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BMD

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Reply with quote  #1 
I want my life back and I really think Femara is keeping that from happening. 2 1/2 years left and I really just don't want to feel like this anymore. I want off all the meds and I think Femara is the reason I am on most, if not all of them. I want to be my kid's mom. Not their grandma. I want to be my husband's wife. Not his roommate. I want the constant sweating to stop. Is that to much to ask?

Okay whine attack done for now.

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BrendaBMD
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Reply with quote  #2 
It is not too much to ask. ((((((BIG HUGS TO YOU))))))

Oh Brenda, maybe take a Femara vacation and see how you feel?

I think you are wonderful, just so you know.

love
g


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Reply with quote  #3 

{{{{{{{{{Brenda}}}}}}}}}


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Reply with quote  #4 
Brenda...

I took Arimidex for about 3 months and was in so much pain that I was miserable so the doc changed it to Femara.  It lasted a year and like you I was miserable.  I also just wanted my life back.  My doctor (a new doctor) recommended a medicine vacation so I took six weeks off and felt so much better.  It only took a month back on Femara for all of the symptoms...pain, sweats, fatigue, etc. to come back.  I've been taking Aromasin for about 4 months now and so far it's working fine.  I still have night sweats but not as bad.  Most of all I don't hurt all over like I did with the other two.

I hope you can work something out.  ((()))

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Bev

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Reply with quote  #5 

Thanks ladies. I have not tried any other AI because my onc says if I really want to fight this with all the guns then Femara is the way to go. I was suppose to see her Monday for a 6 month appt but they called and rescheduled me until later this month.


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BrendaBMD
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Reply with quote  #6 
Brenda, I have heard good things about Aromasin.  Take your vacation, feel better, and then decide.
You need some ME time.
Love
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mrsb

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Reply with quote  #7 
Hi Brenda I hope you will take a drug vacation and try one of the other AI's. I was on tamoxefen for 5 months then switched to Arimedex which i only could tolerate for 8 months or so then i switched to Femara.With supplements i have managed to control a lot of the SE except for the vaginal loss of estrogen still working on that.I completed my 5 year adjuvant therapy last may but have chosen to stay on Femara for as long as i can.Its a really personal choice to stay on, I am node postive stage 2 so for me my choise was to stay on them.In  January i reach my 7 years..... good luck with finding something that works for you.shelagh
edge

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Reply with quote  #8 
 

The Sorry World of  AI Suffering

There is, as I have written elsewhere  in my five part series on relief from AI-induced arthralgias/myalgias, no minimizing the adverse impact  for many  women of the bone and  muscle pain (arthralgias/myalgias)  and  associated fatigue due to  the severe  estrogen deprivation states from AI therapy.  It is now finally acknowledged to be a far larger problem than previously, and casually, thought, and also a major contributor to endocrine/hormonal therapy non-compliance and treatment interruptions or dosage reductions. Recent studies have shown that greater than 50%  of women on AI  therapy  who are suffering these disabilities obtain clinically significant relief by switching AIs, sometimes twice in  a minority of cases (there are just  three AIs in use currently), and there is no predicting who will benefit nor  which  agent is  most likely to offer the benefit for any individual patient, and based on that  premise I  reviewed and  documented in my review the best-evidenced interventions, CAM and otherwise, to try for potential relief.

 

A New  Option Arrives

We now have a new and highly promising, and  effective, option:  It's been recently  established that Vitamin D deficiency and insufficiency may be a, if not the, major contributor to musculoskeletal symptoms and bone loss observed in women taking aromatase inhibitors (AIs). The always innovative Carol Fabian at the University of Kansas, along with Qamar Khan and their colleagues showed in a study published in the last 2 weeks that supplementation with VHD-D3 (very high dose Vitamin D3) in the form of as 50,000 IU of vitamin D3 weekly (injectable)  can reduce musculoskeletal symptoms and fatigue in women who have suboptimal vitamin D levels. 

