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Topic: For Arimidex (Anastrozole) users, new, past, and ongoing

Forum: Hormonal Therapy - Before, During, and After —

Hormonal therapy medicines can be used to lower the risk of early-stage hormone-receptor-positive breast cancer from coming back, shrink or slow the growth of advanced-stage or metastatic hormone-receptor-positive breast cancers, and lower the risk of developing breast cancer in certain women who are at high risk. They work by lowering the amount of estrogen in the body or by blocking the effect of estrogen on breast cancer cells.

There are several hormonal therapy medicines, including, tamoxifen (Nolvadex, Soltamox), Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole).

Hormonal therapy is usually prescribed for multiple years. Common side effects include hot flashes, joint pain, fatigue, and bone thinning.

Note: This is a safe place to share YOUR experience, not to be influenced or influence others. Please contact your doctor about any questions or concerns you may have if you are currently taking hormonal therapy.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

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Posted on: Jul 10, 2012 07:46AM - edited Nov 15, 2017 02:07PM by Moderators

nancyjac wrote:

I found a couple of older threads about Arimidex, but they covered a large time span with a gazillion posts, so I thought I would start a new thread for Arimidex/Anastrozole users.

I am starting on Anastrozole today. Plan is to take it for 5 years, possibly longer. I already have osteopenia and osteoarthritis (limited to one knee at this point), so I am most concerned about the bone and joint side effects. I'm already frustrated by finally having some energy and stamina back after chemo and radiation, but now I have trouble exercising due to the bum knee. I'm concerned about that getting to be even more of a problem on the Anastrozole.

Please share you experiences, side effects, questions etc. about Armidex/Anastrozole here.

Edited by Mods to add content from the main Breastcancer.org site on Arimidex: Benefits, Side Effects and More

Dx 11/2011, IBC, Stage IIIB, Grade 2, ER+/PR+, HER2+ Targeted Therapy 12/6/2011 Herceptin (trastuzumab) Chemotherapy 12/6/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/9/2012 Mastectomy: Left, Right Surgery 4/16/2012 Mastectomy: Left Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/28/2012 Breast, Lymph nodes, Bone Hormonal Therapy 7/9/2012 Arimidex (anastrozole)
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Nov 10, 2020 01:14PM BlueGirlRedState wrote:

Recently I read that prostrate cancer might start producing its own testosterone even though an Rx is used to stop/block production. Has anyone heard if ER+ cancer might produce its own estrogen in response to AIs or Tamoxifen? I did not know this before seeing my oncologist earlier this month, so did not have a chance to ask her. My estrogen has never been monitored before/during Tamoxifen or AI. When I ask, I'm told that monitoring estrogen is not part of the standard of care. So it sounds like I could pay for a test with the usual blood draw for WBC. I will post this on other AI and tamoxifen threads, sometimes it seems like information is scattered.

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Nov 11, 2020 11:08AM DaisyGurl1234 wrote:

Hi Everyone.

I was on Tamoxifen for about 15 months. Starting having some worrisome side effects, so MO changed me to Anastrozole three months ago. Last Friday I started to have some spotting. It got progressively heavier. I haven't had any periods since March of 2019. I called my MO and he wants me to do Labs on Monday and see him on Wednesday. Has anyone else had this happen to them? If so, what were the results? I don't even know if this is related to the anastrozole.

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Nov 12, 2020 11:08PM CindyNY wrote:

DaisyGurl- I has some bleeding, spotting, pink tinge, after intercourse. But I was also using Estring. Long story short, I stopped Estring and all of that stopped. Contact your GYN, it may have nothing to do with Anastrozole. Best of luck to you!

