For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
-
Gerican:
I, too, have been looking for something for joint pain and stiffness relief. I found Instaflex which worked great but it is sooooo expensive...$70.00/month for 3 capsules a day. It does work however,and I had GREAT relief while using it. Straight Glucosamine & Chondroitin (which I am using now) doesn't work nearly as good. I checked into the MegaRed, my only problem is that it contains Soy and I can't eat or take anything with soy as it emulates estrogen in the body and since my BC is ER+ and PR+ they told me to totally delete soy from my life because it is just like estrogen...So, still looking.
I did some further research this afternoon and I am going to try a product called "Flexacil Ultra" which has the same ingredients as Instaflex but costs less than half on Amazon. I won't get it until the 29th and those supplements take 2-3 weeks usually to start making a difference, so I'll see in the middle of Sept.
If anyone has other suggestions, please let me know. If this stuff doesn't help, I will go back to the Instaflex because it did work, even if it was too expensive.!
0 -
Easy dancer- I went to the health food store today and spoke to the woman there who recommended trying hyaluronic acid suppliments. She said that this acid helps to support the sinovial fluid in our joints and keeps our skin plump. She said I will see a difference in 2-3 days in my skin and hopefully will also feel it in my joints. So I bought some, it costs around $15 for 60 capsules and they recommend two per day. Going to try it and see if I feel a difference with my joints and sore feet.
I did look on line to see if there were any contradictions with medications and/or conditions. There does not seem to be as much info on this oral suppliment, but did find something that said women who have lymphadema should avoid this as it may make that worse. So for the women here who may be suffering from that, this is not the product for you.
I read some on line reviews of this product on several sites that sell it and for the most part, it seems to really work to help the arthritic type pain and stiffness most of us seem to have here. You can also get this on Amazon, which I may do if it works and I need to buy it in bulk. It may save you $4 a bottle/month.
Also, I have had a lot of foot pain (used to be in my heel but now moving to the outside of my feet and the balls of my feet as of this weekend). She recommended a topical solution called Toprocin which she said really works. She actually uses it on her feet especially working in a store and being on her feet all day (my guess is she was also in her 50s like me). I tried some when I got home and felt some immediate relief. Also runs around $15 for a tube and a bit on the bottom of your feet works quickly. For those here with foot pain, definately worth trying!
0 -
Easydancer, if you are not allergic to shellfish, try Glucosamin Sulfate instead of Glucosamin HCL which is the kind they combine with Chondroitin. I researched this awhile back and found that Glucosamin Sulfate is the one that studies have shown to be effective, but even then you have to take it for 3-4 months before you see results.
I am planning to try tumeric capsules also. There is some early evidence that it fights cancer stem cells, but even stronger evidence that it helps joint pain, like that from osteo-arthritis, as much as Ibuprofen does.
0 -
Yesterday marked my first week off Anastrozole (after having been on it for almost a year).
Of course, I wanted all my SEs to go away immediately, but I know that was wishful thinking. According to the pharmacist it takes 6 - 7 days just to get the chemicals out of your system, and possibly up to several months to see reduction in SEs.
My BP has dropped slightly (from 177/100 to 150/90 and sometimes even 140/80) and my joint pain seems a teensy bit better. Of course, I'm using 1/2 tsp of ground ginger in my smoothies every day - thanks, Dr. Oz!
I think what is really working is feeling great that I fired the PCP who refused to be a team player, and the fact that my MO is behind me all the way with regard to this drug holiday.
I now have 7 weeks left to get some weight off, get my BP down, and see some results with nether region issues. Feeling just the tiniest bit better will go a long way towards me moving more and reducing the joint and muscle pain. That was impossible knowing that if I moved the wrong way I'd be stuck with my cane or my walker for weeks.
Baby steps! Baby steps! I just want to see some good improvement after convincing the MO it was time for a drug holiday.
0 -
AnnieLane: I'll be interested in your results with the tumeric capsules. My primary osteo-arthritis problem is the basal thumb joints. If I could get some relief there I'd be tickled pink.
0 -
Andrea.. so interesting to see you will be getting proton therapy, where do you do this> I know most places are not yet doing it.. it sounds so promising, Mayo Clinic will begin in 2015! We know a young man that works with it and also helped develop it! Best of luck with all. Sorry that arimidex is giving you bad se, so far mine are not too bad, at least something I can tolerate but 5 years is a long time.
