FEMARA
Comments
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Can’t be just the chemo, as many of us who didn’t have chemo still got the same screwed-up glucose & lipids after enough time on letrozole.
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Interesting but still not convinced. 88 women (began with 111) does not a conclusion make, at least not for me.
https://www.statnews.com/2016/08/25/side-effects-hormone-drugs-breast-cancer-psychosomatic/
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Hi, folks thought some may want to come and join the discussion. The mods did take action and change the title of the Attitude main board study (same study as April's link). The BCO medical Advisor is going to post a statement. The Mods have posted what that statement will look like. You can find it in their response.
We have a dialogue going.
I think the importance of this is that we can have an impact on discrediting this article not just here, but in the "domain"(world). This very irresponsible study, is out in the world now. It will be quoted forever by docs, church members, nurses, family, and friends. It's being used in all manner of publications going out to the public. It will be cited in many teaching pages and incorporated into other studies. It will be causing trouble for years.
If you think it's an exaggeration. Think margarine. It was promulgated as a better alternative to butter by the American Heart Association in the 1970's. Then the problem of trans-fatty acids was identified. It was known in the research/ medical community to be a problem for years before it was corrected to the public. The research in the 70's wasn't solid, yet caused decades of problems. There are many more that I could cite, but don't want to belabor the point.
So, join us
Not sure how we will change the "domain", but it's a work in progresshttps://community.breastcancer.org/forum/73/topics/847566?page=1
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How many of you have had hair loss with Femara? And was it significant?
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Owens69.. I am experiencing hair thinning. I have been on Letrozole since Feb 2015 and just the past few months have been noticing this. Not sure what to do about it. Anyone else have this issue and can recommend what to do?
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I have heard that some women use Rogaine shampoo? I have lots of baby fine hair and have found more in my brush but have not had a major problem with it. I have enough of the other side effects so happy not to have this issue, at least so far. (9 months in to this drug after 2+ years on Aromasin) We shall see if I get lucky and escape this one. After all, I was doing great on letrozole until about 4-5 months in and then BAM! The same crap I had with exemestane only just a tad better on my upper body. I hate these drugs. I never realized just how important that post menopausal little bit of estrogen was to my well being until this stuff. Ugh!
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april485...what side effects do you have? I have the normal joint pain and stiffness. But then 6 months ago increase in weight and cholesterol.
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Weight gain, brain fog, severe leg pain both bone and joints. Drenching night sweats and sometimes, during the slightest physical activity, drenching day sweats. My cholesterol went up but is still at normal levels according to my doctor and my hdl/ldl ratio was good. I just feel like I always have a slight case of the flu on most days. I get tired easily as well although that could be age related but I am only 61, not 81 or 91 which is how I feel.
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anyone here experience anger issues being on these A1 inhibitors? Seems it started when i started taking them, but no one has ever mentioned this, so i am wondering if it is just me, or maybe a side effect that has never been brought up?
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I am a bit more short tempered with hubby, but only when I am in a lot of pain or I am dripping sweat and he turns off the AC claiming he is cold...then I can bite for sure! But, overall, I don't find myself angrier with the exception of above and it is very rare to be honest. But, it is still there because before all of this, I was much kinder to my poor husband who is an awesome and helpful person. He does not deserve any of what I hand out when I am like this and I always apologize after the fact.
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Jersey Girl and April, Well, I think I should chime in here and say that I am a different person with anger and irritability. It's awful. I'm awful. I try to curb it the best I can so my poor partner doesn't have to deal with it. He gets very upset with me because he perceives me as being out of control. But by the time I realise what's happened I have lost my temper over something stupid.
