For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hiking Lady makes some great points about discussions with your MO. While I'm not the numbers person that many of you are, I trust her when she says that I do need to take an AI and she will work with me to find the best AI for me - and there are several, not just arimidex. I take my letrozole in the morning - just because I have a bigger handful of pills to take at night. My fatigue and insomnia comes and goes but I think that's age as much as anything. I hate that my hair is thinning but everything else generally is working OK. Exercise makes a huge difference - both mentally and physically. I'm convinced it's the reason that I have been able to control my weight without significant diet changes. I've had some gastritis issues in the last few weeks and was really feeling like a blob. Golf with my buddies on Sat. was a great picker-upper!
Two years post diagnosis, I find myself looking at cancer like I do other diseases - I take medication to control other medical issues (blood pressure etc.) and am willing to do the same for cancer. On the other, I will be 76 at the end of 5 years on AI's and I reserve the right to decide that is enough.
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I have read so many times in various forums here that some cancer patients take Claritin I don't fully understand why because it's for allergies. Can someone please explain the reason for taking Claritin? Thanks again!
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It’s the Claritin Non drowsy formula. It helps with the bone pain. I never used it, can only go by what the ladies say here. Some MOs either poo poo it, or don’t know about it. Try it, if it helps, great
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Hi Everyone- checking back in after a month on Anastrozole....happy to report I'm doing ok lol! I too added Claritin....the MO's NP told me when I was switching I may just have stiff joints in the morning, wouldn't need it but thats when I honestly go by all of you and decided what's it going to hurt! So added it to my pills.
I take mine in the morning... I hate reading people are getting SE's months and years later. I had hot flashes with the Tamoxifen, and those are still nice and steady on the AI. I do feel bone tingling and occasional pain, but more annoying than anything else. I notice it in the evening when I'm sitting and watching TV.
Taco1946- what's your exercise choices besides the golf? I am trying to walk, but not doing it enough.....I've tried to go onto that exercise board here but some of those ladies are doing marathons lol. I need to get into a good exercise routine and haven't done it yet.
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I'll try Claritin. Glad you mentioned the non-drowsy formula!
ajbclan , I'm with you. Never did a marathon in my life but admire those who do. But I've almost stopped walkig like I used to on a regular basis. Main reason is that where I live, the weather has been so lousy for four months, raining/pouring almost every day. Now it's 32 - 35 degrees when the sun it out and I just can't take the freezing weather. So much runnings to doctors, oncologists, etc. that I've been too tired to go to the place where I can walk inside.
Ahhh, too many excuses. I know I'll feel better when I get back to walking!
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ViewFinder, when trying Claritin be sure to get REGULAR *not* "D". Who knows why it works? Not me. But it does help.
Luckily, here in Spokane we have had mostly a mild winter. Only a couple of snows and that was quite awhile ago. We get lot of sunshine even in winter. Sure helps the mood.
HUGS!
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One of the things I wanted to mention was checking with your local gyms about special classes and/or rates for cancer survivors. I had never set foot in a gym (or pushed myself more than a brisk walk to the car when it was cold!) before BC. I found a gym that offered a special membership that was 10 weeks for $70. I could only get it with a physician's referral. That membership allowed me access to everything including all workout equipment, 3 pools (one of which was heated and was WONDERFUL when recovering from surgeries and such) and any of their multitude of daily classes such as yoga, pilates, tai chi, aerobics, zumba, spinning, etc. Then to top it all off, it came with a once a week hour long meeting with a trainer who showed me how to use all the stuff in the gym. Definitely helped me since I was intimated by it all. Heck, this gym even had a physical therapy department so they helped me set up some exercises to help with my mastectomy pain. I'm sure not everyone has those types of gyms around, I don't anymore since I moved. But it was that 10 weeks that got me hooked on working out. I now go to the gym pretty much every day. And during my 5 years on Tamoxifen I could really tell when I didn't go to the gym. And as a bonus, I've met lots of new friends, most of them BC survivors themselves. Anyway, my point is to check around. It could be that you can find a really great deal at a gym which then might help get you through these surgeries and meds.