0 -
Thank you, Friends.
I did check and the Flexacil Ultra has the Hyaluronic acid, and two other compounds that are also supposed to be important for joint relief and flexibility: MSM and Bosweillia Extract...and yes, they contain the Glucosamine and Chondroitin Sulfates as opposed to the HCL which is better absorbed in the body. We shall see how it goes...thanks for all the great suggestions. Much appreciated.
0 -
LisaJayne, I haven't bought the tumeric yet and plan to use it mainly for prevention, because I haven't had much joint pain so far.
0 -
jazzygirl
Thanks for the info on Topricin.My feet have been hurting since last December.Mine also started in the heel then went to the sides.I am going to get this today:) I will let you know my results.
Thank you !0 -
Oh great. Here's a press release about a new study showing the calcium/D supplements are ineffective at typical doses.
---------------
Women undergoing treatment for breast cancer are widely prescribed calcium and vitamin D supplements to prevent and manage osteoporosis, an unwanted side effect of breast cancer therapies. However, new research from Wake Forest Baptist Medical Center finds that the recommended daily doses of these supplements may not prevent loss of bone mineral density (BMD) in these women.
Study author Gary G. Schwartz, Ph.D., a cancer epidemiologist at Wake Forest Baptist, said the purpose of the study was to examine whether a seemingly common sense prescribing practice actually works. "We evaluated clinical trial evidence for calcium and vitamin D supplementation in maintaining skeletal health of women with breast cancer," he said. "At the doses recommended, the data show that these supplements are inadequate to prevent loss of BMD."
Schwartz and co-author Mridul Datta, Ph.D., a postdoctoral fellow at Wake Forest Baptist, reviewed data from clinical trials that evaluated the effect of antiresorptive drugs on BMD and used the "before-after" data from the comparison group to assess change in BMD in pre- and in post-menopausal women. Overall, the results from 16 trials indicate that 500-1500 mg calcium and 200-1000 IU vitamin D, the doses commonly recommended, do not prevent loss of BMD in women with breast cancer. Despite supplementation, women lost BMD in virtually every clinical trial reviewed.
The study appears online ahead of print this month in the journal Critical Reviews in Oncology/Hematology.
Women with breast cancer lose BMD at a higher rate than their healthier counterparts, increasing their risk of fractures which are associated with significant declines in function and health-related quality of life, and in higher mortality rates.
Consequently, it is a common practice to prescribe calcium and vitamin D supplements to these women, a "low intensity" intervention that seems to make sense, Datta said, although it's never really been tested. In the clinical trials reviewed, BMD in the women was measured at the beginning and end of the studies, Datta said, so if the supplementation worked to prevent BMD loss, "you should be able to see that in the data, and we clearly didn't."
Datta said it is possible that the BMD deficits could be worse in the absence of the supplements, but the results are concerning overall because cardiovascular disease is the main cause of mortality in women with breast cancer. There is growing evidence that calcium supplements may increase the risk of heart attack and stroke.
"The take-home message is that this very common practice of supplementation doesn't really seem to be working," Schwartz said. "Future trials are needed to evaluate the safety and efficacy of calcium and vitamin D supplementation in women undergoing breast cancer therapy."
0 -
Has anyone on here switched from Anastrazole to arrimidex? I asked the pharmacist today and she said that some people find Arrimidex easier to tolerate. I'm wonder why my drs have not said a word about this, even when asked. I have a lot of trouble tolerating Anastrazole.
0 -
do you mean from generic to the brand name version? personally, I think what works for one is not certain for another.
I am on aromasin (the generic version) and my doc said it was easiest to tolerate so all one opinion...
0 -
Yes that's what I meant. I've been on all 3 AI's and suffered with each one. Now I'm wondering if brand name drugs might be better.
0 -
hey, go for the brand name and see if it helps you, good luck
guess I am real lucky as no SE that my gym does not seem to help
0 -
I'm unfortunatley one of those that has not faired well on the aromatase inhibitors (tried both) and faired better on tamoxifin. It wasn't until I was switched in my 3rd year that I began to expience some issues and these just got progressivley worse. The fatiuge and hot flashes (so bad they would steam up my glasses) and feeling like I'm walking around in a fog are the worst and the joint and muscel pain following close behind. On top of that insomnia and it's just a vicious cycle. I have two more months and with the new reserach out about extending hormone therapy I'm not sure what to do. I have no doubt that this has played a huge role in my depression and being unable to resolve it.
