For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Howdy. Good day to all. Just chiming in on the Vit D. The sun is free and the best way to get it absorbed. So no sun screen for me the first 10-15 minutes I was out this past summer. This winter I am rolling my sleeves up a bit to expose lower arms to the sun. When I was 1st diagnosed my level was a 7. I took the D2 prescription of 50,000 units 1x per week for about a year with readings of 51, 52, 59) So I was told to stop. I've been off since last Spring, Sept. labs has level at 37. I do all I can to get outside everyday. It does work. I also added a one a day silver vit that has some D3 (1,000) in it.
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ctmbsikia - Thank you! Best wishes to you, Lisa
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I try to keep my Vitamin D at 50 to 60.
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SoCalLisa, nice to meet another Lisa, and thank you! I want to do what I can to keep osteoporosis far, far away. I actually started my walking program today, hoping it is the "serious" one this time. Time to get serious. Best wishes to you, Lisa in Missouri
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my bone density took a nosedive after about 18 months on arimidex. I took fosamax for about 2 years then stopped when my jaw started getting weird sensations. The density actually went up some after I finished the arimidex. I only did 4 years after a year on tamoxifen.
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SoCalLisa, that is good to know. I am almost done with Herceptin/Perjeta (2 more) and doctor told me this week I will get bone density test every 3 years. A lot can happen in 3 years, thank you for sharing that. By the way, my dad was stationed in San Diego in the Navy and has told me that is the nicest city in the USA. I bet it is very pretty! Thank you for sharing that, gives me motivation today to get up and walk! Raining all day here, so no sunshine today. Everyone have a good day! Hugs, Lisa
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Good morning ladies. I have a question and hope it’s not tmi. I’ve been taking Anastrozole since May. I have always had issues with constipation, this has become 100 times worse. I’m not going for up to five days at a time. My oncologist told me to use Miralax twice a day and at first it really helped, now it’s stopped working. I have had tests done to make sure it’s not a bowel Obstruction and it isn’t. I’m using a pre/pro biotic and still the Miralax and senna s and this morning I added 4 ounces of prune juice. I just don’t know what to do. I’m so frustrated and feel bloated and gassed up all the time. Any ideas and advice would be most welcome.
Thank
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My suggestions:
try being SUPER hydrated, maybe push more water all day long, and keep track, and see if adding another quart, for instance, of water during the day does help.
Also add magnesium...there are lots of ways to take it in, and some are more absorbable than others. Ask a pharmacist for suggestions on this.
Add 1 T of Metamucil to your cereal in the morning—-experiment with how much helps. It’s the same thing as psyllium/ground husks, so the ‘natural’ version is pretty much the same thing
Eat 1 prune with each meal, and see if that helps.
Figure out (my husband who’s an RN has coached me on this) whether your constipation is due to lack of motility (in which case a ‘push’ solution, like laxatives, will help, or whether it’s due to solid/hard/lack of moisture hard stool. In that case, a lot more fluids and Stool Softener can help. Worst case scenario, give yourself a Fleets Enema (on the floor in the bathroom on a towel), and it does work, although it’s not a delightful thing to have to do for yourself. I have managed it. On the list of Not Fun But Necessary things I’ve done in my life
Nothing is TMI on this forum, and this is a horrible thing to deal with. I had a lot of challenges with this during chemo.
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I had the same issue the first 2-3 weeks on Arimidex. I used Smooth Move tea each week, which always worked...discovered it while on chemo!
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Great suggestions! I am having issues as well since I started Letrozole in July. I have incorporated prunes and now added a stool softener but still not regular.
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My constipation issues subsided after the first week...maybe Tamoxifen was still in my system at the same time!
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Missouricat....San Diego is a great city, the USN brought both my husband and me here in 1964. I got out after five years, but my husband retired from the Navy and then another 20 + year career. When he retired from the Navy, he asked what I wanted to do, and I said " I am staying HERE." We have lived all over the States and four years in Europe.
