Life on aromasin
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I too am doing much much better on Exemestane but everyone is different. Some folks just need a month break from the drug and then do better.
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I'm doing much better on Exemestane, myself. I was on Arimidex for about 18 months and it made me miserable. The Arimidex cause me horrible bone pain, exhaustion, joint pain, hot flashes, and I walked like an 80 year old woman. Also diagnosed with Osteopenia while on Arimidex. I could barely climb into my bed at the end of my school work day. I actually put in for early retirement while on Arimidex--didn't know how I could make it through each day-forget years. When my Onc talked to me about changing the AI to Exemestane; I did not think it would work. I reluctantly agreed and behold--the only thing I deal with now is exhaustion and some bone pain. My Para was diagnosed with BC this summer and she is on Arimidex. Her main complaint is exhaustion but none of the other problems yet. I guess it is different meds for different folks.
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Hi ladies,
This may not be the right thread for this, but just wanted to check to see if anyone has had these symptoms. For the past year I've had nausea in the morning - also a sore throat throughout the day. My PCP sent me for an endoscopy and to see an ENT. The scope was fine. My ENT said it's probably acid reflux. I took Prilosec to see if it helped with the nausea and it did, but then quit taking it due to all the bad things I read about it. An RX for magic mouthwash took away my sore throat. I've been trying to work on diet and lifestyle factors for the acid reflux. But the weirdest thing is most recently I had some tiny sores on the side of my tongue along with a burning sensation. The ENT said it was "burning tongue" which postmenopausal women can get due to hormonal changes. Great. The mouthwash took care of the sores which were inflammation of something or another. I had blood tests to check my thyroid and my blood sugar. Since they all turned out normal my ENT wants to do some more blood tests. Fortunately the burning tongue seems to have gone away, but my tongue still doesn't feel normal. It's like my taste buds are out to lunch. UGH.
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BC101, sounds like you have had a rotten time. The only help I can contribute is that SE's do not always present directly after starting a medicine. They can occur years into it. Best wishes to reaching some understanding of what is happening in your situation.
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Thanks feelingfeline. My NP had said otherwise, but she's a nurse, not a wizard, lol! Maybe I'm just getting old. If hearing goes, taste must go, too. That's okay. I'll settle for just being old over having cancer any day.
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bc101 I had reflux issues before diagnosis. I handle it with diet. Don't eat late and never lie down after eating. I can't eat strawberries anymore. When I do have an issue I occasionally take Gaviscon (recommended by my Gastroenterologist.) Prilosuc never worked for me.
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I have general heartburn and Pepcid works best for me. My MO recommended Gaviscon but Pepcid helps me more.
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Thanks for the suggestions, ladies. I'll put them on my shopping list.
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bc101 some general tips for reflux are to sleep on an extra pillow and add small wooden blocks under the legs at the head of your bed. if the heartburn is worse in the morning then elevating the head of your bed may be helpful
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Hooray, even though I still have at least a year left on Aromasin I might be able to obtain some life insurance coverage!!! Not the lowest pricing but I'm more than happy in a year to get a new policy with better premiums and coverage and drop this one. Hoping all goes well. I'm only eligible because the BMX was done 2/2012 so I've just passed the Four year requirement for Cancer history.
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As for the side effects of the AI's. I started on the Arimidex. Too painful in my joints and my brain fog was really really bad. Switched to Aromison. Joint pain was awful. Then went on Femara. I've been on it for almost 6 months and so far so good. Very little side effects. Don't be afraid to try a different AI. The side effects are different for different people. Good luck.
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I agree Cwayman. Letrozole (Femara) is a tad better that exemestane was (at least so far and I am on month 3) so am hopeful I can stick it out because aromasin near about killed me. I was in waaaaay too much pain. I am not saying no pain with femara but a little better for sure (at least so far) so try others.
