For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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My mom says she will never stop coloring her hair. Granted it's lighter than when she was younger (used to be an amazing deep auburn brown).
OK I'm off to the gym
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schoolmom - I used cold caps also and shed during and afterwards too, as I believe you know from the cold cap thread. I've been on Armidex since November and have not had any thinning or shedding. In fact, I just came from the hairdresser where I had my hair colored back to my "natural blonde" and trimmed today and she and the owner exclaimed over how much growth I have had since my last appointment a month and a half or so ago. Easily 3/4 to 1 inch all over, but the part that most amazed them is how much new hair is coming in all over my head. It's a good 3-4" long. I can tell it's new because it's a slightly different texture and wavy, versus my staight hair.
I credit this to the BioSil liquid I have been taking as it has been clinically proven to grow thicker strands and more hair. I posted one of the studies some ways back in the cold cap thread, but I don't know where anymore so I can't point you to it. I also take Biotin and Iron daily which are supposed to be good for hair. I was surprised to find out that they were so impressed by seeing my new growth last time that they have been telling clients to start using BioSil, and I actually overheard the owner telling a woman about it this morning. I get my BioSil on Amazon from which ever seller happens to have it as I have not found it locally.
It calls for 5 drops in a small amount of juice (to mask its flavor) both morning and evening. It is supposed to be good for skin and nails as well.
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Hortense, I took silica during chemo but then stopped when I finished the bottle I got from the health food store. Is the biosil similar? Maybe I should go back to taking it. I started all my vitamins again last week after stopping during chemo and rads. My onc said I could take them but I did not want to give any oomph to any cancer cells lurking around. Taking multiple vit, caltrate with D, vit E, fishoil. I finished my last chemo Jan 7 , almost 3 mos ago and I have about 1 1/2 inches new growth where in the back...........so it is growing about 1/2 inch a month.
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schoolmom - That's a good rate of growth! You are doing well. My oncologist would not let me take vitamins during chemo, but I was allowed to take Vitamin B and L-Glutamine to help stave off neuropathy along with icing. I started taking BioSil after chemo ended.
I had read that the liquid form of silica is more easily used by our bodies which is why I decided to take it rather than the capsule form. I found a number of studies that used it in double blind tests and the results showed that liquid silica really did improve the thickness of hair and also the diameter of the hair shafts. It does take a while, quite a few months, for it to do any good, so I am going to use it for the long haul.
Like you I am also taking Caltrate with D, I just started a mulitivitamin and fish oil capsules, and I take Biotin and iron as they are supposed to be good for hair. My doctor as Memorial Sloan Kettering told me to stay away from anti-oxidents suppliments so I try to get my anti-oxidents by eating well. It's honestly so confusing. I had shied away from multivitamins as I had heard that they might feed cancer cells - as that's the last thing I want, but aparently my doctor doesn't feel that is the case.
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I have such low back pain. Is it SE of anastrozole or bone mets? I've had back pain prior to dx so am unsure. Anyone else dealing with this and how do you lessen the discomfort?
My hair is sparse and thin so I've started using minoxidil and nioxin shampoo. Hair seems better, thicker. Debating when to color as it has all pretty much grown in grey. I expected the grey and hate coloring my hair, but I'm too young to look so old. I will most probably color late May as I hope to go wig free in June. I hope by then the sparse areas will have filled in and overall my hair will be couple inches long and will lay down rather than stand up on top. Spike hair is not my style.
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Sherryh16- I have had some lower back pain since I started Arimidex, but have had issues with lower back pain off and on for years. Massage helps, also a heating pad has helped me with lower back pain in the past.
When do you go see your doctors for your next check up? If it is not coming up and you are worried more may be going on, might be worth going in to get things checked out.
Hope you can get some relief.
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Thanks Jazzygirl.
See onc on 4/18. Will definitely discuss it with him.
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Did any of you see this? A new study of joint pain and stiffness associated with Arimidex and other aromatase-inhibitors:
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WaveWhisper,
I had received an email regarding the study. I have completed the initial survey info and have been found to meet their criteria. I look forward to providing my input.
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Wavewhisper- thanks for sharing that link. I have been fortunate to not have really bad pain or stiffness so far, although I have some. Finding ways to manage that on a daily basis, as I am just a week into Arimidex. But I think of living with this for another 5 or more years (the med onc suggested maybe 10 years).
