FEMARA
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estrogen can also be produced by steroid sulfatase (STS) in a second pathway, although in much smaller amounts. STS inhibitors are being developed for dual blockage of estrogen. There is a trial called IRIS where they are testing its effectiveness.
For those of us carrying X-linked ichthyosis, we may already have lower amounts of STS, since we inherited a faulty X-chromosome from our father where the gene for STS was mutated or deleted.
I asked my geneticist about her thoughts on the IRIS trial and she replied that AIs are so effective that adding another inhibitor may not provide much benefit, and that lowering estrogen even further may cause more harm than good.
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gkbuster...yes you are correct. Aside from hormone positive BC we need estrogen for every other vital organ in our bodies. Our brains, skin, heart, bladder, joints and personal parts! Even the small amount produced by our bodies after menopause helps. Thats why there are so many side effects of the drugs. Good luck to all.
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this may be a better question for the long term Lupron forum but it seems to be a dead thread nobody's really commenting on my post from weeks ago. So my question is are there women on this board that are on femara and zoladex? If so have you been on it very long and can you report to me what you're doing to help with bone density. I am really afraid of losing losing bone density on these meds. I am more afraid of the breast cancer coming back so I continued on the meds. But I'm just wondering if anybody has been on both of these meds fairly long-term and how their bone density is and what they're doing to protect their bone density. I'm on supplements plus exercise. I try to make sure what I do is a weight-bearing exercise. But I'm just curious have people have success on both meds keeping their bone mineral density and if if so what have they done? Thank you
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Hey gkbuser, good question. I'm on Lupron + letrozole, but I've only started. My plan is to have my ovaries removed in the next 3-6 months, because I can't see myself doing shots for 5 years. I discussed this for a long time with my MO, and thought about it long and hard. I'm 41, and will stay on AIs for at least 5 years, meaning I need to be on Lupron for 5 years as well. The probability of my ovaries waking up at 46 after 5 years of Lupron and chemo that I've had (Taxol + AC) is not very high.
Anyway, to your question regarding bone density - research Zometa or Prolia. My MO prescribed it, but I'm still a little on the fence about doing it and still hasn't scheduled my first infusion. It was shown that, if given every 6 months, Zometa not only helped to maintain bone density, but also improved disease free survival. It is hypothesized that it prevents bone metastasis to a certain degree. It's not without side effects, of course, which is why I'm on the fence and waffling about scheduling my infusion.
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gkbuser - Hopefully some women with longer experiences will chime in but I'll share my brief experience and thoughts. I started with taxoxifen but was switched to Lupron and letrozole. My MO recommended the Lupron even though chemo had knocked me into menopause just to be sure that my ovaries didn't kick back on at some point. He thought that surgery to remove ovaries was an extreme measure. I disagreed and after 4 monthly Lupron shots, I had a bilateral salpingo-oophorectomy (I kept my uterus). My menopausal symptoms were tolerable on Lupron but lightened up considerably after the surgery. I was surprised and mentioned it to my MO. He made a face and stated bluntly that Lupron was "nasty" for side effects. ha! He sure didn't share that information when he was recommending it to me!!
I had already been taking vitamin D but added calcium supplements per my MO's advice. He likes Citracal, 600 units twice per day. I also do weight bearing exercises and weight lifting twice a week. I had a DEXA scan to check my bone density when I started the letrozole. My insurance did not cover it so I had to pay for it out of pocket. My MO stated that he was shocked at my results. I'm a white small boned woman and he expected me to already have bone density issues. Instead, my T-scores were well into the + range for most measurements and my lowest was close to 0. Considering that is compared to the bone density of a healthy 30-yo, I was very happy with that.
Honestly, I think it mostly depends on your genes. My family medical history has lots of bad stuff but not a single instance of osteoporosis that I am aware of. I'm hoping this helps protect my bones despite the early menopause, oophorectomy, and AI.
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leydi, thank you. I have ILC also.
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gkbuser- I didn't do Lupron but I did do oophorectomy and now take letrozole. I was told 1200mg calcium citrate, & 600mg magnesium daily and continue to take the Vitamin D3 10,000IU 5 days a week that I was already on for bone health along with weight bearing exercise. I couldn't handle how many more pills that was going to be, so I use Solgar brand liquid calcium + magnesium + D3. Dosage is 2 Tablespoons/30mL per day to get the prescribed mg of calcium and magnesium.The strawberry flavor is the best, the blueberry tastes like blueberry yogurt and if I had to I could do the orange flavor but I'm not a big fan of it. Anyway, so far so good.
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lula, thank you. Do you ladies mind sharing how often you were told you needed to get bone density scans? My MD said every 2 years but that just seems like such a long time not to know what is going on. I am worried I am doing permanent damage to myself.
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hi gkbuser,
I wondered about that too and had a chat with my onc about it.I just had a bone density test that put me in the normal range (there are only 3 categories) and was told I don’t need to get one done for another 2 years. My onc told me to stop taking calcium supplements (apparently calcium feeds cancer) and to take a vitamin D supplement. She told me she can check my Vitamin D level via blood tests to see how I’m progressing.
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kanga Roo, thanks. Wow! Calcium feeds cancer?? Good grief! I have been taking it for over a year. Yikes!
