Life on aromasin
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I'm still here! Coming up on my two year Aromasin anniversary. Only eight more years to go!
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I get along pretty well with exemestane. I can live with some hot flashes and minor joint stiffness/soreness. I only have insomnia occasionally.
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I've been on exemestane/Aromasin and zolodex for 8 months now. The joint stiffness has been pretty bad. My doc told me last week that I shouldn't try to keep running because between the drugs and the forced menopause, my joints aren't being lubricated. I'm super bummed as the only thing really keeping me going was the thought of getting back into running shape after all this cancer silliness. I'm still hoping that the joint stiffness will go away. Has anyone had luck with Claritin or ginger in relieving the stiffness?
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Hmm, no experience with Claritin or ginger, but I've found swimming to be beneficial for keeping me limber. And, I should note, I'm not a particularly talented swimmer. I just do laps of what I can do, that's it.
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I've been on Aromasin + Zoladex since November and joint pain is easing finally. I find that the more active I am, the less I hurt. Mornings still suck, though.
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I have been getting Zoladex injections since July 2016 and aromasin since September 2016. I only notice hip stiffness after sitting for extended periods and it goes away after walking across the room. I have noticed that my walking everyday really helps. I only took Claritan while getting Neulasta.
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I ran a 5 K last week and I have never been a runner. I am feeling much better than before the training. My joints aren't as sore. I plan to start swimming as well. I take D3, calcium magnesium and zinc combination, K2, B vitamin combination, and Biotin.
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I'm still doing Tamoxifen and had lots of joint pain on it but found the turmeric and ginger helped get me back in the gym. I've found the more I move, the better I feel, within reason of course.
And a couple of days of yoga instead of the treadmill or elliptical definitely helps. 0 -
Hi ladies of Aromasinville,
How is everyone? I'm still here trying to figure out why my knee joints seem to be the only joints affected. I now sit down and stand up in slow motion. Really hard work when trying to get off a crowded train during rush hour.
I thought of skipping my pills a couple times a week but too scared to try that as an option. I do work out on an elliptical 4 or 5 times a week. Not sure if that is making it better or worse.
I think I'll just keep my home in Aromasinville for now and try to find some options for knee improvement.
God bless
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Opt4lLife - Like you, my joint issues have been primarily limited to joints in one region of my body (upper body joints and muscles, in my case). Who knows why this is - but maybe you'll feel better knowing you're not the only one! My issues also didn't show up until I'd been on AIs for 1 3/4 year, unlike many women's experience. Clearly, there is no one size fits all with this - just like cancer.
I doubt that skipping the pills a couple times a week would make a worthwhile difference in side effects. Please hang in there with your workouts and the pills. Maybe consider varying your workouts so you're not on the elliptical quite as exclusively (if possible). I've found that helps in general, although sometimes you just don't have any choice, do you? Good luck with it all.
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Hello everyone. I've tried tamoxifen, had too many side effects, had ovaries removed to force menopause ( I'm 51), then femera. Hot flashes/night sweats are expected and I can manage, the joint pain- not so much. My onco took me off femera for 4 weeks and hope to try aromasin next. All joint pain relieved except for my wrists, it's still pretty bad. For those of you on aromasin, do you find joint pain is better? I am an avid exerciser, had to give up yoga due to the wrist pain, but what's worse is just the inability to do everyday things - typing, picking things up, etc. all recommendations appreciated.
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Hi all,
Thank you for sharing your experiences. It sounds like supplements such as Vitamin D are an absolute must, and that exercise helps to relieve joint pain for most women. Your stories inspire me! I added Omega3s too. I also found a local acupuncturist and she has helped relieved pain from the MX so maybe if joint pain is an issue I'll seek her help
Jodie- I'm sorry to hear that your yoga practice has suffered!
I've been on Lupron since 11/11/16 and will start Aromasin soon. Does anyone have a sense of how long they'll receive injections for ovarian suppression? My MO said he won't be testing my hormone levels.
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This doesn't help answer you I'm afraid, just lobbing it in there, but my MO does a regular blood-test for FSH (follicle simulating hormone) to confirm I am still post menopausal. It is no big deal I get it done at local GP (MD in USA). This is because AI's are recommended for post menopausal women. I was put propelled into chemopause at 44 by the chemo (now 49) so he does keep an eye that I am still where I should be. I would guess it might be worth looking to see if there may be a Lupron thread somewhere on BCO as you will get some answers there. (try the search over on vertical menu, it's on the left hand side if you are on a PC) Also never forget you have a perfect right to ask the MO this question. It is your treatment. XXX
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Feline- that is a big help- especially to know that it's FSH that is tested. Thanks for the suggestion to check Lupron and AIs thread.I have talked to some women- they're in for the long haul. Monthly injections for years. Bleh!
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My joint pain on aromasin is in places I had issues with before my cancer diagnosis (knees.) They are definitely worse, but I don't notice other general joint pain. Exercise definitely helps and my knees are really only very bad after sitting a long time.
