Life on aromasin
Comments
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My doctor tested me for that when I explained my symptoms, particularly because I live in CT where "Lyme" is located (we were the first State with this issue thus the name given to the disease) so deer ticks are very prevalent. I did not have a rash but she wanted to test anyway. It was negative. So, it is most definitely the exemestane in my case...sigh.
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april, not sure if good or bad but at least you were tested and can narrow that down
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Has anyone tried the Gin Raisins for arthritis symptoms? I read about these on Facebook--you take a box of golden raisins, put them in a bowl, cover with gin, then place a paper towel or paper plate on top and let them sit for a week. The ingredients (juniper berries in the gin mixed with the raisins) are supposed to help alleviate joint pain. I have a batch soaking.
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Les---lots of folks here have done the raisins and it seems popular
I just stopped at discount store for Biofreeze which someone told me is great on pains so let me see how that works
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Proudtospin, I use Biofreeze on my knees. I'd rather use the topical gel than take more pain medication. It works pretty well for me--and doesn't have a lingering smell like Bengay.
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Les, the achie back liked the Biofreeze~ not sure about the feet yet but the back certainly did
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I just learned about a new pain cream--it's a medical marijuana application. the THC is added into a cream and you apply it topically to joints, etc. An artist friend of mine who was in a rear-end car accident swears by it. He let me try it on a university camping trip and perhaps it made my wrist feel better??? Or a placebo effect? Anyway, I'm sharing for those of you who live in a state with relaxed laws; if you can get over the smell (still smells faintly like weed, an odor I never liked).
The gin-soaked raisins have been used by others (see the arimidex board) but the whole process sounds awful to me. I dislike gin and only really like raisins in my oatmeal cookies
Claire
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so I just read a facebook posting by my nephews wife, she has been certified for medical massage.....oooh I need to have a visit from her! or me to her
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Good morning,
I started Aromasin in March. Bone density was good then. I'll check it again soon. But whatever it may be now, I'm considering taking a bisphosphonate to prevent bone loss, and possibly help prevent bone mets. Could any of you tell me if you're taking a bis, and if so, the type, dose and your experience on it.
Regarding the joint stiffness, I have some of that. So far I've handled it by working out nearly every day - a combination of aerobic exercise, usually on an elliptical, yoga, and weights. I still have some stiffness, but it's manageable. Thanks for posting all of your suggestions, those may come in handy. I really like the medical message idea!
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nottoday it wasn't till I was diagnosed with osteoperosis did I start bisphosphonates. I started with Fosomax but it gave me reflux (no surprise. I've had the issue before but I do go on the pills before my insurance would cover one of the infusion/injectables). I'm on the Prolia shot 2X a year. Just had my 2nd shot in April. So far no issues.
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Thanks, Iago. Glad you're doing well with the Prolia. I just read a study about it, showed a big reduction in fractures.
Also, congrats on coming up on your 5-year milestone.
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Thanks. It must be working. I had a huge fall in May. Ended up with 3 stitches on my chin. Nothing broken though. I was pretty sore.
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Went to MO today. After 3 months on anastorzole she is switching me to aromasin. My fingers are a mess, knuckles swollen so I can't wear my wedding ring and it hurts to type. I'm hoping that the SE with this stuff won't be as hard on my body. Trying to read old posts to see what to expect.
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I have been on aromasin a little over 3 months now. I was on arimidex and the joint pain was too bad. Plus the brain fog was super bad. I have a bit of the brain fog back, but not as bad. The joint pain is getting me tho. My MO wants me to try going off celexa after being on it for over 20 yrs. , plus I wouldon't have to stop taking elivil for sleep and migrains, and try Cymbalta. I was also thinking about being part of a study where I might be getting the Cymbalta or I may be taking a placelectric and not getting any med. If I get the med, and it works, then I would go back on it. Or I old just go on it and not be part of the study?
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I switched to Exemestane (Aromasin) over a year ago. So much better physically.
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I am still struggling mightily with joint issues from exemestane. All my rings are off and this seems like it is a semi-permanent condition.
I cannot walk downstairs like a regular person, I have to take them one at a time. This has been just a really challenging time. I thought that a drug that did not affect my thinking was most important to me. But I did not think about the issue of being constantly distracted by chronic pain. My MO prescribed celebrex and I took my first dose yesterday. If I could cross my fingers I'd be hoping this works. If not, I guess I'll try a different AI. I cannot live this way for 10 years. Come on celebrex!0 -
Professor, I can totally relate to your post. I just switched from Exemestane to Letrozole last month due to my left knee swelling so much that I could not bend it. My wedding band and engagement ring hang on a necklace... For about 3 weeks my pains and swelling were reduced on Letrozole... Now they are back. I would love to hear how/if the Celebrex helps. I don't want to try Anastrozole, but I can't continue to live like this -- leg swelling when standing and headaches are the worst SE's for me (the pain is annoying but I have suffered with back pain for many years). I was fine with Tamoxifen; however AI's are thought to offer better prevention for ILC. You have been on Aromasin for many months -- I only lasted 3 and 1/2 months. Kudos! Again, I will be very interested in hearing how Celebrex helps. wishing you pain-free days!