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/13/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)
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Nov 13, 2020 08:12AM Twin2Sister wrote:

I've been taking Arimidex for 3 years. My experience with side effects has been tolerable. Every few days I have to take ibuprofen for joint pain. My right hand is stiff especially in the morning and my left knee gives me some trouble but not enough to prevent me walking. The biggest concern was fear of bone loss. I was recommended to take Prolia when Arimidex was started, but I begged off until after the next Dexa Scan It was a little worse but still in the osteopenia level. Having tried Calcium citrate, Calcium carbonate as well as Viactiv I decided to be consistent and began Viactiv twice daily. My last Dexa Scan was NORMAL! I could not believe my eyes. My oncologist asked me what I was doing. The only change was the Viactiv.

Now I'm having hair loss!!! Guess you can't have everything. But doesn't keep me from trying. After my hair came back from chemo I thought I was done with that. I'm trying to be positive...would rather have normal bone density than a full head of hair. My next project is to research hair remedies. If anyone has a suggestion please share.


Bonnie
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Nov 13, 2020 01:20PM BlueGirlRedState wrote:

Twin2Sister - with you on bone loss and hairloss with Arimidex. More concerned about bone. Weight bearing exercises are supposedly the best, but AI can take its toll. Don't know when next bone scan. Been on AI 13 months. Hairloss.... After struggling to keep it during chemo with cold capping, and finally starting to get it back, AI is taking it away. Keep hoping for that magic shampoo or supplement. Biotin seems to help with nails, but I think I shed more than my cat or dog.

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Nov 13, 2020 10:43PM Annie60 wrote:

I, too,was having hair loss. My daughter gave me a shampoo she used after she experienced hair loss after weight loss surgery. It's called Purad'or. It has apple cider vinegar, biotin, caffeine, castor oil, and 15 DHT blockers. You have to look for the one with these ingredients. I went to the Purad'or website instead of Amazon - they had the one with all the ingredients and it was cheaper. My family has commented that my hair looks better and I have stopped shedding. I also take biotin. It maybe coincidence that my hair stopped falling out but I think the shampoo helped.

My hair dresser did show me how to use L'Oreal Root Cover Up.It really makes your hair look thicker. Just spray it on the roots in the thin spots and it makes a world of difference. I use it when I need a a boost of confidence.









Dx 8/28/2018, IDC, Right, 1cm, 1/3 nodes, ER+/PR+, HER2+ Dx 8/28/2018, DCIS/IDC, Right, 1cm, Stage IIIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ (DUAL) Radiation Therapy 5/28/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 8/21/2019 Surgery Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy AC + T (Taxol)
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Nov 16, 2020 12:24PM BlueGirlRedState wrote:

Annie60 - thank you for shampoo suggestion. Have you heard any concerns with DHT blockers (testosterone ?)

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Nov 16, 2020 07:19PM Annie60 wrote:

I have not. I need to research this

Annie

Dx 8/28/2018, IDC, Right, 1cm, 1/3 nodes, ER+/PR+, HER2+ Dx 8/28/2018, DCIS/IDC, Right, 1cm, Stage IIIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ (DUAL) Radiation Therapy 5/28/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 8/21/2019 Surgery Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy AC + T (Taxol)
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Nov 17, 2020 02:30PM sro96 wrote:

I just joined so not sure if I'm using correctly but I had a few questions on behalf of my mom.

She recently had chemo, surgery, and radiation. We just started the anastrozole 4 days ago. She's already experiencing some side effects and I was wondering if it was just her body adjusting to the medication or if these were long lasting. If long lasting effects, how long - would it be for the next 5 years or do they subside after a few weeks/months?

Also, have any of you utilized serums/shampoos that encourage hair regrowth? We shaved her head very early on in the process and it's growing back already, yay! Just wondering if there were products that would help it grow back faster/healthier/thicker.

Thank you in advance!

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Nov 17, 2020 05:45PM Whatjusthappened wrote:

sro96, I'm sure others will chime in, but as side effects go, everyone is different. Some people have side effects initially that improve over time, and hopefully your mother will fall into that category. For others the side effects will continue or get worse as time goes on. I am unfortunately I'm the latter category, and I've been on it about 16 months or so.

