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Old 06-26-2011, 06:06 PM   #1
Lani
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Hope for those with AI-associated musculoskeletal complaints

Vitamiin D supplementation may help according to this Phase II trial


Breast Cancer Res Treat. 2011 Jun 21. [Epub ahead of print]
Vitamin D and aromatase inhibitor-induced musculoskeletal symptoms (AIMSS): a phase II, double-blind, placebo-controlled, randomized trial.
Rastelli AL, Taylor ME, Gao F, Armamento-Villareal R, Jamalabadi-Majidi S, Napoli N, Ellis MJ.
Source
Department of Medicine, Division of Oncology, Washington University School of Medicine, 660 S. Euclid Ave, Box 8056, St. Louis, MO, 63110, USA, arastell@dom.wustl.edu.
Abstract
A double-blind placebo-controlled randomized phase II trial was performed to determine whether High Dose Vitamin D2 supplementation (HDD) in women receiving adjuvant anastrozole improves aromatase inhibitor-induced musculoskeletal symptoms (AIMSS) and bone loss. Patients with early breast cancer and AIMSS were stratified according to their baseline 25-hydroxy vitamin D (25OHD) level. Stratum A (20-29 ng/ml) received either HDD 50,000 IU capsules weekly for 8 weeks then monthly for 4 months or placebo. Stratum B (10-19 ng/ml) received either HDD for 16 weeks and then monthly for 2 months, or placebo. AIMSS was assessed by the Brief Pain Inventory-Short Form (BPI-SF), the Fibromyalgia Impact Questionnaire (FIQ), and the Health Assessment Questionnaire-Disability Index (HAQ-DI) at baseline, 2, 4, and 6 months. Bone Mineral Density (BMD) was measured at baseline and at 6 months. The primary endpoint of the study was the change-from-baseline musculoskeletal pain. The secondary endpoint was the percent change in BMD at 6 months. Sixty women were enrolled. Baseline characteristics were comparable between the groups. At 2 months, FIQ pain (P = 0.0045), BPI worst-pain (P = 0.04), BPI average-pain (P = 0.0067), BPI pain-severity (P = 0.04), and BPI interference (P = 0.034) scores were better in the HDD than placebo group. The positive effect of HDD on AIMSS was stronger across all time points in Stratum B than Stratum A (FIQ pain, P = 0.04; BPI average, P = 0.03; BPI severity, P = 0.03; BPI interference, P = 0.04). BMD at the femoral neck decreased in the placebo and did not change in the HDD group (P = 0.06). Weekly HDD improves AIMSS and may have a positive effect on bone health. Vitamin D supplementation strategies for breast cancer patients on AI should be further investigated.

PMID: 21691817 [PubMed
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Old 06-28-2011, 02:49 PM   #2
tricia keegan
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Re: Hope for those with AI-associated musculoskeletal complaints

Thanks for this Lani, I take a daily supplement of vitd along with my calcium but think I'll talk to my onc about increasing the amount as my last dexa showed some osteopenia.
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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 06-29-2011, 05:41 AM   #3
Becky
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Re: Hope for those with AI-associated musculoskeletal complaints

Food for thought - I had my ovaries removed in August 2005 so I could take an AI instead of tamoxifen. 4 days after removal, my gyne wanted a dexa just so he knew what we were dealing with. I already had mild osteopenia.

I was on Herceptin alone and since I was getting infusions, the gyne talked to my onc about getting
Zometa which I started every 6 months.

Onc dexa scanned me every year - slight degression but he was happy that Zometa was keeping me stable. I started Vitamin D supplementation when I found that my daughter, mother, sister and cousin (later 3 also had bc) had zero circlulating Vitamin D (my daughter was 8).

Took 4000iu per day. 6 months later, I measure 46 for circulating Vitamin D. 6 months after that, total normal DEXA - "over normal". Good hard bones. Insurance wouldn't allow more Zometa. One year after that, still good hard bones and I am still on Arimidex (6 years now).

I also do not have joint pain (as my mom has and my cousin has mega big time). Neither my cousin or mom keep up with Vitamin D (daughter does as we see this as a potential metabolic problem in the family - potential risk for us for bc - low Vitamin D).

This works for me.
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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 06-29-2011, 06:18 PM   #4
sassy
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Re: Hope for those with AI-associated musculoskeletal complaints

Becky,

How do you take the supplemental vitamin D? OTC or prescription? I take calcium with D, my D levels are normal, but if I can increase in the hopes of relieving more joint pain, I'd like to give it a shot.

