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Old 07-17-2007, 07:38 AM   #1
suzan w
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osteoporosis

Just had a DEXA scan done last Friday and my already terrible bones (severe osteoporosis dx in 1998, many years before breast cancer) are getting worse. This is a direct result of chemo, and ARIMIDEX...I have been on arimidex since Oct. '05, so still have 3 1/2 years to go...I am taking Fosomax, fish oil, calcium with D. I walk 5 miles a day. Had more tests done on Fri. to see if I am absorbing the calcium and D and am waiting for the results. The doctor (a bone specialist) has a few ideas up her sleeve...maybe a yearly Zometa (?) or some other injection. Wondering if anyone else is also dealing with severe osteoporosis and what you are doing about that?
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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 07-17-2007, 07:41 AM   #2
Becky
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I am getting Zometa IV every 6 months. My last DEXA in June showed no progression in 2 years so I will probably only get the Zometa once a year (no other treatment (ie: Fosamax) except for calcium with D). I also run 5-6 times per week for a total of 28 miles per week. I was very happy. I will probably go on Fosamax or something like it after Arimidex is over as then, the loss won't be as severe as now.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 07-17-2007, 01:19 PM   #3
R.B.
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You might like to look at some of the posts on this site about balancing the omega three and sixes.

I have seen several suggestions the improving omega three intake may assist with osteoporosis.



http://www.worldwidehealthcenter.net/articles-422.html

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum
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Old 07-18-2007, 03:49 PM   #4
AlaskaAngel
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Suggestions

Suzan, you are probably already doing this, but just in case -- reducing salt intake can help because salt intake can cause you to pee out more calcium. The other possibility is to make sure you are not trying to take the calcium one time a day but spreading it out because you can only usually absorb so much at a time. Another suggestion that Gina felt was especially important was taking enough magnesium.

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Old 07-18-2007, 08:08 PM   #5
sassy
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I am taking yearly Zometa. My onc felt very strongly that in addition to the bone building benefit, the Zometa would have a preventative benefit also.
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Old 07-18-2007, 11:23 PM   #6
harrie
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I am due for a bone density test. A leary. I have had osteopenia for about 4 yrs now and was prob due to my taking Tamoxifen. I had TCH and now doing herceptin and talking Arimidex, so I am somewhat concerned as to why my next DEXA will show.
I take 1500 mg of calcium daily.
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 08-24-2007, 02:47 AM   #7
R.B.
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Modulatory effect of omega-3 polyunsaturated fatty acids on osteoblast function and b

Omega three helps ovariectomized rats to minimise bone loss.

This is one of a number of trials suggesting the omega three will help reduce bone loss.

RB

http://www.ncbi.nlm.nih.gov/sites/en..._uids=12798659

"Recent investigations indicate that the type and amount of polyunsaturated fatty acids (PUFA) influence bone formation in animal models and osteoblastic cell functions in culture. In growing rats, supplementing the diet with omega-3 PUFA results in greater bone formation rates and moderates ex vivo prostaglandin E(2) production in bone organ cultures. A protective effect of omega-3 PUFA on minimizing bone mineral loss in ovariectomized rats has also been reported. The actions of omega-3 fatty acids on bone formation appear to be linked to altering osteoblast functions."
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Old 08-25-2007, 05:22 AM   #8
TSund
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Magnesium!!

Hi Suzanne,

I am not an expert, but, as I recall:

Magnesium is where a lot of diets (and doctors knowledge and recommendations) fall down, and without it the calcium does not end up being absorbed in the correct way, and in fact can lead to calcium excess causing bone PROBLEMS rather than help. The magnesium should be one of the more potent kinds. (Glycinate or Magnesium malate I believe?) Do some internet research on magnesium and bone loss correlation.

Magnesium blood tests are famously inaccurate. There is a blood serum test that is more accurate but STILL may not represent what is truly present in the tissues.

Weight-bearing excercize is also important to bones. I believe Vit C and zinc help calcium absorbtion?

Hope this helps...

TRS
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 08-25-2007, 07:10 AM   #9
BonnieR
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Susan and Becky, wow, how did you find the stamina to walk so long and far? My dog and I used to love a lengthy neighborhood walk but is all I can do to get around the block now. It really tires me....
Maybe I am expecting too much, too soon (3 months out of surgery).It is extremely hot here in the desert and I have had alot of other physical demands associated with moving, etc.
I guess I answered my own question. Need to take it one step at a time....one baby step at a time....

ETA: I had stopped Prempro shortly before my diagnosis and was in early osteopenia as a result. Wonder how that looks now. How long after treatment begins do you start getting bone scans again?

It looks like I am replying to all the threads here this morning!!
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 08-25-2007, 10:33 AM   #10
harrie
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Bonnie,
The chemo can really compromise the RBC count and until it is back up there, you feel the lack endurance while exercising. It has been 3 months since my last TCH tx and my endurance level is fine now.
I think after 2 months it felt pretty good already.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 08-26-2007, 01:08 PM   #11
TSund
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Susan,

It might be interesting to get your pH reading. I saw an article recently that suggests that a body that is too acidic (easy for we on Western diets) will leech phosphate from the bones, which is essential for binding with calcium to create dense bone structures.

I'd be interested if anyone else has more info on this

TRS
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 08-26-2007, 04:25 PM   #12
R.B.
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Test strips are not very expensive. Here is an example. You may get cheaper I have not looked. They can last quite a while.

PH is very important.

Here is a useful link with explanation I have just found and it has an understandable food chart.

http://www.trans4mind.com/nutrition/pH.html

RB
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