Life on aromasin
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I'm early 50's , so I am counting on living at least 30 more years.
If I was in my 70's I think I would consider not taking AI's , but since I am not that is not a choice! lol
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I'm going for low to mid 80s. Originally thought I'd go for 120. But now I'd be happy with mid 80s
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Like Peter Pan, I’m aiming to live forever!
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I felt the extreme fatigue on Anastrozole which killed my joints quickly, so I switched to Letrozole which killed my joints, too, but after almost a year. It also thinned my hair and gave me left thumb issues, but I slept better. Amazingly I've noticed after being on Aromisin for a couple months now, that my thumb has gotten much better, so maybe it's the steroid? Haven't had hot flashes, but do have warm flashes and sweating on all three AIs. My joints are still very achy on Aromisin, I struggle to sleep well, and hair still thinning, but otherwise I'm fine! LOL.
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I had my second at 40. I would like to live long enough to see a grandchild, but it won't be happening soon.
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Bliss- my MO changed me from anastrazole (so hard) to aromosin half way through my five years. He said the SEs should be better with the joint pain, and at my six month check up after we changed out the meds, he asked if I felt an improvement? I had a 90 day script and finished what I had left, then started the new meds, so I think I had been on them 3-4 months by the next follow up.
By the time I saw him at the next check up, I had been on them a good 9 months and did feel a big improvement. I could feel less joint pain, foot issues, etc. The sleep issues remained, but found those to be cycling (and think sometimes related to work stress) But my thought is because the AIs are cumulative, I think the anastrazole took awhile to come out as the other took awhile to build up. That is my theory at least? You may see more improvement as you go along to your joint pain friend as you continue on with the aromosin. I hope so!
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HapB, I have a 26 year old too. She just bought a house with her boyfriend, soon to be fiance, but she says the wedding is a few years off yet.
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HapB - lol I remember saying the same thing at your daughter’s age. Most likely it’ll come back to bite her in the ring finger!
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HapB, fearless is good...and I have an inkling who she got it from!
I’m the same, I want my son happy, healthy and settled into a loving family of his own...and cannot wait to be a grandmother....really want that bad....a whole passel if them!
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Jazzygirl, thanks for the reply, and I hope so, too! My MO said she has many patients who have done best with this AI, and I'm thinking, then why didn't we just start here? haha Oh well, water under the bridge now. Maybe third time's the charm.
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bliss58, I was started on letrozole, as my MO feels like it is the best for overweight/obese patients. I fit that category, so that's where we started.
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Bliss- for some reason, they don't seem to start people on Aromosin. Before I started my five years, I researched all three and checked with groups here to see who did the best with SEs and aromosin seemed to be the best for them (especially with dealing with joint pain). I was started on the anastrozole in 2013, I remember I was told by the first MO I spoke to they had the best clinical data history, but my current MO I worked with said they do like to try all of them through time to ensure women have the best chance of getting through the time they have to take them. I do hope as you get more of the aromosin in your system and the other comes out, you will notice a slight improvement. The joint pain will be there, but found it to be better. I swim a lot and that also helps.
You ladies make me smile with your goals for how long you want to live. My goal is to have the best quality of life for the duration!
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I am also one who didn't get Aromasin and instead took Anastrole for 18 months, and was miserable most of them. I think I remember my MO telling me that Aromasin hasn't been tested or used as long as the others and that's why they don't rx it first, but that kind of doesn't make sense to me. Anyway, aside from some mild joint pain in my thumb and hips from time to time, and some mood swings/emotional outbursts that seem to be helped with the supplement SAM-e, I'm still doing okay on the Aromasin, I guess.
I am looking forward to eventually not taking it, but I'm looking at a few more years according to my MO.
Claire in AZ
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I got the results of my bloodwork. Everything normal except for a borderline glucose, which I've had for several years. But it's actually lower than the last one in December. I was ALMOST wishing something would be off so he'd suggest I stop taking these pills that are making me hurt and feel generally crappy. 😜
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At the suggestion of a friend, I started taking Tumeric for my joint pain. So far I see a small improvement after a week. I use something similar to thisTumeric with curcumin and black pepper
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I have tried a teaspoon of ground turmeric in a tablespoon of peanut butter. It kills the taste, but I forget to do it on a regular basis.
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courtbug, sorry u r here, but welcome. You may want to look at the other threads dealing with aromatase inhibitors (AI). there is a lot of info. Also, what is Goserolin?
Good move to talk to your MO. Hopefully you can get answers. I asked my MO, why are you prescribing x instead of y? Also, if you don't feel like your team members back you up, interview other players!
Hang in there, and keep us posted. We are here for u!
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Courtbug- welcome to our thread. It is natural (although not much fun) to be overwhelmed after just coming through all the treatment you went through. NED is a typical comment they make when they don't see anything of concern. In your case, my guess is that they think they got everything and you will hear NED in the future as you go through your follow ups. I don't know if you should feel happy, but think maybe reassurred the treatment you got seemed to get anything they can pick up on scans taken care of.
Some women do experience vaginal atrophy, between being menopausal but also because of the meds. Sounds like you are not to the first yet, but be sure to work with your gyn on this as they will help to keep tabs on your pelvic health during your time on the hormone blockers. My gyns have had me using a small dose of estrogen creme (some women here have been told it is not okay, there are varying opinions). My MO also told me last visit in January that Vitamin E suppositories you can get on line or from pharmacies that will help (I have not tried it yet, but will). It will be important to know all the options for the SEs that go with the AIs.
