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Old 10-11-2009, 12:22 PM   #1
tdonnelly
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Bone Density -Poor

HER2 Friends,

I recently had my first Bone Density test since treatment. My hip area was <1. The Spine was -0.9. I am now taking 2000 units of D3 and 1000 mg of Calcium. Due to ongoing lower back pain I will also be having a Bone Scan. Unfortunately the constant nausea - 4=months now is worse with all this Vitamin D and Calcium. Prilose never helped with the nausea.

Is it the Radiation treatments that affected my Bone Density or the Chemo/Herceptin? No one has said.

Having moved to WI; I will be seeing a new Oncologist. She is not Board Certified. Although the site has been accredited. How can an MD prescribe Chemotherapy without being Board Certified?

Take Care,
Tami
__________________
Tamara Donnelly
Invasive Ductal Carcinoma 10/2006 HER2+
Lumpectomy
Adriamycin x 4/Cytoxin x 4/Taxol x 4
Herceptin x 17
Radiation: 5 1/2 weeks
Second Reoccurrance: August 2010
Right Breast Masectomy
12 doses of Taxol
1 yr of Herceptin
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Old 10-11-2009, 03:03 PM   #2
tricia keegan
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Re: Bone Density -Poor

Tami,

Do you take hormone therapy? I take arimidex and my first dexa was poor so I started fosamax but had to stop due to nausea.
I increased my exercise regime and found the next year i showed a big improvement.
I think the menopause and lack of estrogen obviously effects out bones quickly and if taking hormone therapy this accelerates it.
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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 10-11-2009, 03:12 PM   #3
tdonnelly
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Re: Bone Density -Poor

Hi Tricia,

I don't take hormone therapy. I am hypothyroid and take Levothyroxin daily.

Tami
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Tamara Donnelly
Invasive Ductal Carcinoma 10/2006 HER2+
Lumpectomy
Adriamycin x 4/Cytoxin x 4/Taxol x 4
Herceptin x 17
Radiation: 5 1/2 weeks
Second Reoccurrance: August 2010
Right Breast Masectomy
12 doses of Taxol
1 yr of Herceptin
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Old 10-12-2009, 04:00 AM   #4
fullofbeans
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Re: Bone Density -Poor

Sorry to hear. Little diet tips that makes a difference long term: don't forget to replace sugar with Xylitol (check wikipedia article) . Eat sardines (calcium from bone) don't try to get it from milk. Avoid sugar and processed food, white flour ect..(as always).

Daily little changes can make a difference long term..but unfortunately I do not know if there is something that could be done fast
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 10-12-2009, 04:02 AM   #5
fullofbeans
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Re: Bone Density -Poor

More:


Xylitol and Osteoporosis
Another exciting benefit from xylitol is its role in reversing bone loss. Studies in Finland found that xylitol maintained bone density in rats that had their ovaries removed. Without ovaries, oestrogen levels plummeted and so did the bone density in rats that were not given xylitol. However, in the rats that had ovaries removed and were given xylitol, bone density actually increased.10 Another study showed that xylitol was effective in decreasing age-related bone loss in older male rats by 10 per cent.11
In an unprecedented action, the Finnish researchers made bold recommendations for human application of their studies. They suggested that an effective human dose would be about 40 grams daily. The scientists speculated that xylitol's bone density enhancing properties are due to its ability to promote intestinal absorption of calcium. Including xylitol in one's diet is certainly an enjoyable way to reap the benefits of greater bone density, along with other health benefits.
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 10-12-2009, 04:07 AM   #6
fullofbeans
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Re: Bone Density -Poor

And again..

Xylitol Reverses Bone Loss in Old Animals

In this recent study, 24 rats were given Xylitol in their diet for twenty months. At the end of this time, they were euthenized with carbon dioxide. The bone mineral content and volume of the bones was evaluated by several sophisticated analytical techniques.

The tibial (lower leg bone) density of control animals averaged 1.560 g/mm3, while the density of the tibias of the Xylitol-fed animals averaged 1.725 g/mm3, indicating a Xylitol-induced increase of bone density of nearly 10%.

