FEMARA
Comments
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HI gauleyeagle
I'm so sorry you being so sad. What was your DX? I'm on Femara till 04/2010 and I'm coping with all possible SE's. Thought sometimes to give up and risk my life, but after taking a stronger pain killer I'm continuing. I presume your pains are not from rads, but because of Femara. My first reaction after taking it for two months was terrible, I couldn't walk, stay, every move was torment, but after 6 weeks on ibuprofen it grows tolerable. Now you are at very effective pills, wait a little, certainly you MO will find out a way to help you!
(English isn't my native language)
Thinking of you
Usha
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Hi Ladies,
Please advise. I having been experiencing pain in my upper left arm, and in my left thigh. It's not like muscle pain, sometimes it's a dull ache and other times more severe. I have had problems with my shoulders hurting since starting on Femara 2 years ago but this is different. My arm feels heavy and the pain is kind of like those growing pains you used to get when you were a kid, if you know what I mean. I hate to run to the doctor for every little ache and pain as I don't want to waste their time but I don't know about this ........ Has anyone else had these issues, is it yet another SE of Femara?
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hi Gainorl
Did you have mastectomy or lumpectomy on your left breast?
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HI Usha,
No, I had a mastecromy on my right side only and that was 3 years ago, why? I do have very slight LE on my right side which I have a sleeve for if it starts to flare up but this is different.
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Hi Gaynorl
I'm 18 month past my lumpectomy, had have no LE before, but now I believe
to get it a little if burdening my hand. I think you should ask a doctor not to worry about.
Best wishes
Usha
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Hi Gaynor, I had a similar sort of pain and unfortunately for me, it turned out to be mets to the bone. I know you don't want to run to the doc all the time but for pain that is not one you feel is a normal thing and lasts longer than two weeks, it's a good policy to get it checked out. Good luck and please let us know hoe you get on.
Love n hugs. Chrissy
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Hi Chrissy,
Thanks for the advice. I have to have repeat blood tests in a couple of weeks as my thyroid may not be working properly and then I will need to see the doc. So perhaps I will wait till then, which will be a bit over the 2 week rule, but not that far out. Hopefully this pain will have disappeared by then and be a non issue, if not I can have her check it out.
Thanks for the hugs n stuff, feel like I need some right now. Gaynor
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Gaynori, interesting that you say that your thyroid may not be working properly as it seems that is a common link with a lot of Dx's of BC. The testing done is usually on the PTH levels and this is for Parathyroidism. The parathyroid are four very small glands attatched to the thyroid itself and is often not working properly and can give very similar symptoms as the disfunction of the thyroid. It would be interesting to hear what your levels are. Would you mind letting me know? I am really interested in the correllation between the two.
Sorry Gaynori, didn't mean to go off on a scientific tagent but sometimes something will grab me and I just keep following like a hound dog....lol......maybe I was a researcher in a past life.
The two week rule (or there abouts) is a good rule to follow and tends to stop a little of the worry that goes along with this Dx by allowing us to ask the question of ourselves in a calm way, 'is this a normal thing ir something new?' and if it's something new, just being aware enough to keep track of it. This road is super scary sometimes and I think we have a tendancy to embroil ourselves in the 'what if's ' when all we really need to do is relax and watch. Good luck with your blood tests and your vsit.
More love n hugs coming your way. Chrissy
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Thanks for sharing Chrissy, I find this website so amazing. It's great to learn and share from others experiences, and it helps to cut down on the paranoia!
I will make sure I let you know the results of the bloodtests. I don't go for them retesting till mid June, so another 2 or 3 weeks yet, if I can stay awake that long, the exhaustion thing is a killer, I just don't have the energy I used to have and I find that so frustrating, and for some reason my patience level has been zapped too - some days the slightest thing can set me off. The weather here in Ontario is nothelping much to lighten the mood either, it's been raining almost constantly now for 5 days, and cool for the time of year - we have a long weekend coming up so I sure hope the weather improves by Friday. I'm sure I will feel much brighter in mood once this weather improves - roll on summer, blue skies, good temperatures and working/sitting in the backyard, oh yes please!!!
Thanks for the love and hugs. Sending some your way too. Gaynor
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ChrissyB
I have researched the parathyroid thing and I have found many similarities so I will be sure to ask the doctor if she is checking for that. Thank you for the pointer, let's hope I can get this sorted out and start to feel my old self, what ever that was! My mind is so scattered these days I just had to edit and resubmit because after I read thispost through it was so jumbled, oh well..