Lago - glad that you have found your match!
Cwayman - I am not sure tat I understand your choices; however, I hope that you find the best combo for you.
Chloesmom , I think that each of us has a different reaction to each of these AI's -- here's hoping that Aromasin works with minimal SE for you!! The swelling and pain in your hands sounds extreme -- there has to be a better solution. Pray that you have found it ( Lago did!)
Nottoday, I have received Zometa infusions every 6 months (unsure of dosage) since original diagnosis as a preventative for recurrence (do not remember what trial results my oncologist referenced). I was on Tamoxifen originally with Lupron injections and Zometa. After SOFT trial results, my oncologist recommended an AI for better results preventing recurrence for ILC. Now that I have had my oophorectomy (stopped Lupron) and begun taking AI's, I am relieved to be on the Zometa. I have had no issues with bone density YET and no SE besides a little fatigue from the Zometa infusions (some others have a few rough days?). I drink a lot of water the day before the infusion (rec on BCO). I already take Claritin, which some have suggested. I take tylenol just prior to infusion, just in case, because others have suggested it helps. No issues. Back at diagnosis, I read some results that showed Prolia providing even better prevention of recurrence than Zometa; however, it costs more... My insurance would not cover... Hope this answers some of your concerns.
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I just realized my signature is unclear. I actually was on tamoxifen for 6 months (starting in December), then switched to lupron+exemestane in May. I switched because of the cognitive side effects. I was simply not getting any work done (I teach at a university). Anyway, so, I took about 3 weeks off and then started up with this new regimen. But it is REALLY hard going. Trying to be patient, stay active, and believe in celebrex.
(things that have not made even a tiny dent in this pain for me: tumeric, ginger, fish oil, calcium+D, magnesium)
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Professor - I can relate. I literally just got off the phone with my MO's office after sending him a very long winded email about my pain and swelling. My feet and arm are killing me and the right side of my body is swollen. They have me stopping the Exemestane for a 2 -4 weeks to see if my symptoms improve. They said if they do improve we will have to figure out a new plan. I'm not sure what the new plan would be, I am just hoping we can figure something out because this is crazy!
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daisylover I'm not saying I don't have issues. osteoperosis and some other SE handled with meds but much better than Anastrozole. BTW I'm from the Boston area, S. shore. Where in MA are you from?
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professor- I have found that Celebrex and neurontin along with regular exercise have made a big difference for me.
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Thanks Ginger48! I am finding that the celebrex seems to be taking the edge off the pain. I am trying to keep to 20,000 steps a day. Hanging in there!
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Guess I'm a bad girl. I stopped my aromasin a few weeks ago. I couldn't handle the sweating all the time and my bones, I felt like I was 100yrs old. I see my MO in a few weeks don't know what she's going to suggest. I just couldn't take it anymore.
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rettemich, you are not a bad girl!! This stuff just plain sucks period for some of us .
I am on an MO sanctioned holiday from the exemestane and I am still having some pain and swelling but it is somewhat better and the brain fog has lifted! I have been off since June 4th so almost 5 weeks soon. I hope the rest goes away!
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Lago,
I have heard that Chicago is a fun city. I have not been there... I am from Bedford, MA.
I just want to find the AI that does not make me feel like I am 80 years old
I need to continue with Femara a few more months... Have you have tried Celebrex? I am wondering if that would be good to ask my MO about? Hope all are having a limited SE day on their AI's... it's almost the weekend
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Daisylover Physically I'm doing fine. I power walk, walk to work and on my feet when at work. But I am only 54 (49 at diagnosis). Celebrex has some serious side effects. If you have liver issues or heart issues it might not be for you.
Nice you are near the ocean. I miss the ocean, and clams!
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I have been on aromasin for almost three months....the joint pain seems to have leveled off...still not good. My question is I am really starting to notice that my hands and feet are swollen all the time...it started out just sometimes...but it seems to be all the time now. My question is does this ever get better or will this continue through the whole treatment? Not sure I can do this for 5 years.
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Daisylover, thanks for your response. I will ask mo about zometa/ prolia at next visit.
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I am on a break from Aromasin too and have been able to walk my dogs every day for the last week, that has not happened for all the time I have been on them, have only been able to do it occasionally not as a regular thing.....such a relief to feel more normal
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MO will suggest taking a two week break from Aromasin if the side effects get to be too much. It took me 2 years to break through the side effects and my body adjusting to this strong med. I was glad I stuck it out.
Then I just took a 3 week break because I had the diep flap surgery in Nola (best thing I have ever done) and now back on Aromasin 4 weeks post op and let the side effects begin...AAARRGGGHH! For me it's not worth taking a break because it's too hard going back on it and realizing its this drug that makes me feel all the joint and muscle ache etc. I also had kidney cancer and there is no treatment for that, it's too lethal. So I will put up with side effects
I will take it as long as I have to
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