FEMARA
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Artista, decades ago in my 20s I did phendimetrazine (given by an osteopath who operated a diet-pill-mill). I actually thought that at 5’3” and 137 I was obese. If only I’d let well enough alone! I quit after I was getting involuntary muscle spasms and my hearing kept shutting on & off. After I became a mom, over the years I tried Redux (worked wonderfully until it was yanked from the market and might have caused a little left ventricular thickening, though my doctors don’t think it’s enough to be considered clinically significant), Meridia (which made my hypertension so uncontrollable I kept getting rejected for blood donation even when not anemic), and eventually Wellbutrin (depression runs in the family and I had PPD until my son was 1-1/2). Still on that for craving-control, though it’s not as effective now that I’m on Letrozole. There’s a new combo drug—a lower dose of generic Wellbutrin combined with a form of naloxone, aka Narcan (thought to occupy endorphin receptors that normally crave food or opiate rewards, but supposedly not enough to induce euphoria). My shrink says it doesn’t have enough bupropion and that it is still a form of opioid. My guess is that a stimulant like Phentermine would jack up my blood pressure and/or increase the risk of arrhythmia (having had 3 palpitation episodes while taking a Z-Pack, that is now a concern).
Nope—except for perhaps metformin, if the statins I’ll probably need due to letrozole hike my glucose as well—it looks like I’m gonna have to kick it old-school to shed a little more weight.
For your knee OA, have you considered replacements? They changed my life. If I hadn’t had my knees replaced two years before bc, I might be over 250 lbs. by now. There are also “unloader braces” that are custom-fit to shift your weight to the less-damaged side of your knee. Mine bought me a year between tearing my meniscus and my R TKR, and my insurance paid 100%. (Hyaluronic acid shots didn’t do a damn thing other than hurt like hell and drain my wallet—insurance considered them experimental).
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Thanks. I used to work for Dr. Dearborn here in Fremont, CA who does only least invasive hip and knee replacements so I'm very familiar. I used to be the sx coordinator. They have a max bmi of 25 to do what they call elective sx. I'm way more than that. Thankfully stopping letro since last Fri, my joints feel better. Doesn't solve the problem but at least I'm back to status quo with that. I had asked to try Contrave but it has an opioid in it so pcp said no. She ok'd the phentermine after the results of my EKG so I guess it's ok. No rush to start it.
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ChiSandy, what you've said about Type 2 is very interesting to me. Many similarities in my life. I have family members with Type 2 and I had gestational diabetes. I'm very concerned. My fasting glucose level has never been below 100. (They test me every time I have a PET scan, so I have data going back 5 years, every 3 months. Plus various other times. Only twice under 100. I think letrozole is making it worse than other treatments.
Just this week, after I got bloodwork done related to starting Zometa, my nurse mentioned it.
None of my doctors seem interested in discussing ways of helping me control it, except through my own devices. I am very mindful of sugar and exercise as much as I'm able. Any advice?
I miss Wellbutrin. Can't take it with letrozole and my current pain medicine, methadone, the best pain relief I've taken in 5 years
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TarheelMichelle, I don't know who told you you can't take Wellbutrin with letrozole (or any other AI). Tamoxifen, yes—both drugs compete for the same enzymatic pathway. But Wellbutrin is fine with an AI. Both my MO and shrink agree. Not sure what methadone would do to be contraindicated—I took opioids rehabbing after each of my knee replacement surgeries, and stayed on Wellbutrin at the time.
Artista, no disrespect to your former boss, but please get a second opinion on knee replacement surgery. “Minimally-invasive" or partial (unicompartmental) knee replacement surgery is a different animal—patients getting those operations are usually sent home the same day and expected to function with only home or outpatient PT. A high BMI would likely screw up those surgeons' success statistics. But I had conventional open TKR and my BMI at the time of my first one was 37 and my second a year later was 34. (My surgeon advised against simultaneous bilateral because of my age, which is why I spaced the surgeries out over a year). A BMI of 25 is ONE point above ideal…for a healthy woman with no orthopedic issues (which issues might well be impacting ability to exercise and therefore BMI).
Your former boss may be a great surgeon but he is by no means the only one in the greater Bay Area, nor is his specialty the only (nor even necessarily the best) type of knee replacement surgery that is standard-of-care today. (And here in Chicago, those surgeons doing minimally-invasive &/or same-day TKRs tend not only to cherry-pick the youngest and healthiest patients but also—nonetheless—to have higher complication and revision rates).