I am off my femara at the moment but I still have terrible irritability issues and my hot flushes are the worst they've ever been. We're trying to get to the bottom of it with testing (thyroid was off) but I need to wait to get an appointment with a gynaecologist to try and find some help. Before my partner leaves me
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I've been on letrozole 4 years and almost 6 months. 6 months, 12 days to go. My onco asked me at last visit, why I keep such close track of how much longer I have to go. I told him, I'm tired of feeling rotten and that keeping track of and reassuring myself that there is an end to this treatment is what keeps me going. It's tough though, but I'm convinced it's necessary to lower risk of recurrence. I have all the usual side effects: hot flashes, joint pain, hair thinning, headaches. The pain is the hardest to deal with. It has become more widespread. Was just the knees, now every joint is affected. My thumbs have worsened to the point I have a hard time holding things. I feel poisoned. I can hardly wait to get off of this drug. By the way, these side effects are real. They're not all in our head or because we expected it.
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Grandmav...do the side effects get worse as you are on it longer? I have been on it for 1 1/2 years and wondering if the thinning of the hair and joint pain gets worse over time?
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Thinking - My thinning hair got steadily worse for first couple years with gobs of hair in my brush then it seemed to let up and has remained about the same since. Still a lot of hair in brush, but have had some regrowth. It remains much thinner then before letrozole. My knee pain seemed to peak at about 9 months in, was walking with a cane, it was so bad, then that seemed to improve over the next few months and was more tolerable and no longer needed a cane. Since then the knee pain has worsened at times and gotten better at times, but right now it is again worsening. My thumbs were worse the first year and then nearly went away for the next few years and now is back with a vengeance. The rest of the joints, (hips, ankles, toes,) have seemed to worsen this last 6 months, however, my doctor stopped my ibuprofen because my kidneys were starting to be affected and Tylenol does little for this pain. Headaches every morning are no worse, no better. Hot flashes let up some after first year and now it's more like I just feel hotter then most people seem to be. Not really flashing, just ongoing. My husband and I compromised on the thermostat. We leave it at 72 degrees and I have fans on me wearing shorts and tank tops and he wears sweaters and bundles up on the couch with a blanket. It's hilarious at times. My son's mother-in-law is two years ahead of me with her diagnosis and has been off letrozole a year. Her recovery has been slow, but she is feeling better. Because I'm now 62 I wonder how much is old age and how much is the drug.
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GrandmaV... I am 60 so I often wonder if it's just age, arthritis....I do know that my high cholesterol and weight gain are from the Letrozole and the osteoporosis in my spine as well. The thinning of my hair just started recently and was hoping it would stop at some point. Thanks for the info!!
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I can so relate. I'm 62 and have been on Letrozole for 14 months. I had arthritis in my knees and lower back before BC dx. My bone scan showed degenerative disease in my feet, knees, lower back, upper back, shoulders and neck.....I'm doomed!! 😳😉. The pain in my lower back seems to have worsened since starting Letrozole, or maybe I'm just older....when I mentioned it to my MO, she just reminded me of my bone scan...sigh. My hands/fingers are very stiff, particularly upon waking but my grip is not strong at any time, I definitely feel that is Letrozole related,
GrandmaV, I hope your symptoms improve once you come off it. I have a long way to go yet and who knows what they'll be suggesting three and a half years from now, but truthfully I'm afraid to come off it. My friend was off it for almost 3 years when they found her BC had metastesized - she was Stage 3C when dx'd 8 years earlier. She also had kidney cancer, a second primary, which was only found because of her initial BC dx. I try not to compare but sometimes it's hard
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I'm trying this for pseudoarthritis from letrozole.
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Hi all,
I hadn't been on BCO in a year until I had a question the other day - I got such helpful and generous responses, I thought I would check back in with my friends on Femara. I have been on it for about 2.5 years now. I am doing OK on it so I thought I'd share what might be helping (who really knows, right?).
I take 2 Omega-3 Alaska salmon oil gel tablets daily (sorry, I should check the dose but don't want to wake my kid going down the creaky stairs to check...but the Alaska part is key, people! please support our sustainable fisheries!). I read a clinical study a year or so ago that found some statistical improvement in side effects specifically with women on AIs. Try it - no guarantees but I think it's helping me. I started taking it after getting weird bone pain in the tops of my feet, and have had no issues with bone pain since.