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Yes, in my town the local hospital has a Cancer Wellness Program. With a doctor's referral it's open to anyone in the County who is being treated or finished treatment for Cancer and it's free. It's also open to other Cancer patients living outside the County that had treatment at that local hospital. I joined once I found out about it and I'm in my last month. It's 90 days free to use the gym (local hospital has a fitness facility open to anyone to join), take the fitness/yoga classes, consults with trainers, and use of the facilities all free. I've been to the gym almost daily. Plus Specialists available for consult and follow up treatment/app'ts such as a dietitian, other supportive therapies. There's also free classes periodically open to anyone currently in the program or once they finished the program.
It is worth checking to see if your town offers this type of program.
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This has been more than helpful info. I've been on anastrozole for 3 1/2 months with what I consider to be minor SE. However, new ones are showing up now. Initially, my carpal tunnel symptoms, which I had in my left wrist prior to my BS and taking the AI, became more significant and my right wrist the pain came back, I've had carpal tunnel release years ago. The osteoarthritis in my knees and left thumb is managed with steroid injections, MO is ok with them, if it gets worse sometimes I take otc pain med. I also had leg cramps before the BC since taking the AI they've gotten worse and moved to my toes. Now hot flashes come and go with very short durations, never experienced them before the AI. I've changed my diet, ride my aerodyne bike daily, and dropped a few pounds. I ride the bike as walking, continues pounding on my knees is to difficult and our weather in the upper mid-west is relay cold right now. I had my first bone density scan weeks after I started the anastrozole and it came back in the high range of normal. I've take vitamin D and fish oil for years, but started CoQ-10 which has helped with the leg cramps and let's me sleep better through the night. My pharmacist recommended it, he said it won't interact with the AI, as our bodies create it throughout our lives. As we age we produce less and a supplement will help replace what we need for muscle health and the cramps have subsided! I'm taking 200 mg daily which is what he recommended. We are individually unique resilient women who have a disease that challenges us daily and we will persevere as individuals and/or a group! Thank all of you for sharing your challenges and your remedies. Yes, I'm new to the forum and will return often.
DX 8/14/2018, IDC <1 cm left, stage 1A, grade 3, 0/2 nodes, Surgery 10/3/2018 lumpectomy left reconstruction with right reduction with IORT
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Taco here - let me start by reminding you that I live just west of Phoenix so I do walk - not run - year round. We also have a 3 year old terrier who thinks it's his right to be walked several times a day. He expects me to do the after dinner walk and he is a good walker, summer or winter.
I live in a senior community which does have numerous very low cost exercise classes, well designed and supervised gyms and both indoor and outdoor lap pools. I went to a stretch and flex class for several months and I know it helped with balance and self confidence. However, as I have gotten healthier, I admit I have also returned to other pursuits and have found it hard to put exercise (other than 9 holes of golf 3 times a week) into a regular routine. I do wear a fitbit and most weeks hit my 50,000 steps a week and 7500 a day. Having "friends" on fitbit has also been a motivator for me. I'm realizing I'm a little more competitive than I always want to admit.
Others have talked about wellness programs, either hospital based or otherwise, which offer classes. I know some Y's in our area give either 3 free months or very discounted rates. It really helps to go often enough that you begin to feel accountable to those around you - that's why I am so loyal to my golf buddies. If I'm not there, I can expect a text within minutes. Check also with your community or recreation department about classes - again usually quite reasonable with an instructor to keep you on track.
I was sick for a couple weeks and know how much better getting moving makes me feel. I am 72 and have had carpel tunnel surgery and an achilles heel repaired but my knees work most of the time. I have taken chrodotin and glocouseme (also misspell those) and calcium with Vitamin D for years and think it helps. Started claritin (generic - just bought a year's supply for under $50.00 at Walgreens) during chemo and have continued. I certainly don't understand why it helps, but it certainly seems to. When I had my first dex scan at age 70, I was told I had bones of a 30 year old.
