Life on aromasin
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Arya,
I have relatively mild side effects from Aromasin (hot flashes and depression), but I feel better now that I'm on Celexa (SSRI). I have no idea whether they will get better or worse in the future. I'm sorry to hear Aromasin isn't an improvement on Arimidex for you. Has your MO suggested any meds to mitigate your side effects?
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Thanks for your reply Elaine. No. My MO is kind of a jerk about the side effects. She said that none of the analgesics like Tylenol, Advil or Aleve really help with pain. She just keeps telling me to exercise, like exercise is going to make my mouth and teeth stop hurting. I am sick of being treated like I am stupid for having known side effects. I think it's time to look for a new MO.
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OY, Arya!
I agree that it's probably time for a new MO! My MO hands out prescriptions like candy. While I only take Celexa, she's always asking me if I have any SEs or any problems that she can help me with. I'm 95% ER+/PR+, so we both know that I need to be on hormonal therapy. If a prescription or OTC med can help me stick with the program, MO is happy to make some suggestions.
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oh dear, sorry that you are having such side effects. I have tons of allergic reactions to meds but did get through my 5 years on AL
find a new MO, the internet can be a great source to research out docs these days, best wishes
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AryaS my MO didn't seem to acknowledge certain side effects coming from the drugs especially the emotional ones. When Exemestane gave me anxiety I went to my primary care and explained why I was going to her instead of my oncologist. She understood and treated it. My primary care is actually impressed I've lasted on the AIs for so long. (3 year on Anastrozole and 1+ year on Exemestane).
Don't wait to get these things treated. You can always switch MO's but in the mean time go to your primary care.
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Do these doctors think we are just that dumb, or are they trying to make us feel better by telling us it is just menopause or normal aging...I went thru menopause and was on Premarin and felt fabulous...now, I get NO estrogen and it is normal aging..Whatever..
I tell people it is like driving a car with no oil..Doesn't work so well does it..
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AryaS--Is there any chance your MO would let you go back on Tamoxifen if you did ok on it? I had a full hysterectomy with ovary removal back in Jan and my MO is letting me stay on Tamoxifen since I do pretty well on it. My BS was quick to let me know that Tamoxifen definitely causes more SEs than the AIs and I should stay on it as long as I can. So for now, that's what I'm doing.
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April, I feel the same way, i sleep well now, feel like my old self, have 90% less pain, more flexibility, think clearly, more optimistic........i took myself off exemestane, 6 weeks no
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I had my oncology checkup yesterday. I was talking to the dr about some hip pain I have had from Bursitis and she asked if I had considered that it might be from the aromasin. Imagine that, a doctor not only acknowledging that possibility but actually suggesting it!
I am doing much better on this drug than I did on letrozole so I am not interested in switching. I was just encouraged that my dr brought up the issue. Hang in there...
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lala1, unfortunately, Tamoxifen made my face and hands and feet swell and I was sleeping about 16 hours a day and had horrible brain fog, and asthma, I almost forgot the asthma because it's been under control since I stopped tamoxifen. I could not breathe and was seeing a pulmonologist. Tamoxifen was not working for me. I tried living like that for eight months and gave up.
I just do not seem to tolerate these meds well...but I keep on trying.
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I'm on a vacation from hormonal meds right now. My 5 months on Tamoxifen left me feeling in a complete haze. My 2-3 months on lupron + exemestane had me just completely messed up joint-wise. the only way to be even slightly limber was to continually be on the move. I was putting in 10 miles a day (>20,000 steps) and that was just to feel half way normal (plus, yes, gaining weight the whole time!). The morning I woke up with the joints on my feet so swollen and painful I couldn't put my shoes on was the last straw. I had my last lupron shot in July but then just quit the pills. I have been taking celebrex off and on and am finally starting to feel human again. It was honestly just too much. My MO basically said it was up to me and I told her I was done for a while. I am going to try going back on tamoxifen next month. My idea is that the first two months or so on tamoxifen were pretty good and things didn't start really going downhill until I was also doing radiation and recovering from radiation. Maybe that was not a fair chance for tamox? Anyway, my new back up plan is to have my ovaries & tubes out perhaps next summer.
I am a hardy girl who has a very high tolerance for pain. I am a midwesterner who doesn't believe in letting things get me down. But I couldn't tolerate what those pills did to my joints. I just couldn't do it.
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Professor50,
Sorry to hear that Aromasin became unbearable for you; you shouldn't feel any guilt for quitting. If I were diagnosed at Stage 1A and had no nodal involvement, it would be hard for me to stay on hormonal therapy if it became too debilitating. Weighing the costs and benefits, it just wouldn't be worth it. Best wishes!
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Switched from anastrozole to Aromosin a month ago. No difference. Knuckles continue to swell, hips hurt to lie on side, stiff and creaky. Not sure how long to stick with it before trying Femara
I'm 62 but before BC I could actually do somersaults. I work with children and showed them how This was 13 years post menopause. Now I can't tie my own shoes and have difficulty getting out of a chair
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Chloesmom, I had the same experience. Switched from Arimidex because of the joint pain and stiffness. Was OK on Aromasin for a short while, then all the joint problems resurfaced. Know what you mean about hip pain at night. Two smallest fingers on right hand are stiff and almost useless,
My MO said Femara is chemically very similar to Arimidex, so she feared I would not get any relief from Femara. Maybe your experience will be different. If so, let me know!!
