FEMARA
Comments
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I've been on Fosamax for a bit over 6 yrs and it is working good for me. I was 63 when DXd IBC and had been osteopenia for many yrs so it was a foregone conclusion that I would eventually go on to osteoporosis. Also, I have a HUGE family history of osteoporosis on both sides of my family. I have been on Femara (was not available in generic form when I started it in 2010) and then letrozole (when it became available in generic form) since then.
Exercise is good for staving off (or slowing down) bone loss. Especially weight work. So if you aren't very active or work with weights - you might want to look into the positives of both.
Of course, you should check with your Dr to be sure rather or not other possible health issues might make it contra-indicated. For me, at 70, I am rediculously healthy and have no limitations as to what all I do so I do lots of outdoor activity as I love doing them all. Also, I went through nature menopause at 44 so that may have contributed.
Good luck with finding what is best/works best for you.
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I went through menopause at 55 and was dx'ed at 64. So my body had gotten used to lower estrogen levels. But in the past few days I've noticed a sore bruised spot on one of my ribs near the outside of my radiated breast, on my side. (It’s a tiny bump, but it has a painless counterpart in exactly the same spot on the left). And I seem to have developed several painless whiteheads on my face—clogged pores still covered by skin? I expected my skin to get dryer, not oilier.
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My skin has gotten a lot oiler since I have been on Letrozole. I also am taking Actonel for osteoporosis. I was always osteopenia but then once I started on Letrozole for 8 months my bone density was on the border for osteoporosis -2.5 in the spine. So now I take actonel once a month which I've been taking over the past year. I go for my bone density next month hopefully it hasn't gotten worse. I did think about taking Prolia but my insurance won't cover it since it's on the preferred drug list.
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I went through chemo induced menopause at age 50 so my estrogen has been on the low side after 5 Yrs of tamoxifen also. Now at age 75 and on Letrozole with the Ibrance for MBC, I couldn't believe when I started getting white heads on my face again when other places are dry. What the heck? How is this happening? I guess we put up with this, a small price to pay if it keeps us alive.
For those of you on these bone building drugs, I would be very careful and search for alternatives as I've read too many stories lately of this jaw necrosis happening and I personally know one woman whose femur broke for no reason while on fosamax. I'm sorry to scare you, but these things are happening and the doctors keep saying its a rare thing, it's not rare if it happens to you. We really have some tough choices to make
Faith (in the future)
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So I decided to take a mini break from my Femara, as of yesterday. I am volunteering at my 7 year old fall festival tomorrow and want to be as helpful as possible. I'm tired of pain interfering with life. Anyway. Even in the short time of not taking it I can tell the difference.
Not sure why I'm posting this, just thought I'd share. I see MO next week for my 4 month check and I'm worried he's gonna say 10 years of this. I don't want to switch anymore, I've gone to extremes already.
Anyway just venting
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TangandChris..vent away....that is why we are all here to help each other thru the journey, challenges and successes. I took a break after 3 weeks and it's my 2nd AL so I get it. I have the aches, nausea, headaches, itching, dizziness and amped up feelings so had to stop. Seeing my MO next week to regroup. I know how important these are for avoiding recurrence just need to find the right one and with least SE.
Hope you feel better during the mini break:))
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I am onProlia to help prevent metastasis. I am thin and small framed, and I was borderline osteopenia before letrozole.
My skin is horrible. Acne like a teen
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Kbee....does your insurance cover the Prolia? How long have you been on it
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so, after looking at my DEXA scan results my PCP brought up Prolia without me even mentioning it
. She thinks it will help slow the rate of bone loss, but I need to contact my insurance to be sure it's covered. Does anyone use the coupons from Amgen0 -
Thinking Positive, My insurance did cover it.
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Regarding Bone loss, does anyone know if Prolia is known to help prevent bone mets the way the IV bone drugs like zoledronic acid do? ( I"m also asking this in the Triple Positive forum, as my concern is particularly of concern for HER2+ folks.)
