Doing Well on Aromatase Inhibitors (AIs)
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LaughingGull, thank you for the article. This is what I expected, but good to know research supports it. I guess I am pretty much screwed. My desire to lose weight is gone. According to tests, my thyroid is fine, but I always struggled with weight even though I eat less and healthier than my skinny family and friends.
I still find it ironic that I was denied having a BMX because they said they don't remove healthy breasts, even though it would have significantly lessened my chances of getting ILC in my other breast.
I think the hospital I go to is more interested in using me as research and they aren't really interested in helping me personally. As the article said, I am still having issues with healing from the DIEP surgery in January. I see the PA in plastics in July. I have a feeling that will be my last visit as I think he will consider me to be healed even though I still ooze and bleed from the wounds. At any rate, once I am cleared by plastics, I will reassess whether or not it is even worth it to do any follow up care. I kind of feel I'm screwed no matter what I do. I don't think the Letrozole is doing anything.
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MaverickMom - I'm with Ruth. Be thankful you feel OK with the AI. And if you do, why give it up in case it is working?
I'm by no means slim - I struggle to keep my BMI under 30. But MO's comment about weight was that she would only be concerned about significant (not defined) weight loss OR gain. I know people who have made big diet changes after diagnosis but at age 73, QOL was a significant issue for me and dieting isn't fun. I know I have read that for TP, AI's are more effective than Tamoxifilin although I can't find the source.
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Yes LaughingGull, thanks for the article. As a plus size woman I have faith in my RO, MO, and BS who have all said that there is no reason why I could have 20+ yrs of longevity post BC. Have I made life style changes, absolutely. I was 61 at the time of dx with having lost some weight a few years before and then kicked things into a higher gear since surgery. It has been challenging taking the weight off, but well worth it to help myself reduce the risk of recurrence. Taco1946 like you said about the effectiveness of AIs, I recently read that AIs are more effective than tamoxifin for postmenopausal women in reducing our risk factor. I don't feel that my QOL has had a negative impact in anyway. The greatest hurdle for me is acknowledging the fact that I didn't make better health choices 20 yrs ago and became a stress eater. I have been seeing an Integrative Dr. to deal with some of the SE that I'm experiencing additional joint pain (I have osteoarthritis and rheumatoid arthritis prior to dx), anxiety, mood swings, and anger. The major intervention I've incorporated into my life is the elimination diet which includes no gluten, dairy or eggs. I'll start adding eggs to my diet next week and see how things go. Then 7-10 days later I'm adding dairy and eventually gluten. At this point I'm guessing gluten is the culprit of additional inflammation. I also am doing acupuncture twice a week and will reduce to once a week in another week my Dr. also recommended cumin for the pain. She also recommended Natural Calm and B12 twice a day to help reduce the anxiety. So far things seem to have improved! I'll keep you informed.
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Hi. I guess it's time for me to jump in.
Today is Letrozole day 1 for me. I have a 30 day supply; that's it. I think it's just a stop gap measure since my surgery (upcoming on July 8) is 60 days after dx. Once we have full path back from my tumors and SNBs, we'll make a real plan.
I'm kinda worried about side effects. I only stopped BCP last month, when I got the dx. Hormone swings? Also, I'll turn 55 next week, and last time we checked (16 months ago) not even close to menopause. I guess my BS assumes I'm post-menopausal by now, and I'm willing to go along with it for 30 days.
Selfishly, the main SE I'm worried about is hair loss. I'm mother of the groom on Sept 14.
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happyperidot I have no hair loss --8 months on Anastrozole so far. I can very much relate to your upcoming wedding concerns! Our daughter's wedding was smack dab in the middle of my 4 months of chemotherapy. I did "Cold Capping," which worked really well for me. I kept enough of my hair so that no one could tell that it was a bit thinner.
As for your question about menopause and which anti-hormonal you're getting....When I was 'peri-menopausal' and there was a question about whether I should be on Tamoxifen or an Aromatase Inhibitor, my MO did a blood test to check my estrogen level. You might want to ask about that... My OBGYN said "12 months without a period = menopause." But, things could absolutely have changed since my experience, 15 years ago, about how they decide which anti-hormonal to give at which point....
Keep us updated as you learn more, on your signature on your post, and after you've gone through the surgery, by posting again about the surgery path report. Warm wishes to you. I see that you just got your diagnosis a month ago, so I'm sure it's very new to absorb all this information, and manage the shock of it all.
