For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Ruthbru you are so right on. Just how I feel. Keeping busy and staying active, seems to help alleviate SE. Also leaves less time to dwell on the doubts about aches and pains could, might be, mets. Hard to not wait for the other shoe to drop. I personally have some SEs, some aches and pains--walk like a duck--when first getting up. If I could just get my hair to grow back, I'd feel pretty "normal" again.
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Sherri, that's the same as me. I wake up and walk like a duck then aches and pains and hot flashes, exhaustion after little effort. (or accumulated from cheo & rads & work)My onc said I could change to a diff hormone blocker if I want, but I'm afraid of the enemy I don't know....Is is true that the pains could go away? Luvbugs, I have xanax too but am always nervous about using it.
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Re: Hair - I take liquid silica in the form of BioSil drops along with Biotin and Iron daily. I used cold caps and kept my hair through chemotherapy but had shed a lot of older hairs so my overall volume had thinned out. The cold caps company suggested taking silica along with iron and biotin and I have to say I have the most amazingly thick growth of hair coming in. My hairdresser is so impressed she is now recommending BioSil to clients.
I have read that clinical trials have proved that liquid silica - which is more easily absorbed that capsule forms - helps to stimulate hair growth and cause thicker hair shafts. It will take several months to see any difference as hair grows slowly, but I can vouch that it works. I get mine from Amazon from whichever company offers it at the best price.
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The great thing about switching AI's and taking vacations is that now I know what is causing the pain. Before I was never quite sure. Of course I still have to be on guard but I don't go into a panic over old familar pain.
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Ruth contacted my oncologist office via a message system and asked about the ativan. They want me to go see one of their psychiatrist because the KASPER system in Kentucky doesn't allow a controlled substance to be distributed without it. I am glad they are not just writing a prescription, but that means another doctors appointment. I am trying to stay busy and I do but I have a lot of stress in my life. Maybe I do need to talk to someone.
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Talking to someone is good; I'm glad they want you to set up an appointment, not just throwing another pill at you without giving you the help to sort things out....which is the route some doctors take....it speaks well of your oncologist.
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I just bought some glucosamine/chondrointin yesterday then read the ingredients and it does include soy lecithin. I have been told to stay away from soy as much as possible so I wonder about this. Of course it seems a lot of things contain soy. Do any of you take this supplement or have you talked to your doctors/oncologists about taking it? I will do some research on google about it. In the meantime, my knee seems to be coming around good now (rap on wood). I do think I could have tweaked it doing grounds keeping and mountain bike riding. I guess for a 60 years old, I shouldn't just hop on a bike that I don't use on a regular basis. I am trying to bike short distances to break myself in. Even bought a helmet so hope that wasn't a waste of money. Walking works for me so maybe I had better stick to that.
I wish you all the best as we continue on this unknown path we are on. But at least we still have a path to take. I too have very dark moments even though, overall, I feel great. I keep telling myself it is going "too good." People think that is being negative when I say that and perhaps it is but there is no denying the uncertainty of it all and usually these are people who, fortunately for them, have not been give a cancer diagnosis. I really make myself sick prior to each 4 month followup visit and if it includes a mammogram, I really become a basket case. That is why I asked for the anti-anxiety prescription to take prior to these appointments and my doc had no problem with that but she did right a prescript for 30 pills not renewable so she wants to make sure that is what I am using it for I guess. Most of the time, I am just fine but I remember all too well going to my "routine annual mammogram" in July of 2011 NOT worried a bit like I normally am prior to a mammo. Wham. 2 months later I am doing chemo. So.....maybe worrying does work afterall. No, I know it doesn't.
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It's been a long time since I was researching, so I can't even tell you where I found this; but according to what I read, soy lecithin is not the same as soy, and is OK.
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Thanks Ruth, after googling it, it does seem okay but I think I will check with the doc's office first. As you must know, that is one question they always ask on these appointments, what supplements am I taking and run down the list each time to see if I have added anything new. Congrats to you as I see you have gone beyond the arimidex phase now. Your tumor pathology seems quite similar to mine. I was very light on the PR but it was still considered +. I was 98% estrogen receptive, but that danged Grade 3 is what made chemo my choice. My onco score was 24. You are an inspriation for sure.
Thanks again for the info.
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What does anyone know about soy protein isolate? Is it thought to increase your estrogen? It's in a lot of nutrition bars and fitness items. I try and take in protein at every meal to manage my fibro.
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I know this may not have anything to do with SE from Arimidex, but I posted this in another thread this morning. You guys have given me so much help:
New problem. I was trying to do some filing (hate it) and the filing drawer I was using caused me to lift my arms up a little above shoulder level. Did not have any pain from it that day. Yesterday I started having a really sharp pain close to the site where they removed lymph nodes. I put heat on it and then ice. I finally had to take a pain pill (very few left). Today the pain isn't there until I try to lift my left arm. Fixing my hair wasn't easy. I can feel the scar tissue in that area but have not had a problem until now. I really don't know what to do. Any suggestions?
