Life on aromasin
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I'm premenopausal. My MO was impressed with the SOFT study results which showed some benefit for premenopausal women to do OS + AI rather than Tamoxifen. I guess I could have my ovaries removed, but that's an irreversible operation. If things don't work out with the AIs (terrible SEs, e.g.), I could always ditch OS and try Tamoxifen.
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I do monthly zoladex (39 at dx, so premeno). Same reasons as above - SOFT results fairly compelling - more so for under 35s, but I had sufficiently high risk tumor to merit chemo, so...
Like ElaineTherese, this seemed less permanent in case SEs were egregious. That said, it's been pretty good - know I am an outlier here but I prefer zoladex+exemestane to tami. At least so far :-)
Figure I will take a call in 12 months - if still feeling the same might have the ooph - I understand it's not too bad a surgery, and I truly detest the monthly appt. for now I need some time off surgery though...
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Yeah I hear you. I guess if I were younger and not already in peri-menopause before the start of treatment, the monthly shots might make more sense for me. My MO is suggesting OS even if I were to stay on Tamoxifen. I guess the SOFT study results showed a benefit of Tamoxifen combined with OS over Tamoxifen alone. I do want to at least try an AI though, and hopefully I will tolerate it well. I just don't like the finality of having the ovaries removed either, even though I no longer need them for fertility.
Does anyone know about the SE's of Lupron shots vs Ooph? Does Lupron completely shut the ovaries down, or does it just shut down the production of estrogen?
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I demanded to be put on OS+exemestane after spending 3 months on Tamoxifen. The tamoxifen was really affecting me. I was having trouble concentrating, which is something I need to do, um, for life and for my job, and I just felt really loggy all the time. So. I went to my MO with a handful of articles I'd found, some about the TEXT/SOFT trials and some about the cognitive side effects of tamoxifen vs. exemestane. I found that, compared to tamoxifen, aromasin has fewer cognitive side effects (this is in terms of actual cognitive tests not subjective reports). One study found a slight increase in cognitive function in women taking exemestane (though the women themselves did not notice it). It seemed to me that exemestane was likely to be harder on the bones but not as hard on the brain. Plus, the OS plus either tamoxifen OR exemestane cut the (already small) risk of recurrence with tamoxifen alone in half. I am not prone to bone issues so it seemed like a no brainer to me to make this switch. I had to have a fight with my MO which was quite uncomfortable but I got what I wanted.
My MO (who may or may not remain my MO) told me that I can't expect to come off the shots (like ever) to see if I am in menopause so my option, if I get sick of the shots, is an ooph. I asked her if the side effects of the ooph would be the same as what I am experiencing now with shots (which is to say, hardly anything: just what I was experiencing of menopause prior to cancer) and she was noncommittal... I don't feel a strong desire to undergo surgery, is my thing. I haven't had a period since months before my diagnosis and I realize my ovaries aren't really doing much for me now except feeding potential cancer. Still. I don't know...
Also, I am not entirely clear on what lupron does. I think (I may be wrong) that it does something like overload the ovaries so that they basically blow out for about a month.
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Professor50---I've been on Tamoxifen since Feb 2013. In Jan 2015 I had a total hysterectomy plus ovary removal. About a year before my hysterectomy, I started going into perimenopause....sporadic periods, some nausea, lightheadedness, bloating, etc. Nothing too bad but enough to know it was starting. Then about 6 months before the surgery I started getting hot flashes. Not every day. Maybe a couple of times a week. My estrogen levels were normal so doc said it's just the start of menopause. Then, because the Tamoxifen was giving me ovarian cysts and thickened lining and such, I went for the surgery. I am still on Tamoxifen and plan to stay on it as long as I can because, for me, the SEs aren't that bad. i have joint pain but really that's about it and I can stop that with turmeric and ginger. I asked my BS at my annual in March if he would suggest switching to an AI due to the SOFT results and he said he would not recommend it . He said I would get 3 points improvement in my recurrence risk but the he felt the side effects would be much worse. He feels the joint pain and bone loss are worse with the AIs. So for now, I stick with my Tamoxifen. The point I wanted to make though is that, for me, my surgical menopause isn't that bad. About a month after surgery I started having regular hot flashes....like a couple during the day and 4 or 5 at night. They were bothering me enough at night to affect my sleep. So 4 days ago I went on Peridin-C at my gyn recommendation and with my MO approval. Last night I had one hot flash and slept almost 8 hours straight! Could be a fluke so only time will tell but so far so good. My nausea is mostly gone as is my dizziness (gyn feels could have been my cysts causing that) and my bloating is much better. All in all, very glad I had ovaries out. At least that risk of cancer is gone as well. If your were already experiencing menopause, I don't think you'll find it to be much different with an ooph. Of course, just my opinion but thought I'd tell you my story.
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That's great to hear, lala1. What was the surgery like? And how long was your recovery? I am going to keep thinking all this over and appreciate hearing a "it's not that bad" story!