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Gaynori, ditto on the sub level of patience.....I guess it's due to the fact that we have been faced full on with our own mortality so we know that life can be short and so can't abide people or things that seem to be indecisive as that is purely a waste of time which we find precious. The returning to normal thing I think doesn't really happen but what does happen is we find a new and often better way which becomes our normal without us realising. All in all I think that we evolve a newness of awareness in all things and sometimes I look at people living their what they think are 'normal' lives and I feel sorry for them as they are so caught up with the day to day that living doesn't actually come into their lives at all. Most of them cannot sit quietly some where and just enjoy being, regardless of what is going on around them.
I find I can find joy in all seasons and beauty as well. I can find sitting in front of the fire on a cold, wet winters day and enjoy the moment, the warmth that comes from the fire, the beautiful colors and shapes that the flames produce depending on the wood that is at that moment burning. I can sit and watch the rain and track an individual droplet as it falls and find calm in that. I can watch a single cloud move slowly across a bright blue sky and transport myself or watch a bee bizzily going from one flower to another gathering pollen.........what I'm trying to tell you, is that joy and the enjoyment of, can, in itself create calm and in being or finding that calm, you can find peace and in that peace, you can find freedom.
The scattered way of mind is purely because of the stress level you are at at this time and it will get better I promise you. Hoping the next few weeks pass quickly for you and the results of your bloods are all good.
Peace, strength, love n hugs. Chrissy
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ChrissyB: your words are profound and poetic!
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Hi Chrissy
In my computer I have a file "thoughts about C" and I pasted Your sayings there!
Best wishes
Usha
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Chrissy,
So eloquently put, and you are right, sometimes we get so caught up in the everyday stress we forget to enjoy the simple things that can bring such pleasure and calm. I have to say though that watching the rain drops for almost a full week has now lost it's potential to create calm and soothing feelings - I do prefer the warm dry weather as I like to lose myself in gardening! That is my quiet time, my ME time.
I do undestand what you are saying about my scattered thought process right now, and this is something that previously was totally alien to me. I have always been a very structured person, if you know what I mean. I like order although I enjoy the pressure of multi tasking but I am finding that I do not have the patience or strength of mind to deal with nearly as much of the "multi tasking" - unfortunately this plays a huge part in my job, and hence the stress levels seem to be going through the roof. The people around me saw that after treatment finished, in their eyes anyway, I returned to my job just as though I had never been away and so expect the same extremely high standards and yet I am finding that my brain is no longer functioning that way. For a good 2 years after treatment everything seemed fine but since Christmas I am finding that the fatigue, aches etc are getting in the way. I am hoping that once the blood tests are done and we figure out the problem I can get treatment to at least get me into a nice "normal"!!!
Thank you for your kind words and encouragement, as they say "and this too shall pass..".
Not at work tomorrow and Monday, so looking forward to spending a nice relaxing weekend with my DH, we will take a ride out and enjoy the beautiful countryside. Hopefully we will find our way to one of our beautiful lakes and sit and just enjoy watching the world pass by undisturbed - heaven!!!!
Love Gaynor
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I just started Femara too and I'm gobsmacked to find out the the SE's could take months to show up. My mom is a 7 yr. BC survivor and she took Arimidex with no SE's. My oncologist said if I have trouble with Femara, he could switch me to something else. So far so good, but I will let you know. oxoxox
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Hi Rohanna and welcome. I'm on Femara and have been for eight months now with no side effects. I was on Arimidex prior and had all the side effects imaginable..........just goes to show, we are all different and tolerate different things in different ways. Hope it keeps being good for you.
Love n hugs. Chrissy
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Thank you chrissyb! I hope we both continue to have good luck with Femara. I'm feeling a little fatigue but I'm hoping it has nothing to do with Femara. oxoxoxo
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Rohanna, I also had fatigue in the beginning but I now take my little yellow pill at night and I don't have any problem with that now. Give it a try and see if it works for you........it doesn't make any difference to it's effectiveness if you take it at night.