Lupron- I am told I am on it likely for a decade (I am 40). I am opting instead to do an Oopherectomy to insure that I don't have excess hormone activity and to avoid a decade or more of a monthly shot. They can somewhat measure that you have achieved menopause, but hard to know when its time to go off the Lupron.
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I was admitted at the hospital because of this crappy drug,
I took it for 3 years and 4 months. I started having left hip pain and pain on my lower back for about 3 months, last Tuesday I started limping and on Wednesday I could no longer walk.
I am only 40 Years old.
This drug lowered my immune system and I got a bursitis that ruptured and went systemic into my blood. I am going to be in this hospital doing antibiotics IV and pain killers for weeks.
I cannot longer take care of myself, my 5 year old daughter,my job as a dentists.
Be careful with this crappy drug
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Srh, I am so sorry to hear that you're going through this. I don't even know what to say; being unable to take care of your daughter must be heartbreaking for you. I hope that the antibiotics get you through this safely.
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Srh, I am sorry you are dealing with so much and unable to care for your daughter.
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Srh sending best wishes for your health and healing XXX
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Hi All, I'm new to this and not sure if this is the right forum or not.
Please let me know if another forum would be better suited for me and my issues.
My breast cancer seemed like it was going to be easily manageable, lumpectomy, radiation, and medication. Surgery was ok, radiation kicked my ass, recovered for the most part after a few weeks, but the AI medication is intolerable.
I have tried the 3 my MO suggested, and I'm having major joint pain, muscle soreness and fatigue issues, along with brain fog. I do have many conditions, pre cancer diagnosis , that also gave me those symptoms, along with menopause symptoms, but the medication has brought all of those to levels that leave me barely able to function. I'd like to know if anyone else has had such severe side effects, and what if any options there MO offered them. Although my risk for reccurence is low, the doctor still feels strongly that I should be on the medication.
I'd appreciate any feedback and welcome any questions, as I desperately need to lessen my pain levels and fatigue levels.
Thank you
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Hey there lookin4relief, I have been on 2 AI's, letrozole and exemestane, they were causing many problems, not just QOL but others health issues as well. My MO switched me to tamoxifen 2months ago, I was never aware that tamoxifen was an option. I'm doing ok on it so far, seems to be gentler on me. Maybe tamoxifen is an option.
LAF
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Laf is right; tamoxifen is another option, even if you are post-menopausal. Talk to your MO about switching to tamoxifen; many women tolerate it well.
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hi ladies,
thanks for the input, but looking at tamoxifen, it has a long list of side effects too. and the blood clot side effect worries me. we lost a family friend to that when she was on tamoxifen. for whatever reason, that is not one of the drugs my MO recommended. i tried arimidex, femara and now aromasin. all had similar side effects - joint and muscle pain, fatigue, brain fog, and vision issues. like i said the aromasin is the lesser of the 3 evils but still horrible. i can't imagine doing this for 10 yrs.
any ideas on alternatives to the medications for stopping any estrogen production? otherwise, i may have to discontinue the med and just let nature takes it course.
thanks again for the feeback.
take care
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lookin4relief- here is a recent study from another thread. 10 years may be superfluous-
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I was on Aromasin for about 6 months and had terrible back pain. My oncologist changed me to Femara which was like having the flu every day. After two months I went back on Aromasin and now have wrist, knee and hand pain, fatigue and trouble sleeping. It will be a year in March since I started hormone therapy and I am pretty sure it is for ten years.
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hi
thanks for the link, obviously there are many thoughts and opinions on this therapy/treatment. i'm thinking one of the reasons my MO recommends 10 yrs, is because of my mothers history. she had stage 1, non invasive, lumpectomy, and tamoxifen for 5 yrs. once she stopped that, within 3 yrs she was diagnosed with stage 1, invasive. had lumpectomy again and radiation.
don't know, as there are so many variables. but my pain levels were bad before this medication, now it's beyond miserable. i feel like i've aged 15+ yrs. i just don't know if QOL should rule over the percentage that this is supposed to reduce the risk.
Thanks again for the link/info.
take care
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lookin4relief- I'm sorry to hear that you're suffering so. I know how you feel about being in this for the long term. I, too, follow my mother into bc territory. Things were different twenty years ago when she was diagnosed, but she is still alive and well today so something went right with her treatment plan. I hope something new comes along that doesn't cause such dreadful side effects. ((Hugs))0
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Falconer....just want to agree that I hope better treatment options are available soon. However I feel we need to speak up about QOL issues and not just silently suffer. Too many docs don'y validate the SE's and many women don't complete the recommended treatment time. Of course we all want to live cancer free but we also deserve to live without serious SEs of treatment. Good luck to all.
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Have you tried Arimidex? I know so many women who were sick sick on Aromasin with SE, but when swapped to Arimidex did a lot better. I was the opposite.
I hope you find a solution. And I wish that we could find something better than all these drugs that cause us so much pain and struggle.
Hugs
C
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Truth
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