I was diagnosed at 47 and thrown into menopause because of chemo and I think anyone who experiences it this way often experiences the symptoms more severly (my mother never had a hot flash).
I honestly believe that everyone is different and no two people will have the same experience. I have had bad weight gain (actually lost weight turning chemo and radiation) and it's more to do with my energy level. When I was on tamoxifin I did The Ride to Conquer Cancer (it's two days of biking 130km per day) there is no way I could have done this on aromasin. Also during the training for this ride I did not loose a pound and actually gained a few. There is no way that should have happened.
I just want to share my personal experience as I think important to remember that we all experience this differently. I love it that some people have been able to go through hormone therapy with little or no side effects but I'm just not one of them. I faired better during active treatment. I think my biggest misconeption was that I was going to be on this stuff and still feel exactly how I was before.
I'm looking forward to October when officially finished my "5 years" and can take a break until I see my oncologist in January. Then we will discuss how I feel not taking the hormone therapy and whether continuting it for another 5 years is even an option.
Would love to hear how other's feel about this.
0 -
When I look back at the time after my surgery and even the time on chemo, it seems decades ago because I felt so much younger. This is a very insidious pill. I don't think others can 'see" what I feel. it' a strange thing when you feel worse after you are supposedly cured.
But right now i'm really worried. I think I feel a lump on my chest. How can we NOT be depressed when we feel lousy and are never sure that we're really ok?
0 -
I guess I feel that no one is ever sure they're really OK physically, and if they think they are, they could easily be wrong. That's where, for me personally, Jesus is my source of security and the sense that ultimately, I'm OK.
I want to do what seems wisest and best to take care of myself, but all our days are numbered. I'm thankful to have lived long enough to see my 3 children grow up and to know my 5 grandchildren and expect to meet my 6th in October. Anything more is just gravy.
If I stick out 5 years on this pill, I don't see myself taking it for 5 more if it seems to be diminishing my quality of life by then, though. But who knows what may happen between now and then, or how I may feel about it in 5 years?
0 -
Roberta, It just goes to show you that everyone does have different reactions. I too was thrown into menopause from chemo. But I found Tamoxifen to be a lot harder to deal with than Anastrazole. I had worse hot flashes, aches, night sweats, and sleepless nights before I was switched to Anastrazole. Most of those SE's have disappeared. I have been able to keep my weight stable so far. I am keeping my fingers crossed that I can continue to do well on it. I know many people start experiencing SE's after a period of time with this medicine, I just wish I knew why.
0 -
Chickydee - I know it just goes to show that there is no way of predicting how people will do on these drugs. I walk with a woman who is taking tamoxifen and has had no problems whatsoever. I will say that the side effects were not imidate and that they did take time to get worse. It's really hard to figure out what is a side effect and what just is the new "normal". My oncologist was saying that some of his patients are completley surprised when they go off the hormon therapy and they realize how they actually should have been feeling. I'm really hoping that I notice a significant difference because I certainly don't like how the last 3 years have gone. Put on top of that working with a bunch of women who don't get it and made my experience even worse. They knew what I had gone through and I what I was still going through but made a whole lot of judgements based on no knowledge.
0 -
roberta37 I went into chemo pause (age 49). Last period 2 weeks before chemo. I went straight to Anastrozole with monitoring because my onc felt at my age I wasn't going to get my cycles back. Even on chemo my hot flashes weren't that bad but actually improved on Anastrozole. I only get them when I eat my chili. Jalapeno peppers seem to be my trigger but still I'm never hot and sweaty. Just need to kick of the covers.
My (older) sister had terrible hot flashes for years yet went through menopause naturally. It's a crap shoot. I too wonder what I'll really feel like in 2.5 years when I get off this stuff. I know I'm pretty lucky but who knows… when you start 5 weeks PFC and were so stiff on chemo of course I felt better on Anastrozole
0 -
Hi all. I am just past 3yrs on Anastrozole. I am now just starting to experience joint/bone aches especially in both knees. I am in terrible pain climbing stairs. I was on Tamoxifen for 7 mos and then switched to Anastrozole. Wasn't so bad at first, mostly hot flashes and some aches and pain and sleepless nights. Everything is getting worse now. I love to excerise but I am starting to struggle. I live on advil pm and that is not working for my knees. Any thoughts.
