FEMARA
Comments
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enjoy- I also sometimes feel like a poser and I do have a bone met and a skin recurrence. The poser part is due to the fact that so far my life is normal aside from the hot flashes from Femara. I work full time, and do all of my regular activities (especially now that I'm almost all healed up from radiation) But really I know there is no such thing as posing here. We do get support here but just as important is the information. We have a similar diagnosis and I had a clear sentinal node biopsy. You just never know. Here's what I do know (ok, believe): life is a journey of unknowns and we have a choice about how we respond to what comes our way. The big thing in life is to do what you are already doing: do your best to enjoy every moment and find the lessons in what life brings. If you eventually develop metastatic disease, that part of you will not disappear. When the likelihood of my eventual progression comes I expect to retain these core beliefs and I expect you will too :-)
Cathy- it's so cool to see how you have gone from receiving support here to providing it. I hope all goes well with your trial!
((((((kathec))))) Big big hugs to the East LA girl from the West side girl.
Lisa
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Kathec - yes, you need to take with you an advocate - and advocate with a good voice and a notebook. Before you go, write down every question you have. Tell the doctor as soon as you see him/her that you have questions that you need to have answered. If your doctor refuses to answer your questions, then your advocate needs to get involved. If you cannot get the answers you need, then make it clear to the doctor that you will be looking for a new oncologist who will treat you correctly, including providing the information you require. If the doctor does answer your questions, make sure your advocate writes down the answers.
It's remotely possible the doctor has answered your questions, but because of the stress of the situation you cannot keep the answers in your mind. That's why you need someone with you who will write down what is said. My husband always goes with me to important doctor appointments. He has not missed a single oncology visit - even now four years later. He helps me remember what is said by the doctor, and also helps me remember incidents so that I answer the doctor's questions appropriately (I have a tendency to downplay any problems/pains I have.)
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....have i told you guys lately how much i love you? you are a major part of my strength and sanity. when i think about it, i have been having several issues for a very long time there, and there is some of my team there that i respect, enjoy, and believe. i guess that for a while now, when every thing had calmed down, active treatment over, and all the follow up tests are done, that i might transfer to another treatment center, for a second opinion, and also all follow up care. i have gotten some really good suggestions from los angeles ladies here, about places i could try. and i do think i am ready. i have a follow up pet/cat scan in a couple of weeks, and i seriously hope they don't find any animals in there, of any size! then i have a colonoscopy, the next day i think, and then a few days after that, follow up with new breast surgeon, i have only had two clinic visits with. i will bring notes for that one, and slowdeepbreaths, has even offered to go with me! i haven't met her yet, but we have talked and texted, and she is so sweet to offer.and it would be so great to meet her, and to have those second pair of ears and eyes, and i mean it just will be really great to meet her! so thank you all for your input, it is all valuable to me. i don't feel quite as crazy, today...
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Kath sounds like your head is clearing and you are ready for a good fight
My bets are on you!0 -
Kath, I have been at this for a very long time. I am so sorry you are having to fight your own doctors! I agree with the others to take a list of questions and tell the onc right up front that you want some direct answers. I did this for several years with my onc. Fortunately, he was always willing to give me the time I needed. You or your advocate need to remind those docs they work for you. YOU are the boss.
I have known women who finally did get new teams of docs. Sometimes that is the only remedy. You sound like you are on track now. Good luck and let us know how things are going.
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Kath,
I've fired two oncologists - one in the US and one in New Zealand. Don't hesitate to fire yours - YOU are the boss, indeed! Stress, meds, low estrogen, etc, can definitely give you space brain. I don't know how long you've been on Femara, but the first six months or so were bad for foggy brain, forgetting stuff, etc. It's still not great, but has gotten better over time.
Take care and good luck!
Terre
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Kath (((hugs)))
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Terre,
It's good to hear that the foggy brain and memory issues have gotten better over time. I'm struggling with that big time right now and hope it lessens soon. I started letrozole April 2. I'm taking a vacation soon so that should help clear my head a bit.
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kathec ~ you have received wonderful advice from the beautiful ladies on this thread. Take an advocate with you. My sister went with me to my appointments to take notes; she also had my list of questions. Later I would read through the notes she would type up and email me and was amazed at what I missed in the conversation. I think too often we, as patients, become a number not a person to the doctors and staff. Some of that is self preservation as they see, hear and relay bad news much of their day. That being said, doesn't excuse them from listening and being compassionate. If they are unable to see us as mothers, wives, sisters, aunts, friends………then it's time for them to get out of the business of go into research where they don't deal with real people and their feelings.
You have every right to ask the same questions over and over and over. You have even right to ask LOTS of questions. You can and should ask away until you get the information in a form that makes sense to you. This is YOUR life.
Off my soapbox now. Sorry about the ranting and raving.
I am sending you a GIANT SIZED (((((HUG)))) Please know we are here to listen and support you always.
Cakes
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Do you guys know that you are just plain terrific? I would so hug all of you! Thank you very much for all of your responses, and will do what i can on my part to straighten things out. i hope femara becomes gentler and gentler for all of us! love from kathe
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Kathe so glad you are feeling up to getting your 'team' sorted. Keeping my fingers crossed that things go well and you are happy with the result. ((((((((Hugs))))))))
Love n more ((((hugs))). Chrissy
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Hugs back and so glad we are here for each other. I was away for a few days also and yes it was nice but tired now. Few more hot flashes but nothing like with tamoxifen. Trial going good so far. Best to you all!Cathy
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Hey just thought drop in and say hi I have been off femara since dec last year. I have been doing good. Had my yearly onc visit . Eveything was good but some times I still think about cancer creeping back in my life. I just pray I never have to go through it again. Prayers for all
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Hi Nanna! Glad to hear that you are doing well and getting on with life. It's really hard not to have that fear of the cancer returning but the easiest way to handle it and manage to on with life and all that it offers is to just keep saying to yourself, 'it is what it is and it will be what it will be and I can control none of it.' It's called acceptance for things that you really have no control over.
