Life on aromasin
Comments
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I've always taken mine after lunch, since I don't eat breakfast. I can't say I notice a hair loss, but I have very thick hair and haven't been on it that long. For anyone interested, I bought a bottle of children's Claritin. It helps SOME with the joint pain. It's cherry flavored.
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Proudtospin---You should be able to find the ginger just about anywhere. My doc said the brand wasn't that important although he said he'd prefer it if I took a brand that was "better known" like Nature Made or something.
I bumped into a lady at the gym today who has been on arthritis meds for a few years. I had told her a couple of months ago about turmeric and ginger and she said she was going to try them. Well, she said they were working! She's quit her Rx med (with her doc's blessing) and is trying just the turmeric/ginger route for now. Says she's hopeful she can continue this. I'm sure it won't work for everyone, but I do feel it's worth a try! And as with anything, give it a month or so to see if it works.
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gonna need to do some more searching on the ginger powder capsules, Walgreens did not have it so....
hmmm, got a Rite aid close so maybe
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nwood, I am having severe hair thinning on Aromasin, despite taking biotin daily, Viviscal tablets and using Nioxin shampoo. I'm going to try Rogaine, I dread shampooing my hair. It didn't start immediately, maybe about 6-8 months after I switched to Aromasin from Arimidex.
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I switched from Letrozole (terrible pain) to Aromasin. It is much better. I do get trigger fingers sometimes but when I cut out sugar and grains I am much better. Swimming has also really helped. I do lose some hair in the shower but I have thick hair so right now it is not really impacting me. I take Celebrex and neurontin daily which helps with pain.
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nwood450 my hair started to recede before chemo so I started to use Minoxidil. Didn't use it on chemo. My hair started to recede on Anastrozole so I started it again. I did notice a bit more shedding on Exemestane but it stopped. I still have a ton of hair. I also noticed my eyelashes are much better on Exemestane. Go figure.
I'm currently using Kirkland brand (COSTCO) Men's 5% once a day, liquid form. I buy it online because they don't have it in the store. Even with shipping it's still cheaper than CVS or Walgreens generic. I used to use Walgreens.
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proudtospin---I just assumed ginger was pretty readily available. I actually buy mine either through Amazon or the Vitamin Shoppe so I've never looked for it in stores. I would imagine GNC would have it as well.
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lala, I found the ginger capsules at Rite Aid so fixed up for now. Now hoping they work
thanks for the help
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Proudtospin--Please keep us updated on how you fare on the turmeric and ginger. I'd like to know that it's not all in my head!
I do also very much love my SloMag. It's supposed benefits include more protection from joint pain as well as a reduction in hot flashes (not sure if that's the case with me but I do only have about 4 a day so I'd say that's pretty good!) and most importantly, it keeps me very regular! I do love being regular!
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lala, doing the turmeric, ginger and the slo mag
I have a messed up back (as in the last 6 months~) and did go to an ortho guy today to discuss.....procedure, creeps me out but my back is really nasty, got numbness and issues down my leg that they loveingly refee to as degenerative disk disease, AKA you got an old back!
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i have had degenerative disc disease for eleven years, my physical therapist has kept me stable for last five years, by strengthening the little muscles, this is after three prolapsed discs, and it really works, better than surgery........maybe worth you looking in to? I even do Zumba.......
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can I borrow your PT person? I had 2 different ones that kept me stable and worked out kinks when they occurred for years. dang but both moved on to dif things. I have been doing PT with a dif person but not working and actually caused my current problem. But you know, I think I will talk to one again and see. Have been doing rehab therapy and helps but not much
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I had my 6 month appt. with my MO today and she has me on a break from Aromasin. She saw how bad it has gotten for me and told me to stop taking it for at least 3 months! Music to my ears...She gave me a month off about 14 months ago and it was heaven. This time, she is giving me 3 whole months! She said the break is necessary to clear it out and find out what is really going on with my joints. I almost kissed her! LOL She said if I recur within those 3 months, that means it was never working in the first place which makes sense. Going to finish off the pills I have and take a break!
I am also taking the turmeric/ginger pills but not the slo-mag. May add that later. We shall see...