 

The investigators found that at baseline, 63% of women in the study exhibited vitamin D deficiency (defined as <20 ng/ml) or insufficiency (defined as 20–31 ng/ml). 25OHD levels >40 ng/ml were achieved in all women put on 12 weeks of 50,000 IU D3 supplementation, with no adverse effects whatsoever, and most  interestingly, after 16 weeks of AI therapy (letrozole (Femara)), more women with median 25OHD levels >66 ng/ml reported no disability from joint pain than did women with any levels  below 66 ng/ml, by an order of 52% versus 19%, respectively.  

 

Bone versus Cancer versus AI-Disability Levels for Vitamin D3

What's really important about this study is that it appears that very high levels of 25OHD, namely above 66 ng/ml, are needed to significantly reduce disability and fatigue from AI-induced arthralgias/myalgias and associated fatigue, and that about 81% of women -  4 out of every 5 - with D3 levels below this continued to suffer  significant AI-associated disabilities, and this is a new findings, since previously we knew that: 

 

  1. for optimal bone health that >42 ng/ml was needed,
     
  2. while for additional anticancer benefit, an even higher >52 ng/ml  was needed,

    but targeting above 66 ng/ml not  implemented (except by accident), so now we know that:

 

  1. for optimal AI-induced disability relief, levels > 66ng/ml are required, and preferably via an accelerated high-dose loading regimen like injectable 50,000 IUs weekly for 12 weeks.

 

 

Clinical Lessons:

 

Benefit Objective

Target 25OHD (aka, 25(OH)D) Vitamin D3 Level

 

 

Optimal  Bone Health

> 42 ng/ml

Anticancer Activity

> 52 ng/ml

AI-Disability Relief

> 66 ng/ml

 


Constantine Kaniklidis

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edge@evidencewatch.com

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Reply with quote  #9 
Edge,

If I may ask ....

I suspended Arimidex the end of April...tried to go back on mid July...still not taking it.  Increased Vit D3, cal, mag suppliments.  Not possible to buy in these dosages in Italy...bought in US.  Gave the research to my doc.

Even though I was ready to accept the worst ... I still don't know if I should go back to the AI with my increased vit D3 supplement.  When I tried for two days, my head was spinning.  I don't like to loose my mental capacity.  

I don't mean to whine because so many ladies are going thru so much more.  I just don't know what is best to do.  I really don't want the SE in my life....or at least not at the level I was living with.

Any ideas?


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Marilyn
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edge

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Reply with quote  #10 

Marilyn:

 

There are several  potential approaches:

 

  1. First, a of switch of AIs, to either anastrozole (Aromasin) or letrozole (Femara) is a  viable option, with a plurality of patients obtaining a more tolerable adverse events profile from one or a second switch.
  2. Second, an alternative is fulvestrant (Faslodex) which we know is at least as effective as an AI, and may be better (especially  at the higher 500mg dose), and fulvestrant (Faslodex) is typically more tolerable re muscle and bone (myalgias and arthralgias) adverse effects, and fatigue.
  3. Third, tamoxifen is another option (with or without ovarian suppression via either goserelin (Zoladex) or leuprolide (Lupron)).
  4. But I would not as yet write off the high-dose Vitamin D3 (HD-D3) option - remember, mere high-dose consumption of Vitamin D3 from D3 supplements is not in and of itself a guarantee that your true 25OHD serum  concentrations are optimal.  I have seen dozens of patients dosing even at 5000 IUs daily and above, only to find their assay-measured levels were still insufficient or deficient.  There is, therefore, no substitute for a D3 test, performable by any health professional (not just  an oncologist), since high external supplementation does not entail or guarantee high serum Vitamin D3 levels, so unless you know your laboratory 25OHD reading to  be  consistently above 66ng/ml, testing is absolutely essential.

 

One  clarification on this theme: you spoke of a (neuro-)cognitive side effect setting in on high dose D3 supplementation; did you mean dizziness and/or lightheadedness (and on what dose)?  This is rare but can sometimes come from the excipients and other additives in the specific D3 preparation you are using,  so  a  switch to a different preparation with minimal additives might be considered, and I would also suggest a second strategy, namely to take any Vitamin D3 supplement just before bedtime, so that any rare reaction will be dissipated during the night, not during daytime.

