FEMARA
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Sandy - I think that twice a week with a trainer can be good in the beginning. Once or twice a month may work after that. This is so important and you are on the right track ...
>Z<
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I'm here to vent, and pass along a couple tips.
DAMN FEMARA!!
For 3 years, for the 2nd time in my life, I was a trim size 6. Ate whatever I wanted. Started Femara. Gained 15 POUNDS in two months. I used to run, but can't anymore. Upper spine radiation destroyed some nerve endings somewhere around my windpipe, and expelling air is hard. (Pulmonologists and ENTs tell me sorry, tough luck.) . Hard to catch my breath. Can't run. Can't lose weight.
HOWEVER ... I've been taking Femara off and on. And I've noticed something about my hair loss. If I start with a pill a day, my hair falls out fast and furious. If I start by taking a pill every other day, for a month, then two days on, one day off for a month, the hair loss is minimal. I still wear a halo hairpiece for my thinning hair, but I have more hair growing and less scalp tenderness.
I've also seen a MAJOR decrease in joint pain by taking a daily Claritin. I saw that tip somewhere on here. Thankful. It works for me. I'm still hurting when I "exercise" (Walking 3-4 miles.) But everyday walking around isn't as hurtful.
I also bought a body pillow. Rather than trying to prop my knees/ankles or other sore joints under pillows when I sleep, it's easier to lean onto one pillow. I keep the pillow on the other side from my husband, so he won't feel isolated. It looks like there are 3 people in the bed, haha.
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I take claritin too. Seems to help joint pain but I actually need to take it for allergies.
Letrozol s@#ks for many of us. Does for me.
>Z<
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Tonight I'm going back to my Zyrtec since my only post-Prolia pain is from sore muscles (which I brought on myself Friday by not crying “UNCLE!" soon enough to the trainer). Think I'll take a warm (not hot) juniper-oil bath tonight—I remember it seemed to help when I was in my 30s and had a rough go at the gym the day before. And I’ll slather on some Traumeel gel (mostly arnica).
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There is a payoff for that pain ... which is more than I can say for a lot of other pain I experience these days.
>Z<
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Gracie, for fatigue, some doctors prescribe amphetamines. I've been hanging on to the pill bottle from the prescription my doctor gave me for almost six months. Starting taking it this week. I need more than 4 hours of energy a day.
And honestly, the weight loss from amphetaminesis the side effect I'm hoping to get.
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C’mon, Adderall!!! (Not very likely, given my age and family cardiovascular history, but a gal can dream). Sheepishly admitting I never threw out the half bottle of Redux remaining after it was pulled from the market—that stuff WORKED, without any buzz. I still remember what the peri-op doc assigned to me before & after my first knee replacement said when I told her I missed Vioxx: that as soon as she suspected it’d be yanked off the market, she bought 2000 of them to hoard as a hedge against arthritis. They did bring back Celebrex, though.
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When I complained of fatigue during rads, my RO told me to nap. He didn't want me on any additional meds. I was taken off the cholesterol medication before surgery, as well as all vitamin supplements. He told me to stay off until after treatment was finished. Now, I realize many of you ladies have to work and so did I. I was planning an early retirement, but was advised to wait. A supervisor told me that retiring while sick wasn't a good idea. I needed a reason to get well and that was my job - it gave me something to come back to. Anyway, I tried to work while on radiation, but was exhausted. My RO wanted me to take sick time and stay home to rest and much as possible. I had a lot of sick time accrued plus I also belonged to a sick pool, so I was able to take a full 14 weeks of sick time at full pay. I went back to work three days after rads.
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What's a better word for amphetamines? I can imagine my onc thinking I may want to become a druggie and won't go for it. I also need to lose a ton of weight. It keeps coming on!
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I was taken off Femara three weeks ago for reasons of fatigue, muscle and joint pain, swelling and occasional instability. My left knee has been strained and shows a small amount of arthritis and some fluid, and then there is popping. Sometimes I feel fine and then I can barely walk. I'm compensating for the painful knee and now feel like I'm thrown totally out of whack.
Any of this could be from other causes, but I went from walking my dogs every day, doing Zumba Gold once or twice per week, and weekly ballroom dance lessons to limping and feeling defeated. I read on here about Cymbalta and am on my fourth week of transitioning from Zoloft to Cymbalta.