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Happyperidot -
Please don't worry too much about the side effects, particularly hair loss. Some of the comments on various threads make it sound as though AIs affect our hair much as chemo does and that's just not the case. You may see more shedding than usual and, over a LONG period of time, some thinning but I'm pretty sure you'll be fine for the wedding in September! It does seem to me that anastrozole may affect the hair more than the other 2 AIs but I'm not sure there's a pharmaceutical reason for that.
I've been on Femara nearly five years and while there are side effects, none of them were immediate and none of them have been continuous at the same level. Your best plan is to commit to giving them a fair try (2 years, minimum would be my advice) and remember that you can switch between them to address various issues. I firmly believe that if a person goes onto the pills without expectations of a negative experience she will find it's not as bad as it sounds. For myself, I'm truly glad I'd not read any of the horror stories on this board prior to starting Femara.
Good luck with it. I hope you get good news from your pathology report.
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Happyperidot
I am still taking Tamoxifen because I am not yet menopausal. My mo suggested that I would take an AI as soon as I am definitely menopausal. Since I had a partial hysterectomy in 2014, that means we are doing hormonal blood tests to check for my status.
Before that partial hysterectomy I was 48 an no where near menopause . After harsh chemo and turning 53 next week; Still not there...but trending toward it.
As I've been told by my mo, if you take an AI before you are menopausal, you will not have sufficient blocking of estrogen that is the protection provided by Tamoxifen (Which is why I am still taking it). AIs work on the assumption that your biggest estrogen factory...your ovaries, uterus etc...have shut down. I do quarterly tests to track my journey toward menopause...I started following AI threads anticipating a switch in the near future.
You might want to ask your mo...sometimes even docs just assume that women in their 50s are close to menopause. When my mo checked my historical bloodwork, he quickly change my therapy plan to include Tamoxifen rather than am AI.
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to tk
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Happy--I haven't noticed any hair impacts from my AI. I'm six months in. <furiously knocking on every piece of wood in sight>
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Thanks everyone.
Yeah, I'm not expecting side effects, I just don't want them. I try not to think about it so it won't become a self-fulfilling prophecy.
As for menopause, I'm definitely asking my PCP for a blood test when I go for my pre-op physical. I'm dying to know. It's crazy to be this age and still wondering.
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Stella - the anger, mood swings etc. that you describe were much less when I switched from arimedix to femora at about 7 months. I had some arthritis before (had both an achilles heel repair and carpel tunnel) but I am experiencing significantly more knee pain recently. I am of the age where many of my friends have had knee replacements though so I'll see.
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Taco1946, thanks for the recommendation. I had my 6 month checkup in April and my MOs NP recommended to schedule an apppt. 3 months after that appt. to see my MO and talk about changing the AI. I'm hesitant in changing as the new AI could cause worse SE that I'm already experiencing. In the meantime I started seeing my Integrative Dr. and implementing her recommendations. I feel that they have been beneficial and I'm doing better. I think the biggest factor is I'm on summer vacation from school (HS Sp. Ed. teacher) and being away from goofy coworkers has helped in reducing my stress which has reduced the anger out bursts. I will definitely be retiring next year after 42 yrs. in education so the stress factor will be eliminated!
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Stella - I suggest you try something else. You can always go back. Each choice seems to cause little different reactions for each of us. My hair definitely thinned with the femora (it had grown back quite nicely after taxol) but I am happy to be known as the hat lady. Now that I've gotten my hot flashes under control, I wear a wig occasionally but do prefer my growing hat collection. I look for them in thrift stores and our local "5 and Dime" always has a nice selection. I took a two week break between arimidex and letrozole and another week off this spring when I was getting a lot of headaches but have now passed my two year mark.
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Stella, I took Arimidex for over a year and a half. I had terrible joint pain all over, but especially in my feet. Within a week of starting Aromasin my pain started to go away. I've been on Aromasin for nearly 2 years and haven't had any joint pain. Don't be afraid to switch, you may be plesansurprised.
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Hello ladies! I’m just chiming in since it’s been a few months; I’ve been on Aromasin since April and have only noticed joint pain. My fingers, toes, and shoulders are where I feel it. I have recently begun hitting the gym again and regular exercise really has been helping! I also stretch all the time. I gained like 20 pounds after surgery but it has started to come off with regular exercise. Glad to hear others are doing well also.
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I've been on Anastrozole for 8 months and haven't noticed any hair loss. My hair came back much darker and with a curl, which I am loving so knocking on wood too.
My joint pain has also decreased significantly.
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I've been on letrozole for 1.5 years now. No hair loss, just finger arthralgias after sleeping; dry eyes and mouth; difficulty losing weight; and sexual dysfunction.