I've been on AI's (first arimidex and then letrozole) since May 2017 and generally feel well. I hate that my hair is thinning but working with MO have gotten the hot flashes under control and I like being know as "the lady with the hat."
Keep stopping by, Stella. Whatever your question, someone will have experience to share. Happy weekend, everyone.
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Thank you for all of the great info and encouragement/push to get moving!
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Hello All... I’ve been on generic anastrazole for 4 1/2 months. I started right away at the full dose, and take it in the mornings. I occasionally feel a little stiff first thing in the morning or if I’ve been sitting for a while, but it goes away as soon as a move around a little. I never considered NOT taking it, since I’m 95% ER+. My DEXA scan showed mild osteopenia, which I’m treating with weight bearing exercise and increased calcium intake. I joined a gym in early December, after I read that 150 minutes of exercise per week cuts the risk of cancer recurrence by 40%. I’m a couch potato at heart, so this is a big step. My big side effect was horrible hot flashes. They were waking me up at night and aggravating my insomnia. My MO suggested I try a mild dose of Effexor. It has helped a LOT. I’ve noticed when I exercise more, I feel better, have more energy and sleep better. The right path for each of us is out there!
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hi everyone , I've been taking my Anastrozole at 10 am, and get hit with bad hot flashes from midnight to 4 am. I was wondering about taking them at night, , does anyone take theirs at night? I’ve been taking it now for 1 month. I was wondering something else also, I saw my Dr on Jan3 and then he said he would see me in 6 months, is that how it goes? I kinda felt like I wanted to scream wait that’s to long. Feeling lost!!!
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Dreamer5454,
I take Anastrozole about six at night. I feel tired most afternoons. Maybe once or twice a week I get a hot flash in my face (cheeks) that lasts about 20 minutes.
Also, don't your oncologists have a nurse line? I call and often get prompt, knowledgeable answers to the majority of questions right from the nurse. Or they speak with the doctor and the nurse gets back to me. They will also tell you if you need to see the doctor before your next scheduled appointment. For some things I actually prefer speaking with a nurse than a doctor.
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My MO gave me venlafaxine for the hot flashes - first 37mg and now 75. They are definitely much less frequent and intense. I'm hoping that won't change with the weather although she said she could up the dosage again. At this point, my only complaint is the thinning hair (although my stylist points out that my mother was quite bald when she died.) I take my AI's in the morning. Just fits with my routine and other medications better. MO said it didn't matter but to be consistent. I saw my MO every 3 months twice after I finished herceptin and now every 6. Also have mammogram of cancer breast every six months and both every year. See BS after mammogram. PA's of both MO and BS are very prompt at getting back to me with calls or emails. I try to time my visits to Primary to be the opposite 6 months as MO so see someone regularly. I appreciate your feeling of being "cut loose", Dreamer, but you do have supports in place. Much as I hate to say it, your insurance may also be a factor in how often you are being seen if you are symptom free. Looks as if you are one of the lucky ones whose disease was caught early and were able to avoid both chemo and radiation. Try to move forward - plan a special trip or long weekend with partner or friend. Discover a new book. Cancer gave me a new perspective to appreciate those around me including the advise of many on these threads.
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Well Said, Taco1946. I'm headed to the Zoo today and back to Moffitt to get a massage - Mental and physical boost for me. I would just add that I used venlafaxine for 3 months. It did help the hot flashes, but then I started to experience some memory issues. You have to get off it gradually, and it was a b*tch. I use a fan now.
I wanted to tell everyone to watch your Alk. Phosphatase levels on the bloodwork. The Arimidex is going to elevate that number, so you're unlikely to have anything better than 1.5x higherthan normal. All the symptoms of having this increased MATCH 100% everything we ever say about our side effects. Basically: It is slightly damaging your liver and your bones. That being said, I will continue to take my medication.