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Dear all,
After 18 months on arimidex and before that 2 years on tamoxifen yesterday my doc swapped my meds to exemestane/aromisin. I've been gaining weight (8 lbs in 2 months) after careful eating and training like a triathalonist. I also suffered major mood swings/depression and joint pain throughout my body. So I'm switching. I'm also on Wellbutrin for the depression after taking effexor for 3 years for hot flashes and wonder if the combination of an AI and anti-depressant has caused weight gain? Anyway, I'm so sick of meds, taking them, switching them, talking about them.
Any help or encouragement would be appreciated. If I gain any more weight, I will seriously be depressed. Isn't weight gain bad for a post-dx of BC? Why aren't doctors listening to us about all this?
Claire in AZ
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Hi Claire, I share many of your concerns. It seems like the more active I am the less stiff and sore I feel. And, as of this week, I have given up on turmeric, ginger, fish oil, and claritin. I have been taking these regularly for weeks and they failed made the slightest dent in my pain. I just started taking glucosamine/chondroitin. I know that there's little empirical evidence for this working but my dog has been taking it for years and it seems to have helped him a lot!
I have to say (and this could be a placebo effect but I'll take it) my shoulders are feeling a ton better and my knuckles are less swollen. I still have a triggery ring finger on one hand but I am feeling A LOT better overall. So. Try everything and see what works for you. And hang in there. I feel completely over-treated these days and will be having a long conversation with my MO at the end of the month. I cannot spend a decade like this. So we need to consider some options...0 -
Avoiding gluten made the biggest difference to my pain levels......but I have decided to take a 2 month break from this drug now........it has a 50% prevention of recurrence apparently but if my recurrence risk is 30% over 10 years then in real terms that is a 15% benefit............does not sound anywhere near as much then does it? I feel so lousy on this drug, and now am having lung problems which i had after only a few months on letrozole, I have served 1 year and 9 months on Aromasin, plus a year on letrozole so nearly 3 years in total and the only time i felt ok was in the second half of my two month break off letrozole before starting Aromasin..............the gynae tries to tell me its normal menopause to be so dry, no I don´t think so not so that just touching me makes me bleed......as she did...........its not normal to be so exhausted, beyond normal fatigue, its not normal to stagger around for an hour most morning as you are so stifff you cannot walk normally, its not normal to have all these things from a natural menopause.........with everything worsening, being unable to breathe normally when walking at average speed was the final sign..................anyway I am going to take a break for two months and see how I feel..........then I will make a decision as to whether to go back on it again. If the REAL benefit is only 15% and I am able to go back to exercise again (had to stop my beloved dance classes a few months ago as was too sore and exhausted afterwards which has affected me emotionally too) and feel like a human being instead of someone almost waiting to die as I feel so ancient then I may decided that risk is one worth taking.............I know people say they recur soon after stopping it but how do we know if they would have recurred without stopping? We don´t................
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Clairenaz,
I take aromasin and wellbrutrin too. I gained weight but I thought that it had to do with being taken off estrogen replacement and plunged into estrogen depletion. Wellbrutrin is known to cause weight loss.
As for hot flashes and sweating. What I experienced was of nuclear proportion. MO Rx'd 40 mg of Megace. Stopped the heat in 7 days.
I am now on the road to losing the 12 lbs I gained in a year. I seem to be losing it at the same rate I gained it, 1 lb a week. More activity, less food does not change the rate. Its one pound per week.
BTW: My biggest complaint on Aromasin is fatigue.
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I switched from Arimidex to Aromasin a little more than a year ago because of the awful joint stiffness with Arimidex. I was doing pretty well with Aromasin until a few months ago, when the bone pain, joint stiffness and curled fingers started up again. The timing was odd, because the new pain started soon after I had to switch pharmacies for my generic Aromasin, exemestane. I called a bunch of pharmacies, and my old one (when I didn't have pain) used exemestane from Roxane labs; my new pharmacy (the one since I've had pain) -- my Medicare mail-order pharmacy -- used exemestane from Alvogen labs. I found Publix used Alvogen and CVS used Roxane. I saw my MO on Monday and asked her whether there could be a difference in the drugs from two manufacturers and whether that might contribute to my new aches and pains. She said she had never heard of it with exemestane but it was true of certain other generic drugs. At any rate, she thought it was worth a try, so I've switched back to the Roxane generic. We'll see what happens. She also told me to double my vitamin D, up to 4000 units a day.