These cute little side effects annoy me, but I am managing them. I just got Invisalign, which is helping me lose weight because I can't eat or drink anything but water while I wear them -- and I can't have them out for longer than 3 hours a day, tops. So I'm on a type of intermittent fasting.
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I'm lucky I don't have joint pain other than in my hands. I'm a distance runner and bodybuilder. I think all the activity saves me. My fingers cramp only when I'm sleeping or otherwise holding them still, such as when reading for long periods.
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nightcrawler, I have the same side effects you have. I am you!
Will visit the gyn soon to talk about the sexual dysfunction. That is not fun.
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Ladies
I am joining as many AI threads as possible. Looking for any support as I start this Arimidex journey today. Just popped my first pill 30 minutes ago.
I was on tamoxifen for about 2 years until I was menopausal....so, now I made the switch. I exercise regularly and already drink 100 ounces of water each day. So, hopefully that will help a lot.
I had no real problems with tamoxifen after the first 3 months...no side effects at all after those 3 months. So, switching is scary but I had a high oncotype score and with a large grade 3 tumor, I just want to try everything possible to reduce recurrence risk.
I look forward to taking this journey with you.
Btw I have a meeting scheduled in 90 minutes that I couldn't change....hoping that this pill doesn't make me dizzy or loopy during the meeting!
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Scrafgal I hope your meeting went well! I don't think you'll have any immediate side effects that will affect your day today. The accrued effects are more subtle.
The nice thing about this thread is that it's full of Doing Fine stories, and that has kept me feeling positive. Like you, I also had a high Oncotype (59) and Grade 3. AI is one of the tools we have for my DX, and I need to be on it.
I've been on Anastrozole for 9 months now, and I'm really doing fine. I can tell I'm on it, but my side effects (which are probably mostly the direct effects of less estrogen in my system) are tolerable. I get Warm Flashes sometimes, my thumb joints are a bit weakened, I need to keep moving (daily exercise!) to feel okay, and I am really careful about what I eat (portion control + limiting simple carbs) to manage my weight. I had osteopenia diagnosed before starting my AI (seen on a DexaSCAN), so I get a Zometa infusion every 6 months.
Exercise + hydration = A Great Plan! Cheering you on, and wishing you well!
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I am glad to see this thread! Somehow, I didn't see this one before today. So far, I can't complain about the anastrazole. I do feel like my hair started shedding a lot about two months in, but I also feel like it is leveling off (hopefully!) and probably not noticeable to anyone other than me, so maybe it had nothing to do with the medicine at all. It is very reassuring to read how so many tolerate their hormonal therapy quite well. Scrafgal, if you do feel a little dizzy after your first pill, the feeling should pass in short time. Like others on here, I am thankful there is a long-term treatment to help keep ugly cancer at bay and and I am glad for the shared experiences and advice on this site as we all navigate together this path none of us ever wanted to take.
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Day 1 is going okay....Hope it lasts!
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Welcome, scrafgal and SUPer52! I've been on anastrazole for 10 months. I have luckily tolerated it (mostly) well. I did end up with horrible hot flashes that were aggravating my insomnia. My MO started me on a low dose of Effexor, while has helped a LOT. My feet are stiff and sore first thing in the morning or if I've been sitting for a while. Is it the anastrazole or the fact that I'm almost 53? Who knows.... moving around does help. I do have mild osteopenia. I've increased my calcium intake and weight-bearing exercise. I do feel grateful to have this option for reducing my risk of recurrence. Wishing you all the best!
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Thanks, GreenHarbor!
Scrafgal, that is fantastic news!
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Thanks GreenHarbor and SUPer52! I
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Hi Scrafgal!
I have been on Anastrozole a bit over 14 months. In the first few weeks, I had pains like shin splints in my lower legs. Those completely went away. I have morning stiffness in my hands. They are sore and stiff when I wake up. After moving them around a bit, that goes away. My hair seems to be doing fine. I do take Biotin daily just for good measure! I try to exercise most days. I drink a lot of water and eat pretty clean. Sometimes I search for words, don't know if that is the AI or just general blond-ness;-). All in all, not too bad at all for me. I am 52. I hope all goes well for you!!
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Thank you, SimoneRC! I turned 53 two weeks ago!
I just finished doing Pilates! Feels good! I really just want things to go well with this switch from Tamoxifen to Arimidex.
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Happy Belated Birthday Scrafgal! Crossing fingers that you too have pretty smooth sailing!
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Thanks, SimoneRC!!
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