FEMARA
Comments
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That is so great to hear, Cidney. Congratulations on getting well again!
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if you count finishing chemo as an anniversary, mine is tomorrow!
Itook the other 2 AIs with worse SEs. Have been fatigued since chemo ended a year ago. Have taken letrozole 9 months now. The first 6 were the pits. 3 trigger fingers and thumbs, couldn't hold a toothbrush or cut my own food. The last 3 have only been stiff in my legs and feet so I'd say it's about 75-80% better I wonder how many people have things come and go or do you just get used to the SEs and block out the pain to survive
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I finally got an appointment with my MO later this month. I told her nurse that I stopped taking Femara because of the side effects. She said the side effects should be better after a few months on the drug, but what I'm reading here says they get worse, not better. I will talk with the doctor and I may try the drug again when we return from Europe mid-May.
Thank you all very much for your kind words and advice. Reading Stepanie's wonderful, thoughtful, post, I feel like the world's biggest whiner but that's not unusual!
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Oh Neen, I hesitate to post on topics that include earlier stage women, because I don't want to frighten you by what can happen. Nor do I want you to call yourself a whiner!
What we feel and experience is so very real and important for us. Someone else's hangnail may be the biggest owie in their lives, no use comparing themselves to people to "have it worse off." It really doesn't make your pain go away! And learning to work with smaller challenges helps to develop capacities to deal with larger challenges.
My larger point was, if a medication makes me feel really crappy and I can't change that with natural approaches, I'm unlikely to continue it.
At some point, risks must be taken and maybe the risks of treatment are greater than the risks of no treatment.
This is true in the case of adjuvant treatments that minimally reduce risk of cancer recurrence, while majorly impacting QOL (quality of life).
Even at Stage IV, there are many treatments that just aren't worth it for me.
Not all of us pursue more aggressive and toxic treatments as our cancer becomes more aggressive and progresses.
Neen, keep on sharing what's real for you. It's important to "lean into" others for support as you develop your capacities to live with challenges - whether treatment choices or fear of cancer recurrence.
You are sorting this out for yourself and finding what will work for you. We are here to support you.
warmest wishes, Stephanie
P.S. I decided to stay on femara for now because it does help with my lung/pleural mets and isn't negatively impacting my QOL. I may choose differently if I or conditions change.
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As posted my SEs are less than the first 6 months. It's totally individual response andchoice
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Chloesmom Can I ask if your trigger finger and hand problems went away? Or if you needed surgical intervention?
Has Anyone tried Phytoestrogens like Soy or flax to help with the joint pain? I am thinking it is because of extreme loss of estrogen and a small amount of soymilk and flaxseed might give me back my quality of life and allow me to stay on Femara. I am not sure if anyone has every researched this as an option?I am desperate as my hands have extreme joint pain. I have trigger finger in three fingers and am developing CTS feeling in my right hand and De Quervain's Tendinosis feeling in my left hand. I want to stay on Femara but I had a Oophrectomy and started AI. It is going to put me on disability and I am only 42 years old. I need my hands to work.
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Neen, It depends if your tumor was highly estrogen sensitive.
For me side effects increased the first 3 months, then have decreased a bit since then.
Stephanie, Thanks for sharing your story.
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The trigger thumbs needed injections and wearing soft hand splints for a bit. The finger got better on own
I stay far away from soy because it gave me fibrosiistic breast flare ups when I had them
Turmeric seems to be helping my pains.
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Thank you for your thoughtful and informative post. Sharing these sorts of things helps all of us think through our personal choices in important ways. I wish you the best as you journey forward.
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I see there has been lots of discussion of generics on here. I'm going to add my problem and apologies if it's been addressed above.
I've taken letrozole since June 2012. Been thru a couple of different manufacturers in that time, Sun Pharma and Apotex and maybe one other. Somehow I lucked onto Roxane brand and have taken it for a couple of years at least. Per Daily Med it has only 6 fillers. My joint aches have lessened esp. since 2013 when I had to go to PT for my shoulders. I do think sticking with this one brand has helped.