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Is anyone taking a partial daily dose of Femara? The insert that comes with Femara says the following:
"In postmenopausal patients with advanced breast cancer, daily doses of 0.1 mg to 5 mg Femara (letrozole) suppress plasma concentrations of estradiol, estrone, and estrone sulfate by 75% to 95% from baseline with maximal suppression achieved within two-three days. Suppression is dose-related, with doses of 0.5 mg and higher giving many values of estrone and estrone sulfate that were below the limit of detection in the assays. Estrogen suppression was maintained throughout treatment in all patients treated at 0.5 mg or higher."
If .5mg is 95% effective, why is the standard dose five times that? Will side effects lessen at a lower dose? (I found a table that indicated that for the most part, no.)
I wrote my oncologist who said it was okay to take half a pill every day to try to address side effects.
Is anyone else considering or already doing that?
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How does the bone pain caused by Femara feel like? Can it be on one side or is it in all joints simultaneously? Is the pain sharp or dull?
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To me, bone and joint pain are two different things.
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Can you explain the difference?
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Syringa, since I have both bone and joint pain, I think I can speak to this. The pain in my joints (knees, fingers) is when I move them after not doing so for a long period of time (for example sitting too long and then getting up to walk) but the bone pain is a dull ache that knows no rhyme of reason. My bones in my legs hurt from my hips to my toes and it does move around (which I find strange as well) and reacts to weather changes as well. When it is damp, the bone pain is the worst (and so is the joint pain) but sunny warm days find me feeling a bit better. Hope this helps!
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~Syringa~
I am trying to figure that out myself. I had muscle & joint pain in my knees back in January. I started walking as an exercise regimen, so I thought that was why I was hurting. But It's now three months later and I should be past the 'exercise shock'. The muscle pain is gone, but the joint pain has gotten worse. It doesn't hurt when I walk (or stretch), but my knees really hurt when I lower myself into a sitting position or try to get up. The pain is sharp. My fingers started to hurt early this month. I had to take off my wedding rings because that finger on my left hand swelled up. I also have trouble bending the middle finger of my right hand. All of my fingers hurt to some extent. The pain can be sharp and dull. I have had issues with stiffness and figured I'd have arthritis at some point, but I expected it to be gradual. This kind of blew up quickly, so I am not blaming the letrozole completely, but I do think it has aggravated it. My PCP has put me on an OTC arthritis-pain medication (acetaminophen; extended-release; 650mg twice a day), but it doesn't help much, especially at night. I will be seeing my MO in 12 days and will ask him about pain relief. I have heard that magnesium, extra D3 and even antihistamines may help. I can't speak to bone pain - mine is joint: fingers, knees & sometimes my left hip.
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So, it is possible to have one side pain from Femara, isn't it? I have degenerative changes in my hip joints and lower back and I think Femara worsens only those parts, but I am not sure if this is the Femara SEs or mets. I have sharp pain when I bend over.
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Windingshores- thank you for your post. I went to a research on oncologist at an NCI cancer center who couldn't answer that question... you found the answer in the packaging for the drug.
I am stage IV. I am going to play it safe and stay on 2.5mg for at least 2 years, difficult as it is. But I'll keep this info in my back pocket for later.
I think dropping the dose is something people should discuss with their doctor if the side effects are tough. Especially early stage.
None of my oncs are aware of this. I am going to find the info online and post it so people can bring it with them. Will search tonight.
Thanks Wind.
Z
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I just got my letrozole refilled at Sam's Club. Last time they gave me Teva, and this time they gave me accord. The accord pills are brown, and when I opened up the bottle, I just knew they were not teva. Has anybody here been able to get teva lately? BTW- The only se I have been having is mild joint and bone pain. My hair is doing just fine.
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I am happy to report that after 1 year on exemestane and a half year on letrozole, my MO is transitioning me to Tamoxifen. In two weeks (after six weeks off AIs), I will make the switch.
In the meantime, I am taking PT for a painful knee, walking in the pool, and aiming to walk some every day. Doesn't sound like much, but I have become crippled the last few months and unable to walk my dogs more than one block.
It is such a rush to hope for a return to myself.
BTW, I asked him about Cymbalta, and he said he didn't see a conflict with Tamoxifen--that the drug is good for anxiety, depression, and pain. I will still get a prolia shot in June.
After life being unbearable so long, I'm so willing to give this a try. Maybe Cymbalta will reduce the SERM effectiveness some, but if I can gain some BC protection from Tamoxifen, get pain relief, reduce depression, and maybe get to dance and garden again, I will at least have a chance to be the old me. It is hard not to feel like I'm in a card game, with percentages and chances to win for each card played. On AIs, I was willing to die. Now I want to truly win with a treatment I can embrace.
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Just to be safe though since my Celexa has an effect on Tamox, take Cymbalta at different time than Tamox. I'm doing Celexa in am and Tamox in evening. Just to be safe. I already should be on AIs beyond the 5 weeks I tried Letro so I don't want to possibly compromise this.
