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Old 04-16-2012, 08:09 AM   #1
Ellie F
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Osteoporosis-any way back??

Would really welcome any information or comments.
Following two doses of chemo I have been on herceptin since early 2009. Over Christmas I had bad lower back and joint pain.My ct scan showed small fractures to my hips so my onc ordered a dexa scan which showed I had just crossed over the line from osteopenia to osteoporosis!!
I have had virtually no dairy produce since diagnosis and realise that my calcium intake has been totally inadequate, something I have now corrected. In addition I am now prescribed daily calcium and D3 tabs plus once a week alendronic acid .
I have heard that alendronic acid doubles the risk of oesophageal cancer and can have unpleasant side effects.
Wondered if anyone had any experience to share or had corrected their osteoporosis by calcium supplements and diet?

Many thanks
Ellie
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Old 04-16-2012, 09:55 AM   #2
sarah
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Re: Osteoporosis-any way back??

take magnesium b6 with the calcium, helps your body absorb it but it should be taken at a different time not with the calcium.
the Femeara caused bone problems for me and I was put on Clastoban.
Do you do any weight exercises? maybe that would help if you can do them.
health and happiness
sarah
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Old 04-16-2012, 10:20 AM   #3
ElaineM
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Wink Re: Osteoporosis-any way back??

Try calcium-fortified soy milk and juice, calcium-set tofu, soybeans and soynuts, bok choy, broccoli, collard greens, spinach, Chinese cabbage, kale, mustard greens, and okra. Some grains, beans (other than soybeans), dried fruits, calcium fortified orange juice, and vegetables (other than those listed) can contribute to calcium intake. Salmon, Sardines and some other fish also have calcium.
Magnesium as well as vitamin D 2 can help your body absorb calcium. You might want to learn some exercises from a physical therapist who specializes in osteoporosis.
Good luck and happy eating !!!!!!!!
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Last edited by ElaineM; 04-16-2012 at 10:22 AM.. Reason: addition
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Old 04-16-2012, 07:46 PM   #4
Laurel
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Re: Osteoporosis-any way back??

Ellie,

Don't forget Strontium and boron. Take strontium 2 hours apart from your Calcium. I was unable to continue on a bisphosphonate due to esophageal problems, so I know first hand how very hard they can be on the old gizzard! I am trying to hold my own against the bone depleting side effects of Femara through supplementation. Plum Extract is another one you can take to strengthen your bones.
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
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Old 04-17-2012, 05:21 AM   #5
Becky
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Re: Osteoporosis-any way back??

My osteopenia did reverse. Four days after I had my oophorectomy my gyne wanted me to have my first Dexa since in 2 weeks, I would be starting Arimidex. (I had been on Tamoxifen but wanted to be on an AI so I had the ovaries removed. My onc wanted a 2-3 week interval to start Arimidex since he felt going from having Estrogen to having none would be difficult. It takes a few weeks for estrogen to completely leave the body anyway). My first Dexa showed osteopenia so the gyne and onc discussed having Zometa every 6 months because I already had osteopenia and they felt after starting Arimidex (and no ovaries), it would only get worse.

So I started Zometa but the osteopenia did not improve. At that time, I was taking 1200 mgs of Calcuim (one 600 mg tablet twice a day - each pill having 200iu of vitamin d3) and an additional 1000iu of D3.

No improvement (but no worse either which everyone was thrilled with) when I had a dexa 2 years later.

Continued on Zometa. Since there was a problem, onc got the okay from insurance to do another dexa after only one year. Since that time, I upped the D3 to 5000iu per day. That was my only change. Low and behold, the osteopenia had totally reversed itself.

I had never run my Vitamin D3 levels prior to this but my onc ran them and they were 49 (range is 32 - 100). I had only been taking the additional D3 for 5 months. I continued this to this day and the last time D3 was run in January, it was 62. After the normal dexa, I could not take Zometa and I had to wait 2 years between Dexa scans so July will be very telling (and I will let you all know). We know lack of D3 may be a problem in my family and perhaps related to our breast cancer (long story of why I think this). Who knows but having enough D3 worked for me.

You should have your level run. I thought 1400ius (1000 iu pill plus the 200iu in each calcium tablet) a day was enough but it probably wasn't (for me).
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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 04-17-2012, 07:13 AM   #6
snolan
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Re: Osteoporosis-any way back??

Resistance exercise will also help but has a much slower improvement, it is something you need to continue throughout your life, ie once you stop the benefits stop.
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Old 04-17-2012, 08:53 AM   #7
fullofbeans
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Re: Osteoporosis-any way back??

Ellie,

I am sorry you have to deal with this now. I have only what I believe is sound advice about diet to help in the future. Basic fact when you eat acidic food calcium is being leeched out of your bones to neutrelise it so your blood Ph stay the same.