I feel like my brain ain't what it used to be, nor is my body, but that could be aging, it could be attitude, it could be chemo-brain, it could be anything.... I am a big believer in mind over matter and doing my best to quash the doubt and self-pity. The busier I am with work and life, the better, as I have less time to think about the hateful drug regimen and the unknowns that lie ahead.
Love and light from the north country.
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Anyone still have side effects from letrozole after five years? I still do...especially hot flashes then chills...and so many other uncomfortable ones...I thought after this amount of time they would ease, although some have, but some are just beginning....old age or this drug?
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i started femara this pasr March, letrozole the generic, i have fewer side effects but have notived some BP elevation, and possible sugar issues, having blood work done be doctor, but the new protocol is A1 for longer than 5 years. I am 65 now, no major SE but the longer i am on this, i am getting nervous. Dr says that 10 years might be the new range after BC . At 75 i am sure i will be so done, unless a new miracle drug comes out. I think i am gonna start a journal for side effects just in case. When blood work comes back, will go over with the family Dr and then MO dr. I have had 3 prolia shots so far for osteoporosis, next one is due September 26. No side effects with that drug?
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i have been on letrozole one year on December. Will get my first shot of Prolia in November. Worst side effect so far is pins and needles in belly and wrists in the middle of the night and hair thinning. I am 66, diagnosed with ilc at 65. Very thankful I dodged the chemo and radiation bullets. All things considered, I am feeling fabulous- strong and healthy. Resumed my hiking and kayaking activities within 6 weeks of surgeries. Hang in there, lovely ladies. Enjoy every moment. Xo
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Stellamaris...just curious. I had a diagnosis similar to yours..but had heavy duty chemo...maybe we know more now? Just wondering, did you have a low oncotype score..or oth reason you wernt given chemo or radiation? Gee, you did dodge those bullets...
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Theresanne - I also had a large ILC tumor with no lymph node involvement. My MO did not recommend chemo either, based on the high % ER/PR + and low Ki67. I insisted on getting Oncotype dx (doctor did not want to order it, saying that it would not tell him anything he did not already know). The score came back low, which made me feel better.
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My oncologist had the same response to the oncotype test. I just trusted her judgement...did not ask as many questions as I should have or known at the time....I was in shock really.. Had TAC which was tough but doable. After chemo, My oncologists and radiologists said radiation would be overkill. ( node negative) And, I still worry about not having that...but, at the time, did not argue that point...just trusted them since the cancer was in the left side (heart). So, I have been of femara goung on 5 yrs. this January. I pray and worry all the time...
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Jerseygirl, Stellamaris--I see that like me you are of Medicare age. (I'm 65). How are you managing to get Prolia? My MO tried and failed to get prior auth for it--BCBS' Part B supplement refused to cover it as a “treatment," saying that because it is injectable (and I could theoretically shoot it myself) it is a “drug" and therefore subject to Part D. But my Part D carrier (Humana Enhanced) refused to cover it because of the price ($5K/shot); and that Zometa--infused via I.V. and covered as a “treatment" under Part B--and oral bisphosphonates were cheaper and “effective enough." I ended up getting the Zometa--stuck 5 times before they could get an I.V. started and 4 days' worth of faux-flu and fever. I couldn't take the orals, as I have GERD. My PCP is livid--he was against bisphosphonates anyway because of potentially devastating SE's (horizontal thighbone fractures, osteonecrosis of the jaw). Because of my GERD, my miserable veins and the awful aftereffects of Zometa, he is willing to see if he can write a more effective prior auth letter. (He's been treating me for years and knows all my medical problems, whereas my MO has treated me for less than a year and didn't believe me when I told her what a “difficult stick" I am).