Love n hugs. Chrissy
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Rohanna: I agree with Chrissyb... My MO had, in fact, warned me about the tiredness side effect and recommended that I take mine at night..which I've been doing. I take mine, along with my extra Calcium and second Osteo-Biflex, right before I go to bed. One of the benefits I've found is that I'm sleeping a lot more soundly than I have in the past 5-6 years.0
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Have any of you notice a change in side effects after switching to the generic. I JUST started feeling good again, and my s/e's almost gone on the original after 15 mos. I'm a little nervous about switching over to the generic. But that's what the pharmacy gave me when I got my prescription yesterday.
Joni
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Joni, I can't help you on that one as we in Australia don't have the generic. Hopefully someone will be able to give you some ideas soon. I can't remember reading about any changes but I could be wrong.
Love n hugs. Chrissy
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I'm thinking of switching to Tamoxifen. It's been nearly 2 years since I started Femara, and the pain is excrutiating. Also,for the last few weeks I've had severe rotator cuff pain.I've heard of other women who have had to have rotator cuff surgery just because of aromatase inhibitors. I wasn't sure I believed that was the entire reason until now. I've done nothing to injure my shoulder but it's getting progressively worse.
I plan to call my oncologist on Monday.
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I've started taking my Femara at night with my calcium and Osteo Bi-Flex before bedtime like you suggested, gingerstx and chrissyb, and so far so good. Thank you for the tip! I have my first RAD on Thursday now that all the preliminary stuff is done. Waiting to see how it goes while I'm on Femara. Hugs and kisses to all.
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Rohanna I'm glad to hear that the switch to night regime is working for you and making things a bit easier.
Love n hugs. Chrissy
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Rohanna: So glad to be able to help! I see that your BC diagnosis was similar to mine, except I was stage II with a 3 cm lump. Like you, I was lucky that I could skip chemo and go straight into rads. Make sure you find out exactly what area is being radiated (halfway thru my treatments I found out that part of my back was getting some rays and that's the area that ended up giving me some pain as my treatments progressed) and spread whatever lubricant you're using liberally over your radiated area and the rads should be a breeze for you. One difference for me was that my MO didn't want me to start on Femara until I was completely done with my treatments. I'm sure there's some rationale involved in your MO starting you on it now, but if you find that you are experiencing any kind of side effects (from either the rads or the pills), you might want to ask your MO if it'd be ok to postpone the Femara until your rads are finished. Stay positive!0
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rohanna- I started femard 3 weeks after chemo and before rads. Didn't have any problems taking it through rads, other than the normal bone/joint issues that most everyone has. I had 37 rads.
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Thanks Ladies! I'm so grateful to get information from people who have already been there. What lubricants did you use in your rad area and how often? I was told Aquaphor. jacee, how bad were your bone issues? My bone density test showed that I'm in the early stages of osteoprosis and I'm already achy from the Femara. Big hugs to you all.
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Rohanna: I switched to Aquaphor during my treatments because we thought I was allergic to the cream my RO had said to use. I'd developed a rash reaction to my rads so I did this regimen: First I cut off a piece of leaf from an aloe plant, slit it in two and rubbed the sap over the area. Then I spread cortisone cream over it, and finally I topped it with the Aquaphor. The Aloe is good, even if you have no rash, because it's cooling and does help with the healing of your radiated skin. You will find that the skin that's already been sunburned at some time in your life will start reacting to the rads first. Eventually, the entire radiated area will redden. So start lubricating the entire area from the get-go, even before you have any signs of redness. The secret is to keep your skin from drying out, which is why the RO probably told you to avoid using deoderants. My RO told me it's not the aluminum in the deoderant that she was concerned with.. it's the drying effect. Personally, I shaved my underarms at the very start of my rads and didn't apply any deoderant under that arm during the entire time. I'd heard that the rads kill the bacteria that produce the odor.. and for me it seemed to have done that.
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Just a heads up..............some time last month there is a generic for Femara. It's called Letrozole.
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Hi Ginger: I just joined as I was investigating Femara and read your posts. I think I will try taking it in the evening as you suggest. I was looking forward to August as my onc said I would be getting off of Femara but now she wants me to stay in for another 2 years and I am very upset. I have very bad osteoporosis (due to the long term Femara) plus constant pain. So I am just looking for opinions.
Also, since June 2010 I have been very ill but can't seem to figure out what it is. My heart rate jumps to 150/155; constant tightness in chest and throat. I have been to cardiologist, stress test etc. Wanted to see if anyone experiencing these symptons.
Also, what calcuim do you take?
Thanks for your input.
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