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I read that it does. I questioned my MO about itas I am currently on Actonelnow because I have the beginning of osteoporosis in my spine then I had read the article about Prolia. He said he wouldn't object to me switching from Actonel to Prolia but I would have to talk with my osteoporosis specialist. I did research and my insurance doesn't cover it because it's a non-generic drug.
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Zoziana, I am on Ptolia because of studies showing it decreases bone mets.
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kbeee..do you experience any side effects from the Prolia? I am going to talk to my doctor about it in January. I have my bone density in December. Hoping that the osteoporsis did not get any worse and that the osteopenia areas are still osteopenia. Not sure what insurance we will have in January.
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the only side effect is really bad acne for about the first 3 weeks
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Thanks for all the good info lala!
I am just post menopausal and about to start endocrine therapy and having to decide between AI (Arimidex) and Tamoxifen...as my tumor was smaller 1.2cm and no nodes and lowish oncotype score I think I"m leaning toward Tamoxifen for 2 years and then perhaps switch to AI...altho the stroke/heart issues with Tamoxifen is not great, a baby aspirin a day will help with that and the side effects of AIs on bones can be very damaging...and my dexascan showing that I already have osteopenia. Like you mentioned, to get a few points lower with AI but permanently damage my bones (or have to take yet another powerful drug like Prolia to preserve bones) doesn't seem like a good trade off. Please post what your MO says about BCI...my MO doesn't like to engage in questions so very helpful to hear your experiences.
Meanwhile, wondering if you or anyone on this thread knows if Tamoxifen name brand Nolvadex has a direct to consumer (i.e., lower cost) program? If not, any views on if worth it to take the name brand vs. generic? For AIs, seems like lots of women have less SE with generic brand made by Teva...same for Tamoxifen?
thanks all!
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On the Arimidex thread, someone posted that Amgen (make of Prolia) has a patient assistance program where the first shot is free and others are $25. I have not investigated beyond a google search but check out this link for more details and eligibility https://www.proliasupport.com
good luck!
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I was looking around to see if my meds were lowering my platelets, particularly letrozole and I found this long list of drug support groups if anyone interested.
http://www.ehealthme.com/side-effect/platelet%20co...
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I always read along and rarely post but the skin problems caught my attention. I developed what I thought was facial acne. I battled along for months to be finally diagnosed with peri-oral dermatitis. My MO was reluctant to think it was from Femara but I was worried about the hornonal connection as did my regular doctor. I've now been on antibiotics and it has cleared but will it recur? I'd like to hear if anyone else has had a similar experience.
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jpBCfree---I don't know about the lower cost programs. My Tamoxifen is free so I don't have to worry. I will say that I was on the Watson brand for the first couple of years. Then after reading about different SEs with different brands, I asked CVS to swap me to TEVA brand and I definitely got an improvement in SEs from it. I do have to call CVS and ask them to order the TEVA for me each time I refill because they don't keep it on hand, but I've never had a problem getting it. Talk to your pharmacist about trying a different brand. If they won't help, find a different pharmacy!!
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I am very interested in everyone's favorite brand of letrozol. I do have side effects - severe muscle and joint pain. My pharmacist offered to hunt down some different generics but I have to give him some options...
>Z<
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Dear ladies of BC Community, hi. I have been reading your comments. I was with my MO today and was taking to him about arimidex. It is the pill I am taking to keep cancer at bay. I was talking about my joint pain and he said that I have arthritis. This arthritis is the result of arimidex. I have been on AI since June 2, given by BS. He doesn't understand, he said it comes with age. Anyway, I will talk to my Family MD and she will change it to letrozole or aromasin, whatever Walgreens has. My hands hurt a lot, I have neuropathy on my feet so I don't feel much pain, just numbness and I can tolerate SE a little longer. What I worry about are the fractures. One week before the TE surgery, I had a multiple fracture on my right foot and I haven't fully recovered from it. He suggested to use something that helps me fast (yes, Zometa or Reclast and he will IV me).