Hope you continue to do well!
Love n hugs. Chrissy
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Saw onc Tuesday, overall feeling like the Femara is pretty well tolerated. I gained a few pounds so reduced my calories on MyFitnessPal to see if I can catch that before it becomes an avalanche
Kath hope you find just the right group to work with.Nanna hope you continue to feel great and do well! I think it crosses everyone's mind at one time or another about future issues but I like what chrissy said and agree, we can only do what we can and the rest is truly going to be what it is.
PS Intothewoods, my brain fog has been much better, started Femara in late March and just this week almost felt normal at work, brain wise. Actually just noticed yesterday. I am hopeful clear thinking is going to continue but we will see!
Have a great day, everyone! Off to PT, then work!
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Like most of you, I too had the muddled thinking and felt like I was living in a fog but it did clear after a few months and I have been back to normal (I think....lol) ever since. and I have been on this drug for almost four years now.
Love n hugs all! Chrissy
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I have found that some side effects come from the combination of drugs. I started Femara late Oct last year and cruised along pretty well. 2-3 months ago I started noticing a good bit of muscle pain that was new. I have been on a statin for years, and statins are known to cause muscle aches, but I have never had a problem with the statin. So I and my MO assumed the new side effect was from the Femara. At the time I discussed it with my MO, the pain was manageable.
However, a few weeks later when I saw my PCP, the pain had progressed so that it woke me up at night and continued throughout the day. My PCP suggested that it might be the combination of the statin and the Femara that was causing the problem. He said I could take a 2 week break from the statin and see what happened. During that break, the muscle pain pretty much disappeared and it came back with 10 days of re-starting the statin.
I was taking both pills in the evening. A couple of weeks ago I changed that routine and am now taking the statin in the morning and the Femara in the evening. The muscle pain has significantly improved. It is still there, but it is minor and manageable again.
Just something to consider...
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savgigi, thanks for sharing how you take your statin in the morning in order to mitigate your pain. I need to do that as well because I have been taking both together at night and have trouble remaining asleep because of pain awakening me. It is so good to share our experiences with one another.
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I started Femara (Letrozole) almost 4 months ago and had trouble sleeping. I switched to mornings and sleep problems vanished. I don't have fatigue during the day like some do when taking it in the mornings. No joint or muscle pain so far, so I'm crossing my fingers.
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Peaches, you are very fortunate. I started Femara one month ago. The joint pain, hot flashes and no sleep actually make me stop after 2 weeks. Talked to my MO about it and he left it up to me but recommended a give it another try and take it night instead of mornings. So far so good. My only SE is still the joint pain in my hands. The right more than the left. So, I'm going to keep going with it and see if hopefully the pain in my hands goes away and all the others stay away! What a roller coaster of a medication this is!
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I think my mental fogginess is lifting and the hot flashes are fewer, although it has been a bit cooler here this week so that might be contributing. I have been on generic for almost 4 months and take it in the a.m.. So far no joint pain. I do have some fatigue that varies day to day. I'm wondering if it could be residual effect from radiation 5 weeks ago
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intothewoods it's very possible that the fatigue you are feeling is from the radiation. It usually starts a week or two after you finish and goes on for about double the time you had the rads treatment. Take it easy if you can and rest when you need.
Love n hugs. Chrissy
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Chrissy, thank you so much! I'd much rather think the fatigue is from the radiation than from the femara. I have to chuckle because I've decided to take up hiking and went on my first hike today. I did really well while hiking, went to lunch, ran an errand and then came home for a nice long nap. Still feeling pooped but quite relaxed and happy. Looking forward to a warm epsom salt bath tonight to turning in early.
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Wow Intothewoods you did all that while feeling fatigued? You go girl!!! You have my admiration!.......lol. You certainly do deserve that nap!
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Intothewoods.... I'm impressed, too!
I've always wondered... are epsom salt baths really effective?
I was always worried I'd get some kind of allergic reaction to it, or it would be very irritating to my, um, er, nether regions....
Do they help you?
Anyone else take them?
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Blessings a warm epsom salt bath is the best for the relief of muscle aches and pains and not just after exercise! They can be used at any time and don't usually irritate the nether regions.......lol. Epsom salts have a lot of magnesium in them and when you soak, a certain amount of the magnesium is absorbed and thats why it works so well.
Love n hugs. Chrissy
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Chrissy, you are a mine of information :-) I knew it worked but I didn't know why!
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I buy a magnesium spray at my health food store. My massage therapist uses it on me and I use it as a deodorant as well as a moisturizer as it also contains oil.
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Tammy, my mind is filled with useless bits of information but sometimes I get lucky and something goods pops out and helps others........lol. I do miss my Epsom Salts bath as I can no longer get up out of a bath as I can't squat nor can I kneel.
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Has anyone experienced acid reflux with Femara? I have never had it or even heartburn and now I wake up every night with horrible acid reflux?0