 

So, in sum, one of the above suggestions - in lieu of or in addition to the suggestions I have already presented in my multipart  review of remedies for AI-induced disabilities -  should provide sufficient relief to allow either continuation of AI therapy, or a switch to another endocrine agent, especially fulvestrant (Faslodex) or barring that for any reason, tamoxifen, given that it is in general imprudent to interrupt active endocrine (hormonal)  therapy for any but a very brief  hiatus.  

 


Constantine  Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

BMD

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Reply with quote  #11 

When I asked my onc about the D3 6 months ago she told me since I live in S. California with tons of sunshine year round that that treatment was not needed. I see her again on Monday and will take your information with me. Thank you Edge.


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BrendaBMD
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Reply with quote  #12 
BDM--don't give up.

Edge--Thanks so much.  You've always thorough and concise advise.   My computer crashed last December and I lost the bookmark for this web site along with a lot of my other bc info.  NNN's story led me back here.  

The supplement that I found is a pill made with bioavailable sources and is gluten free.  Their web site recently made liquid vit d3 available.  I thought to order some as I read it's better for absorption?  and what about tanning salons--can you get any vit d synthesis from that?  or was my friend just joking with me?

The docs gave me a vit d3/calcium supplement but it was very low dose.  Now I take one pill a day because like BMD I was told that I get enough from the sun.  The doctors did tell me to go to the sea often.  But I'm not a sun goddess by a long shot except to walk the dog by the lake.

in 2008 my vit d3 was 31 ng/ml and only a little higher since then.  It's time to check again.
Calcium (microcrystalline hydroxyapatite, amino acid chelate, citrate and phosphate) 1,221 mg
Vit D3 (cholecalciferol) 1,200 iu
Vit B6 (pyridoxine hci)  555 mcg
Magnesium (amino acid chelate & citrate) 600 mg
Zinc (amino acid chelate) 15 mg
Copper (amino acid chelate) 3 mg
Maganese (amino acid chelate) 1.7 mg
Molybdenum (amino acid chelate) 105 mcg
Boron (amino acid chelate) 2.25 mg
Vanadium (pentoxide) 150 mcg
Silica (from horsetail extract) 10 mg
Other ingredients: Microcrystalline cellulose, Croscarmellose sodium, stearic acid, magnesium stearate, silicon dioxide

I agree with you to try all the alternatives and "never surrender".  I hit a wall.  My doctor didn't want that I switch to another AI because she didn't see the benefit for my symptoms.  I could ask again.  It wouldn't be the first time (lol).  At least I can follow the vit d3 recommendations.

 

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Marilyn
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edge

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Reply with quote  #13 

Brenda, Marilyn:

 

 

Lessons in How to Get, and Not Get, Optimal Vitamin D3 Levels

 

At just 31 ng/ml 25(OH)D levels as you (Marilyn) report, you would be definitely have a Vitamin D3 insufficiency (see the definitions above), and furthermore  as the weight of the evidence suggests, that  level would be sub-optimal  for  bone health, anticancer activity, and benefit from AI-induced disability.

 

So, (Marilyn and Brenda) the much repeated claim that many individuals do not require high-dose Vitamin D3 supplementation primarily because they must be receiving sufficient amounts from (climatic) sun exposure is against  the evidence:

 

Why Sun Exposure Is No Guarantee of Vitamin D3 Sufficiency

Unfortunately, there is in fact no reliable way to sustain optimal Vitamin D (as Vitamin D3) levels via sunlight exposure, due to wide variability in individual genetics, dermal melanin density, geographical latitude and season, atmospheric particulate filtering, and dozens of other factors. And new recent findings from Neil Binkley and colleagues at the University of Wisconsin have documented the 25(OH)D status of healthy individuals with habitually high sun exposure in a sun-drenched clime, that of Honolulu, Hawaii at 21 degrees latitude, finding that over half (51%) of this population had clinically low vitamin D status, suggesting extremely wide variable responsiveness to UVB radiation among individuals, allowing some to have low vitamin D status despite confirmably abundant sun exposure under optimal conditions, and these findings have been repeated and confirmed in other climates across the world with high sunlight exposure.