For bone health, usually the MO's will do a scan to check your baseline bone health before you start the AIs. Then they check it along the way. I was slightly osteopenic coming in to my dx, but things got worse on the AIs. Because I had a mother with osteoporosis, I started on Prolia shots for bone health around 2 years in and have had them the duration. Because you are not menopausal, your bone health is probably really good would be my guess but you will need a dexa scan for a baseline.
Your MO is like many, you don't hear a whole lot about the SEs, just the more common ones. Look at some of the info on line and ask more questions your next visit about what to expect. Some docs better at others with providing info on these things?
Sounds like we are both single women so feel free to PM me if you want to talk about other things off line here.
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Nancy618--Be sure you take your turmeric with black pepper if you are eating it in your food. The black pepper is what actually allows our body to absorb the turmeric. If you decide to go supplement, find one that includes black pepper in the ingredients list...also could be listed as peperine. I take Gaia turmeric since it has the black pepper in it and is locally sourced from North Carolina.
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Interesting about the black pepper with the turmeric.
I've been using Premeno Duo for vaginal atrophy/dryness. It comes from a German pharmacy. I buy it on Amazon. It seems to help some. I haven't seen a gyn in 2 years. I'm looking for a new one.
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I will probably be leaving this group....I saw my MO who is willing to work with me on what is best for me, including stopping all AIs if that's what I want. I took letrozole for about 3 weeks before I bailed because I wasn't sleeping and was an emotional mess. I took anastrozole for 6 months until I couldn't take the constant pain. Was on aromasin for 4 months. The pain wasn't quite as bad, but the dryness and fatigue, lack of desire to do anything, and cost drove me to ask the MO for advice.
Between the two of us, we decided I'd try the letrozole again. He says he sees the fewest side effects on it and always suggests it first. I only gave it 3 weeks and the problems I had may have just been due to being totally new to me. I had some sleep issues on the other AIs and am now taking hydroxyzine at bedtime, which really helps.
I know exercise is going to help...I just have to talk myself into it. When you're already feeling exhausted and achy, it's not something you want to do. I'm about to go take a walk. I think Spring has finally arrived!
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Nancy- good luck and if you are a swimmer, I recommend laps or some type of water for exercise. Easier on the joints and it does help to keep things working better. Exercise does help with joint stiffness, but getting started is the hard part, especially when you don't feel great.
I probably will be leaving this thread soon too. I wanted to share some of my experiences with coming off the AIs for others who may be doing so in in the future and to know what to expect. I am about two months out now and know there is more to go, but my joints are better, feet don't hurt, hair thickening, getting more mental clarity with time.
Until we meet again
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Good to hear Jazzygirl.
I've been off for 5 days and my hips feel great and sciatica barely noticeable.
No, I don't swim. I do yoga once or twice a week. Used to do Zumba but haven't been for 8 months because of the hip pain.
Good luck to you.
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Nancy- if you like zumba, see if you can find an aqua zumba class. The gym I used to go to had a class and during the worst of my SEs on the meds, it was a class that really worked for me.
Take care everyone and keep up the good fight!
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Nancy618
... I read "somewhere" in one of these forums, that a MD starts her patients on an every other day schedule to get use to the medication.
I thought that was a brilliant idea and wish I had started that way.
Coach Vicky
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I don't see any reason why we can't individualize our dose to what best suits us. For example, I take 1/4 exemestane daily. When I upped it to 1/2 a pill, joints ached. Research shows that one 25mg dose suppresses estrogen for 4 days (so why do we take EVERY day?), whereas 5mg suppresses for 1 day. I know my 1/4 pill is working because I now occasionally experience hot flashes and night sweats, but NO joint aches or other SEs. A 1/4 pill with no SEs is so much better than no AI at all.
It's too bad docs don't have time to individualize medicine for us, as AIs appear to require, instead of following the one dose suits all mandate from the pharmaceutical industry.
Laura
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Laura, I would talk to your MO before you individualize your dosage. Many drugs are only proven to be effective at certain doses. Some meds actually have toxic effects at lower doses than at higher doses. It is not always intuitive.
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Jazzygirl: Aqua Zumba sounds like too much work, and I don't like water, except to be on it in a pontoon and an occasional air mattress.
Coachvicky: Sounds like a good idea. I may ease into letrozole that way.
Odd thing though....I've been off the Aromasin for a week now and today, my wrist joints really started to ache badly. I've been crocheting, but no more than usual. Had I started the letrozole already, I would've attributed it to that!
Interesting that one pill works for 4 days, but we take on daily. Maybe a plateau has to be reached and maintained.
I took another short walk today...1.1 miles/22 minutes. My hips are bothering me tonight and so are my knees. Yoga tomorrow.
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True that, 2FUN, and I understand your skepticism. As a former BC researcher, I extensively research the drugs I take. Exemestane is a steroid (unlike the other AIs) and has a clear dose-response and pharmacokinetic profile (links to papers above in former submission) showing that 25mg is on the high end of the dose spectrum. This high dose is associated with more SEs which, I think, does raise the question of toxicity.
Patients exhibiting these SEs should ask their doc if they can split or quarter their pill. My doc was impressed with my initiative and I hope shares this new info with his future patients.
Laura
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