I'm afraid i don't know much about the hair regrowth, but there are a lot of threads on that topic that you can check out if you do a search for them. I do find that the anastrozole makes me lose more hair, so it's probably good to get out ahead of it if possible.

I wish your Mom well. It's awesome that you're so supportive of her during all of this.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/21/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/22/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Nov 19, 2020 03:49PM Castigame wrote:

I am thankful that bone density test after three yrs of Arrrghrimidex is normal for my age and very little probability of ostereoporosis or fracture. I weigh a lot and very conscious of weight gain. Guess I should stick it out as long as possible.


Mimi Dx 1/11/2017, IDC: Papillary/IDC: Cribriform, Right, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2- (IHC) Dx 1/11/2017, IDC, Left, <1cm, Stage IA, 0/2 nodes Surgery 2/15/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Chemotherapy 3/21/2017 Radiation Therapy 7/31/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 10/30/2017
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Nov 20, 2020 06:45PM JRNJ wrote:

sro96, Unfortunately for me it started right away and only gets worse, not better. I tried aromasin for about 2 months and Arimidex for about 3 months. I'm on Arimidex every other day now, that helps a little, but not standard of care. My Dr. said most people do better on aromasin, so you can try that. Aromasin gave me headaches, dizziness, insomnia. Arimidex is better for my head but worse for my arms and feet. Per the suggestions I've read, I'm going to try brand name arimidex next. Then Femera. I"ve read some people do better on different ones.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/4/2020 Aromasin (exemestane) Hormonal Therapy 8/6/2020 Arimidex (anastrozole) Surgery 8/25/2020 Prophylactic ovary removal
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Nov 25, 2020 01:05AM Gussy wrote:

I am on exemastane which I think is generic Arimedex. I am having so much joint pain, stiffness and gait problems that I'm thinking of going off for a month and see if anything improves. I'm due to se MO in Jan but don't know if I can wait that long to do a desist. Has anyone had that kind of reaction to exemastane?

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Nov 25, 2020 09:26PM CeliaC wrote:

Exemestane is generic Aromasin. Generic Arimidex is Anastrozole, which is what I am on, and which also has side effects like joint pain & stiffness. Sorry I cannot help with advice on Exemestane. Hope another BC sister can chime in here. Have you been on it for awhile & side effects worsening? Perhaps you can call the MO office for some advice on the side effects?

Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/21/2017 Whole-breast: Breast Hormonal Therapy 4/5/2017 Arimidex (anastrozole)
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Nov 28, 2020 10:17PM MicheleH57 wrote:

So ... with Anastrozole being rather rough, despite it not being described as the worst Rx one might be prescribed, what's the news about the *next generation* of AI for BC? Is there any? If not, why not?

I start radiation on Tuesday after a lumpectomy (2 surgeries in October; long story as wires were moved) for HER2-, ER+/PR+, stage 1, oncotype 10.

From what I've read here and on other boards, the radiation will be a relative picnic compared to the 5 years of Rx after.

Or are there "not-so-bad" experiences and I'm missing them?

But back to news about next gen Rx. Anyone?

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Nov 28, 2020 10:35PM CeliaC wrote:

MicheleH57 - Hello there. Healing thoughts to you as you continue your journey. You may wish to take a look at the topic "Doing Well on AIs" for some "not so bad" experiences. I would characterize my experience with Anastrozole as "not so bad". Please be advised that radiation treatment for some, would not necessarily be termed a "picnic". Hope your radiation oncologist has given you good advice on preventing skin damage, the importance of eating well (protein for healing), etc. My radiation was almost 4 yrs ago, so not sure what has changed on that front. I have very fair skin (natural redhead) and my skin held up extremely well - religiously used Miaderm cream.

Have not heard of anything new on the Rx horizon. Perhaps someone else will have some insight on this.

Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/21/2017 Whole-breast: Breast Hormonal Therapy 4/5/2017 Arimidex (anastrozole)
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Nov 29, 2020 10:02AM Laurencl wrote:

Michele,

I have been on anastrozole since January. Doing fine. Drink a ton of water, exercise, eat well. Not that we can help ourselves, but try not to read yourself crazy. You don’t know until you know. If you trust your Dr., then follow what he/she says. If oneAI does not sit well, try another. Live your life

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Nov 29, 2020 05:53PM MicheleH57 wrote:

Thank you for the referral to the other posting site here.

A HUGE help! Thanks again!

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Nov 29, 2020 07:38PM HikingLady wrote:

MicheleH57 Radiation was manageable for me. But, not a 'picnic.' As the weeks progressed, I was ever more tired. Fatigue was my main challenge, and I just had to get a lot more sleep, and also take care of my skin, of course. I was guided to eat A LOT more protein than usual (70-100 g/day), and by surgeons and by radiation oncologist, for cell repair. Maybe 2-3 weeks after radiation ended, I started regaining energy, and a couple of months later, felt normal again. But, during radiation, I certainly was tired. Mine was 7 weeks, 5x/week.

EVERYONE seems to be different, in how we respond to all AI's, for sure, so I'll just share my own story, not presuming that anyone else is the same.

Being on an AI is not a horror show at all for me. I've accustomed myself to some annoyances, but nothing is ghastly or impossible, and every single 'side effect' receded and was more bothersome at first, and much easier or disappeared as time went on. After 2-3 months, every single annoyance was better, which is exactly what my MO predicted.

Anastrozole was my oncologist's choice to try first, because in his extensive practice, he'd seen people tolerate it a bit better than others. Lots of the 'side effects' of the AI meds are actually simply due to reducing the estrogen level. So, they're not blamable necessarily more on one brand than another, and the difference in which medication causes more annoyances sometimes is as simple as what fillers are used in the compounding, since the actual AI part of it will be pretty similar, as far as how your body behaves. According to how my oncologist has explained it, that is. I've become accustomed to a bit more stiffness and joint challenges, and daily exercise and drinking a lot of water have both been the solution to most challenges. I just feel generally a bit creakier than I used to. But, not HORRIBLY so, and if I keep exercising and moving and hydrating really well, I feel better.

Sending warm wishes to you!

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 30, 2020 10:05AM AmyCinny wrote:

Hi Gussie,

I went off anastrozole in August because of the pain. I took a 6 week holiday and then started exemestane. I've been on that since October 12th and I'm now almost crippled by the pain in my legs and hands. I'll be contacting my oncologist soon and who knows what I'll do next. It's always a balance between quality of life and taking a med.

I've been - and have always been - active even with all the pain. I walk/run at least an hour/day and find it makes no difference at all to my pain level.

Good luck with your decision.

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Nov 30, 2020 07:12PM Gussy wrote:

Amy - did you feel better when on your six week drug holiday? I decided to go off two days ago and hoping to be able to get around better. Right now I feel like a feeble cripple.

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Dec 2, 2020 04:30PM Margun wrote:

there any reasons that some docs give letrozole others Arimidex? Are both equally efficient? Why some take 5 years and for others is suggested 19 years?

I am on letrozole for a year with bone muscle pain but they get word when rainy. Those days the entire body and bones are aching. But as some of you said, cancer is worse so we must deal with it. Let’s hope it does not get worse

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Dec 3, 2020 10:50AM BJI wrote:

AmyCinny, did you notice the change when you took 6 weeks off? I am considering a vacation also, getting worse every week, my doc doesn't want me to take a break.