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MexicoHeather My alkaline phosphatase numbers have stayed well within normal ranges while taking anastrozole. Apparently not everyone has that problem. Of course it is always wise to watch such numbers.
HUGS!
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MexicoHeather— I have been on Anastrozole (which I take at bed time) for just over 1 year. I have not seen a change in alkaline phospatase value in my blood work every 12 weeks.
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I can’t remember if I posted here or elsewhere, but acupuncture helped me tremendously with hot flashes!
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Hi all, I am new to this forum.
I am due to stop anastrozole after 5 years on it.
I have regular bone density scans and I am OK at the moment, no loss. I feel I should stay on it for longer than 5 years, hate the thought of stopping. Has anyone here decided to stay on it longer? Thanks all!
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GerryM--I think there's a lot of discussion in the US about extending the AI to 10 years. I was told "5-10 years" (I just started in November) and a good friend who started around the same time was told 7 years. I believe by the time I get to the 5-year mark, 10 years will be the standard. OTOH, there is research suggesting that 10 years helps prevent recurrence but doesn't affect overall life span.
https://www.nejm.org/doi/full/10.1056/NEJMoa160470...
Here's a summary of some of the research, suggesting that the extended treatment only be given to women with high-risk cancers who tolerate treatment well:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC59378...
I think bottom line is this is something of a moving target.
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Gerry, do they do the BCI test in England? It can tell you if you would benefit from continuing for 5 more years. There is a thread here where you can read about it if you type BCI in the search menu.0
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hey ingerp, thanks so much for your links. In the second article reference #54 was also an interesting article for those that are single receptor positive.
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I have come to the conclusion that the little white Anastrazole pill is the biggest insurance I have to protect myself from a recurrence. I told my MO that I plan to take it for the rest of my life if my body can tolerate it.
Yes, I may die from some other cause but if I can take breast cancer out off the table I will
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I'm 73. This October will be 5 years on anastrozole. My MO said for ME with my dx, Oncotype, and age, 5 years is enough for me. I have had very few SEs so I am willing to go longer. But I trust my MO so will go off it then.
HUGS!
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Ingerp thanks for sharing the research links.
Everyone: thanks for sharing your experiences, ongoing.
My MO said "Start with 5 years, and then we'll see what the research conclusions are for your exact DX and TX options."
I am grateful that SO FAR, the side effects are nuisances, not deal-breakers, and everyone's experiences shared here helps me have a context for exactly that.
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please join us on the exercise thread! There are a few marathon runners, but I would like some company in the "average " exercise group!
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I will stay on that little white pill for as long as I can. My BCI indicates that I don't need to go past 5 years but I've already told my MO that I want to take it forever. I guess it probably all depends on how long the insurance will pay. I'm with you, Bella. I would like to take cancer right off the table.
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I have been on Anastrozole for three months now. I take it in the morning - around 8 along with Clairtin. The joint pain and stiffness still exists however it has improved since I started taking walks. Ended up just shy of 153,000 steps in January and hope to get even more this month. However like Taco, I too live in Phoenix so not really sure what will happen when we hit 100+ here.
Enjoy reading updates from people who have taken this pill longer, thanks!
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Good for you PhoenixCruiser! My goal is 50,000 steps a week (7500 a day) but I slacked off in January. Had a gastric thing and didn't want to leave the house for long but am hoping February will be better. I was able to do that all last summer. A long walk with DH and dog or golf first thing in the morning and I always do the after dinner dog walk while DH cleans kitchen. I do find wearing the Fitbit and having a few fitbit friends has been a motivator.
I have stayed with the claritin. Generic works as well for me and is much cheaper.
I am committed to 5 years of AI's but at that point I will be 76 so I'm not making commitments beyond that right now. Who knows what other health issues I may have by then.
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