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And I felt Exemestane is 200% better than Anastrozole. Never tried Femera though
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Same here - I switched from Anastrozole to Aromasin. I've been on it for over 3 years now and it's working for me. But just recently I started having terrible joint pain and stiffness. I don't think it's related to the AI. After a bout with my so-called acid reflux, I started having strange problems with my tongue, including sores, pain, loss of taste, and a burning sensation. My ENT thinks it's "burning tongue syndrome" related to being postmenopausal. She is probably right, but I am over 10 years into menopause - so why now? Just to be sure she is ruling out auto immune disorders with a series of blood tests. All came back negative except for the anti nuclear antibody (ANA). I looked at my test results online over the weekend and now am waiting on pins and needles for the doc to call next week to tell me it's nothing to worry about.
Just curious if anyone else has heard of or experienced "burning tongue"?
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hi everyone. Just want to chime in with this reflux issue. I have had it even before i started the als. I am not sure what caused it to get out of control maybe all the stress that our unwanted visitor (cancer) caused. My symptoms ranged from pain in my mouth, severe burning tongue , sore throat and even sores in my tongue. I saw my GP who said it was nothing than i went to my MO who look in my mouth and said oh its not ca and the als are not causing it. I went to ENT and he said "burning tongue syndrome" did blood work and all was neg. So i finally decided to treat myself. I started to take over the counter prilosec 200mg in the am., and 150 mg of zantac at night. This worked very well for me. Bottom line, it is probably Gerd . Went to my Gastro and he confirmed it. Now waiting for an endoscopy. I just get so upset with these doctors. They should just say they are not sure what it is and sent you to another doctor. I went to all the above doctors on my own because no one had an answer. Now i want them to look in my stomach to make sure there is nothing going on there as the mind can go to dark places.
bc- hang in there - like you i am about 10 years postmenopausal. So how could burning tongue syndrome appear just like that..???
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Jesika,
Thanks so much for responding!! It sounds VERY similar to what I'm experiencing. I actually started out with an endoscopy which didn't show anything. My ENT and my PCP both told me to take Prilosec, but I was hesitant because of the latest buzz about PPIs these days. They are safe to take on a temporary basis only. I'm working on diet and lifestyle factors and it's helped with the sore throat and nausea. I do not have heartburn, so I was skeptical that I even had GERT, but I most likely do. I'm still waiting for the results of all my blood tests.
How did your Gastro doc confirm it?
P.S. I agree that stress is the culprit. I have been under a tremendous amount of stress since my DH was dx with throat cancer last summer. I was his full time caregiver during his very difficult treatment and recovery. Mom has Alzheimer's and our lives are topsy turvy right now. I'm trying to control my stress with Yoga, meditation, and psychotherapy. Hoping things will settle down soon!
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I don't get reflux often (except when I was on chemo). For occasional reflux I find Gaviscon works great. My gastroenterologist recommended it. It's OTC.
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Thanks, Lago. I have it on my list of things to buy at the drugstore.
One tip for anyone who is suffering from burning tongue. My ENT said that patients have told her that Thieves oil or Myrrh essential oil works. I haven't tried it. I'm thinking you have to find a brand that is food grade and that you put it right on the tongue?
I've been goggling a lot and somewhere I read that among other things including stress, burning tongue is caused by the HSV-1 virus - the same one that causes cold sores. I suffer from this, too, and just before the burning tongue symptoms, I had a really bad outbreak and then a couple weeks later, I had tiny sores on my tongue followed by the burning sensation. But, who knows.....If that's the case, it's treatable with anti-viral meds and that's easy enough. Maybe I'll try taking some the next time I get that feeling.
For GERD, I read that taking 6 mg. of Melatonin at bedtime works. I did this for awhile and it seemed to help, although my GERD symptoms seem to have subsided and I have no idea if it's something I did. I think for me avoiding tomatoes and oranges seems to makes a big difference. Oh, and I haven't tried the elevated bed trick yet, but that's on my list, too.
Anyway, sorry to intervene on the Aromasin thread! Maybe I should start my own!