 

Confounding Factors (Galore)

It must be recognized that there are innumerable complex and interacting influences on 25(OH)D serum concentrations besides UV exposure / season / geography, including skin melanin levels, skin morphology, extent of body exposure, race/ethnicity (African-Americans, East Indians, among others), sex, age, body composition and body fat distribution, among others.

 

  1. So, there is a VDR (vitamin D receptor) gene that plays a critical role here: we know from genomic research on the polymorphism of this VDR gene that sensitivity to active vitamin D varies between genotypes. In this connection, there are also racial and ethnic variations in Vitamin D status independent of ample sun exposure, with for example both African-Americans, and less obviously, Asians, consistently tending to sub-optimal concentrations. These findings have been repeated and confirmed in other climates across the world with high sunlight exposure.  Indeed, melanin pigment is only one of dozens of determinants of Vitamin D levels, and although not widely appreciated, low and moderate levels of UV light exposure stimulate vitamin D production, but prolonged exposure actually destroys vitamin D in the skin (and independently of melanin pigment or skin color, as first shown by Ann Webb and coresearchers with the Vitamin D, Skin, and Bone Research Laboratory at Boston University Medical School, and reaffirmed by colleague their Michael Holick, as well as John Hathcock at the Council for Responsible Nutrition, among many others).
  2. There is also individual widely variable responsiveness to UV radiation, causing some to have low vitamin D status despite abundant sun exposure, as well as to Vitamin D supplementation. Not only is it typically the case that the more you tan, the more melanin skin pigment accumulates, hence retarding Vitamin D synthesis, but also the fact of a tan does not ensure a vitamin D level in an optimal range - in fact despite the claims of disputable (all of them) tanning salons, there is no reliable and consistent association between tanning and efficient Vitamin D synthesis, and it is as probable for someone with a rich tan to be Vitamin D deficient it is someone for someone who is relatively untanned. The inter-individual variation in Vitamin D concentrations is so wide that some individuals present high levels with apparently little UV exposure or supplementation, while others are deficient even in sun-drenched climes (and sometimes even with supplementation). And as to  tanning salons, the evidence overwhelming suggests them to be a public health menace for which reason legislation is pending to close them  as such.
  3. Two  other factors  play  a confounding role: 
    • The  first is that studies have shown an abysmal and disgraceful situation at testing laboratories, with minimal agreement cross-laboratory, or even intra-laboratory from one day, or reading, to another. 
    • The second is, as is so often the case, drug-drug interactions (DDIs) which also influence serum 25(OH)D concentrations: these include cimetidine (Tagamet), carbamazepine (Tegretol), thiazide diuretics, lithium, mineral oil laxatives, Olestra, orlistat (Xenical), and hundreds of others. And hormonal regulators like calcium and parathyroid hormone (PTH), as well as the levels of melatonin, can further influence and confound serum 25(OH)D levels.  I leave you with just the title of Etienne Cavalier's recent article in JBMR which tells it all: "Serum Vitamin D Measurement May Not Reflect What You Give to Your Patients …").

 

Testing Vitamin D3

Given these considerations, and the risk of melanoma, the only safe and reliable way to assure optimal serum 25(OH)D Vitamin D concentrations is through supplementation, preferably fine-tuned via actually 25(OH)D assay.

 

As to Vitamin D levels from the 25-Hydroxy Vitamin D assay, it can take several weeks before internal levels fully respond; a rule of thumb is approximately no less than 6 weeks, so you should retest after another several weeks to be sure of reasonable uptake time. If upon retest, levels are still significantly below 66ng/ml, one more retest should be conducted after increasing the dose. There may be a problem of calcium utilization, in which case a high bioavailability / high utilization calcium preparation like Cal-Quick (Twinlab) should be tried, taken only with meals (towards the end of a meal).

 

Again remember that in general we expect 25(OH)D levels to rise by about 10 ng/ml points for each increase of 1000 IUs, at least in the typical case (and dosing up to 10,000 IUs is still known to be safe if needed).