I have heard a lot of women opt out of the meds shorter than the time recommended as they are just too hard to live with. Like all drugs, they help one thing but cause other problems. I am glad to see someone researching the difficult side effects that go with these meds we are recommended to do for so many years.
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WaveWhisper.......unfortunately it's only available in the States.....I'm in Canada and was not able to sign up for it.
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Sorry it's not available for our northern sisters. I filled out the online survey and was accepted. I'm eager to see if we get phone calls. Please post if they call you. Like others, I'm glad that they're researching the pain associated with AI's. My pain seems to be getting worse, if anything. I truly don't want to give up the meds, because I think they're our best defense against recurrence. But the thought of 4 (or 9!!) more years of this really gives me pause. I already feel like I'm 80. What will I feel like in 5 years??
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WaveWisperer, I just signed up and was also accepted. Like you I am curious when they will call. I will definitely keep you posted. I have such bad joint pain as well, so I too am thrilled someone is going to look into this. Let's keep in touch. I will definitely let you know if they contact me.
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I just was accepted in the study. I just started Arimidex 10 days ago. It will be interesting to see what the study turns out like.
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I started in July. I was accepted in the study.
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Saw my regular MD today and complained of numbness in my fingers, especially the tips, and especially my LE hand. She confirmed that it was likely carpal tunnel with a real possibility that it was caused by Arimidex. What fun! That's in addition to stiff joints, especally knees. And I don't even know what the drug is doing to my existing osteoporosis. When I see my onc in June or July, I am going to discuss it with her. I don't even know my percentages. I know she usually believes in following the regimen, with the bottom line of saving lives. I don't fault her for that, but 8 months or so into this regimen, I am not so happy about all these symptoms. When I first started on the drug, I thought that I could live with stiff knees part of the day, and I still feel that's ok. Carpal tunnel is a different story, because it mostly affects my LE hand which is enough trouble by itself. Basically, you can't put cancer behind you ever. It always lurks in the back of your mind, especially when going for tests and markers etc, and it shows up in all these things that affect us, especially the SEs. I don't think that others fully understand that.
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dassi52 your PCP can order a bone density scan to find out what is going on with your bones. My onc has ordered them (family history and I was osteopenic when tested before chemo) but I wouldn't be surprised if she would have my PCP handle the osteoporosis when I get it. And I do mean when. It could be in 2 years or less
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I am happy to see others who have been accepted into the study. Clearly it is a big enough problem that a study is being done on the problem. I am having a steroid epidural next Thursday to see if it will help the neck pain. It is an outpatient procedure at the surgical center. If it helps I will be thrilled, but I still have knee problems, hips, and lower back as well as hands. It is a rather large boat many of us are in!
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I think I am in the same boat. I have had back problems before and had an eipidural. Now that I am taking Arimidex, my neck is so stiff and hurts into my right shoulder (same one I had to have surgery done on rotator cuff 10 years ago) that my doctor suggested I see a physical therapist. I just started but they realize I have several issues and it is hard to tell which thing is causing the pain. My auto immune condition (dermatomyositis) can cause pain and my ongoing back issues has had me with a chiropractor for a year. I feel it is important to take the Arimidex. I go to my oncologist in a couple of weeks and I will bring up the pain.
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I am just about 2 weeks in using the Arimidex. How soon did the aches and pains start for most of you? I already had knee issues and swelling and knee surgery last summer. The cold weather caused some swelling and pain but it is better with Ibubrofen. The sweating that I had the first week is gone and waiting for the next shoe to drop.
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Schoolmom, I think when you have issues to begin with it is hard to tell what is going on. I took the picture of my MRI to the physical therapist on my back and the comment that came out of his mouth was "oh my that isn't right". When you have issues to begin with, it is had to tell what is caused from medicine. I haven't had a lot of issues with the Arimidex that I didn't have to begin with. I am just know I don't want to cancer to come back.
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schoolmom some people noticed them pretty soon. My SE were/are pretty minor. I noticed about 3 months after starting but a year later the stiffness was much less noticeable.