I fear that because I am in IL (Cook County, to boot) BCBS may be less generous to me than it is in other states, where apparently Prolia is considered a “treatment" if given at a cancer clinic or MO's office, even though it is a shot and not an infusion. Humana is being snippy and cheaping out--deeming many generics to be “preferred brand" drugs. I looked at the formulary, and generic letrozole is considered a "Tier 3 generic." But mine, despite being generic and from a preferred pharmacy, is deemed a “non-preferred brand name drug" and not covered AT ALL. Why? Because I specified I wanted only Teva or Roxane, but they will cover only the cheapest generic mfrs. available via luck-of-the-draw within Cook County. So if I am willing to put up with the miserable SE's of Accord or Sun, Humana will pay. For $30/mo. (even if it doesn't count among the “officially recognized" out-of-pocket costs that'd get me out of the donut hole before Dec. 31), I am not willing to put my well-being in jeopardy. (I am terrified of getting diagnosed some day with Stage IV—Ibrance—which MSRP is $9000 a month--isn't covered either and you can't use discount coupons if you're on Medicare at all—even if you somehow can get private drug insurance instead of Part D or you are going 100% out of pocket).
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ChiSandy. I have the same issue with Prolia. My insurance will allow but it is a non preferred therefore the negotiated rate is almost the same as the cost of the drug. I have a $3000 deductible then s 50% co insurance for another $3650 before my insurance goes to100%. I would have to pay that up front for that injection in the new year. That's even if we have the same insurance next year. As far as the Fermara. I take accord. I do have aches and pains that make me wonder and worry all time high cholesterol and osteoporosis and hair thinning. Do the other brands not cause. I go to Walgreens. Where can I get them the othr
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Sandy, I'm also in Illnois (Dupage cty) on a BCBS suppl. but I have Silverscript for my Part D. Since it's coming up on the end of the year, you might be able to switch drug companies then. I'm one of the "fortunate" ones on Ibrance and also generic Femara. Because of the Ibrance they send my drugs from a specialty pharmacy in Florida. The letrozol is most times Teva brand, I had a couple of months when they sent Apotex but then they sent Teva again. Maybe Silverscript will be more generous with the Prolia.
I hope you never need the Ibrance but you should know there are some charities (501c) giving grants to help pay for the drugs. My costs have only been $2.95 mo for the Letrozole so far. I feel very blessed to have gotten the help. The pharmacy did the paperwork for it without my even being aware that this grant money existed. Like you I was terrified when I heard the cost of the Ibrance. Without the grant, the copay would have been about $3500.00 /mo. Until I was through the donut hole. Then it drops to about $500./mo. Now I just have to pray it keeps working and there's more grant money next year. Who knows what next year will bring, all our medical costs will probably go up again
Good luck!
Faith (in the future)
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i go next week for prolia, i hope. Turned 65 in march, the other prolia was covered so i do get it as part of my cancer trmt, so i guess?.?? At the cancer treatment facility, and authorized by the MO. I got a shot in april, no problem, but i do have secondary insurance. I really have not seen any bills? Chi sandy, if the drs order it, not sure how medicare can deny it? Cancer is a whole different ball game, or it should be, since its not cureable and they know the A1 drugs are as strong as chemo. I have had 5 fractures already in the past 2 years. Fight it!
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Hi, I just have all the symptoms you have described, thinning and falling hair, problems with my joints. In the X rays it shows I have arthritis in my knees but now that you say so, it could be the result of the AI I am taking for several months. Thank you for such an insight.
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Theresanne, my oncotype score was 27, however, my MO did not want to go the chemo route, because research has shown that it is not effective against ILC. The oncotype result was that chemo would only have improved my chances against recurrence by 3%. Not worth the side effects in his opinion, and I concurred. I did not have radiation because ultimately I had to have a mastectomy, due to never achieving clean margins. Chisandy, I have applied for pre authorization from my employer health insurance. Still waiting for a response, but may have a chance as I also have rheumatoid arthritis. If it is not approved, I will pay for it. It is 800$ a shot here in Canada, but since I have osteoporosis, I don't have a choice IMO.
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