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I had the same thing when I would put on/take of shirts over my head. It was more in my upper arm area than the node location. My surgery was two months before yours. The pain is gone but still feels like stretching muscles sometimes when I lift my arm above my head. I massaged my upper arm gently and it seemed to relieve it. Did not mention it to the onc. because I never thought of it when I saw him.
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I still have numbness and tightness in my arm. My scar is irritated by my shirt and the back of my arm hurts when I do anything with my arm above my head. I think this is the new norm.
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My numbness and tingling in my arm and shoulder, upper back has improved slowly over time. It's not as tingly and itchy. Still some numbness but its not so annoying. The pain where my lymph node was removed is less so now too. It's been about two years now. Hang in there.
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Claudia the pain you are experiencing is very normal. It won't be this bad forever I promise. It takes a lot of time to really heal well. It will feel better, but I know that the it is frustrating. Knowing it is normal though helps. We have all been there.
Ruth loved your post about "WTF just happened". We go through so much so quickly! Then suddenly the active treatment vanishes and we are settling for taking a little pill every morning as we recover. It is bizarre.
Oh thanks so much for the prune recommendation. I am not fond of them, but make myself eat them and they do help.
Lago, how are you feeling? I am really interested in using the special shampoo. My hair seems to grow fast, but it is still falling out and seems like a ton a day. I am forever surprised I still have hair on my head!
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I am so glad to have all of you to help guide me through some of these issues. When you go through surgery and radiation, you have resources to ask questions. Now I feel like I don't know who to ask when something new happens. If I think about it when I have a doctor appointment and ask my question I usually get the "I don't think it is anything to be concerned about" or you need to ask your _____ doctor. I contacted my oncologist about getting Ativan (didn't want something I had to take all the time) and she asked me to talk to a Behavioral Oncologist. I agreed and when they called me they told me they didn't take my insurance. So what now. Contacted the oncologist and left a message. I guess I get to wait again and if my anxiety gets worse I will just have to wait for an answer. Again so glad to have all of you.
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How frustrating, Claudia! I hate insurance companies and their stupid games.
Here is a link with some gentle stretching exercises that might help with the arm/shoulder stuff:
http://www.cancer.org/Cancer/BreastCancer/MoreInformation/exercises-after-breast-surgery
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Claudia-perhaps your GP or internist/family doctor could give you something simple for anxiety. Some of these specialists can take so long to get into. Generally your 'regular' doctor can be helpful and they usually understand that having breast cancer can be stressful. When I used to see my oncologist I thought it was ridiculous that she could prescribe an AI but nothing to cope with the side effects. I think it makes it difficult to comply with recommendations because there is little coordination of care post immediate treatment.
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They probably wait to see your SE before prescribing anti anxiety drugs etc. Not everyone has those SE so they really should not be handing out those meds without symptoms.
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My son and dil are both psychiatrists. They say that you should never take psychiatric drugs from an internist. They don't understand them. But my onco did prescribe Lexapro for me. It seems the oncos should be the experts on this as the cancer is the primary threat and they know the interactions between anti depressants and anti hormonals. To tell the truth, my onco prescribed the wrong anti depressant for me, at first, Effexor. It raises blood pressure and she knows I've been battling blood pressure problems. I guess in the end we all have to be on top of things ourselves, not an easy thing when you're sick, but necessary.
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Well I found it a little insulting to be told I needed to see a psychiatrist for my difficulties with mood that occurred due to having no estrogen in my body. I have had a full hysterectomy, was rightly and abruptly taken off of ERT, and then several months later began follow up with an AI. About 6 mos. in, when I was depressed, the MO said "have you considered seeing a psychiatrist?" I have worked in psychiatry. There was nothing psychiatrically wrong with me except that I was suffering from estrogen deprivation (to prevent cancer recurrence). Women in my age group (50-60) have the highest rates of discontinuance of these meds. I believe that may be due to the fact that we are already struggling with menopause. One study I read said 80% of women do not complete the 5 years, with side effects being the primary reason. If our oncologists worked with us to diligently assist and treat our side effects perhaps that number would be higher. Sorry to go on a rant. I felt at times MOs responses have been not much more than blank stares of worried concern.
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I agree. It's as though there is this terrible time pressure so our needs are not addressed. And even when I ask, I'm often dissatisfied with the answers. That is an interesting percentage that quits.
When I first was prescribed the AI I wondered why, if someone has 100% estrogen dependent cancer, they would have a recurrence at all. When I told my son that it was necessary to take the Ai's for 5 years he laughed and said,
"Non-compliance. You can't get anyone to take a pill for 5 years. I'm lucky if hI can get a patient to comply for 5 weeks!" I asked my onco what he thought of that and he disagreed. Said the cancer can hide out in nooks and crannies. But 80% don't comply? No wonder there is recurrence! Not that that is the only reason but I think the statistics may well be reflecting non-compliance. I myself have been on and off several times during the year and a half since I started. And right now I'm fighting depression, sleeplessness, etc. So hard to tell what is causing what.0 -
Timbuktu- I have read a little today about Lyrica for fibromyalgia. WebMD indicates it decreases nerve sensitivity. As you have Doctors in the family, I am wondering if it might be possible for you to have a family conversation about the use of Lyrica to decrease AI related nerve pain, just as a hypothetical (I don't mean to impose but am interested in the science here). I myself may try it to stabilize my fibro, then possibly re initiate an AI. I also read that research is showing L-Carnitine reduces nerve sensitivity for fibro as well. I am planning to try this first combined with exercise, possibly Yoga if I can motivate. Lyrica's most common side effect is fatique. I truly need to exercise and I don't want to be too tired to do it.