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Ozoner -- I can hear the relief and happiness in your voice. Your plan makes great sense and I am praying for you. Yay!!!! Your future is bright! Many blessings to you.
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ozoner- considering that switch as well. Please let us know how you do! Hope for the best for you!
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ozoner smart move. Keep us posted.
Z
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Folks,
As mentioned in an earlier post I am moving from Arimidex to Letrozole. I picked up the perscription yesterday from Kaiser and asked the pharmacist if I could get Teva brand. He told me Kaiser gets what is negotiated through their contract and the supplier is Accord. When I asked if they could order Teva he advised they could not. I am going to give Accord a try but am wondering if any of you folks have Kaiser and are able to get Teva brand..
Ronnie
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I am a bit confused regarding the TEVA and ACCORD brands of letrozole. Is it the fillers? I have been on letrozole since late July of last year and I have always gotten the TEVA. You all seem able to have chosen your pharmacy. I was not given that option. My letrozole is mailed to me every month from the pharmacy that is part of the oncology practice I go to. When I asked my MO if I could use my own pharmacy where all my other meds are dispensed, he said he preferred to use the practice's pharmacy. He was emphatic, so I didn't push it.
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Hi Velvet Puppy- Yes Accord is supposed to have more fillers. I wonder if your MO makes some money off of your prescription, and that is why he does not want you to change pharmacies? I went to a podiatrist last summer, and the doctor took a sample from one of my fungus toenails, and decided that I needed to put this stuff on my nails that he charged $40 a bottle for, and I could not purchase it anywhere else, and my medicare part D would not cover it, and a bottle lasts you approximately one month. I found out that they do carry it on Amazon, but it is the same price there.
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peaches1, I am happy to hear that you aren't experiencing debilitating SEs from this stuff. Femara is in my treatment plan and while I've gone along with everything so far, I have seriously been considering refusing it, after reading here of all the horror people seem to experience. Maybe I'll have a go at it and just wait and see.
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windingshore, thanks for the info. I did a lot of research on dosing but wasn't able to find much. I'm not on letrozole, was on exemstane for 4 months, but due to severe side effects had to switch back to tamoxifen (& Zol). I had severe and random lightheadedness which was getting dangerous (well, not safe when driving) and more frequent. Not to mention that it took away my ability to do regular exercise and be my active self. My MO dismissed them as not related to AI (well, why then it all gradually disappeared after the switch?) but then commented that it's possible that the Zol & AI combo is too much for my body and it might be depleting too much estrogen. I did say that I want to give the other two AIs a try later.
I have a sneaking suspicion that full does might be too much for me, but I'm stage 3 and it's still too early, so not brave enough to switch to reduced does yet, not to mention that my MO is conservative.
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Peaches, Gordon's Pharmacy (the little indie in Andersonville with the kosher deli in front that had always been able to order me even Teva or Roxane) filled my 'scrip with Accord this time. Haven't noticed any differences other than muscle soreness—but that correlates directly to aftereffects of the personal training sessions (mostly weights in some form or another) I started three weeks ago.
Yes, the differences between generic mfrs. (as well as the original branded Novartis Femara) are due to dyes & fillers, as well as to the fact that a generic, by law, can have as little as 75% of the active ingredient of the branded drug. Could be that Accord has more letrozole in it than do Roxane or Teva. And as to dyes and fillers, not everyone has sensitivities or allergies to the same ones (nor to any at all). It's a crapshoot. You can't know till it happens.
For recent-onset knee pain, it's probably OA; it's a good idea to see an orthopedist for a baseline X-ray to check for degenerative changes—worn cartilage, bone spurs—to assess the need for therapies such as shots (cortisone or lubricating), “offloader" bracing (shifting your weight to the less worn side of the knee) and arthroplasty (knee replacement surgery). If sudden onset and sharp, you might have torn your meniscus (the cushion-shaped cartilage in your knee joint). MRI can confirm the diagnosis, but most orthopedists can diagnose it by manipulating your knee and listening to your description of the pain and its onset. Arthroscopic surgery (debridement or—if you're “lucky" enough to have torn the part of the meniscus with a blood supply, repair by suture) followed by PT used to be standard-of-care for meniscus tears; but studies have shown that PT and pain management alone are just as effective…until such time as you kneed a full replacement. (Take it from someone who's torn an ACL, R & L meniscus surgeries—L was sutured, R 17 yrs later debrided-- and had both knees replaced).