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mnsotamom74,
Hi! I had a similar experience. At first my GI doc told me Miralax was just fine to use long term. One year later, she said no, I am too young (53) to take Miralax daily as a long term solution. She switched me to Benefiber twice a day. Now, I only need it once a day. Also, she recommended Colace every 2 or 3 days. For me every 2 1/2 days is right. I drink a ton of water and get lots of exercise. I recently added 500 mg Tumeric daily into the picture and so far that is also an improvement. It took about a month on the Benefiber and Colace to get me comfortable and working. The addition of the Tumeric, for whatever reason, has taken me from truly acceptable to good in the gut motility area.
Good luck! I hope you find a solution that works for you!
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Has anyone on this forum used CBD oil for joint issues related to ALS and generalized wellbeing?
If so I’d be interested in your feedback on your experience and your general dosing guidelines.
Thanks!
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RE constipation: At bedtime I take one 400mg capsule of Magnesium Aspartate (Bluebonnet brand). Works like an absolute champ.
Also, I don't take Miralax because it has Polyethylene glycol 3350 in it. If it works for you, that's great, but it scares me. I take something I get from amazon called Heather's Tummy Fiber. Go to the amazon page and read all about it, esp the reviews.
[https://www.amazon.com/Heathers-Tummy-Organic-Acac... ]
It's 100% organic acacia powder. From that page:
- No IBS triggers: no psyllium, citric acid, insoluble fiber, artificial sweeteners, gluten, or fodmaps; Never thickens; No choking risk; Dissolves in liquids or moist foods, or cook with it
- 100% acacia senegal, not low grade acacia seyal; Natural, unhydrolized, no additives, colors, flavors, or sweeteners; No taste, odor, color, no grit
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CBK, Yes I use CBD oil on my thumb joints and it really helps. I never had problems with my joints until I was on Arimidex for two years. I stopped taking that medication with the OK from my MO after continuous overall aching and joint pains. I would recommend the oil…..
Surgery 9/23/16, Pure Mucinous, Lt, 7mm stage 1A, ER and PR 95%, HER2-
Radiation Whole Breast
Hormonal Therapy Arimidex 2 years
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Cargirl - What brand and dosage do you take? I have friends who think its great for join pain. I got some recommended by a friend and was very expensive but so far (a week) I don't see much difference.
I had a knee replacement in mid July that is still painful and I'm tempted to stop the letrozole for a few weeks and see if that helps. Thanks for your input.
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Hi Taco1946,
The roll on CBD oil I use is called, Treasured CBD, distributed out of Salt Lake City. I don't know if they are till around, one of my friends tried getting in touch with them and she had a problem. I am sure there are other CBD oils around, but try.
Susan
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I had my visit at cancer care, yesterday and visited with my favorite CNP about all the pain and misery I have been having, I believe, from the Anastrozole. She could tell I was about to have a nervous breakdown. She told me to stop taking it for 1 month and keep a diary to track joint pain and all the other side effects to see if there is improvement. I have an appointment to see my oncologist in November to re-evaluate. I'm almost giddy about possibly getting off Anastrozole permanently!
I had also stopped taking Fosomax several months ago because I thought it might be causing some of my problem since I had been taking it so long! She was glad about that and said no one should take that longer than 5 years because it can start causing the things it's supposed to prevent. I had been on it since breaking my hip in 2012! I had started jogging about 8 months before my last dexascan a year ago and for the first time since I had started it in 2012, there was improvement in my numbers! My CNP was sure it was the exercise and not the fosomax that was the cause of the improvement!
I am to keep a diary to track how I’m feeling each day to report to my oncologist.
I also have to get on a schedule to see a plastic surgeon because I got a recall notice from Allergan about my breast implants.
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Cargirl and Taco
I started Endoca CBD Raw Hemp Oil 3%, and it is expensive. I started with a small and moderate strength bottle. I take it orally; 10 drops twice a day. I have only been on it less than a week, but I feel a real difference.
Mood is calmer, hot flashes have seemed to diminished. Not sure about joint pain yet but I can still up the dosing substantially.
Cbdoilreview.org is a good place to start to find a reputable brand. Endoca has great customer service you can call or email their rep in the states.
I was not expecting the hot flashes to diminish or my mood to be calmer; but there are some evidence to suggest it lifts serotonin levels in body so maybe why I'm experiencing it ! And that it helps with menopausal symptoms.
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@MissouriCatLady - Thank you so much for your suggestion! I will discuss with onc on 11/6 - still have about 5 weeks of Teva. Thanks again!