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bc101 just avoid eating close to bedtime or lying down within an hour or 2 of eating. It makes a huge difference. Also stay away from consuming chocolate and caffeine too close to bed time
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I agree - those are really good tips! I used to think I had to give up chocolate, something that would be impossible for me, but my ENT said just eat the really GOOD kind. And yes, no laying down after dinner and no eating close to bedtime helped me, too!
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My MO recommended Gaviscon but I found Pepcid works better for me.
My body feels achy at times but I can live with it. My hair is thinning but I still have plenty of hair.
I can deal with an awful lot as long as it isn't cancer.
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Hello everyone...I haven't posted in a long time - I was dx in 2011 - had bi-lateral mastectomy followed by chemo then tamoxifin for 1 year - then had a hysterectomy and put on Femara. Had a terrible time on Femara - ended up with a torn meniscus and trigger fingers. Had surgery on my knee and thumb. My onco moved away and was placed with a new onco. I told him i was having trouble from the Femara and he told me i no longer needed an AI since i had the hysterectomy. Have been off the AI since 2013. Both my oncos were old men. I decided to change to a new, younger female onco. She was very surprized i was taken off the AI and wants me try Aromasin. I have the script but i am too afraid to try it. Any words of encouragement gratefully needed! I am glad to read that some have had problems on one AI and are better with other ones! I have never had joint or bone problems ever until Femara and the minute i got off of it I was so much better. I don't want to go down that road again!!
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Sheri,
Everyone responds to meds in their own way. Many women on aromasin experience the same joint problems and trigger fingers you suffered through on Femara. However, some of us are doing OK. I've been on aromasin for over a year now, and my side effects have been minimal. At first, I was getting some serious hot flashes, but those have waned. I was also really moody, so I went on Celexa. Other than that? I've been fine. I have no joint pain, and have never experienced a trigger finger. I guess you could try it, and see if you suffer those nasty side effects again. If so, you can always stop taking it. Maybe MO would let you take Tamoxifen??? Some find that med to be gentler than the AIs.
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I've been on Aromasin for almost 3 years now. I haven't had any issues other than the usual side effects of being estrogen-deprived, which you would experience with any of the AI's. I started out on Arimidex and could not tolerate the severe joint pain it gave me, so was switched with no break in between. Aromasin seems to be working just fine for me. Personally I would not be afraid to try it. If it doesn't work out, you can always try something else.
Best of luck to you!
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Hi, SheriBell, I have taken Aromasin for almost 10 years, next month is my 10 year anniversary !! The side effects have been very tolerable and it has kept the cancer away!! I may stop in April, depending on what my onc wants me to do! I know I have to have another bone density scan and blood work done😏
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Sheri I was on Anastrozole (Arimidex) for 3 years till I finally gave up. My MO urged me to try Exemestane (Aromasin). Been on it for 2 years now. Big difference. I couldn't even stand up straight on Anastrozole. They told me I lost an inch in height. When I switched that inch came back.
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Thanks so much, Elaine, bc101 and Kindergarten! I took my first pill last night before bed - I am about 14 hours in and so far so good - lol Did I read somewhere that fish oil can help ease joint pain? I may start taking that. Anyone have any supplements they take and really like? I am on calcium and D3 but may incorporate the fish oil also to help prevent joint issues.
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Yay! Good for you for starting!
I take fish oil, but it was prescribed for my high triglycerides. Every woman here should be on Calcium and Vitamin D3 supplements. Not sure of any others. Always be sure check with your MO before taking anything - that's the general rule I follow.
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Ginger, turmeric and magnesium for joint pain and hot flashes. Vitamin D to help prevent recurrence. Fish oil for heart health. MO asked that I not supplement with calcium since I do drink milk. He feels it can deposit itself in your arteries and cause other problems. But I'm on Tamoxifen, not an AI for now, so I don't have to worry so much about my bones.
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Compared to Arimidex, I find Aromasin to be completely do-able so far. I'm grateful. I had joint issues, trigger finger joints, bloating, weight gain and mood swings/fatigue on Arimidex; all resolved themselves after I switched to Aromasin. I wish for the same experience for you!!
Claire
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