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Professor 50,
I'm also a college professor, and I know what you mean about needing to concentrate. That's why I hated AC chemo; it made me such a space cadet. I was happy to move to the Taxol/Herceptin/Perjeta cocktail. Even though it gave me moderate diarrhea, my mind was so much clearer. Now that I've finished with rads, my department chair has been looking hopefully at me. (While I kept up a full teaching schedule on chemo and rads, I cut way back on my service.) I think my chair wants to reappoint me to chair of undergrad studies. Yay.
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I did Lupron shots in 2000 during my first bout of breast cancer. I switched to Zoladex, tho, because they last three months. They're a pellet that's injected into your stomach. It sounds painful but the nurse always numbed the area and I couldn't feel anything, Both drugs suppress the ovaries. I had hot flashes every half hour or so, which was no fun, but I took Effexor to help with that. If you're having bad side effects on Lupron, you might want to ask your onc about switching to Zoladex.
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I have had my second Zoladex injection a few days ago and I am taking Exemestane daily as well. I feel like the side effects are doable at this stage. The hot flushes come and go, but according to my MO this will give me 1-2% less chance of recurrance over tamoxifen alone. I am at high risk so I am prepared to give this a go.
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Professor50-- Surgery was pretty easy, especially compared to a mastectomy! I spent one night, passed gas about 5pm the next day and was promptly released. I got a booster shot of drugs around midnight was I was there but all in all took mostly Vicodan and Ibuprofen. Went home with a script for same but the Ibuprofen does a number on my blood pressure for some reason so swapped to Tylenol after first day home. Took that for 2 days and then nothing else after that. I walked as much as I could as soon as possible. At day 11 I had to go back to doc cause my back was hurting. Turned out I pulled a muscle by overdoing things! (Yes, he told me that probably around day 10 I would be feeling so good that I would overdo things and set myself back. Probably shouldn't have helped with the laundry! Glad to know I'm so predictable!) Took a few Flexeril and moved past that. Had minor amount of bleeding for about 2 weeks afterwards. Saw him at 3 weeks and got released to go back to the gym, walking only. Saw him again at 6 weeks and released for everything provided I start slow. This time I listened! Now at 4 months post op, I do everything I was doing before all this. Other than the sporadic hot flashes that are getting better and the joint/muscle pain from Tamoxifen/menopause/getting old I'm doing great!
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Wow, lala1, this sounds good. I will keep it in mind if/when the monthly trek for a shot starts to get me down! (And also will try to remember to not over do!
)Nik1966: I wanted to reinforce your spirit. This is doable and you can do it!!! The best side effect ever is living a good long life. We can put up with a lot, yes, we can, to stay alive and healthy!!!
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Professor50 - I think we had very similar hormonal tx paths (I also found cognitive SEs of tami unbearable - and unacceptable in my professional life). Have found OS + exemestane much better in that respect. Am also playing 'wait and see' on ooph. Probably the right thing to do, but I would rather give myself some time before more surgery (anesthesia also leaves me stupid for a few weeks...ugh).
Two things that do worry me - bones (I failed my first dexa - at just-turned-40 - delightful, thanks chemo) and heart (big family history of heart disease). But cancer currently scares me more than either. So...onwards!!
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RainDew! Well poop on the bone thing! Ah jeez. I am hoping that my first dexa (next week) goes well. Are you taking anything? I have a friend on the same meds (who has a history of bone issues) and she's doing citracal. I am just taking vitamin D/calcium and magnesium. Anyway, it's nice to hear of someone else who found tamoxifen unworkable. My MO acted like I was out of my mind.... grrrr.
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I don't know if it is the high pollen count or the lousy air quality here in CT the last few days, but I have been experiencing some shortness of breath that I did not have for quite a while (had some when I first went on exemestane but it only lasted a few days.) Anyone else have this issue when it is humid and high pollen?
Also, I noticed one of my ankles looked a tiny bit swollen...making me nervous. Should I call my MO? My PCP? Who? Advice welcome!
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April, pollen count is thru the roof in nj & betting it the same in your area, manor but the pollen on the cars in the morning is a mazing, stay in doors or at least keep windows closed
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Lala, I had a complete hysterectomy in mid-January. Surgeon removed uterus, ovaries and tubes. She was able to do it laparscopically, so I was in hospital less than 24 hours. I had minimal pain, just difficult getting in and out of bed for the first few days. I was driving in a week and had no complications ( just a hospital-acquired bacterial lung infection). Easiest surgery I ever had. Now I don't have to worry about ovarian cancer.
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It's awesome isn't it, WaveWhisperer, to at least know you don't have to worry about that!! It was probably my second easiest surgery second only to the exchange surgery.