"Of the 136 trials they found that examined the effects of dietary calcium on osteoporotic fracture risk, two-thirds of them showed that a high calcium intake does not reduce the number of fractures--even in those who took calcium (with vitamin D) during childhood. They also found that eating fruits and vegetables improved bone density in a whopping 85 percent of studies that looked at the effects of such foods...[.]

The key to preventing osteoporosis, they determined, is eating a low-acid diet. The basic idea is that a diet high in animal protein (including meat, poultry, fish, milk and dairy), grain, and high-glycemic foods (refined carbs) makes blood slightly more acidic (in part because protein is composed of amino acids). When blood is more acidic, the body tries to balance or neutralize it by adding alkaline material the only way it can--leeching some of the calcium compounds stored in bone. Eventually, osteoporosis results. It takes three servings of fruits and vegetables (which are alkaline) to neutralize the acid in just one serving of animal food (which is only the size of deck of cards), and two servings of fruits and veggies to neutralize the acid in one serving of grain. "
http://www.huffingtonpost.com/christ..._b_585528.html

A chart of alkine food not always obvious:

http://www.balance-ph-diet.com/acid_...ood_chart.html


Another article:
http://www.livestrong.com/article/41...-osteoporosis/

I have started a diet of raw food (i.e live veg ect..) and I sprout my grain which become then alkaline, oat groat or sprouted buckwheat makes for example delicious breakfirst. I have to say that my mental state and is much better for it and I wonder why I have not stayed on this (did it for a year after I was diagnosed). I was feeding my puppy raw food (raw meat and veg) having read it was the best then I just thought why the hell am i not doing the same! (again)

It may not reverse it but at least may stop it in its track
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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 04-18-2012, 03:52 AM   #8
Ellie F
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Re: Osteoporosis-any way back??

Thanks for all the information folks,I am certainly going to pay really close attention to diet now. I don't have much meat or dairy but do eat fish. I have increased sardine and salmon intake and also tried to ensure my veggie intake is good.
Took my calcium and d3 tabs for the first time yesterday and was really sick (not a good start) so will test out again when better.I will also continue my extra d3 as the tabs only have 400iu in them.
Meanwhile I hope for a sunny summer here in England!!
Ellie
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Old 04-18-2012, 05:32 AM   #9
fullofbeans
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Re: Osteoporosis-any way back??

I hope you feeling better soon too. I still think fish is good (at least omega 3 supplement coming from fish). But grains bread all pulses lentils ect are acidic (but less than meat). also I guess is if you have fish better with some salad and veg than potatoes/pasta ect then you neutralise it. sprouting is fun, takes patience and organisation but quite satisfying. Made a lovely sprouted chickpea humus yesterday, I know I am going on about this, it is a nice and healthy thing to focus on beside my puppy.

And yes hoping for a sunny summer!
__________________

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 04-18-2012, 05:34 AM   #10
Becky
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Re: Osteoporosis-any way back??

Take your supplements with food - some fatty food if possible. You might have a better time taking them with lunch and dinner rather than breakfast and dinner.

I don't take anything with breakfast since I normally just eat some nonfat yogurt and fruit - not enough to prevent nausea. But lunch and dinner are better - bigger meals.
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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 04-20-2012, 05:58 PM   #11
suzan w
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Re: Osteoporosis-any way back??

Check into FORTEO. I did daily injections for 2 years and was able to achieve an 18% improvement in bone density. My bone doc was amazed.
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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

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Old 04-27-2012, 04:20 PM   #12
fullofbeans
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Re: Osteoporosis-any way back??

i posted a while ago about it just remembered. I use it, when you first start you have to increase consumption slowly (or be close to a bathroom!)

Xylitol also has potential as a treatment for osteoporosis. A group of Finnish researchers has found dietary xylitol prevents weakening of bones in laboratory rats, and actually improves bone density.[24][25]
  1. ^ Mattila, PT; Svanberg, MJ; Jämsä, T; Knuuttila, MLE (2002 Jan). "Improved bone biomechanical properties in xylitol-fed aged rats.". Metabolism: clinical and experimental 51 (1): 92-6. doi:10.1053/meta.2002.28105. PMID 11782878.
  2. ^ Mattila, Pauli (1999). Dietary xylitol in the prevention of experimental osteoporosis : beneficial effects on bone resorption, structure and biomechanics. Oulu: Oulun Yliopisto. ISBN 978-951-42-5150-4.
http://en.wikipedia.org/wiki/Xylitol#Osteoporosis
__________________

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

Last edited by fullofbeans; 04-27-2012 at 04:23 PM..
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