So last month my grocery pharmacy had some difficulty getting the Roxane brand. This month flat out tells me cannot get it from the manufacturer. I agreed to accept the Teva brand but good golly I think it has 12-13 fillers (waiting to be picked up which is not going to happen). CVS tells me the same thing. Called small local drugstore which says they can get it and have already gotten it in the space of a couple of hours. Not sure what it going on. Have great insurance so price is not a problem, they have to accept the negotiated price. The only medication of 6 that I'm on that I really care about sticking with one brand. Anyone else finding this problem?
I do not see why this drug needs coloring and 3 of the fillers in the Teva brand are coloring agents
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luvmygoats, CVS in my area will only order the Accord brand. It does not have all that many fillers if memory serves, but I wanted to try another brand for my second bottle in case it was better for my joints and they would not/could not accommodate me.
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Walgreens carried Accord. I asked for Teva or Roxane based on the info from this thread. They were able to order Teva. I have been on it since mid Feb. So far so good for me. I say if you find one with no problems for you, stay on it!
I have achey hands and legs when I get up but as soon as I move around it goes away. I'm lucky, I know.
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MY WIFE IS ON FEMERA SINCE LAST 15 DAYS AND SHE DAILY HAS A GLASS OF POMEGRENATE JUICE DAILY TO INCREASE HEMOGLOBIN
I WOULD LIKE TO KNOW IF YOU ALL CAN GUIDE ME IF ONE CAN TAKE POMEGRENATE WHILE ON FEMERA ?
DOES POMEGRENATE DECREASE THE EFFICACY OF FEMERA?
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It has been awhile since I have posted. I have been cancer free for eight years. every day I think God for helping me get thru this.
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Congratulations Nanna!...I wish you many many more years of being cancer free
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I’ve read of some studies that recommend against pomegranate when on Femara (but they also said to avoid cruciferous veggies, thyme, chamomile, garlic and cloves too, so I’m skeptical). The one food all sources agree your wife (and all of us on Femara) MUST avoid is grapefruit--whether whole or juice. (Grapefruit-flavored stuff is okay). It interacts badly with many drugs--lowers levels of or blocks some, and dangerously increases levels of others such as antihypertensives and other heart drugs. (And the antihistamine Seldane was pulled off the market after taking it with grapefruit juice caused several deaths). Dark chocolate, egg yolks, dark green leafies, all raise hemoglobin if she’s avoiding red meat. Never heard of pomegranate having any benefits other than as an antioxidant or immune-booster. AFAIK, it’s not a source of iron, which is the way to increase hemoglobin.
I would stay away from phytoestrogens--they might ameliorate the SE’s of Femara but they would also give your tumor cells the estrogen they crave (and of which Femara is depriving them). Some MOs allow topical applications for vaginal irritation, but ingesting estrogens is a very bad idea. You might as well be throwing your Femara in the trash if you do.
I’ve tried three formulations of letrozole thus far: actual Novartis Femara, Teva and Roxane. Roxane by far has been gentlest on me--it has even fewer fillers & dyes than real Femara. Teva is a bit rougher on me than either Femara or Roxane. I refuse to take Accord, Sun or the other formulations chock-full of dyes, metals, talc and other fillers. I’d rather pay through the nose for Femara online via CanadaDrugs. I get my Roxane through my local indie pharmacy--they have sometimes had to get Teva. I am out-of-pocket for ANY letrozole because my cheap-@$$ Medicare Part D insurer insists I “fail” 90 days on anastrozole first. (They also won’t cover the semiannual Prolia shots I’ll need to start to keep my osteopenia from progressing to osteoporosis--so I’ll have to get Zometa infusions which Part B covers. Part D is for pills & shots, Part B is for facility-administered drugs, i.e., I.V. drip. So I’ll be out $10K/yr for Prolia because it has a lower risk of paradoxical hip fracture. Can’t take the orals because of erosive esophagitis....which necessitates taking a PPI....which leaches calcium from the bones....will it go round in circles?). That’s how you know you’re getting old--there are no perfect solutions and absolute benefits any more. Everything is a tradeoff.