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Lala, yes, I've always worried about ovarian cancer because it's so hard to diagnose until it's advanced. I'm post-menopausal, so I'm glad to be rid of those organs. I had a suspicious CT scan, followed by an endometrial biopsy, which led to the surgery. Happily, no malignancy!
I remember when my mom had a hysterectomy back in the early '60s -- long abdominal scar, long hospital stay, slow recovery. I'm impressed with how far medicine has come with this surgery. And while chemo and radiation are still barbaric, breast cancer surgery has also come a long way from the days when women almost automatically had radical mastectomies, losing arm muscle tissue.
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Hi
I started out on Arimidex and after severe mood swings, nausea, hot flashes, extreme fatigue, I took a break for 4 weeks. Then I went on Examastane. For about three months I was just having hot flashes so decided this was the AI I could take. Then for some reason the SE set in and I could not sleep, could hardly walk and all joints would go into pain at any given moment...but endured for another 3 months. I am now on a break again for 6 weeks...finally feeling better and see my MO tomorrow to look for options.
I take many good supplements to build up my immune system and have completely changed my diet. I think that has helped with the imflamation and joint pain.
Praying there is a good option that will work!
Judy
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Judy, I'm interested in what route you take. Like you, I switched from Arimidex to Aromasin after a year of agony. I was fine on Aromasin until about a year in, and the joint and bone pain, the stiffmess, all have returned. I hurt from my shoulders to my toes. Let us know what your MO says. My appointment with mine isn't until July.
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I made the switch to Exemestane last year after 3 years on Anastrozole. My feet are more sore on Exemestane but the other physical SE are much better or gone.
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Wow, I have been away too long! Judy, I have found that doing easy yoga videos really helps with the joint pain that I have. I try to do it most evenings when I get home from work before dinner.....just takes about 20 minutes with the videos that I have but it really helps, especially the hips.
Martha
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i have significantly less pain since cutting out wheat and gluten on Aromasin
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I recently had a bit of a reality check. I was looking through my top drawer for something and came upon a knee brace thing from last summer. Suddenly, I remembered that last summer (way before cancer was even a thing in my life) I was needing a knee brace because my left knee was hurting something fierce after my runs. I was icing it daily. I'd stopped because I was feeling a bit better but...hmm. So that joint pain has nothing to do with exemestane (maybe it is making it worse but that pain was here already). Remembering that jolted me into recalling that actually my shoulder has been hurting for almost a year and started, again, way before I started taking exemestane. Oops. I will blame it for some of this stiffness but the truth is...ACK! I am just getting old !?
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I have a theory that the ALs sort of intensify any of our old aches and pains. May not cause new spots but any old injury is made worse.
my thoughts as my old sports injuries were under management but now just can not seem to get them corrected
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I agree. In fact my NP said as much. When I was on Arimidex and in so much pain I could hardly walk, I asked if they could MRI my entire body, lol! They said it was due to the AI, but I didn't believe them at first. My knee hurt especially bad, so my doc did an MRI on the one knee only. It showed I have mild osteoarthritis. So, I ended up switching to Aromasin and things greatly improved, but I still feel creaky. After my BMX I had shoulder problems. Dx with frozen shoulder and bone spur. Had a long recovery with several PTs. Finally regained full ROM. Recently I went in for a checkup and they ordered a Dexa scan and other xrays to look at the status of my bones and what stage I was for osteoporosis. Turns out I have osteoarthritis in my back and hip. My back doesn't hurt, but my hip sure does. Old injury from falling off a horse years ago. One leg is shorter than the other so that throws my posture off. I think my feet are affected, too. I can't walk as much as other people seem to be able to without a lot of stiffness. So, yes, all these things are age related and yes, the AI's make it worse.
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Some of my aches and pains are in joints that bothered me some before all of this, but they are definitely worse now. And weather really makes a difference too. But I also have some new ones....my wrists and ankles. But as I said, I do find that moving and stretching helps a lot.
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Just back from my first dexa scan. It was pretty easy. This is, I think, just a baseline or something? I mean, I've been on Lupron +aromasin for just over a month. (this scan is one of the things my MO threatened me with when I insisted on switching from tamoxifen: YOU'LL HAVE TO HAVE A BONE DENSITY SCAN! Like the prospect of that would sell me off it...) Anyway, that was a synch. Results in a few days.
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Professor
These MO don't all read the same medical books nor do they all graduate top of the class so its a gamble who is right.
I have asked repeatedly about bone density and I have been told it not needed any more than every two years which is the same recommendation for the general population.
I dont feel comfortable with that but MO wont order a test.
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RaiderGirl, my MO also says every two years for the DEXA. I had my first last year before I started the AI and it was reportedly good. I take calcium every day (one Viactiv chew--my chocolate treat for the day!) and try to drink a glass of skim milk every day and I love cheese. When I saw him last month we reviewed the ongoing plans and he reiterated the DEXA every two. All I can say is I wish I could have total body scans every two! Just for piece of mind!
Martha
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