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Hello, I'm new to this group although not new to the forum. I've been on Arimidex (Anastrozole) since December of last year. I was on Tamoxifen for about 10 months before that. My side effects are not bad, manageable anyways. I have a few aches in my joints, occasional headaches but I'm a migraine sufferer so that's nothing new really, weight gain - I've gained around 10 lbs since my diagnosis, hot flashes and night sweats, insomnia. The one that bothers me the most is brain fog. I struggle with finding the right word at least a couple of times a week if not daily, and I misplace things frequently. What do you all do for this?! I find it SO frustrating!!
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I make "to do" lists of everything I need to achieve daily and scratch them off. From the simplest things (like pick up my kid from school, hahaha) to work related stuff.
That's helps.
Forgetting the occasional word really freaked me out at first but then I noticed my sister had the same issue and she didnt have BC. We are both early 50s, so may just be menopause related.
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Also really important, I put things away in the exact same place. So if I forget my muscle memory usually ensures I can find them. Eg keys in special drawer etc.
That does help but I do keep finding cupboards and things half done that I started doing and then forgot about.
I started doing memory exercises online to try and i.prove things. I think it has helped.
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I found this on another page and thought it might be helpful to those of us here too, in case you have not seen it: Free E book written by Lillie Shockley of Johns Hopkins, "What you need to know about b breast cancer recurrence" It talks about hormonal therapy as well.
https://s3.amazonaws.com/nbcf-production-assets/at...
LinnyG - good luck at your next appointment. Oceanbum, I'm glad you are tolerating your hormonal therapy well! I hate the word finding too, but not as much as the leg cramps. Last night was a better night than the night before, and for that I am grateful. Lisa
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I wanted to share something I discovered regarding brand Arimidex. I found it for $22.10 from CVS on the GoodRX app!! I had already sent my information to Eagle Pharmacy while waiting for my onc appt (which was this week) - I was at least going to try brand to see if any of my side effects might lessen or even go away. I was ready to pay $60/month to find out.
I thought I'd look at GoodRX just in case and it showed a coupon for CVS for $22.10. I could tell my onc was doubtful about it when I told her so I showed her on my phone ... possibly it was a typo she mentioned.
I took my rx to CVS (I'm in TX) and they ran it through and it was valid! They had to order it so I pick it up today. For $22.10!!
If you're not familiar with GoodRX, it's an app you can download and look at retail prescription prices at drug stores in your area. Doesn't matter if you have insurance or not - the GoodRX coupon has the info the pharmacists need to enter to obtain the pricing listed (it's not used in conjunction with any insurance you may have). My mom has saved a lot on meds using it - she has Medicare Part D but often the GoodRX price is less for her medications.
I've been on anastrozole for 10 weeks and my bone and joint pain wakes me up at night to where I can't sleep. I work full time so I can't nap during the day - hoping brand might be enough of a difference to help with that?? Maybe not, but I'll try!
Hope this info helps someone! :-)
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Charleysmom, that is awesome! And I did not know it is not used in conjunction with any insurance you may have, I signed up for it, but did not know that. I'm going back to take a look at that again. I've used brand name and you are correct, it does make a difference, and it helps you sleep better, at least it did for me! I had trouble when they raised the price from $30 to $60 at Eagle though. THANK YOU!!! Lisa happy dance!!
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Just learned this, in case anyone else suffers from leg cramps:
https://www.peoplespharmacy.com/articles/how-liqui...
Thank you to Yogatyme who told me, maybe it will help someone else!
Doctor is calling in script to CVS and they are going to call me with price - Hoping it is $22.10!!!!
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Oh happy day! They have to order it, but I can pick name-brand Arimidex up tomorrow at CVS for $22.10! Please, please, share Charleymom's post above with any woman you know that suffers from side effects of generic hormone pills. Name-brand can really make a difference for some women, I know we are all different, but it is worth a try - and if it prevents you from quitting, it is worth a great deal! Many hugs, Lisa
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Stillme54 I can relate to what you say about all the misery from the Anastrazole, which for me after a few months was mainly physical misery, I was struggling to walk with knee pain. My oncologist switched me to Tamoxifen, which also comes with many unpleasant side effects unfortunately (mainly mood swings and lack of motivation) but at least my knees have improved.
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