I had a biopsy, then a mx, and TE surgery. I will be obliged to have the arimidex for at five years because I rejected chemo. (My deductible fee for arimidex is around $13 dollars, on Walgreens and its brand is Accord). I then went to first RO and second RO and they both recommended full 50 Gy of RT which I didn't accept. I asked the second one for 40 Gy and she said no. Conventional tx which I understand her reasons but I won't accept. I told her that giving full dose to a mastectomy bed with wide clean margins, encapsulated tumor, was like chasing giants (Don Quixote of La Mancha) instead of seeing windmills. With cancer, I have my feet back on the ground, I cannot deal with the esoterics or make believe of something larger than what it really is.
Sandy, I am sorry for what you are going thru because of medications. I agree with you. Carriers don't care if one dies or not, they only care of getting the Medicare money and then start to withdraw benefits. I have been feeling down with what I read in these chat sides. I feel so awful because some of you and also me are having such difficulties accessing tx, drugs, medical care of quality. I also worry because drugs for cancer are changing our bodies in strange, harmful ways. My BP is now 140/80, which is really high if you know that my regular BP three years ago was 90/60. My best analogy for this is that I am in a big luxury transatlanctic boat and every thing is expensive and I have no money to deal with. If I pay medical expenses, I have to stop eating(or pay no rent) or viceversa. I wonder sometimes how you can manage with medical expenses, specially with those new ones.
As far as concerns with AI, I checked on the SE of all four (tamoxifen, arimidex, aromasin, and femara), and the three later have more or less the same symptoms. Remember that they have same mechanisms for combating cancer. I will check on the calcium pathways.
So, good night, ladies. sweet dreams.
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I was having progressively worse muscle and joint pain on Anastrozole plus fatigue, so my onc switched me from it (by ZyGenerics) to Letrozole and it just happened that the Rx I picked up at Walmart was by TEVA. I didn't specify it, but I've read from many here and on the other thread that TEVA brand is better for SEs, so i was pleased to see it. I've only taken it for a couple weeks, but I seem to be sleeping better so my fatigue is better, and my muscle pain seems to have lessened, but so far the joint pain is about the same. MO said it will probably take at least a month to notice any real difference on that front.
-Barbara
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Saw MO today for m 6 mo checkup. Another 8 1/2 years of this stuff. She said it's my choice as my thumbs are so bad, but I don't want to give BC a chance to come back. Going to tough t ou!
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here is what i do to keep SE at a minimum. I am 65 and my biggest is fatigue, so i do yoga, 2xs a week, ata Gildas club. I walk dail, mayb just a mile, i have started the Knox geletin daily in anything liquid, yogurt, jello, or smoothies, i will take a clariton if things like joint act up, but si far thats very minimal. And my letrizole is by teva, so no major complaints,
Oh and one thing i was wondering, body odor for me is terrible, anyone else with that issue, litterally have to wash the armpits 2xs a day. Any suggestions?
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Has anyone opted to stop hormone treatment due to
SE's My onco score was 8. I have a BRCA2 variant of unknown significance so had uterus and ovaries removed in aug. At that time I switched from Tomoxifen (which I had no SE's on) to Femara. I am already having gradually worsening hot flashes and pain/stiffness in my hip joints. It is tolerable at this point, but I do believe there is a point where the SE'a way outweigh the benefit of the meds. Wondering what others think or have done?
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I am really hating this stuff.
Today I got Dex result back and in 12 months have lost 12% of bone. Looks like I have developed osteoarthristiss in my hands, Had no symptoms at all until I started the inhibitor and might be developing lymphodema in my non cancer side. That is on top of the other things that have been popping up.
I finished chemo 11 months ago and was hoping by now to be back to as normal as possible but that is not happening although I am getting out and doing my dog and horse showing. My worry is the long term effects this will have.
KarenAus
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poodlelover...Just to let you know. I refused anti hormone treatment due to potential SE. I already have a debilitating autoimmune disease and was not willing to take anything that would further impact my QOL. Private message me if you want to talk more. Good luck to all.
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Poodlelover, I stopped all meds. My onco type score is 14. The SE were too bothersome and when one SE would get better, another would begin. I'm choosing quality of life in the here and now.
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Bosum - the only real way to know is a scan. The standard of care is to basically stay on it until you have progression somewhere.
>Z<
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