Doing Well on Aromatase Inhibitors (AIs)
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Estring was approved by my MO due to its low dose direct to where it's needed. I originally removed it at BC dx. But MO said to reinsert as she allows its use in her patients. It was nice while it lasted.
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Thanks for the Estring explanation - that makes total sense. I do take Claritan daily (fyi) to help with the Neulasta side effects but also because I live in Atlanta and have horrible allergies! I have had no issued with the Neulasta bone pain or leg pain, so I'm assuming the Claritan helps.
Kris
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“Data do not show an increased risk of cancer recurrence among women currently undergoing treatment for breast cancer or those with a personal history of breast cancer who use vaginal estrogen to relieve urogenital symptoms.”
The low dose Estring isn’t absorbed into your system, just the local tissue.
At first I was confused too, but then I read a lot about it, and I trust my doctors at UCSF.
I was really uncomfortable with the dryness and also had leakage of urine and felt discomfort when urinating...like I had a UTI. The Estring makes everything wonderful again....0 -
I started taking Tamoxifen 7 months ago. I had a pelvic ultrasound a couple months ago and discovered a few fibroids, cyst on my ovary & thickening of the uterine lining. I started Lupron 3 months ago & I want to switch to an AI. My question is, has anyone been successful in shrinking or reversing these uterine issues by switching to an AI instead of continuing on T? My MO says it's too soon to switch but I am trying to avoid a hysterectomy so I want to switch now.
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Willcare, I am not familiar with tamoxifen since I couldn't take it because of my predisposition for blood clots. I used lupron for 4 months and it was very difficult for me. I decided to remove the ovaries in order to continue with letrozole. Removing the ovaries was a very easy procedure but of course depends from your situation, age, etc. Since you are stage 1A, do you need to take tamoxifen or AI?
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I have been taking Anastrazole for 2 months without side effects except for occasional insomnia. Good luck
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I have a really random question for anyone who's listening. I haven't had too much in the way of SEs, and they've eased up over time, but does anyone else have an itchy nose? I mean like right at the rim of the nostrils? Never had anything like this before, and it's certainly not bothering me, but all I can think of is it's some weird AI SE.
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Hi Ingerp, I have recently had the occasional itchy nose but I have attributed it to a grass allergy. Although I have never had allergies before, so perhaps the AI is a contributing factor.0
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Hi, I have been on Anastrozole for 7 months now, I also have minimal SE that ease up overtime but what’s bothering me right now is the tenderness on my left back ribs area where the kidney is. I don’t think it’s kidney stone because it’s not sharp or radiating, its more of a bruise pain but deep. It’s been two months and it’s not going away or getting better.
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Ingerep - sometimes, not ofen, I get itchy nose, but have not associated it with AI. The worst feels lke an in-grown hair in nostril. Other times, maybe a very mild seasonal allergy. But SEs seem to be so variable.
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Hi Seawell,
I have a history of bladder spasms which began after my hysterectomy in which my bladder was attached to my uterus when they took it out resulting in a very angry bladder. Gyno put me on estrace cream which seemed to help and they cleared, only reoccuring when I had my knee replaced but PT said it was from the pain triggering them. Anyway my question is will the estrace cream put me at a greater risk of reoccurance of BC? These spasms are awful. Thank-you in advance.
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Ingerp- my nose itches near constant from allergies. It's so bad at times I'm sure it appears I'm picking my nose but I'm actually scraping my nail along the edge of my nose. I've noticed no difference on the AI. You might try a generic antihistime to see if it stops the itching. Good luck getting it to stop.
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I have been on anastrozole for about 6 months. Does anyone ever feel like they can actually hear they’re own heartbeat? Or like they’re heart beats faster? I had a similar sensation on taxol during chemo. Not sure if quarantine just has me crazy with too much time to think
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Laurencl -
I got that with just regular menopause so I would imagine it could be a side effect.
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LaurencI - sometimes I do feel like heart is beating faster and that I can hear it as well. Not brought on by exercise. I take Arimidex and Ibrance. I have checked pulse with BP monnitor and pulse is normal. I do take a BP drug which keeps it almost always 115/65 or less, with a waking pulse of usually 65 or less. Sometimes BP drops to 90/50, and pulse about 70. During Wellness checkups, I report that I have not experienced palpations, but maybe I should mention the sensations. A very active friend went to Urgent Care several years ago when she felt that some chores she was doing was causing a lot of exertion. She had spent the last several days hiking and biking. They started to give her a stress test, stopped, sent her to ER who kept her. She now has stents. I mentioned to a mutual friend how suprised I was. The friend who is in health care was not suprised at all, saying that the person had the classic "apple shape" even if she was not over-weight. I wonder if I should get more of a check up than I do, maybe a stress test. CT scan for cancer noted some build-up in blood vessels.