I have an appointment in two weeks with my MO to see how things are going. The oncology nurse said the tumorestrogen test after my lumpectomy showed an 8, but that they would have prescribed an AI even if it were a 1. She said I could try arimidex and if that wasn't sitting well w me, I could go on Tamoxifen. She also said these drugs would only give me a 3% better chance of not having a spread of the cancer and that it was a decision I would have to make.
But, since my symptoms haven't changed much in three weeks, I don't know what's going on. Have any of you had SEs that lasted a long while? Seriously, this seems more difficult in some ways than Chemo and rads.
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Ozoner, were you on the brand drug Femara or one of the generic brands of letrozole? All the issues you have are what I'm dealing with, joint and muscle pain and fatigue. I've been thinking it's all because I'm on Ibrance also.
Faith (in the future)
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Ozoner - if it is the letrozol that is interfering with your exercise routine, drop the letrozol like a hot rock. the benefit of regular moderate exercise (basically your AWESOME routine) dwarfs the benefit of letrozol for early stage cancer. i do not understand why this is not clearly spelled out to doctors and patients because there is no question in the studies...
>Z<
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The se's for me are worse than chemo and rads. For one, chemo se's faded after a few days for me. For letro, it's daily with some days or I should say nights better than others. Fatigue is always. It's in bed that the joints and bone issues like to show up.
That'd be great if I could exercise, but with my knees and being way overweight on top of these se's, walking down a few isles at the grocery store is about it, once a week.. sigh
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My old cuboid syndrome/metatarsal stress fracture (the podiatrist and orthopod disagreed with each other) atop my L foot is acting up again. (Happened back in 2009 when I spent too much time wearing various styles of Crocs—one day as I was walking down a long linoleum-floored corridor, my foot stuck and I kept going). Even orthotics in my slippers aren’t enough to hold it at bay, so I am clomping around the house in rocker-soled Alegria patent-leather mules (which do tend to give me blisters atop my toes and along the edges; socks look dorky in them and make them too tight. I have no inclination to put on socks whenever I get out of bed or go downstairs in my PJs). I have skin made to go barefoot, but foot bones that don’t dare.
And I am terrified I might have a tooth abscess or worse, ONJ. I had osteopenia even before starting letrozole. Had dental exams before the Zometa infusion I had last August (a nightmare) and again—this time with x-rays—before my Prolia shot a couple of weeks ago. Now my left jaw feels weird, especially a tender spot at the bottom rear of my mandible, and I occasionally get a slight ache. Could be sinus or ear infection—but what if it’s an abscessed tooth that didn’t show up on the x-rays? Can’t get it pulled until 3 months post-shot, because dental or other oral surgery (or a gum infection) makes ONJ 16-33 times more likely on Zometa or Prolia. That’s “times,” not “per cent.” I know ONJ is very rare at the doses of Zometa & Prolia given for osteoporosis rather than bone mets, but it’s not unheard of.
Dammit, if I do have it and have to have my jawbone debrided (or worse) I am first going to eat and drink everything I ever wanted in case I will be reduced to ingesting mush.
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ChiSandy, sorry to thear about your tooth problem. Maybe this is of some help?
Before chemo, then between chemo and the start of my AI, I went for a dental check and asked what would happen if I got started on meds for my osteopenia then got a tooth abscess etc. My dentist said the acute dental infection would need to be treated right away despite the meds, to prevent it from worsening or spreading to bone. Knowing about the bone meds would mean her being especially careful with the procedure and followup. She said complications are more common, but do not happen to everybody. Well I'm still not on bone meds, my oncologist wants to just "follow" my osteopenia on AIs and check bone density at my two-yr check-up.
Whatever you decide to do, I hope your tooth gets better (((hugs))
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Hello, friends. All this is so much to keep up with, isn't it? Faith, I was on the Teva brand of letrozole and it took me just four months to find the SEs intolerable.
Zarovka, you inspire me every day. Especially helpful was to learn that despite being an athlete, sometimes even something like picking up your kids reduces you to tears. I have 2-3 hours of activity most days, and then I'm done. And by activity, it could be grocery shopping or running errands, like you were saying, Artista.
And ChiSandy, like you, I'm plagued by thoughts of possibilities. Most of all, I miss being out doing something all the time. Or not being the same "me" known by acquaintances.
