Life on aromasin
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Hello all, I have my second bone density scan coming up later this month. My first was normal(2 years ago). I see my Onc later this month also for some testing.
Have any of you been told 10 years on AI's is the latest recommendation? I will ask Onc when I see her.
V
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I have LE in both arms so infusions are out. My gp pretty much left it on up to me to research and decide. I will talk to my onc at my appt next month.
My onc said unless we get a lot more data to support 10 years with early stage bc, I will only do 5.
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I'm back! I started on tamoxifen, then aromasin and when my hair started falling out I tried fermara for 3 months. My hair was still falling out but my SEs were unmanageable. I had extreme bone and muscle pain, my hands swelled to the point that I could not wear my rings and I was about as miserable as I could be. I switched back to aromasin a few days ago and I'm already feeling relief. I'm posting this account in case anyone is going through the same struggle.
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WW glad you are getting some relief from the change. Hope you can continue to tolerate aromasin well this time. XXX
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Warrior_Woman Exemestane was much better for me too. The shedding did stop after a while but I also was already using Minoxidil.
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Hi ladies, I am curious if any of you experienced a drop in WBC or an increase in Glucose on exemestane/aromasin? I have had regular blood work since my every 4 month follow ups started with MO in October. Every test has been normal results, all within the same range. My pre op blood work came back with a drop in my WBC, my absolute lymphs and an increase in my glucose. Nothing glaring as far as fear of infection but nonetheless different for me. The only change is switching from anastrozole to exemestane in late April.
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Anyone have anxiety while taking Aromasin. I've been on it since Sept, SE very manageable, but now I've got this silly anxiety thing going. Don't know if it's the med or the recent cross country move. Any thoughts from anyone??
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Hi ladies, I was on Tamoxifen for 3 months, but then my MO quit and my new MO feels a combined hormone treatment will give me better odds. In Feb I started Aromasin (Exemestane) and Zolodex injections. Just last week I started Zometa IV's every 6 months. Is anyone else doing the zolodex with araomasin? I read though the last few pages of posts and I think one person mentioned zolodex too, but I can't remember. I'm doing pretty well with SE... some mild hot flashes. I am more tired and emotional too. Although, I feel like I am on a lot & going though so much that I don't really know what's causing what. I just had LD flap reconstruction 5 weeks ago, so I'm still recovering from that.
Molly, I looked at my blood results and my WBC actually improved from April-July, while on exemestane.
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Mamaseeta my DH has always felt I have a shorter fuse since hormone therapy (me, I just thought it was my naturally charming personality). The "brain fog" from chemo/tamoxifen/AI's has definitely increased day-to-day stress levels and then the increased stress levels increase chances of "brain fog". Moving house, never mind moving state, is a definitely stressful life event and stress can play into the mix along with the lovely drugs
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Hi ladies, just got my prescription for Aromasin and I start radiation next week. I have no idea what to expect but my MO seems pretty confident that I'll be fine doing both. I hope so but if anyone else has done or is doing the same, I'd love to hear from you.
My MO akso mentioned combining the Aromasin with monthly Lupron injections. But I want to hold off on the injections to see if my ovaries actualky wake-up from chemopause.
Have a great weekend everyone
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Wildtulip,
I'm doing aromasin and zoladex. I started in February 2015. I originally had fairly frequent hot flashes, but those have been diminishing as time goes by. I definitely felt moody and depressed, so MO prescribed Celexa. That really helped me become more even-tempered. Otherwise, I just feel a little creaky. If I sit for too long in one place, it's hard to get going again. But, once I'm moving around, I'm fine. I'm thinking of getting one of the desks at work where you can stand up to do your work. Hope you have mild side effects, too!
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Elaine, I sit for work, and my DH and daughter bought me one of the lift desks for my birthday this year. It's absolutely wonderful! to get up, stretch and do some funky marching to get the blood flowing. My only complaint is that they didn't spring for the extra $ to get the one with the cutout for a keyboard.
I still have numb feet that I didn't have before starting an AI. I'm thinking it actually started when my pharmacy changed & so changed manufacturers. It hasn't gotten any worse so I suppose I will live with it.
Hope everyone has a good weekend.
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Wildtulip, I'm on Aromasin + Zoladex as well (since April). I was on tamoxfen for 10 months, but then my period came back and I thought being stage 3 and my younger age, AI + OS should give me better odds. I have hot flashes, and very mild, random pangs of joint pain. Other than that it hasn't been too bad so far. I also take 2000-3000 iu Vit D and MO recommended calcium as well, which I take whenever I remember. I also take daily Omega 3 and exercise regularly (plus being overall active).
My MO is recommending zometa, and I'm thinking about it. I hope my insurance will pay for Prolia as it seems to be an easier drug and is an injection.