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It's funny, I've been listening to the Lyrica commercials on tv and the warnings are horrifying, I can't even begin to think of how it might interact with everything else I'm on,
I have learned the hard way not to trust my son and dil when it comes to medical issues. The last time I spoke to my dil about anything she told me she had a patient who went to an alternative medicine place and tomatoes will prevent recurrence, I tried to be respectful but in the end I just asked "Don't you think that if tomatoes could prevent recurrence Memorial Sloan Kettering would know about it." My son's advice has been equally ridiculous. He told me I didn'thave to go to a good hospital for a mastectomy, "a chimp can do one". Well, the hospital i went to misdiagnosed me, missed the cancer in my nodes, etc.
Luckily for everyone he does research and works mostly with mice.
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I think the actual statistics are more ~40% who don't finish the five years. I expect to be among those who do finish.
"Compliance" can mean remembering every single day to take the anastrazole tablet. I admit to skipping a day here and there. But insignificant in the scheme of things. So in that respect, I could be among the 80% who are non-compliant.
Anyway, I think that exercise is the biggest help in combatting side effects. I admit to a few of these, the most annoying of which is a metallic taste. At the same time, I feel sore much more from the exercise I do (sprung glutes and sore pectorals, for example) than from the anastrazole.
Exercise is what I need to be doing anyway as a lot of other things it helps with....including being able to EAT! The most important thing it helps with in BRAIN function, and of course mood.
Anyway, what I do know about anastrazole is that with surgery and chemo alone, my chances to getting to 5 years would have been ~75%. Adding in anastrazole, this jumps to >85%. Plus, I think that adding in exercise and aspirin therapy bring this up to >90%. Anyway, these stats are sufficient to convince me of the value of doing BOTH the anastrazole and exercise. So 22 more months of anastrazole, and exercise for as long as I am able to keep moving.
I expect that to be decades.....and include fun things like cycling, hiking, and skiing. - Claire
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Timbuktu- Ha-ha. That's doctors for you.
You are right on the Lyrica. The potential for side effects is a concern. I know of people who have taken it and gained large amts. of weight. That can increase your estrogen/risk right there. There are lycopene and reservetrol supplements that might be helpful, although it is best to get those from food.
Clare-yes I have heard that exercise can reduce recurrence risk by 50%. That is about as much as is accomplished by taking the med for me, statistically. That is one reason it upsets me so much that I find it hard to walk and bike ride with the medication. It is wonderful you are able to be so active and take the Arimidex.
I tried to get a fibro/AI thread going but it hasn't taken off. That's too bad as I know my concerns and problems are out of the norm. Btw-the study did not speak to noncompliance. It spoke to discontinuance. I understand my risk of recurrence is higher than others who can take the medication. I suppose I may need to just learn to accept that.0 -
hmm, that I find this discussion today. I just decided to take a 2 week vacation from aromadex. I have been religious on taking it for 4 years, 7 months. Recently I have begun to think my weakness in the legs may have to do with the med. I work out at the gym 4 times a week. Never got back on my spin bike after rads but doing more with a trainer and weights than before.
Doctor is accepting for the 2 week thing and then we talk but I am 64 going on 84 right now!
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Yes, weak legs. I've got those too! I'm 63 but feel 83. Really. My friends in their 70's have a lot more stamina than I do.
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So I'm working through this thread and I thank all of you for the fantastic information on your experiences with these magical and annoying pills. I just took my first Arimidex last night. How long do you think it takes before enough builds up in your system to experience side effects? I know it can't be immediate, just like the SEs won't go away one day after not taking the drug.
I've gone through menopause naturally, symptom free, not one single hot flash or night sweat. So I'm hoping it all stays good, but I sincerely doubt it. I did get some blood tests for FSH, estradiol, prolactin and testosterone, and I'm definitely in menopause. I can't believe it all happened with nothing bothersome, but I think this little pill will change that...
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For those of you struggling with the pain from A, did you have your doc order PT? I can't tell you how much relief I got from the chemo rehab PT. She knew why my arms hurt, gave me ways to massage when pain was high. Please ask,.it may be what you need so you don't have to take more pills. Pbrain,.I went through menopause before tx. I had some mad SEs, including drenching wet hot flashes daily. I still went through cold waves and hot flashes with A, but not as often. Cold waves came before the hot flashes, lasted an hour or so, and the hot flashes were over in minutes. But I will be on a year in August, and my SEs started within the first two weeks. Joint pain being one. But I wasn't sure if I could blame A, as of course I always have joint pain! LOL. I just wanted to let you know since you seem to be sensitive to a lot of the same things I am, lucky you!
To all, much love and have a great weekend.0