She said that in her experience women who have problems with Arimidex also have problems with Femara (letrozole?) which is chemically much closer to Arimidex than Aromasin.
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I had a problem with drugs by different manufacturers; sometimes they use different fillers. I hope you solved your problem.
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WaveWhisperer,
Until recently there was only one supplier of generic exemestane and that was Roxanne. Alvogen is new to the US market with drug sales mostly in Asia and Eastern Europe. In my research I think it was licensed a year ago or two for sales of exemestane in the US.
I suspect more of us will find this manufacturer in our pill bottles unless we are proactive at preventing it.
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Hi ladies, I haven't started this new drug yet; doc told me to take a 2 week break from arimidex and then move to the extremane (spelled wrong I know) so of course that sounds great to me! I also stopped the Wellbutrin to see how I feel off all drugs for two weeks. So far perhaps a bit better? I may just instead take 5-HTP which relieves anxiety and depression but is more gentle on our systems than rx drugs. My colleague swears by it and it sounds like I'll give it a go.
I've stepped up my activity level (which makes me laugh since it was already breakneck high) and cut way back on cals, actually entering every bit of food I eat every day in myfitnesspal app on my phone. I've been at this new practice a week. I should weigh tomorrow but I'm fearful
I want some kind of a baseline so that when I do start the drug, I can have a comparison to take to my MO for a report. (with drug/w/o drug). I'm keeping a diary of sorts as well.
Love to all of you for your determination in taking these effing drugs to try to save our lives in spite of the incredibly difficult side effects. Could men do this for long?
Claire
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Doxie, you're absolutely correct. Alvogen has been an approved manufacturer of exemestane for less than 1 year -- started July 28, 2014. It has manufacturing plants in the US, yes, but also Romania and South Korea. If I started it last February, it meant it had been on the market for just about 6 months. I'm in the first week of switching back to a Roxane pill, but mentally I already feel better about it. Roxane has been supplying exemestane for 4 years, so there are lots of people with experience with it.
I know there's a lot of discussion on the Arimidex boards about different manufacturers of that drug, and many woman see a difference and specifically request and shop around for the pill made in Israel by Teva. Those of us on exemestane could also be noticing differences.
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mine is from Roxane.
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Mine is Greenstone.
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Now that I'm doing mail order mine is from Alvogen, Inc. I have noticed some increased SE with it compared to CVS. But CVS will cost me $60 a month. Mail order costs $20 for 3 months. I have spoken with them but mail order says they have no control. I did complain about this.
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Mine is Greenstone.
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Mine is Greenstone, I tried a generic from a different manufacturer and had worse side effects. I heard the Greenstone is the same manufacturer that makes the brand name but also makes a generic. I can definitely tell a difference since I switched a couple of years ago to Greenstone. Of course having to use mail order through husbands insurance had to get permission to use this so it must cost more than other generics. But got their approval due to the side effects and it has been better. Of course still have the fatigue, mood issues, joint pain but still better.
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Mine is from Alvogen. I don't have many SEs from it, thankfully.
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I posted this on one of the Arimidex threads also.
I have a wild card to throw at those of you with arthalgia and arthritis like symptoms.
I recently removed a deer tick and had to have a strong dose of antibiotics to ward off lyme disease - had a growing rash indicative of the bacterial infection. I did a bit of research and discovered surprisingly that more people will be infected with lyme disease in a given year than get breast cancer.
So why am I telling you this? Because the SEs of untreated or late treated lyme disease are very similar to many of the arthalgia and arthritic symptoms we have on AIs. If you are a hiker or have a dog who runs through natural growth, there is a possibility that untreated lyme disease is causing some of your problems. I went hiking in an area obviously infested with ticks, but because of where they attached on my belly, I think I got the ticks from the dog that sat on my lap on the way home. A friend with me found another on her back. She was carrying her dog.
Deer ticks are so tiny that unless they are in plan view accentuated by a rash, they are easily missed and drop off after feeding. An infected tick can infect you after only 24 hrs.
So hikers, dog owners and other outdoor pet owners, consider getting tested for lyme disease if you are in infested areas and have some of the SEs we are in most cases rightly blaming on AIs.
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Interesting, Doxie, thanks! We don't have Lyme disease ticks in No. Az, though, so I can rule that out..
Claire in AZ
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