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Elaine, Thanks for your response! I wish I had a desk job, as mine can involved heavy lifting and I'm always on my feet. Although I do see your point..too long in any one position can be uncomfortable. Between surgeries, chemo, radiation, and meds, I just don't know what's causing what, so it helps to hear from others!
Eren, I also take vita D and calcium and lead a fairly active life. After recovering from chemo and radiation I slowly increased my activity and I was exercising 5-6 days a week for months prior to my reconstruction early June. I'm now 47, and was stage 3 also. It sure is hard to know the best route to take..if only we had a crystal ball!
Opt4Life, I wasn't taking aromasin during radiation, but I don't think combining them will matter. Radiation will make you tired, but nothing like the chemo tired!
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Opt4Life My MO tested me for 5 months to be sure I stayed in chemopause. I turned 50 two weeks after chemo. We both felt given my age and when both my mom & sister went through menopause I was done. It never returned and I had less issues going through chemopause than my sister going through menopause the natural way. She has hot flash hell.
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Hi ladies, thanks WildTulip and Lago, I started my Aromasin (take at night) and am just praying no major issues.
The only good thing about chemo is no more periods so really hoping that like you Lago they stay gone. I'm about to turn 49 and my Mom had a period until 53--yikes! Don't want to share in that. My MO has an air of confidence so I'm trying hard to adopt her attitude that 'we got this'.
Well I will get blood tests monthly for the next six months and another MRI after radiation so I guess I'll just settle in for the ride.
Hope you all are enjoying the weekend. Its hotas Hades in the DC Metro area so me and my hotflashes are mostly indoors.
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Opt4life you mean
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Opt4Life, I am 49 and decided to do aromasin with lupron a little over 2 months ago. My periods did stop during chemo but the ladies on this forum had advised that I should get my estradiol and FSH levels tested to be certain I am in menopause before starting aromasin. I have read that starting aromasin before you are truly in menopause may cause your body to produce more estrogen.
So far I have very few SEs on the combo and am sleeping well, went back to working full time, back on my running schedule, and am losing my chemo weight. So best of luck to you and hope you have a good journey too.
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Opt4Life,
It's really hot here in OK, too. Fortunately, my hot flashes are most common in the evening, so they don't bother me much when I'm out and about.
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Hello ladies,
Lago, Lol@ 'its like Africa hot'. And on top of that my A/C went out last night. Waiting for the HVAC guy now who is probably gonna charge me a mint for Sunday service. I don't even care cause 'boy its hot' and I can't take the heat.
Hey Kiks, I'm looking forward to 49 in a couple weeks....I was tested too and definitely found to be in the post-menopausal range. MO was willing to give Lupron shots now but was fine when I told her I'd like to wait and see. But hearing that you are doing well, maybe I'll move foward with the injections now after all. They are monthly right? I have stopped gaining weight, but haven't lost a pound (even with being back in the gym 5 days a week). Plus I actually crave food and eat more than I did before. I worked through chemo as I telework a few days a week anyway. And only took off a couple weeks after my surgery/LX. I actually believe work and a sense of normalcy have kept me from the dark thoughts at times.
Elaine, I haven't figured out my hotflash pattern yet. But I will say they don't happen but once maybe twice a day depending on my busyness that day; and as long as I can sit down for a minute to catch my breath, they are over pretty quickly.
All in all, I'm just thankful to be here and for the most part feeling good and living life normally with a few medicines and more doctor's appts thrown in for good measure.
Stay cool and be blessed all
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Hot in Ireland Today (Celsius)
Before you roll around laughing - these are the type of temps that cause Irish people to get severe sunburn, die of heatstroke and lie around in the shade panting
DH (who is from NC)is one of the laughers.
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Kiks, Opt4life, What are the Lupron shots for? Just curious. I get Zolodex shots monthly, which is to shut down my ovaries. Is Lupron just a different drug for same purpose (although you both said you were confirmed in menopause)? Can you tell my brain is foggy?! Congrats on your consistent exercise! I gained 25 lbs during chemo and it took me 8.5 months afterward, but did get back to my pre-diagnosis weight and now am a little less even.
A little hot flash humor for all of you..during the school year I substitute in school cafeterias (aka, lunch lady) and I began aromasin in Feb. The hot flashes have eased up, but in the beginning were more intense. There were times when I was working, got hit with a hot flash and would take a break in a walk in cooler or freezer. There were times when I thought, "Man, I need one of these at home!"
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Molly: I had increased glucose while on Lupron/Aromasin. My MO just said since I didn't really fast for the tests (metabolic panel), it's probably nothing. I was not tested again. But I never had this problem before, fasting or not, and I'm 47 so I'd like to think that I know my "baseline." I guess I'll find out soon since my PCP just ordered the test for my annual physical.
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Opt4life this may be cheaper than the repair man. Have your own personal AC.