Like you, before BC I was supple and able to do yoga with ease.
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annieb4, that is EXACTLY what we feel like when taking these pills...a car without oil! None of the parts seem "lubricated" enough when we try to move them. Our legs (like pistons in an engine I imagine) need lubrication when we move the knee joints, ankles etc. and now it feels like they don't have any. When you see a really old person walk (someone in their 90's or so) they often move very slowly and seem to be struggling (not always as there are some very limber 90 year olds of course) and that is what this drug makes me fell like. I just turned 60 in April. I should be able to walk and move and feel decent enough. Instead, every movement seems like agony on this drug. I actually find myself letting my bladder get REALLY full before I get up to go to the bathroom cause that involves a decent walk at my house when I am in the family room as the powder room is at the other end of the house.
Now that I am on vacation, my bladder is very happy! So am I!
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LOL. My bladder is telling me to get out of bed but my legs are saying it's too much work
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Amen Chloe'smom! I did the same thing at night. Now that I am on the exemestane holiday, I don't mind getting up to go to the bathroom! I have a master bath connected to my bedroom but I STILL found it a pain to go at night due to the stiffness after being in one sleeping position. It took a few minutes before I could even walk (with a cane!!) to go about 15 feet! What does that say about joint pain from these drugs? For me, it speaks volumes. I hate having a full bladder! I usually will go even just a tiny bit since I got older. On the AI, I let her fill up as much as I could stand! YIKES! LOL
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Chloesmom, Wavewhisperer, april.... Wow! That's some serious joint pain. I don't blame you guys for thinking of quitting the AIs. I have a tiny bladder, and always seem to need to go. I wouldn't want to ignore nature's call just because I'm in pain.
For ladies whose symptoms are far milder, I've found swimming to be very helpful to me whenever I feel a little creaky. In fact, I now swim daily and feel more energetic than I have in a long time.
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I've been on Aromasin (exemestane) for six months and the SEs have definitely leveled off. I just get the hot flashes and joint pain (mainly in my knees), but nothing yet that would make me stop taking it.
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takes me a few mnutes to stand up and get moving leaving a restaurant. My hips and knees get stuck in a flexed position and creak as I try to straighten up and get my feet going. Quite a contrast for a lady who could literally do somersaults a year ago
Still not quitting the AI!
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Been taking Aromasin (exemastane) since July 12. Took a month off from letrozole because of aches and pains. Nights were the worst as legs just ached and then I would fall asleep exausted. It took just 3 weeks for aches to reach former peak. Spoke with my general practitioner and he recommended that I take Co-Q-10 and then take a benedryl before going to bed to help me sleep. No relief as yet, but at least the benedryl makes me have a calm sleep and I seem to feel more refreshed in the morning. If I could move 24 hours a day, my joints would not hurt! I'm only going into my 3rd year on meds started with anastrozole but was allergic - itchy face & eyes. Trying to do my best but argue with my self all the time about quality of my life.0
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I just don´t know what to do...........
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Has anyone had any issues with a high bilirubin on exemestane? I thought I was doing great until I had routine blood work done and this showed up after 4 months on this med. Now an ultrasound is booked for tomorrow. Previously I was on tamoxifen and had an allergic reaction..
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I have high bilirubin, but have had it prior to starting exemestane. My last test was very high though.
What are they doing ultrasound on?
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I, too, have had high bilirubin, but for years. I have a benign syndrome diagnosed by my gastroenterologist, who himself had it.
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Pheasantus, as my primary doc says, our pain comes awake at night. My shoulders, knees and hips hurt like heck. I take 1 mg Klonipin to sleep, plus 2 Extra-Strength Tylenol or 600 mg Gabapentin to help with the pain. I wake up in pain after about 6-7 hours. I started Co-Q-10 but have not noticed any difference. My MO also suggested upping D3 to at least 4000 units a day. Awful, isn't it??
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My bilirubin has only spiked since starting exemestane. Today I had a abd ultrasound to check the liver and gall bladder, and I just heard all was well with that. I will have more blood work in a couple of weeks. I just feel like I am always on edge, afraid BC will come back...
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How high is anyone's who would like to share?
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I've been on this drug (switched from evil arimidex-evil for me, anyway) for about 5 weeks. Side effects of joint pain, bloating, and mood swings have lessened. Fingers crossed.
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Hi friends,
Its been awhile. I'm ok but still feel like a faded version of my old self.
I am entering a study group. A medical university is doing a long term study of the life of BC patients after treatment but before recurrence.
The point being that those years are sort of lost . I have to agree to blood work, sharing the tumor tissue sample, and a great deal of personal questions. I will gladly do it.
I ought to refer them to these boards if they want to know how women feel.
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