And yay, Nanna!
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My MO says grapefruit interacts poorly with many drugs but none that I am taking. i am on letrozole and Prolia.
ChiSandy- sorry to hear about your drug restrictions. Ugh. tganks for the manufacturer info. Am going to try to get Roxane next time.
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Confused as checked w MO on Grapefruit. She sai ok w letrozole just not many of the other meds. Do you have a reference i can discuss w her? We eat it several times a week as the bioflavinoids help my tendency to bruise
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My MO said that grapefruit has a minor interaction with letrozole. He said it's OK to eat them from time to time, but it should not be part of my daily routine. Bummed. I do love grapefruit.
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Does anyone know if letrozole would make existing TMJ worse? I've had TMJ since waking up with it after one of my surgeries. It's gotten markedly more painful over the last couple of months, and I don't know why. I have other aches that started after I began taking Letrozole so I'm wondering if it might make existing pain worse as well.
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I had TMJ from my chest scar. It pulled into my neck and resolved with PT
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Help! I've been on Femara for about 3 and a half years and in the past couple of months my face has been breaking out with acne like symptoms around the chin. I'm 56!
I do suffer from eczema but I'm wondering is the Femara having an effect?
Thanks for the help
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2Tabbies, I have no evidence but I do think letrozole does focus on existing areas of weakness. I had osteo arthritis in my hands before starting Femara but afterwards I had great pain and swelling....cause and effect isn't clear but like you I had generalised pain and then much stronger pain in the areas of weakness
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For those of you suffering from AI induced joint pain, my daughter bought me a device called "Quell" and if you have ever used a "Tens" unit, it is similar in theory. You wear the device (with electrodes) for several hours a day on your upper calf below the knee and the theory is that it will reduce your pain levels via electro therapy. I am wearing it for the first time today (received it yesterday) and after one hour, I do feel a remarkable difference!
I am not naïve enough to not think it could be "wishful thinking" working on my mind, but I was in some awful pain today (it is raining and damp and those days are usually the worst anyway) and now I am walking without a lot of pain...am impressed so far. We shall see how it goes moving forward. I am keeping my fingers crossed. It is not cheap and the electrodes are an added expense of 30 bucks a month but I am desperate! My daughter bought me the unit so now it is a matter of the electro. It has a 60 day guarantee so if it does not work, back it will go! I will keep you posted!!
I have not been paid to talk about this thing so want to make that clear! I am a regular here and now take letrozole (stopped exemestane last year) but wanted to share in case it might help some of you!!
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Chloesmom, I did get PT for my TMJ. It helped, but didn't resolve it. And now it's so much worse. I'm going to the chiropractor tomorrow. She had a move that helped it. If that doesn't work this time, I'll get my PCP to refer me to PT again. So much for trying to save up some sick leave.
Tammy, that makes intuitive sense to me.
Grandma, thanks for the link to the article. I see one of the options for dealing with AIA is switching to Tamoxifen. I switched OFF of Tamoxifen because it made me to depressed. Choose your poison, I guess.
april, let us know how it goes with the Quell device. Right now, I'd have to put it around my head.
That's my worst area of pain. The rest is manageable for now.0 -
the PT for my jaw was only a temporary fix. Had to go to another one who treated the connecting tissue between my chest scar and throat pulling into the nec
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I went out for a walk the other night and did almost 4 miles. This is probably the first time I walked this far at one time in many months. I now ache in all my joints. Is this something that will pass as I continue to exercise or will this happen all the time ? The only time I would feel any joint pain was when I get up from sitting or laying down in the past. Now this. Makes me not want to go back out and walk. Anyone else experience something like this?
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Thinking....I think you may have overdone it. This has certainly happened to me. Are you sure the increase in your discomfort is joint related and not muscular? I'm so sorry that your activity has caused more discomfort, but it is normal when you suddenly increase your activity or change the nature of the activity. The words "baby steps" come to mind.
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you are probably right. Muscle pains. Hips were the worst but it has subsided. Didn't really think about how much I was walking. I was with a friend and we were talking and it just passed so quickly.
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