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~peaches1~
I hadn't thought about my MO getting a "kick back" on my meds. It can't be very much if he is because I only pay $12 for a thirty day supply. I don't know what my insurance pays. I only know that they will only pay for generic unless I have tried ALL available generic forms of a drug for a minimum of 3 months and cannot tolerate any of them. Then & only then will they consider a name brand.
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I found the info on dosing of Femara two years ago, in the actual insert that comes with the drug. I posted the link above, in the first post on this subject.
A mere .5mg. 20% of the usual dose, was found to be effective. I assume, therefore, that there is no benefit to using 2.5 versus .5mg because estrogen level was "undetectable" at the lower dose. I mean you can't subtract from zero. So why is the usual dose 2.5mg?
My oncologist says it was fine to take half and that she is glad I am taking it, period. She said some patients with side effects like joint pain ask her if they can take less, or alternate days.
I have no idea if this would help bones, fatigue or other side effects.
I am still taking the 2.5mg and it's been two years. I take brand name. I am seriously considering reducing down to 1.25mg which is still a lot higher than that .5.
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BosumBlues, I do not remember when the pain started, but most probably I had it last year and even before the cancer journey (I did not pay attention to pains before the diagnosis
). It was felt when bending in certain positions. But my pains worsened after started Femara in June last year. I had a bone scan last November because of neck pain (I'd had it for 3-4 months) and the result was nothing in the neck and degenerative changes in my hip joints. As soon as I'd learnt that there was nothing in my neck, the pain there went away. I think I manage somehow to exaggerate the pain by thinking about it. After seeing there are degenerative changes in my hips, I started thinking about them. Then I read that sometimes bone scan can miss cancer mets and the pain became permanent. I feel the sharp pain when I bend over, but for the rest of the time I feel tension and dull sensation in my right hip and lower back. Actually since I've been in menopause for 1 1/2, it's possible that these are symptoms of it. I am just 33 and I do not know how I'll live for the next 50 years having such pains if they are from menopause and will worsen. The other problem is that my profession requires sitting at a desk for 9 hours/day and it additionally worsens everything. I read that acupuncture may help for such symptoms. I had 8 procedures of it and I I think somehow it caused the pain that I feel now permanently (the dull one and the tension), because the pain is the same, as that felt from the needles during the procedure and started right after the 3rd procedure. It is felt on the same places where I felt it during the procedure.
Anyway, most probably I'll tell my onc and see if he'll order new scans. I'll live with the fear of mets for the rest of my life and Femara pains help me pretty well with this!
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Syringa, the Femara pain is joint pain, for me. Estrogen lubricates joints, so just as metal hinges get creaky, so do our joints. My hip and shoulder sockets hurt the worst. Carrying a very light handbag on my shoulder hurts. I have a lot of bone tumors and it's very easy for me to distinguish my cancer pain from Femara-induced pain. Also, cancer pain seems a lot easier to remedy with opioids.
ChiSandy, My previous post had an extraneous comma that made it appear as if letrozole was the issue. It's the methadone for pain that I was told is incompatible with Wellbutrin. I have taken Wellbutrin with AIs before (when I was first Stage IV diagnosed, with Aromasin). And I have taken many other opioids with Wellbutrin. When I tried Cymbalta for help with AI-related joint pain, it wasn't helping much, but my mood was definitely better, so once I completed the horrible Cymbalta withdrawal, I decided going back on Wellbutrin might be a good idea.
However ... now that you mention it, it wasn't my MO or my pain doctor who told me about the methadone-Wellbutrin interaction. It was a nurse who I do not know well, and who responds to me when I message my MO, and whose instructions have been wrong more than once. Harrumph. Oh, do not let me find out that she told me incorrectly!! Grrrrr .... I bear very long, hard grudges against doctors who have caused me heartache: the RO who assured me my spinal radiation wouldn't prevent me from running; the doctor whose removal of my tiny skin mets caused a huge, ugly scar, and many more.
I'm calling my pharmacist today (Sunday). I might be fuming right now, but you may have helped me immensely. (As you help so many of us here.) For that, I am VERY GRATEFUL!!! I'll let you know.
BTW, for all Femara users, I continue to be amazed at my reduction in joint pain with Femara by taking Claritin daily. If I miss just one dose of Claritin, the joint pain comes back. Claritin doesn't help the crushing fatigue, though. Every mild exercise session causes really sore bones the next day. I may have to discontinue Femara because it hurts meso much. The Ritalin for fatigue and Claritin for joint pain have been quite successful, but the treatment continues to mess with my QOL.
I'm wishing all my Femara sisters a decent day.
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Claratin works, but so does loratadine, the generic form, for pennies a pill. That helps with another side effect of cancer ... COST!!!
>Z<
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Well, I don't like the side effects of Femera, but will continue taking it for as long as I can
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