If my SEs aren't better by the end of March, my MO will order tests. For now, I will take comfort with the posts on here (thank you all so much)and tell anyone who asks I'm using a cane because of a tango injury.
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zaroka...I completely agree with you about the importance of weight loss and exercise as it relates to lowering recurrence rates. IMO docs will never admit that anti hormone therapy negates that because it makes it so difficult for most to do either one while taking an aromatase inhibitor. Just remember that we are ultimately responsible for our own heath and need to make informed decisions about it. Again not against anti hormone therapy, it just not right for me. Goos luck to all.
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Seems it's the stage 1 folks who walk away and just risk it. I wonder how many with my #s or worse walk away, except those who chose go to alternative txs.
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Artist - The odds are very different at Stage III. And, if you are stage IV like I am, you take letrozol and deal with the side effects because the side effect of not taking it are pretty grim. I hate this stuff but I take it. But knowing the odds and what the side effects are for me, I would not take it if I were stage I or stage II.
>Z<
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everyone has to make their own choices and decide what is right for them. And the decision has to take into consideration the SE that is affecting your quality of life. I am stage 2. The letrozole is doable. I am fine with the SE. But I also have to consider my husband and his feelings. He is petrified of losing me. Of course, if my quality of life was seriously compromised, I would consider alternatives. But it isn't just about me. And I am still able to function as before the DX, so for the time being I will do what I need to do to keep our QOL stable. Hugs to everyone. We are each of us unique, and handle this the best way we can
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Artista, tell your doctor that the extra energy that ADD medication provides helps with fatigue. It's common for doctors to prescribe. You aren't asking for something extraordinary. Naps do little to help AI-induced fatigue. I wake up just as weary as I was when I fell asleep.
We shouldn't make decisions about taking AIs based on fear. Those aren't wise choices. Choosing to stay on an AI because of fear of recurrence, when it's damaging one's health and keeping one from even moderate exercise, is heartbreakingly wrong.
It's wrong for doctors to pressure women to stay on an AI, instead of pointing out other ways to stay healthy that don't involve a pill.
MOs should be advisors, not adversaries
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I am stage one, but grade 3 and LVI. Despite low oncotype I feel at risk. No chemo by choice (after low Oncotype) and no rads ( 1 out of 5 radiation oncologists would have given rads to me but autoimmune problems scared some doctors). Double mastectomy.
When I first went on Femara, I was a little bit of a polyanna on this board. I had fewer hot flashes due to being in my 60's, but had pretty bad joint pains, including back and knees, and went to great efforts to exercise regardless. I did find that the first 20 minutes were terrible, but after 45 minutes I felt better to some extent. I do a lot of Tai Chi and even went to the mall to walk if weather was bad.
Now it has been two years and I think that side effects may be more complicated, and deeper, if you will. I am very fatigued. I believe the removal of estrogen has affected mood and I am depressed despite all efforts to fight that. I have thin skin (from the drug?) so frequent little hematomas and purpura on my arms. I have developed atrial fibrillation (first episode I had to be rescued on the street) so I worry about clots and stroke. I have skin issues. And my osteoporosis is worse with a 5% loss overall in bone density since starting (though I was losing at virtually the same rate before).
I am not blaming Femara for all of the above but am saying that my positivity is waning. I am very tired and feel a lot older.
My oncologist says she wants me to take it for 5 years and now I understand why people have trouble even making it that long. Ten years is unimaginable. I was told risk went from 12% to 6% on hormone treatment (Oncotype, which uses Tamoxifen in its stats) but after 5 years my MD said difference in risk is 1.3%.
I am also curious: the Femara insert says that 20% of the normal dose is relatively effective. Can we cut these pills in half? Will that affect side effect level or is removal of estrogen absolute regardless of dose? Also I am now on Medicare and Femara is $95/month: I had a reaction to generic so may try TEVA when available. Cutting pills in half would help with cost if I stay on the brand name.
I have kids age 30. 26 and 24 and want to be around. It starts to feel like, selfishly, I would rather take the risk and go off, but for their sake, I will keep going as long as I can.
I know women who do FINE on these drugs. I always hesitate to post honestly. I have many other health issues that could be a factor. If you read this please try an A1 and don't let ANY reports of side effects sway you because you have a shot at doing well on them and they are effective.
