, and become better informed as we go along.

I'm 48 and was made post-menopausal by the chemo. I'm on Arimidex, and like you am osteopaenic, in L4-L5 of my spine. I've been put on Calcichew-D3 Forte, rather than Fosomax, so can't comment from personal experience, but my mother-in-law has taken Fosomax for years without any problems, if that's any help at all.
Good luck in your fact-hunting and decison-making.
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Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years

Considering reconstruction, maybe soon...
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Old 04-25-2007, 08:18 AM   #3
suzan w
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I was diagnosed with severe osteoporosis when I was 45 years old and started on Fosomax at that time. Also started on hormone replacement therapy too as my doc felt that it would help protect my bones...ya right! I think it fed my ER+ tumor...anyway! I am still taking fosomax and still do not have good DEXA scan scores...I have not noticed any side effects from taking Fosomax. Taking Arimidex. Need to go for DEXA scan but keep putting it off...sometimes there are things I would just rather not think about right now!
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 04-25-2007, 09:29 AM   #4
R.B.
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I have seen a number of trials suggesting improved bone density with increased omega three intake (DHA) in particular.

Here are two specific link and one general one.

Some trials on rats and mice but not many specific ones with people.

Food for thought.

RB

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_DocSum

One of the most intriguing current and future impacts on public health may come from a higher intake of omega-3 fatty acids, such as alpha-linolenic acid (ALA), eicosapentaenoic acid (EPA), and docosahexaenoic acid (DHA). The omega-3 fatty acids continue to accumulate research that suggests that they may prevent a variety of diverse chronic diseases and potentially some acute clinical scenarios. In the first part of this article, the potential for these compounds to prevent certain cardiovascular conditions are discussed. In the second part, the potential for an impact in arthritis, numerous areas of cancer research, depression, maternal and child health, neurologic diseases, osteoporosis, and other medical disciplines are also briefly covered. The future appears bright for these agents, but specifically which conditions, who qualifies, testing, frequency, adequate sources, future trials, and numerous other questions need to be addressed and answered before the potential impact can catch up to the recent hype.


http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

Laboratories of Applied Biochemistry, Faculty of Agriculture, University of the Ryukyus, Senbaru 1, Nishihara-cho, Okinawa 903-0213, Japan.

Seven-week old female rats fed restricted foods including the fish oils Docosahesaenoic Acid (DHA) and Eicosapentaenoic Acid (EPA) and perilla oil with food intake decreased by 50%, had increases of fracture force and bone mineral density (BMD) and decreases in levels of Deoxypiridinoline (Dpd) and Calcium (Ca) in the urine, compared with those of rats with osteoporosis due to restricted soy bean oil food intake. Therefore, the fish oils DHA and EPA and perilla oil depressed excretion of urinary Ca and inhibited osteoporosis due to restricted food intake.

PMID: 15618634 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/entrez/q...play&DB=pubmed
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Old 04-25-2007, 04:54 PM   #5
tricia keegan
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I began taking Fosamax only a month ago having started on Arimidex last September,my first base line dexa scan showed esteopenia in my spine.
My first week on Fosamax all my Arimidex side effects were amplified,eg bone/joint pain and neuropathy.
The second week it was'nt so bad and each week it seems to be more tolerable,the hard part for me is taking it before tea or breakfast with a lot of water and also remembering to take it!
I'm hoping it helps or at least slows down the bone damage and will be interested to see any other replies you get.
I am 48 and had an ooph last year as I'm trriple positive.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 04-25-2007, 08:36 PM   #6
Bev
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I'm destined to start Arimidex soon and am a little worried. Bone loss is a serious thing if you want to be active and without pain. I haven't seen any studies combining Arimidex with Omega 3 supplements. Guess it can't hurt. I keep having a nagging doubt that perhaps triple positives can delay Arimidex for a year or two. I guess I'm just torn between my choice of side effects. BB
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Old 04-25-2007, 10:39 PM   #7
Cheryl E
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Debra,

My diagnosis including age was exactly as yours. Because it was 4 years ago, I didn't recieve the herceptin. As soon as I finished the chemo, I had an oopherectomy and began to take femara. According to my onc (who I highly rescpect), it is common to become osteopenic after chemo and especially on an AI. He says the research shows the numbers level out after 1 1/2-2 years. I have had 3 Dexa's and sure enough, the results I got today show my numbers have stopping dropping. I am still considered osteopenic, have not progressed to osteoperosis. There is lots of controversy weather or not to tale fosomax with opsteopenia. My onc is against it, especially at such a young age. Make sure you take 1500 gm calcium daily (not more than 500 at a time) and do daily weight bearing exercise. I will have a dexa every 18 mos, but until my numbers fall in the truly osteoperosis range, I am comfortable not taking anything.
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Old 04-26-2007, 09:16 PM   #8
Debra
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Thank you all for your replies. I have really been torn with this whole thing----taking an AI to prevent a recurrance yet I feel so at risk now for osteoporosis since I am already osteopenic. I just am getting so tired of having to make decisions about my health and there is no simple "do or don't" it seems.

I haven't started the fosomax yet. It is still sitting on my kitchen counter. I just started Arimidex on Monday so I am waiting to see what goes with that!

Cheryl it was good to hear your bone density values tapered off. That gave me some confidence for I have researched that the chemo can cause the bone loss. I am going to turn 42 in a few weeks and want many more pain free years ahead. It is really a *&$%@ when the treatments and preventions can cause other serious conditions!
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Debra

Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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Old 04-27-2007, 08:56 AM   #9
rosamarie
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new drug

There is a fairly new drug called Strontium Ranelate (Protelos) which some people are turning to here in UK. I don't know if it's available in US, but know my sister in South Africa has been put on it after her OP worsened on a bisphosphonate. Protolos is reported to have few side effects and is very easy to take. I was diagnosed with severe OP last July after lots of bc treatment. I dont know if the Protelos is working as it is another 2 years before I get another DEXA scan, but some people have reported good results.
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Old 04-27-2007, 03:56 PM   #10
tricia keegan
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This is also available here in Ireland and I intend asking my onc about it when I next see her although I did read it's usually reserved for post menopausal women who cannot take bisphosphonates.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 04-28-2007, 02:21 AM   #11
rosamarie
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I did my own research and didn't fancy taking a bisphosphonate because of all the digestive problems. I also liked the sound of the Protelos as it builds new bone and slows down the loss of old, it also has very few reported side effects, and I have had no trouble with it. The Consultant Rheumatologist at my local hospital didnt want to give me Protelos because of my age (59), he wanted to give me Evista which I didn't want, and so I got it prescribed by Royal Marsden where I am being treated for my BC. It doesn't seem to be readily prescribed here if you are under 75, but I think if you make enough fuss about the digestive thing (I can't take aspirin or ibuprofen) they give in! I know of a couple of younger women who have been prescribed Protelos at the London Homeopathic Hospital, as they consider it much less harmful than other drugs, and almost view it as alternative medicine.
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