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LillyWasHere--I have an anecdotal story for you about joint supplements. I was diagnosed in 2012 and went on Tamoxifen in early 2013 which I did for 5 years. Within a few months of starting T I was having pretty strong joint and muscle pain and my MO suggested glucosamine which didn't do me any good and upset my stomach, so I went to a local holistic doctor that used to be a breast cancer doctor. He suggested turmeric, specifically Gaia turmeric because it's sourced locally in NC and already has the black pepper in it for bio availability. So I took it and what a difference it made! My life went from miserable to basically back to normal. I also added a couple of other supplements and later added lots of water (T is very dehydrating) and daily exercise. Anyway, fast forward a couple of years and I was home visiting for Christmas and listening to my 75 year old dad lament his inability to continue his active lifestyle which included hunting, golf, skiing (water and snow), running, etc because his knees had gotten so bad and his doctors wanted to do knee replacements. I convinced him to at least try turmeric (keep in mind he's an old retired-now doctor and thinks supplements are "bulls**t"). Three months later I casually asked him if the turmeric was doing any good and he proceeded to wax poetic about it! His exact response was "Remember how at Christmas I hadn't been able to golf for the last few months? Well to give you an idea of how well it works, I played golf 5 times this week alone!" He's a total convert. Especially since his doctors had recently told him one knee no longer needed replacement and the other could wait. Eventually he did do the one replacement about 2 years later.
Then story number 2....during this time my DH was bucked off a horse and tore his ACLand meniscus and needed surgery to repair. I put him on turmeric as soon as the doctor allowed after the surgery (can't do before as it's a bit of a blood thinner) and then sent him to rehab. They told him it would be 4 months before he could ride and 6 months before he could do it professionally. At 2 months they cleared him to ride and at 3 months allowed it professionally! The doctor was so impressed and felt the turmeric was the game changer. He now suggests it to all his patients.
So long story even longer maybe try some turmeric. I would definitely run it by your doctor but if they agree it might be what helps you. And as an added bonus my GP told me last year at my yearly exam that the newest studies show turmeric is very beneficial to your heart. He now suggests it to most of his patients. Anyway, just thought I'd make the suggestion. Oh and by the way, at one point I had GI issues that turned out to be my multi vitamin. Once I changed that the issues went away. One-A-Day is very well known for causing issues. Hope this helps!
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cm2020-- I buy the Gaia turmeric supreme extra strength capsules. Sometimes I swap them out for BioSchwartz Turmeric Curcumin with BioPerine. I buy both from Amazon. I've added links but not totally sure they'll work.
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Thank you so much Lala. I am a bucket full of supplements. Last summer, when I was diagnosed with BC, my kid's pediatrician who has PhD in food and nutrition and I highly respect, told me this and that about my kid and then he turned to me and said: for Mom, matcha tea and turmeric tea to help fight BC. Honestly, I never liked green tea, and few times I tried, gave me stomach upset and turmeric has never been my favorite spice even though I love mustard. So, I went online and bought high-quality matcha tea from Japan and a bag of organic turmeric powder. I learned that matcha tea goes after you eat to help food digestion and I make my own turmeric tea with turmeric powder, ginger, and black tea. I was drinking so much turmeric tea that my face started turning slightly yellow. The doctor got worried and sent me for a blood test to check the liver that came back normal. Thank you for telling me turmeric has some blood-thinning properties. Helps me for two reasons, one is that people with cancer tend to have what some call "sticky blood" that coagulates faster than in normal pre-cancer life and second, I have a tendency to have fast coagulation and that's why I refused Tamoxifen. Also, I have googled and read in legit websites the benefits of both, matcha and turmeric. Probably my SE would have been nightmares if I didn't use them. I did add Glucosamine and I take it with food. People like me who love salty food love water too
. Since I read about "sticky blood" I do take baby aspirin as well. So, the supplement industry should send people like us some gifts as an appreciation for keeping them in business . One thing I do is that I take supplements in half of what is suggested, just in case new research says that they do harm! Kind of like coffee, one year is good for you the other year is bad for you. Adding to matcha tea, I wonder if it keeps my weight in check since I haven't gained any weight since I started AI - my theory this one. Also, I put some matcha tea on my face too 
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tumeric helped my stiffness immensely but I had GI issues so I stopped.
How much are you ladies taking?
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I will see my Oncologist tomorrow and will discuss tumeric with her. I have increase joint pain especially in the R knee. Very intersted in what she has to say.
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Since I make turmeric tea I use 2 teaspoons. Sometimes, other than black pepper and ginger, I add cinnamon and milk and it becomes the famous golden milk.
Here is a legit link about tumeric: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-turmerics-anti-inflammatory-properties-may-relieve-arthritis-pain/
warning: may interact with chemo.
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RE: joint pain: exercise and hydration matter a lot for me
I've tried turmeric and anti-inflammatories /NSAID-types, and everything I've tried has helped just a small amount. Exercise + drinking a LOT of water every day has helped a lot.