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Opt4life, I get the monthly lupron just because I was afraid of SEs initially and thought that a lower dose to 'try it out' is better than getting a large dose off the bat. Now, I am just deciding to stay on it because I have done well and just don't want to rock the boat. Besides I get to see MO every month and I can bring up any concerns I may have. Only thing I do is to make sure I am very hydrated before and after the shot ( because I read that SEs are less likely). I made a commitment to eat even better ( I ate well even before bc) after chemo as I had gained about 10 lbs. I spend Saturdays cooking 5 dinners for the following week and I pack a huge salad for lunch everyday. Like you, I have a very flex schedule at work and am able to run 4 to 5 times a week. So far it has been rewarding and I am almost back to my pre-chemo weight. And yes, work has given me a sense of normalcy as well. Oh, happy birthday too and enjoy every single moment of the years to come.
Wildtulip, lupron is like zoladex or at least does the same thing. Shuts the ovaries down. Congrats on your determination and persistence on losing the weight. I know, it is not easy. MO has me on lupron, even though the estradiol and FSH confirm I am menopausal, because , I guess, the ovaries can start up again after chemo. My periods were still very regular before chemo. So far, it has been agreeable. I use to get weekly/biweekly migraines and hormonal cystic acne. Those have all resolved since my periods stopped.I also feel so much happier than I ever was in the last decade but I don't know if it is just due to lupron/aromasin. May just be that I have a greater appreciation for life itself.
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For KIKS 1: I finished my chemo almost 4 months ago and radiation finished 2 months ago. I was supposed to start on Amidrex a month ago but I cancelled for another month to see if my chemo S.E (bone and muscle aches) would improve first before starting them. It hasn't improved so I am concerned about starting a pill that so often can cause bone and joint pain! Right now I haven't returned to regular 4Xweek hour-long exercises due to this pain that keeps me tossing and turning at night. I do better walking (I walked 4 miles in a day level ground) but the minute I sit or lay down, the stiffness and pain starts! I can walk most of it out, but it comes back again when I am still. I would like to hear from anyone out there who has experienced the joint and muscle pain from Amridex! If I started on it and I developed these symptoms and quit, would they go away or are they there forever? I am meeting my oncologist tomorrow in Seattle and I I am supposed to have made the decision and I am freaked out! I've never had arthritis and it's not in my family. I was very active until chemo and now I feel like my body is 80 years old (I'm 63). I can't find ANY info on this so please can anyone tell me what they've experienced? I am really afraid.
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Nammo, I was very fortunate that I had very little SEs from chemo. I had some very tolerable muscle achiness after neulasta but that usually last only 2 days or so. I walked and hiked through chemo. As far as hormonals go, I have read that some people do better on aromasin and some do better on amidrex. When I started on aromasin, my feet had achiness in the morning but that goes away once I get going. However, in the last two weeks, the pain has lessened considerably. From what I have learnt so far from this forum, SEs from Als can lessen with time as our bodies adjust to them. I have also read that some have switched from one Al to another till they find the right drug. Seems like for most, SEs from one drug will dissipate, with time, when you quit. I know there are many here that have done that and hopefully will chime in. I wish you all the best and hope you have little trouble with the Als.
Edited to add:
btw, I am sorry that you are having so much pain still and if it is of any comfort, my MO did tell me that it can take up 6 months or more to feel better again. My MO also did a dexa scan prior to starting aromasin to get a baseline on bone health.
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Seriously Lago, I could have spent $20 for an A/C contrapment versus $600 to repair my HVAC? Who knew? Plus I had to pay extra to get the Trane store owner to open his store on a Sunday to get a part. It certainly would have been easier to get a bucket, fan, and drill holes. Oh well, next time 😊
Kiks, its great to read you are doing well. We go through so much $@!+ with this diagnosis so it warms my heart to see us ladies pull ourselves up and move forward despite everything. Also, really glad to hear about the weight loss too. I had lost a bit of weight before my diagnosis and gained half of it back. Gotta dig deep to not slide further back into bad eating habits and lack of exercise.
Great info about Lupron, you have definitely convinced me to at least try it with the Aromasin. I'm node positive so I need extra help keeping this stuff from coming back.
I tell my MO about things I read here at BCO all the time and 9 out of 10 times she confirms what I've read and agrees with the course of treatment. She is conducting a lecture series on Endocrine Therapy at my local hospital and I sat in one of the sessions and already knew about 85% of what she was presenting just from my BCO reading.
Nammo, I hope your bone and muscle aches clear up soon. Like Kiks, I had few SEs from chemo except for the dreaded hair loss and tiredness (though even that fell on weejends when I could sleep in. But I also took B12, B6, Biotin, and Glucosamine the entire time. Still do. Hopefully your MO will be able to work out a regimine that will have you feeling better in no time. Keep us posted on what he/she advises.
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Nammo be sure your vitamin D levels are correct. Also ask your oncologist if you are getting enough calcium. That might help with the bone pain issues. I would also ask your MO for a bone scan if the problem is constant.
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