 

Optimal Vitamin D3 Formulation

Idiosyncratic reaction to Vitamin D, which in my experience this is likely to be due to the specific formulation you used, probably to some non-essential ingredient or excipient in the base of the formulation, such as soybean or sunflower oil, magnesium stearate, or other allergenic or sensitizing component. One thing to try is switching, so if your formulation is soybean-based, try a sunflower form, and vice versa. Now Foods brand of Vitamin D3 tends to use rice bran oil instead of the somewhat more allergenic soybean or sunflower oils.  One option I would suggest is trying the very high-quality high-purity specialty label Healthy Origins which uses only olive oil to supply Vitamin D3, with the only other ingredients being innocuous gelatin, glycerin, and purified water, and with no sugar, salt, starch, yeast, wheat, gluten, corn, soy, dairy, and no preservatives, artificial colors or artificial flavors.    The online retailer iHerb.com carries Healthy Origins Vitamin D3 at 2400 IU per softgel at:

http://www.iherb.com/ProductDetails.aspx?c=1&pid=7763

(360 softgels). 

Healthy Origins formulations are essentially near-zero allergenicity and hence the least likely to occasion any adverse reaction, and it's one of the most affordable high-quality formulations I have encountered, about $11 for 360 softgels.

 

Doing  the Math

Finally, although 25(OH)D testing is required, nonetheless based on field and empirical  evidence, a low dose such as  1200 IU daily that you (Marilyn) were taking is against all odds of ever achieving adequate or sufficient, let alone optimal,  Vitamin D3 levels, and again empirically I would hazard that to achieve a  level > 66  ng/ml -  given that 1200 IUs/d  brought you to the insufficient level  of 31  ng/ml -  would require approximately an additional 4000 IUs (remember: roughly each additional 1000 IUs raises 25(OH)D levels  another 10 points on the ng/ml scale), so  something like 5000 to 6000 IUs daily is likely to be required, as a  best approximation.

 


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

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Reply with quote  #14 
I take 2,000 IUs a day in a fat soluble gel cap and my D level at last onc visit was 59.

It has improved my life. I notice a HUGE difference since I went from a blood level of 11 to now.

I have less body aches and pains and my onc says I am tolerating the Femara well BECAUSE of the D.

(I also think it helps me lose weight!)


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Reply with quote  #15 
Edge--I need to correct something (edited to say my error not Edge).  My level of 31 ng/ml of Vit D was Jan 2008.  I only began to take the increased level of Vit D this past July 2009.  In Jan 2009 my Vit D level was 19 ng/ml.  Not one doctor made comment to me about it because the range...10-45.  If you agree, I'll pass on your wonderful summary to my doctor.  I've already given them some journal articles.  

And about the head spinning I had...it was in July when I began my increase of Vit D and thought that I'd be able to tolerate my Arimidex.  I took Arimidex for two days and that is what caused my head spinning and rapid heart beat.  So I stopped.  I could try again.

NoSurrender--thanks for the info.  We talked about this so much over the last couple of years...I'm becoming a believer in the Vit d therapy.  I feel so much better too.  I thought it was because I stopped Arimidex.  Only one way to find out....I need to go back on Arimidex.


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Marilyn
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BMD

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Reply with quote  #16 
I saw my onc yesterday and she changed her tune about the Vit D. She said with all the sunscreen everyone wears studies now say to supplement. ??? I told her about the D-3 helping with SE's from Femara and she said to take it. I picked up my first bottle today. Hoping for a miracle.

By the way she did ask for to get the Vit D level with my blood work. I think this is the first time she ever did that.

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BrendaBMD
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Reply with quote  #17 
Good for you Brenda!
I am a sun worshiper- I am out all the time in the garden, swimming, riding the bike, and I was SEVERELY DEFICIENT. and I don't use sunscreen!
When my blood came back, my onc put me on 50,000 ius once a week for four weeks. Then I started 3000 ius a day.
Now my levels are up, so I take a GEL CAP (VERY IMPORTANT) 2,000 ius a day.
Apparently the D needs the fat in a gel cap to work right.
I also take my calcium at the same time.

Marilyn, I believe in vit d therapy!

Brenda- I know you will feel a difference in about two months- or as long as it takes for your level to rise!


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