For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Is dry flaky skin a SE? I hate using lotions, feel like I'll slide out of my clothes. Have tried Many. Seems like a pill, maybe E or something internal would work better. But what?
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Spookiesmom, I thought I was the only one who didn't like lotions! I will use stuff on my hands and legs when they dry out but I hate it on my torso and never use anything on my face (besides foundation and blush, and lipstick).
Mena, As I recall, I stopped Nexium because it didn't much more than Prilosec for many more $$. And then quit Prilosec when it came out about harming your bones. Went to Zantac 150. I take it morning and just before bed, that seems to work pretty well for me. Of course, I have be to sensible about what I eat of my triggers but most of the time it works okay. I'd be highly ticked at your doctor too for not being up on the side effects of Prilosec/Nexium. I hope you found someone different!
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PontiacPegg, thank goodness I am so.much into the medical field that I have learned to always be one step ahead of the doctor.
Funny, how my memory is shot, yet when I read anything to do with drugs, desease or , treatments, I remember everything !
My first oncologist never told me that I should get a DEXA scan when I started anastrazole.
I took it upon myself to get the script from my PCP. When she saw the results she only told me to exercise!
When I saw that my Vit D level was a little low, I took it upon myself to start taking a supplement to increase it. I swear, maybe the insurance should be paying me for the visit instead of the Doctor. LOL
My new Oncologist seems to be a very concerned and caring Doctor. To discuss my option she called me one night at 9 pm and spoke to.me for 20 mi.She discussed all the possible SE of Prolia and my benefits .PRICELESS!
Mena
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Mena, sounds like you found yourself a keeper! That's wonderful. I like my MO. He answers all my questions honestly. I start my list for my next visit, almost as soon as the current one is done. Then I don't forget all the things I want to ask. I do that for all my doctors. Now that I'm seeing so many doctors, I have a folder for medical appts on my computer and name the files by doctor name and appointment date. I also try to put the answers in after the appointment. So I do keep all my lists.
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Peggy, I am impressed by your organization!
funny on discussion of bfast, mine is usually a slice of whole grain bread with a wad of strained plain yogurt (I strain my own so it is real thick) and then add a slice of apple or at times some kale. Of course I need my coffee in the morn.
On the dry skin, I find that drinking lots of water helps a lot. I tend to get headaches if I do not drink up but find it affects my skin also.
for about 3 years, my primary doc was someone who called herself "Wholestic" but for me, she was a waste of time and think she was one of those who got freaked by the idea of a cancer survivor. Fortunately, when I turned 65, medicare meant I could go back to the PCD that I had seen previously(insurance dictated the change), she had always checked my blood levels and when something like D looked lo, she had me take suppliments. She ordered Dexa scan years ago and I was able to reverse the early stage osteopenia with Fosamax.
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Glad to know that Fosamax did the trick for you, ProudtoSpin. I don't do dairy - tummy and dairy disagree. I have to be rather organized when DH is home because his care is extremely demanding. I haven't fallen off the "wagon" while he's been in the hospital and rehab care though I am moving at a much more leisurely pace. Nice to be able to use the PCP you want, isn't it?
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I am copying over a post my friend, Natsfan, just put up. Very encouraging!
"A ray of hope - I finished my 5 years of letrozole sixteen months ago. I had plus T values prior to dx, but after chemo and 2 years on letrozole I had mild osteopenia, and two years later it had gotten worse - still osteopenia, but heading towards osteoporosis. I had another DEXA scan last week. I was hoping, since I was off letrozole now, that things hadn't gotten worse, or at best, maybe had even improved just a bit. But I was astounded when I got my results this weekend and they showed that my bone density is now NORMAL!!! No more osteopenia!!! Woohoo!!!!!
My MO has me on calcium and Vit D, and I exercise an average of 6 days a week, including weight training, yoga, pilates, and running, so I think those things helped as well.This was such unexpected good news - not something that happens often with anything b/c related. I'll be 60 next year, and I'd just figured that at my age my osteopenia was permanent and the best I could do was try to stave off osteoporosis. I never dreamed it was possible to achieve normal density again!
"
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How wonderful, RuthBru! Glad your friend came out of AIs so well!!
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Peggy: I took Fosomax for 5 years for my osteopenia, at that time they made me wait an HOUR after taking it before I could eat, and of course, you can't lay back down after taking it, have to stay upright. I'm one too that's used to eating as soon as my eyes are open. It took awhile to get used to it, but I did. It helped that it was only once a week. Had no problems with the Fosomax. 5 years is the max on it though, so even though I've been off it now for a few years it's not an option for me to use with my Arimidex. Afraid my bones will be in bad shape by the time I have my next dexa scan in 2 years.
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Puffin2014 I was osteopenic before chemo (at age 49). Chemo and chemopause caused a big drop. Following year I had a very small drop. Next year (2.5 year on Anastrozole) my spine move just over the boarder into osteoporosis. Everything else still stable. I take my D, calcium (supplement and through food) and execise. I'm sure it would be a lot worse if I wasn't doing those things. My MO doesn't treat osteopenia so I had to wait till I truly had osteoporosis.
Don't give up without a fight. Do the things you need to combat the SE. If prunes didn't upset my stomach I would be eating those daily too.
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Puffin, nice to know you took Fosamax with no issues for 5 years. Didn't know there was a time limit on it. Could you take Prolia or Reclast?
Lago, my MO seemed to think my PCP would have prescribed Fosamax. Well, he MIGHT have if I had seen him. I couldn't see any reason to see him and was rather tied up with DH and his issues so why would I spend time waiting and for what? Oh well.
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Peggy: I'll see my MO in 3 months, will talk to her then about alternatives to Fosomax.