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Attempting to improve bone density may increase breast cancer risk. Kanga Roo maybe your doctor is ahead of the times.
The Manufacturing of Bone Diseases: The Story of Osteoporosis and Osteopenia
Posted on: Saturday, November 18th 2017 at 3:15 am Written By: Sayer Ji, Founderhttp://www.greenmedinfo.com/blog/osteoporosis-myth-dangers-high-bone-mineral-density
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OOops, didn't want to scare anyone off taking calcium - I think it applies to my type plus a number of other factors... it's the way calcium is absorbed which is why I am on the Vit D -
Worth a google, but I’d never take/not take anything without talking it through with my onc
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Your type? Of cancer
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I've been on Letrozole since Dec 2017 (no Lupron) and I'm scheduled for Zometa infusions twice a yr for 3 years. No SEs from the Zometa infusion - although I did miss my port (a little). My MO also says it helps with bone density and seems to protect against recurrence. My hospital pharmacy recommended calcium and vit D3. I've added a Vit B complex, vit C, Tumeric, glucosamine, and continued with loratadine. I had a baseline bone scan and will get another in 3 years.
My MO says it's his patients' experience that your Letrozole SEs in the first 3 months are what you can expect long term ie they won't get worse. Has anyone else heard that or experienced something different?
Lanne
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Marijen - I have stage IV ER+/PR+, HER2-
I was diagnosed de novo in January this year and was put on the kisqali/Femara combo. I had a recent CT scan that showed the cancer had reduced 50% and had the bone scan done as a base line to see if the Femara was causing problems in the future. I think I am very lucky to have a great oncologist
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I am currently on Letrozole, formerly on anastrozole, and one other, had side effects with all.
I think Ive been on for 7 months, Im gaining weight, Im active and eat plant based /fish diet no dairy.
Walk daily, Im a Rehab therapist active in my job. Im exhausted, by end of day have cognitive issues,
weakness and pain. Anyone else with same, by one Im feeling it
Best to all
CirbS
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CirbS, sounds like you're doing a great job taking care of yourself. Have you discussed the side effects with your doctor?
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So far, so good on letrozole for a little over 2 years. No SEs. I am happy to have this drug in my arsenal of weapons against breast cancer.
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GK, I am scheduled for a DEXA scan in early June, then evey 2 years after. I am also scheduled to begin yearly Zometa infusions next month. Yes, yearly and used as a preventive. It's always interesting to me the various approaches used by different MOs.
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thanks hershey!
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gkbuser, I have bad bone density. For instance, at age 41, I had cervical fusion surgery, which means basically some of my verterbrae (back bones) were deteriorating then. I'm on letrozole. I'm scheduled to get the Prolia shot on the 29th. Not looking forward to it. I don't want my BC to come back, but I don't want my bones to crumble. I'll let you know what I find out
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thanks MO.
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I am also ILC and took tamoxifen for 3 years then letrozole for 4 years. My bone density actually increased when I made a conscious effort to life weights 1-2 times/week. I do not take calcium supplements as I thought the information regarding them was confusing too. But I do take Vitamin D. One thing I noticed with the letrozole was that my cholesterol rose almost 100 points in 4 years(!!) and in just 2 months being off it has dropped 20 points. That increase makes me nervous and I hope to get it back to normal.
Letrozole side effects were unpleasant but tolerable. I do have lingering joint pain which I also hope will diminish. Hot flashes have calmed down but still get them. P.S. for you lobular gals, there is a new website and advocacy group: Lobular Breast Cancer Alliance.
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hipline, thanks! It's very encouraging that your bone density increased. I'm going to start lifting. I'm very worried about my bone density. I've been doing jumping jacks. Thanks for sharing. May I ask how long you have been off the letrozole now? Also if you did anything that you found actually helped for these like joint bone pains? First it was my left hip, then right hip, then those got better then I had my right shoulder physical therapy for six and a half weeks had to get a steroid injection. Now my lower back is aching for about 2 months. Anything you found that helped would be appreciated. I do take 800 mg of Motrin a couple times a day. Not much relief. Thinking of trying acupuncture or Chiropractic.
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I have now been off letrozole for 5 months. While I still have some joint pain I find that walking, stretching and swimming seem to make me feel the best. Those exercises provide weight bearing but without pounding. There has been some good research on joint pain relief with acupuncture in patients who take AI's and I would highly recommend it. Here's a link to an article about it:
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About exercising for better bone density, my oncologist recommended jumping rope. Probably jumping jacks would have the same effect.
Hipline, VERY interesting about cholesterol. I'll watch that.
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Hi everyone! I’m new to this board as I’m just finishing my first month of femara. Anyone else get sharp pains in the shins? Always worried about mets but my MO says it would be highly unusual to spread to tibia’s. I had been on tamoxifen from mid-Jan to 3 weeks ago but had my ovaries out 4/13.
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Clynnejohn5. I am on Letrozole and that hasn't happened to me.
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Clynnejohn5, I had the shin pain in Arimidex. On Femara, I'm having more muscle discomfort than bone. Sharp, aching pains in my thighs and buttocks and stiff shoulders.
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I have been on femara for almost a month now. The foot pain is off the charts. Anyone have any suggestions that helped with this? My joint pain isbearable once I started taking liquid coll
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