But for me, the side effects seem to have evolved over time as the total lack of estrogen has long term as well as short term effects.
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Saw my onc today with a laundry list of misery. I can't do letro and she says the other AIs are basically the same. My arthritic knees and brain fog/fatigue are the biggest things esp since I live alone and can't be so compromised. I was on Tamox for 7 mo and while I had se's on it as well, it wasn't this level of badness. For the amount of protection you may be getting, it just isn't worth being miserable 24/7. So after 5 weeks, I'm done.
So I wish all of you well on this-back to the Tamox thread I go.
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Smart move Artist. Take exceptionally good care of yourself!
>Z<
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Thanks, Z! I'm around, just not so much in this thread.
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Artist~ I took the T for about the same amount of time you did and I am about to begin the Letrozole. We sure do have a similar path. Let's keep in touch. Best wishes to you.
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gardengypsy, not only a similar path but similar profile- except my tumor was 7 cm. And I'm not going anywhere.
You or anyone else is welcome to pm me anytime. I'll still be on this board daily.What I do regret is being miserable for so long, 5 weeks. My onc noticed my hairloss as it really shows up front. I hope to get it back as Tamox didn't increase it. I'm googling right now to find out how long it takes to get letro out of my system. I'm not starting T until at least Mon, giving myself a weekend break. Onc didn't even suggest another AI as in her mind, they're all the same se's. She saw when I hobbled in that I was a miserable exhausted zombie so we didn't even go there with Aromasin or Arimidex.
Good luck to you. Hope it works for you.
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Wishing you the best, Artista. I'm glad you are done with the misery.
I'm Stage IV and I take Femara to stay alive, and I'm struggling with it. I was taking it every other day, unconventional yes, but it was all I could tolerate. Then I found Claritin helps immensely with aches and pains. I tried to increase my dose to two days on, one day off. My weight took off again -- my moods are horrible -- body feels like the flu. I dream of having one day without pills, fantasize about a life without cancer treatment. It's the treatment and not the cancer that is making me feel terrible
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Artista--wishing you the best and to feel better very soon. I had pretty good luck with Letrozole for 9 months or so--definite aches primarily in my hands and feet, but manageable. Most recently however, I had a significant hair shed. In response to my dismay, MO took me off Letrozole for 2 weeks and now I will try Exemestane. She said that she has patients that do well on different AIs and she commonly will switch them in hopes of finding one that they tolerate better. I will give it my best shot but - ugh!!! It's strange that I feel funny about leaving Letrozole behind. I guess it's because it's the devil I know. am a bit scared to start a new one. I wonder if I will get hair regrowth? Wish me luck!
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Thanks TarheelMich-
I'm sorry you don't have the choices we who are not stage IV do. I simply can't imagine. I had ordered tumeric-curcumin with black pepper in it since some folks say it helps with the aches and since I had the prob on Tamox too (though not as bad), I plan to try it. It also can help with warm flushes which I had on Tamox as well. And for some it helps with hair loss. This bothers me so. In just 5 weeks I lost so much hair that my onc noticed the visible clearings and comb overs. I hope it comes back since I didn't experience accelerated hair loss with Tamox. Best wishes to you.
Thanks Sheila52-
Of course I wish you good luck. I wish you all good luck! I was in such bad shape yesterday that I didn't bother bringing up the other 2 AIs to try. She saw my misery and just said I'll put you back on Tamox. I was relieved and worried at the same time. What a shitty feeling to have, esp for something we have no clue if the decision we made is the right one. Should I recurr or mets, I know I'll be wondering and maybe kicking myself about stopping AIs at age 52 5 weeks in, regardless of remembering my misery. Such difficult decisions we have to make with no real reassurance that you made the right one other than you feel better. The what if is upon me now. Today is my first day of no letro and my head stuff feels better already. Not as fuzzy which is nice! On Mon I will pop Tamox. So we'll see. After the sheer misery on letro, I just can't imagine myself going back in a month for the how are you doing on Tamox check and bringing up Aromasin or Arimidex. Seems people have the same se's on it. Not having accelerated hair loss alone on Tamox makes me not want to risk that with the other 2. Man this sucks! Best wishes. Let us know if you see hair coming back.
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