Life on aromasin
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Thank you Elaine!
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Hi Kittysister,
The brain fog drives me crazy too. Unfortunately, I am having severe joint pain on this drug and am thinking of going to femara next. But, I have stuck it out because this is kind of the "devil I know" vs the one I don't know. Ugh!
But, it is the best defense (AI's) against recurrence and/or another breast cancer. Keep the faith. Hope you do much better on this one!
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Hi April, looks like we are switching places. Good luck on the femara!
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Thank you for the info/concern. My next MO apt is July first. I will tell them.Yesterday was the worst fatigue day I have had in a long time. I refused to give in. I worked all day, took a 30 min rest, then on to yoga class but the whole time feeling like an old shoe. At the end of the yoga session I broke down. I just starting crying like a toddler that skipped naptime. Fortunately its a cancer survivor yoga class so those ladies have been through 100 times worse than I. I was hugged and instructed to breath.
I went home, hot bath, glass of milk and tucked into bed by 8:45. I crashed until morning.
WTF was that all about.
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RG, how long have you been doing yoga? I have to admit, I don't know much about it, but it was recommended to me. If I ever did a yoga class, I'd want it to be with other ladies who have had cancer, too. I hope you're feeling better today.
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Kittysister, I have found yoga to be very helpful. It helps to stretch out the painful joints, gets me grounded and relaxes me. I try to do it when I get home from work, I have a couple of 20-30 minute videos by Rodney Yee. I do it while hubby is getting dinner ready. Although I must admit I have fallen off the wagon reecently. We are back on our boat part of the week and I need to get a new routine.
Raidergirl, I am with you on the fatigue. Every now and again I will have a really bad day when I wake up and feel like I got hit by a truck. Last week I actually called off of work one day because I just couldn't function. Went back to bed and slept half the morning. I sometimes get a residual day when I feel like I am back in the middle of chemo again. Makes me appreciate the good days that much better!
Martha
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I am constantly constantly fatigued and my knuckles hurt now as well as almost every other joint!
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My knuckles are hurting too. The ones on my right hand were so swollen, I had to cut a ring off. My right ring finger is very "trigger-y". Anyway, I am sticking this out for at least another month. I have spoken to a few people who have said that these joint things can go away. So. I am going to be working out like a maniac and hoping things improve... (fingers crossed but not really: they are too sore to cross).
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It's mainly my knees that hurt when I first wake up. Usually a hot shower helps. Then they start hurting again if I don't move around enough during the day. I've been on exemestane since February and I'm hoping the joint pain lets up eventually.
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I hear you on the fatigue on this drug! Sometimes I feel like any hours I sleep did absolutely nothing to make me feel refreshed. Other days it is not as bad. It comes and goes as does the pains I have. Some days my left leg/knee is really bad, other days it is my right one! It is maddening. My right knee was already bad and I was about to have TKR. Now both of them are awful! Plus my hip hurts too. Neck sometimes and hands in the morning big time. Brain fog and fatigue are the worst of it though.
I am going to see my MO on 6/16 so will see if I get switched to Femara or if she cheerleads me to stay on exemestane which is what she usually does by telling me it has the least of the side effects reported on AI's and it is the best AI for DCIS. We shall see... I am also having my 2nd bone density test since going on the drug so will see what is happening on that front.
Such a tiny little pill to cause so much pain!
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You know, april485, I often marvel at how small the pill is. I really wonder if it would be less disturbing if all of these side effects were coming from a big horse pill!
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My latest update on aromasin .. I can't sleep anymore! I am always awake until at least 3:00 - 4:00 am. This is after I have taken my xanax before sleep, around 10:00 p.m. By the time I finally get to sleep, it has worn off. The next morning, I wake up feeling like I haven't slept at all. Also, last night, the tips of my fingers and toes were burning. Anybody else have that?
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Rhody, thanks for the information on yoga. I'm all for anything to get grounded, but haven't done a thing about it yet!
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kittysister, if it keeps you awake, I might suggest that you take it at a different time of day? If you take it at night, could keep you up. I take mine in the morning and although I have some rough nights, for the most part, I sleep ok (and have Ativan for the rough nights) When I took it at night, I never slept at all! If you are already taking it in the morning, then I have no answers unfortunately.
As for the burning, not sure about that. Have not had this issue.
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I strongly recommend taking it in the morning as April suggests. I had been taking it with/after dinner and found myself having trouble sleeping. I now take it in the morning and honestly I am sleeping better now than I have in years. I am miraculously able to get BACK to sleep even if I wake up to the go the bathroom (which never ever worked out previously).
No burning sensations for me, just serious trigger finger on my right hand and lots of achy joints. Today, though, my Tin Man "OIL CAN" vibe is lower than usual. I've been swimming with my 11 year old everyday this week and I think it's helping.
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I am seething - was told today by Oncologist that Aromasin causes joint problems and stiffness in 70% of women but that there is nothing that helps, just keep moving as it will get worse if not.............ok so I will do John Wayne stagger every morning for an hour..............my exhaustion is because i am "seriously depressed" , Epstein Barr does not cause tiredness or fatigue and that I cannot stop this drug probably not for ever..................!!!!!!! Yet exhaustion is one of the top and most frequent side effects................. I argued about quality of life and then came the killer statement "if you stop taking this and your symptoms go then you won´t want to take it again"...............
Much better to try and shame me than admit its the treatment that makes me feel so lousy
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I don't have burning in my hands but they've been going numb at nightand I have to shake them to get the feeling back.