Bev Dx 4/11/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/26/2017 Lumpectomy: Right Radiation Therapy 5/8/2017 Balloon-catheter: Breast Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Chemotherapy 5/30/2017 Taxol (paclitaxel) Hormonal Therapy 9/13/2017 Arimidex (anastrozole)
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Dec 3, 2020 04:31PM BlueGirlRedState wrote:

Brand name Arimidex seems to have less intense SE than generic anastrozole. At first almost none, but after a year my hands, especially left hand are stiffening, and one finger on left locks up, sometimes requiring the use of the other hand to unlock it. Turmeric seems to help. I take a supplement as well as adding to diet. I wish I had more confidence that it was doing some good.

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Dec 4, 2020 09:25AM Anx789 wrote:

Hello there! Anybody has elevated blood calcium since taking Anastrozole? Six months ago my calcium is high (10,4) my doctor recommended to take only 1 Caltrate a day instead of two...a month later it went normal, but now it’s elevated again (10.4). Before Anastrozole and without taking Caltrate, my calcium was normal. If Caltrate is causing it, what altesupplement can I used to protect my bones?

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC)
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Dec 5, 2020 01:11PM BlueGirlRedState wrote:

Anx789 - Calcium and how to keep bones healthy is a puzzle to me. AIs are documented for contributing to osteopena/osteoperosis, and it seems like another drug /bisphosphonates are the DR's answer. But it seems like those have their own problems. I've read that "too much" calcium can cause heart issues for women and that as we age, we really do not get that much from food or supplements. Weight bearing exercises are supposed to help. I take a plant based supplement, New Chapter bone health - mostly D, K, calcium, and a few other ingredients. Would animal based be better? I walk/hike regularly. With covid, I have not been going to the gym, and I miss the weight circuit and treadmills - made me work harder. I have not had a bone scan in about 2 years, probably time to see what AI and age have done. I do not know if the exercise and supplement will build bone, but hopefully will slow the loss down. Thinking about ankle weights and small arm weights to increase weight bearing on hikes/walks. I eat dairy - yogurt, cheese, milk,

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Dec 5, 2020 01:28PM CindyNY wrote:

BlueGirlRedState- I haven't been in a gym in months. Last 5 years I went 3-5 times a week, heavy duty weight bearing exercises, but Dexa scan showed osteopenia in the hip neck. I took Fosamax generic 1x a week for over a year. Had dexa about a month ago, back to normal range. Thought about Reclast infusion, actually endocrinologist called yesterday to set it up. I told them I'm sticking with the weekly pill, it's working. Add in, I don't know if I'd get side effects from infusion. Bottom line is the Anastrozole definitely went after my bones.

3/1/2023 will be 5 years of Anestrozole for me. I'm hoping I get to stop it, as well as the Fosamax. Drugs to offset the SE of another drug. UGH.

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/13/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)
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Dec 5, 2020 01:37PM LillyIsHere wrote:

Anx78, yes, I had elevated blood calcium levels in May and I stopped calcium supplements. It went back to normal. I have stopped all supplements and will get back to vitamin D in couple months. I think I was taking to many supplements.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole)
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Dec 5, 2020 01:55PM Lgbert wrote:

Calcium started to get a little higher but also have hyperthyroid, so my endocrinologist had me cut back on dosage of calcium. Got dx with right beast ca and had mastectomy. Started Arimidex and calcium went up again. Bone scan before starting was good for my age..69 yrs old. Stopped all calcium supplements but still on vit D. Calcium levels back down. I make it a point to eat calcium enriched foods, and using goat milk. Have to wait until next Jan for bone scan. Walk daily and average 15,000 steps per day


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Dec 5, 2020 06:57PM BlueGirlRedState wrote:

So do "high" levels of Calcium suggest that it is not being absorbed and possibly why there is bone loss?

My calcium levels have fluctated a little month to month but stay in the low-mid "normal" range of 8.3-10.8. Initially dropped (still normal) with Ibrance and Arimidex, then came back up a little. I take about 5000 IU D with K. The New Chapter Bone strength ( I take 1/3-1/2 suggested dose) has calcium as well as D/K, and a little Mg Strontium, Silica, and Vanadium also listed - maybe from the algae?

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