0 -
Could be OA. As much as we tend to blame everything on AIs, sometimes it's not. Have you seen an Ortho for your knees?
0 -
I have seen my ortho, and spent 8 weeks in PT strengthening my knees up. Responded very well and was pain free for a little bit and then pain came back. Will be calling my ortho and my ongologist. Thinking about asking for a bone scan just to make sure the cancer has not spread. I am always thinking about that.
0 -
I had the bone scan. The dr was shocked by how much arthritis I have. My back, my knees, my fingers, my wrists, my toes, my ankles. I knew I hurt before the Arrimidex but nothing like what I go through on the arrimidex. I just ended a one month vacation and the pains were 90% better. I also wish I knew why.
0 -
AnnieLane - do you think ground turmeric would have the same effect as turmeric capsules?
The reason I ask is because I have started adding 1/2 tsp of ground ginger to my smoothies... and it would be just as easy to add the turmeric. (Unless it made things taste funky...
)0 -
Roberta, Hi.
Worsening of *depression* and fatigue/joint pain are HUGE reasons why I won't do ANY hormone therapy. ASIDE from the super serious SE possibilities (thank God, so far,I'm Stage 1/no node involvement/low Onco DX Type scores).
I feel for those/MANY of you, who really suffer through the horrible SE's...:( Don't know how you manage it...must take it's toll on you ON TOP OF everything else w BC & other treatments!
I don't even know if I'd take the stuff if I was at a higher stage...such a tough decision! I'll have to cross that bridge if it
comes...sigh. But I realize we all try to make the best treatment choices for ourselves...it just PAINS me that we *can never really KNOW* WHO the various treatments might or might not help. THAT SUCKS. Hopefully, some day SOON that will change!
Proud,
I didn't realize some women w DCIS also choose hormone therapy...?
I know it's only recommended to "consider" for Stage 1. Did your Onc suggest you do H. therapy? What does NCI say about it?
Thanks!
Bless us ALL!
Violet0 -
my 5 years are up in Dec, my last time at onco when I asked about ending the aromasin...she still said 5 years was all recommended for me
I see her in a few weeks, so you know that will be a question on my mind. I really not sure about my SE, my feet are awful, and who knows it that is from the AL. I am tired so tired at the end of the day, my PCD wanted to check me for all sorts of things when I said I was tired. Not gonna get into thyroid stuff untill I see how I feel after ending the AL. Then will see....counting the weeks~~
0 -
Blessing, put tumeric in the search box.....there is lots of info on another thread, I forget exactly which one....natural remedies. Apparently the regular tumeric (curcumin) is not that effective...not bioavailable...so you need to add piperine (black pepper) to help it get absorbed by the body. I also remember they talked about sprinking tumeric and pepper on foods...and it certainly is used in many cuisines. I ordered a combination from ProHealth called Longvida but haven't taken it yet.
0 -
I started Anastrozole in July and only lasted a month on it before I just stopped taking it last week. I stood there with the pill in my hand and just couldn't do it another day. I just always felt crappy, I was on the verge of tears most of the time (I am normally not a crier), felt like I was heading into depression, was exhausted all of the time but could never sleep more than 3-4 hours total at night. I know many women gain weight on it, but I lost weight because I felt so terrible. I just didn't really care about eating. I saw my MO's PA today about the side effects and we decided I would take a break for a couple weeks then try it again. But this time I am going to take the name brand and not the generic to see if I can tolerate it any better. Unfortunatley she said the side effects I was having are pretty typical for all of the AI's.
Really???? If this one doesn't work, we will try another one and hopefully come up with one that has less side effects.I thought I did pretty good with the whole cancer recurrance, chemo, surgery, PT thing, but this little white pill really knocked me for a loop! I have been off of it for 5 days now and I am already feeling better.
0 -
Bren the exact same thing happened with me. I took it in July as well. After about three weeks I couldn't take it anymore. I stopped it and almost immediately began to feel better. I stayed off for two weeks and then spit it in half and tried it that way. After a few days the symptoms stared returning so I just stopped completely. I haven't called my MO yet. I just had my exchange surgery today so I'll call her tomorrow or Tuesday. Please keep us updated as to what works for you. Thanks.
0