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Schoolmom, it was hard for me to know whether to blame arimidex, osteoarthritis, osteopenia, omeprozole, or other stuff for pain. I am sure they all contribute. All I know is I am used to pain, so onc and I don't want to switch as I can live with it, mostly. Taking pain pills when I must. But I took that before A so guess its not much worse. And, sorry, I bet that all was no help! LOL
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Anastrozole is the wierdest medicine I've ever taken. About a month into it I had leg pain, like shin splints. Took claritin and pain disappeared and has not returned. At first had cold sweats which eventually became hot flashes. Usually have a strong, wringing wet hot flash once during the day, and a couple of minor ones at night. Overall, not too bad, nothing that would make me stop taking the medicine. Then I developed pain in my left hip. Noticed it when I slept as that is the side I prefer to sleep on. So obviously, I switched to sleep on right side. Then had some pain in that hip. Then all hip pain disappeared and I was left with a pain in my left butt cheek. I assume this is residual pain from hip which has affected my sciatic nerve as on occasion I can feel a shot of pain down my left leg. Oh joy! Was becoming concerned it may be bone mets as it did not go away for well over 3 weeks. Then just over the last day or two, I just realized the pain was gone. Geez........ This med is really strange. Can't wait for the next pain to appear. I, too, have signed up for the study and have been accepted. Waiting for phone call or an email. Will sure be interesting to see what others have to say about Als and the SEs.
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I also signed up for the study and sincerely hope they'll take every single one of us. I started arimidex on Monday (yes, April Fool's Day) with a cowardly 1/2 pill for this first week. My MO was very clear that this is not what he recommends, but I just keep thinking that menopause happened gradually, so why not sort of ease in for a few days. For those of you who are "established" with this drug, I'm wondering how long it was before the side effects raised their ugly heads?
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Hello ladies- on the osteo concerns, I had a my first dexa scan last August before I was diagnosed and as part of being close to menopause. My gyn ordered that as a baseline. I never got the results from that scan, which also occurred during my same annual physical process, that is when the bc was found. I was asked to have another dexa scan last month, before I started Arimidex and they also got a hold of the earlier scan.
Long story short, I found out from both reports that I am osteopenic and was surprised as I am a larger boned woman. But my mother also had osteo in her later life.
I recently realized too that the cancer docs are not going to help me with this, they will only monitor the changes. My sister is a physician and said in addition to taking calcium and doing weight bearing exercise, (which I do but am creating some new routines for that now), one should have their Vit D levels checked. Many of us have low Vit D levels and it contributes to many things including ca absorption by the body and mine have been low in the past. So I am making an apt to go see my PCP about some things on this.
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My onc looked at my bone density results before prescribing Arimidex. He said I need to take Vit D, continue my other multiple vitamins and supplements ( E, fish oil, Caltrate etc) and recommends the Prolia shot every 6 months to deal with osteopenia and effects of the Arimidex. Since it blocks estrogen, this causes the bone issues which I already have. I also already take Fosomax prescribed by the endocrinologist for the osteopenia. My PCP deferred to the specialists on this issue. I keep saying I am going to go back to the gym and do weight bearing but still have yet to make it back.
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Jazzygirl everyone up north usually gets tested for low D but every breast cancer patient should be tested because they find that many of us are… if if you live in sunny New Mexico. I was diagnosed with low D 8 months before breast cancer diagnosis from my PCP. I was in the single digits!
I too was tested before chemo/chemo-pause and found to be osteopenic. I wasn't shocked. I'm the poster gal for it. Thin, small boned, Caucasian, drank lots of diet soda, used to smoke (7+ years ago but not heavy) and have a family history. I did lose quite a bit on chemo/chemopause but the 2 density scans I've had since then show a much smaller loss. Last time almost nothing. My onc did tell me to exercise (already doing that) and increase my calcium. If there is an issue my PCP will take care of this but my onc still orders the scans. I'm still osteopenic. My doctors don't treat osteopenia. Maybe in 2 years I will need treatment.
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My MO told me to stop the calcium supplements because of conflicting studies. I am early osteopenic but I welcomed stopping those horse pills...plus they gave me heartburn. I will just double up on milk/yogurt and cheese etc.
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Schoolmom I'm almost on the same protocal as you - Arimidex, Vit D now increased to 5000 iu a day and now Calcium w/magnesium but not D; Fish oil (Lovaza). You better tell you onc about the caltrate because if it also has D it will be too much and as far as the Prolia shot - I doubt you can take that and Fosomax - be very careful I think your going to overdo it- check with your doc...
don't make me worry about you 
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