Thanks!
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 06-29-2011, 08:31 PM   #5
Laurel
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Re: Hope for those with AI-associated musculoskeletal complaints

Rhonda,

I upped my Vit D to 4000-5000 IUs daily along with Strontium, Calcium, Magnesium, and Boron. I really only have stiff feet and ankles in the morning when I "Frankenstein Walk" to the bathroom first thing upon waking. Surprisingly to me, recently I was chatting with a few other ladies our age who are NOT breast cancer survivors. They all complained of the stiff feet and ankles in the morning just like me! I had chalked this up to my A.I., Femara, but in fact it may be due to aging or menopause! Wow, I'm NORMAL! Hot damn! Oh to be NORMAL and creeky and stiff in the morning! LOL!

In light of this, I have to say that I really have zero A.I. associated pain. I have had pain in my hands, but had been vigorously weeding my flower beds or some such activity as I reflect back upon it as I do not have continuous pain in my hands. My non-breast cancer friends experience the same symptoms as me under these circumstances. It is NOT the Femara. Yeah!

Here's the kicker. I have been taking minimally 2500 IUs of Vit D3 since my diagnosis. At dx I had a blood level of 23 for Vit D. Now I am around 50. It took me years to get that high. I found I had to increase my intake to 4000 IUs or so to achieve that result.

Just this week I began jogging, because as you know I am now a porker. Some of my weight gain may be due to menopause and my A.I., but it is mostly due to my love affair with all things tasty! Hence the need to exercise more. I take several "oils" to decrease inflammation, olive, fish, avocado, and coconut. I should be in serious pain, but I am only mildly sore. Amazing!

I think some of our aches and pains are due to aging. I suspect cancer treatment ages us a bit more rapidly than we otherwise would have, but still some of our complains would arise had we not acquired the "blessing" of cancer. Vit D seems to help our bones and comfort levels. We'll see how it assists against osteoporosis when I have my next bone scan. I had to discontinue my bisphosphonate due to GI problems relying now only upon my supplements. I'll let you know how I am faring. If my dexa is good then I will be singing the Monkeys' "I'm a Believer (believa if you are a Brit like Davy).

Yes, I have just totally dated myself.....
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Smile On!
Laurel


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
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 06-30-2011, 05:00 AM   #6
Becky
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Re: Hope for those with AI-associated musculoskeletal complaints

I take one OTC Vitamin D3 at 4000iu. I think I was like Laurel in a sense - I did not know my starting Vitamin d level but suspected it was bad due to the results of my family. So, I started at 4000iu. About 7 months later I had mine drawn and they measured 46. I figured I need alot to get it up and keep it up.

I just went to my onc on Monday. I asked that he run my Vitamin D again but he says they are doing this 1-2 times a year per patient now as they are feeling the Vitamin D level is more and more important. So... in a couple of days, I will let you know my level and whether or not I think I can drop down to a lower iu level or not. Hopefully I don't have a raging high result!

PS - I take my Vitamin D and omega 3 with dinner
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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 06-30-2011, 03:16 PM   #7
Becky
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Re: Hope for those with AI-associated musculoskeletal complaints

Fyi - got my blood work results today and I am at 49 for Vitamin D3. Not overtly high for taking 4000iu, drinking some milk, eating fish and being outdoors a couple of hours a week but respectable.
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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 06-30-2011, 06:46 PM   #8
Laurel
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Re: Hope for those with AI-associated musculoskeletal complaints

Nice one, Becky, but aren't you amazed at how much we need to dose ourselves with to maintain a level around 50?
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Smile On!
Laurel


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
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 06-30-2011, 07:35 PM   #9
Becky
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Re: Hope for those with AI-associated musculoskeletal complaints

Laurel

I agree with you. Even my cousin who had bc says that no doctor tells her to take as much as I do but her levels are never okay and I can't even discuss it with her. Some folks need much more than others and my family and I are in that group.
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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 07-02-2011, 02:53 PM   #10
Jean
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Re: Hope for those with AI-associated musculoskeletal complaints

Becky,
I am right there with you sister...taking 5,000 D3,
grape seed, Reishi Shitaki & Maitake, my osteopenia has not advanced and remains stable. My vit. D level is 49.

I don't understand why the dr. do not tell their patients to
increase their intake or even mention taking Vit. D3.

jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 07-02-2011, 03:06 PM   #11
Pray
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Re: Hope for those with AI-associated musculoskeletal complaints

Hi Becky,

When your Dr. writes a test result as stable does that mead it is normal? Or just ok? I don't like recieving test results on weekends especialy on holiday weekends!

Ishy
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 07-02-2011, 08:38 PM   #12
Becky
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Re: Hope for those with AI-associated musculoskeletal complaints

To me, stable means the same as before. No change from before.
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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 07-03-2011, 01:07 AM   #13
Chelee
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Re: Hope for those with AI-associated musculoskeletal complaints

The 1st time I requested my Vit D3 levels be checked...they were only 28. My Endo told me they were great. That was under the reference range of 30! So I now take 5000 IU's about 5 days per wk along with my Caltrate that has Calcium, vitamin D3 and minerals. In fact it's time to check my D3 levels at my next labs. I'd like to see them at 60 or so.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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