When I first started on my AI, I was weak, recently finished with chemo, and not very active. As I regained muscle strength, my joint pain receded. For me, daily (one-hour) of exercise is what keeps me comfortable, and I schedule it for first thing each day, so it doesn't get skipped. 20-25 min uphill briskly on my treadmill for cardio, + Pilates core work and weights with a mat and with free weights for another 40 minutes---I have a small gym equipment area in my house.
I also frequently do hiking, biking or swimming or deep-water strengthening (with resistance equipment) workouts, but my pool is closed due to COVID-19, so I'm relying more on my little home gym than before the pandemic. I feel crappy whenever I don't drink a LOT of water, so I try to drink much more water daily than before being on my AI.
Maybe 3 months after starting my AI (and after getting back to 1 hour daily of exercise), I really stopped having constant discomfort. My MO had predicted that after 2-3 months, I'd be more comfortable. 3 months is about how long it took to build up pretty good strength and fitness, so there's no way to know whether I started feeling better because of strengthening, or because of getting used to the med. It also took me awhile to realize that hydration was such a huge part of feeling okay every day. If I drink less water, I feel sluggish that day.
If my routine is disrupted and I can't do my daily exercise, I again have extreme discomfort everywhere that I have arthritis (hips and knees), and I feel extremely achey and stiff.
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Amazing HikingLady! I try to exercise and I can say I'm good with yoga and flexibility but I can't build muscle. Actually, I am losing muscle so fast that even my mirror can't keep up
. I have weights I used before but the joint pains are not letting me use them regularly. Also, the lazy side of me prefers matcha and turmeric tea instead. For real, I do 30min stretches and yoga first thing when I wake up and then walk for at least an hour and keeping up with kids if this counts. Even with this basic exercise, I am having so many new problems with the baker's cyst, muscle, and joint pains on one side only. Sounds and looks weird!
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Hello there, quinnie - from across the river in Edgewood, KY. We PM'd awhile ago, at the start of your treatment. PM me & let me know how you are doing, if you like.
Re: Turmeric - My MO looked it up on the Mayo Clinic website & OK'd it for me to take. A couple of caveats: best to take it w/food containing some fat for absorption & look for enhanced bioavailability.
Another thing I use off & on for joints is Arnicare Cream or Gel. It is homeopathic. Boiron makes one and Whole Foods has their own brand as well. It has no "odor" to it and I and my family have used this as well as Arnica "tablets" (more like little balls) for many years.
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seawell--For turmeric I take 1 500mg capsule a day. My doctor told me to start with 1 capsule a day and take it for 1 month. If I saw improvement, then keep on with that dose. If I didn't, then go to 2 capsules a day for a month. If I saw improvement, then do another month with 2 and then drop back to 1 a day and see if the pain stays away. If it doesn't, then keep on with 2 capsules a day. If I see no improvement after the month at 2 a day then he said it probably wouldn't work for me and to not bother with it. I saw an improvement at 1 capsule after about 10 days and by the end of the first month, I was sleeping well and mostly pain free. I've now been taking that dose for almost 8 years. You do have to quit for surgeries due to it's blood thinning properties. And I will add that I was put a on a daily baby aspirin when I started Tamoxifen and quickly developed some pretty good bruising, I mean like where I would bruise just by resting my chin in my palm! My MO had me drop the aspirin to 2 times a week and said it's just as beneficial without all the bruising. And I figure turmeric gives me a little more blood thinning just in case Tamoxifen wants to throw a blood clot at me!
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Turmeric - It really does seem to help, but I think I am more aware of its absence, then presence, if that makes sense. I've been taking the GAIA "joint" formulation for several years, before that one of the other GAIA formulations. Also use turmeric powder with black pepper almost daily in a meal. In colder months I like the Gaia "Golden Milk" powder. You can use any "milk". Sometimes have put it in coffee. I think in the quantities I consume, it might cause some bladder irritation. Hydration and staying active also very important. Need to remember to drink throughout day and not just after an activity.
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BlueGirl - I know exactly what you mean about feeling the absence of turmeric when you miss a dose vs feeling it's effects when taken.
I am using the turmeric supplement linked below. From what I've read, you want a supplement with the highest % of curcuminoids you can find.
https://www.amazon.com/dp/B07XG36MBB/ref=cm_sw_r_sms_awdb_btf_t1_iNLnFbMMA76FZ
i also discovered that for me, taking glucosamine at night is more effective than taking it in the morning - I don't wake up feeling like a brick and it seems to remain effective for the day.
Lanne
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Lane2398 - thank you for your reply. timing of meds and supplements does matter. I may try switching when I take glucosamine to bedtime. I tend to put everything into a shotglass and eating with breakfast. Have you ever spread out the dose rather than taking it all at once? I've heard that for many things the body tends to absorb more and eliminate less.
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