The authors stated that Xylitol consumption resulted in significant protection against aging-related loss of bone, and The preserved bone volume indicates an anabolic and/or anti-catabolic effect…caused by Xylitol. They concluded: A continuous moderate dietary Xylitol supplementation leads to an increased bone volume and to an increased bone mineral content in the long bones of aged rats. This indicates a Xylitol-induced protection against aging-related osteoporotic changes.

Xylitol Mechanisms and the Neuroendocrine Theory of Aging – Another Receptor Sensitizer?

The scientists speculated that xylitol’s bone density-enhancing properties were due to its ability to promote intestinal absorption of calcium. They pointed out that calcium absorption is impaired with aging. They believe that this is due to an age-related intestinal resistance to 1,25 dihydroxy vitamin D3, and by an age-related decrease in intestinal vitamin D receptor concentrations. I think this is similar to the age-related loss of receptor sensitivity and associated hormonal resistance observed in many other receptor systems. (9)

The scientists proposed that Xylitol’s efficacy in enhancing calcium absorption and utilization may be independent of the apparent vitamin D resistance. It may be the mineral absorption- and utilization-enhancing effects of Xylitol combined with its H. pylori-killing effects that result in Xylitol’s ability to reduce the number and size of cavities. Some cavities have even tended to fill in. Of course, it may be that Xylitol acts as a vitamin D3 receptor sensitizer, enhancing the effects of vitamin D (see Table 2).


http://www.vrp.com/articles.aspx?ProdID=717
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 10-13-2009, 12:32 AM   #7
harrie
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Re: Bone Density -Poor

Fullofbeans, that article is very interesting. Recently I have taken a couple of classes on osteoporosis at dental conventions. Nothing was mentioned of the benefits of xylitol on osteoporosis or osteopenia. Interesting. They talked about the biophosphanates, exercise, Vit D, cal, etc.
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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 10-13-2009, 05:46 AM   #8
Yorkiegirl
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Re: Bone Density -Poor

My last Bone Density done in February, still shows a decline in bone density. My hip's are now -3.4, and my spine is now -4.4.
It just keeps getting worse, even tho I do take Actonel, Vit D and calcium and I do exercise (weight bearing ) and nothing seems to help. I am ER/PR negative, I have estrogen in my system so that right there is big cause of my problem. I just have to be very careful especially with my back.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 10-14-2009, 06:36 PM   #9
imdavidson
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Re: Bone Density -Poor

It seems like a lot of people who have bone loss are ER positive and so have taken anti-hormonal drugs which would account for the loss of estrogen that leads to porous bones. But I'm curious to know how many of us have bone loss since treatment who are ER negative and never had aromatase inhibitors or tamoxifen. If you're ER- did that happen to you? Do you think the chemo by itself can cause it too??
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Old 10-14-2009, 06:41 PM   #10
Yorkiegirl
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Re: Bone Density -Poor

If you read my post which is above your's you will see that I am ER/PR negative and my bone density keeps getting worse.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 10-14-2009, 07:15 PM   #11
imdavidson
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Re: Bone Density -Poor

Vicki, I meant generally speaking -- I'm going to try to find some research on this...
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Co-author (with Dr. Dan Silverman at UCLA) of "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus" (Da Capo Lifelong Books, 2009). Amazon. www.YourBrainAfterChemo.com.

ER/PR negative/HER-2 positive
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Old 10-14-2009, 07:18 PM   #12
Lori R
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Posts: 454
Re: Bone Density -Poor

Tami,
I am er/pr- and measured as osteopenic following all of my treatments last year. I don't recall the exact score.

I believe it was due to the Chemo more than the radiation. But, I don't know why I believe that. I can't say that I recall my Dr. actually attributing my bone density status directly to the chemo only.

But.....the point is (sorry...this took a while), My onc put me on a monthly dosage of Boniva. Boniva is taken in pull form and hasn't caused side effects that I am aware of.

Also, I am concerned about the accredidation status of your Dr. Is your location isolated? Thus, access to a certified Oncologist isn't viable? I encourage you to locate a specialist in this very complicated matter. (As a test, see if your Dr. prescribes Boniva)

Lori

Has your
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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