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Puffin, good! While we don't want to go off our AIs, we sure don't want our bones going to pot either. good luck! BTW, glad I didn't have to wait an hour this morning to have breakfast. That would not be good. But the half hour was doable and I did it
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Puffin, there is a five-year cap on fosamax? I had no idea! My onc did say that I'd probably be off the arimidex in five years and could stop taking the fosamax at that time. He did not mention the five-year warning, although I did hear something along that line about the once/year drug. Is this a five and done thing, or can you start up again after a few years?
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I remember reading that there was a limit on how long to stay on the Fosamax, I just stopped as I realized that I had taken it for just more than 5 years. Dang doc did not say anything about it to me but I had just learned that a work acquaintance passed after getting the rare side effect in her Jaw. Forget what it is called but she took Fosamax for less than 6 months when she develop the jaw thing and she never recovered from it
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Well, that sucks, Iris. Yikes!
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The reason why you need to take a break from these drugs is they find that those who stay on it long term have a higher risk of brittle bones. One theory is maybe you bones forget how to make bone and you are hanging on the old bone too long.
So not a done deal but you need to take a break. That break might include the others so it might not be just a switch to one of the injectable/infusion drugs.
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I had been on Fosomax for 5 years, have now been off it since Sep 2009. My onc started to say "and I want you to start taking this pill" and she started writing Fosomax on her notepad. When I said "I took Fosomax for 5 years and have been off it for a few years, does that make a difference?" And she crossed Fosomax off and said well, that's not an option then, we'll get another dexascan in 2 years and see how you're doing.
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Well, sure sounds like you won't be taking Fosamax again, doesn't it, Puffin. Dang.
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Oh. Don't want that, now do we? Well, it seems I'll be on gastric reflux drugs (proton pump inhibitor) forever, and they do the same bone thinning thing as an aromatase inhibitor. Guess I'll have to commit to the walking and stomping stuff with a little more oomph. Not feeling it.0 -
My PCP took me off the bone building drug (can't remember which one) that I had taken for years. I was getting dexa scans every 2 years and showing improvement for several years (went from osteoporosis back up to osteopenia). When the last dexa scan showed no further improvement, PCP told me to stop taking it and come back in 2 years for another dexa scan. I was due for a scan, along with my last mammo but never had the scan due to all the BC commotion. Last month, after reading about the anti cancer drugs we will all be on, I had my onco send me for the long overdue dexa scan and I was still at the osteopenia level. I've been taking slow release Citracal twice daily, along with magnesium all that time and was exercising daily until BC diagnosis in early April and have been lazy ever since.0 -
For those of you with thinning hair; when I was at the salon this afternoon, there was an advertisement for new cerafill thinning hair solutions,"dermatologist endorsed instant hair thickening-hair regrowth over time". It is a Redken product. I have no idea if it is any good at all, but thought I would pass it along if you are interested in checking it out.
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Ruth the active ingredient for growth is Minoxidil. My hair dresser has a product that is similar. The gals at his salon say it's better than straight Minoxidil. I haven't tried it because of price.
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It looks like their shampoo & conditioner is supposed to make your hair LOOK thicker & their Minoxidil is a standalone product. It doesn't quote any prices (of course!).
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I will share my hair thinning/Minoxidil experience so that it might help others. After chemo, when my hair started coming in, I started using Minoxidil. Although my hair grew slowly on herceptin, it did come in and my family even said it looked thicker than before (it has always been on the thin side). So after using Minoxidil for abut 8 months, I figured I didn't need it anymore since my hair had come in so well. Bad decision! I was still on Arimidex at the time and my hair began coming out very quickly, and soon I was very disheartened by trying to arrange my thin hair every morning to cover the areas where you could see my scalp. So in June of this year I once again began using Minoxidil and now I can see about an inch or so of "undergrowth" of new hair coming in. So lesson learned, don't stop using it if you get regrowth from it!
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My understanding is that once you start using things like Minoxidil, you can't stop. Sounds like that was true for you.
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that's what my derma said. You can't stop
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Martha how is it going with the new drug?
Mena
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I've been using men's Rogaine for about 15 years about when menopause and my divorce hit. My hair was falling out like crazy and it was always fine and thin to start with. The only time I've stopped using Rogaine is during chemo and I figured what the heck. As soon as chemo was finished, I started using it again. My face stays a little more fuzzy than I would like, but I would rather have to pluck around on my face than have my scalp shine in the sunlight.0 -
Update to my Fosamax issues. As you recall I took my first dose of 70 mg Fosamax this past Saturday morning. I was careful to stay sitting upright and not to eat/drink for a full 2 hours to avoid the common heartburn SE. Experienced no initial heartburn but as the day progressed my back became very sore, painful at the site of my lower lumbar disc surgery this past January. Pain was intense that night and continued into Sunday. On Sunday I began using my electronic pulse massaging unit as well as applying heat & ice to my lower back. Slowly pain began to lesson and by Monday it was gone. I might be crazy but I believe this med localized on my lower spine as that is my worst bone density area. I did have some very minor heartburn on random occasions over the last few days, but it has been minor and if I didn't dwell on it, it did not bother me. I will proceed with the next dose this next Saturday morning and see what happens. I will, however, use my electronic pulse massaging unit during that initial 2 hour period of sitting upright and not eating period to hopefully alleviate a reoccurrence of that debilitating pain. Optimistic I will be able to handle this med. Thanks for posts and hugs to all!
Side note: My onc told me that this medication can only be used for a few years as it can lead to a worsening condition of brittle bones and fractures. He stated I would use it for 2 years and would do another dexa scan at that point. I would likely completely discontinue this medication when I complete 5 years of anastrozole which for me is in 3 years.0