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I have not posted in a very, very long time - and never on this thread. New here. My oncologist switched me from tamoxifen (after five years) to femara about 6 months ago. Tamoxifen was not horrible. Minor joint pain and hot flashes but nothing I couldn't handle. After 5 years on tamox I started Femara in November. Wow. I am experiencing moderate to severe joint pain - hips are the worst but now my back and knees are painfully aching every day. The pain in my hips is so extreme that I'm not sleeping - waking and tossing and turning due to the pain. My oncologist is switching me to aromasin. I'm pretty discouraged. The pain is intense right now. I'm hoping this gives me some relief. I could use some support.
Nancy
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Thanks, all. I just heard something tonight about burning fingers and toes possibly being a sign of diabetes. Ugh! But my last blood work was okay, so am hoping this was just a freak thing and not an ongoing one.
Lily, that's it .. they have to blame it on something .. so why not depression. I'm sure it's the treatment. It looks like we're not alone in it, either.
Good luck, Nancy.
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Lily55, that is seethe-worthy. I will say that at least a few women have told me that they have experienced the side effects fading after a time and so there is some chance (even a small one) it will get better. Also, another friend of mine said that her MO told her that the difference between the bone vs. joint side effects is that the joint ones are not permanent and will go away a couple weeks after stopping the drug. Of course, when I am scheduled to stop the drug my son (who I am struggling mightily to keep up with) will be 21 and not really up for playing anymore!
What appears to NOT be working for me is fish oil. I have been taking it steadily for 4 weeks and frankly have had no effect whatsoever. If anything things worsened while on it (I had to cut a ring off my right hand because my knuckles were so swollen). I guess I'll keep taking it but it is not helping my joints. My BS strongly suggested taking more pain killers than I have been (NSAIDs). But I feel like if I take them I cannot drink at all (that's my feeling) and so.... I would rather have a cocktail while I wallow in our hot tub than take Aleve every day.... (one of my liver enzymes was elevated recently, though it did go back to normal...)
Does anyone have any suggestions, other than activity (I am being very active) that might lead to some relief? Ice? Heat? Herbs?
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Lily55, the only thing I have for you is a huge (gentle) hug because this is most certainly not in your head and the effects of this drug are truly horrible for some of us (and I count myself as one of those people) so please know that I commiserate and know how you feel.
My MO said that she is "my cheerleader" to help me to stay on this drug. Even though my BC was stage 0, she feels since I was >95% ER/PR+, I will benefit greatly from this drug. That remains to be seen. When having no quality of life is present, trying to shave some percentage off of possible recurrence does not always make sense imho.
Edited to add that at stage III, you have a lot more at stake if you quit this drug than I do so it must really put you between a rock and hard place...sorry that you have to deal with that as well.0 -
I strongly suggest trying Turmeric and ginger for your joint pain. I've been on it for about a year and it's helped me to get rid of about 90% of my pain. And I just saw a story on the Today Show about how much it helps with arthritis. My holistic doc put me on them and said he puts all his arthritis patients on them. Completely changed how well I am dealing with Tamoxifen. After my hysterectomy in Jan, my pain ramped up so I just upped my dose and went right back to feeling great!
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lala, what brand do you use and what dose?
EDIT: Thought I remembered lala posting the answer to this question a page or two back and found it so will put it here in quotes for anyone who is interested. Thank you lala
"Here's what my holistic doc told me to do: start with Gaia brand turmeric which is a good company and take 1 500mg capsule a day, any decent brand of ginger and take 1 500mg capsule a day, SloMag brand of magnesium and take 2 tablets a day. Try this for 3-4 weeks. If no improvement, add a capsule of turmeric and of ginger and 1 tablet of SloMag. I saw results in about a week! The original dose worked for me for over a year."
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I am taking Boswellia, Turmeric and Magnesium already, they do help but I am definitely getting worse, still waiting for a bone density scan ordered last year........I felt worse on Letrozole and had lumg problems then, I do wonder if my current lung and breathing problem is a result of Exemestane, have a scan on Monday now but have to wait for the appt to find out results
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just getting started on the Turmeric and ginger and mag.
I found the turmeric in capsule but the ginger only in a liquid, tastes pretty nasty but doing it!
I think it is helping but really early to say and it maybe my positive thinking
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Claritin (Loratadine) worked for me for joint pain . Better than Advil or anything els
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I take Claritin for allergic reactions to stuff but it is not helping back aches~~
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lago - thanks for posting; that gives me hope! I'm definitely going to try the supplements that lala suggested. I took my first Aromasin this morning. The letrozole wreaked havoc on me! My hips are hurting so badly! My back, my knees - I feel OLD. I read an earlier post from Lily55 - I, too, have the John Wayne stagger! And it's depressing how debilitating this can be. I love it when people say to me, "You are still on cancer drugs? I thought you were finished with all of that!". I've come a long way since the days of chemo and radiation. But It's still a struggle! I put on a brave face everyday, because - quite honestly, what else can you do? It's amazing that when the visible signs of cancer treatment are gone, people think you are JUST FINE. Thanks for letting me unload here.
I saw that one of the side effects of Aromasin is hair loss. How common is this? Has anyone experienced this? I'd like to know what to expect.
Thank you so much for your support!
Nancy
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Nancy,
I haven't experienced hair loss; my hair is still coming back from chemo, and it's flourishing. Now, my eyelashes are still thin and sparse, but I'm not sure I can blame the Aromasin for that. Hope that Aromasin is kinder to you!
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