For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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hey lady, listen to ducky and know we all dif and me, did aromasin for 5years and here and kicking but after....hmm. 7 years? so try it girl, you can always stop but you do not have any idea how you will react till you try it
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I know when I first went on Arimidex I was not a happy camper, and then the vaginal atrophy WAS THE WORST. Estring has really helped me with that. So while I was home recovering from reconstruction, I was on a Tylenol or Excedrin regiment, can't remember which, and during that time I had a follow up with my Onc and she asked if SEs were getting any better and I was like "YES, wow, I don't have joint pains". Then I was off the regiment and the joint pains came back BUT, I would not want to take TY or EX like I was taking for the recovery all the time - I can imagine what that would do to organs!
So, before I go to bed I do take two TY or EX, whatever is in the house and when I wake up in the morning I try to do some ankle and knee stretching and moving around before I actually get up.
Lovely AIs!!!!! But, I am too afraid to NOT take them right now.
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Pegg,
just came from the mos, and I'm going to be starting my arimidex for 1/2 pill the first week (baby steps) then up to regular 1 pill a day. My hormone numbers that effect bc are very very low she said so she is not anticipating any serious side effects for me and she said that if I have them, they'll stop me and that's that. They figure I should be safe ER wise as my main thing was the very "florid" as they called it HER2+. Evidently the worse the HER2+ the better herceptin works. She said ten yrs ago it would be fatal for me even at the early stage they caught it at as there was not herceptin and HER2+ doesn't really respond to chemo. So, since I've done 12 rounds of Taxol with herceptin and will continue to be on herceptin alone until the end of January they consider me pretty well protected. She said that if I have toi stop they don't believe it will effect my survival numbers. I've been in chemopause over 25 years and they don't expect much to change for me. Here's hoping, and I do feel relieved as they said I'm safe to stop if I have to. After all my body's been through in the last 25 years I'm figuring I can do this. I'm thin and in good shape, with only moderate osteopenia so we shall see. She also said 4000 mg of vit D3 every day go a long way to avoiding the joint pain and stiffness that arimidex can cause. So I'm doubling the amount I take now. Generally feeling very reassured, she says I'll know right away, usually within the first month if there's a problem with how I'm handling it.
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I had horrible SE's from Arimidex within the first 3 days.......did you read that........3 days............
Letrozole was 3 months...............
My estrogen level has been low for years...........I still had severe joint and muscle pain.....low estrogen did not help me at all..............so waht does this prove............
Everyone is different..........so it is all up to the individual........some are lucky...........many not so lucky.........
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thank you ladies!!!! I will be taking my pills, that was never a question. I'm just scared.
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Audry.........so was I............so scared I stayed on it for 3 1/2 years...........even with all the problems......I gave myself a better chance at life...............
Then I decided to put i in God's...............
I wanted QOL........
My mistake was trying Arimidex........should have stopped when I quit Letrozole..........
My mistake.......who knows, maybe one morning I will wake up with no pain.....and the Arimidex SE's will go away...........I have 15 of the 30 Arimidex to toss in the trash.......just sorry I tried it.....
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Suladog, I'm taking 2000 D3 daily. Apparently the docs think that's a good number for me. I also get quite a bit of unprotected sunshine during the warm months. I do know that my NP wants me to get my Vit D checked next time I'm at the PCPs. So maybe my recommended dosage will be changed if my numbers are low. Normally I'm around 30-32. Good idea to start with a half pill. I suspect you won't have any problems. And you certainly have been through a lot.
HUGS!!!!
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Pegg,
Well, you will hear from me as to how this works out, having done chemo twice in my life with all sorts of side effects and then all the SEs that came from being put into chemopause so unexpectedly I am fairly hardass with a pretty high pain threshold. Hoping I can handle this at least I have an out if I can't.
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Chemo twice is more than enough to show how strong you are, Suladog! As I said, I'm sure you'll do well. Just keep positive (and I know you know how to do that!)!!
HUGS!!!
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Ouch! Ow! Time for a 2-3 DAY vacy. And naproxen. Ugh.
On the Vit D3. I do 5000 daily. My level was 44, barely above normal at Quest lab. I don't use sunscreen, don't try to avoid, or stay in the sun. It's too stink in' hot here for that. I have mild osteopenia.
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Spookie, my notes say that the criteria used by my lab 2 years ago that 20 was bottom acceptable for my VitD. I think I will up my usage to at least 3000. It is too hot in FL but sure as hell not here
HUGS!!!
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IDK Peg. Quest says 40 is the low end of normal. Guess they can vary too, like docs opinions. When I started D3 years ago, I was at 17. And felt like chit. My pain doc was the one who put me on the 5000 daily, now with the AI I just keep on. It's the 3 that's important.
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dlthnm, I think your comments were meant for someone else. I am 47 and the same weight (actually a couple pounds lighter than I was when I was 40). I know it becomes more difficult, but I do not believe you have to gain five pounds a year after 40! Even post-menopause and on AI I have maintained my weight of 123, give or take. I was post menopause at dx. Went early... Anastrozole is my first attempt at anti hormonal.
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Spookie, I made notes from my lab reports and put them in a spreadsheet. I had my values and also put the acceptable range in. So whatever variety of test they did, I was in range. Maybe at the lower end. We'll see what this test comes up with
Wouldn't want things to be measured the same way. I notice that my ER/PR values are not given in percentages as some have posted here but as number like 10.1 (from my Oncotype test). Oh well!HUGS!
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Peggy, sula and spookie, I've been doing about 3,000 D-3. Everything I'm reading lately suggests more is necessary for breast cancer recovery and prevention of recurrence. I'm going to up mine.
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Sounds reasonable, Meljo. I'll do it.
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Meljo -
You are right! I meant that post for Clairenaz. I edited the post to address it to her. My apologies. In one of her posts to you, your name was highlighted and I had glanced at that when responding.
I do not believe everyone will gain 5 pounds a year after 40 (mentioned that as it's often hypothesized), but I do believe that as we age, as a general rule (specifics vary always), our metabolisms slow down. And this does occur in women in their 40's and 50's.
I am a very fit active 51 year old. But I did gain during Taxol despite averaging 30-40 miles per week running. My MO attributed some of this to my body being thrown into chemopause with AC - but once I completed my weekly Taxols the scale started moving the other way.
An injury and back problems sidelined me somewhat this Winter which contributed to a Winter gain. But after returning to walking and my running, I am almost back to my pre-surgery/pre-chemo and post chemo weight. (At a size 6-8 on my way to a 4-6).
Sorry about confusing you with Clairenaz.
Correlation is not causation and coincidences do occur when many things are occurring at once. I was trying to suggest other reasons for the weight gain besides or perhaps in combination withthe AI.
Diana
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I was pre-meno (I think I mentioned this earlier but there's been a lot of activity on this thread and hard to keep track of all postings) before chemo. I was put quickly into chemo-pause, like overnight, I guess. I started on tamoxifen (14 or so months) when I finished Taxol; AC and worry made me drop weight quickly. I knew that chemo would probably send me into meno because of my age, so I asked and got my FSH checked--twice over a period of about a year. It proved I was menopausal, and for ILCers like me (ILC is a different animal than IDC, remember) it's important we switch to an AI as soon as possible, which was why I was tracking my FSH so closely. Here I am, on an AI, hips aching, wrist catching and popping, knees and ankles stiff in the mornings, trigger thumb, weight gaining, and emotional changes.
I don't know if weight gain after menopause is inevitable. Something about that idea of inevitability at all makes me want to reject that claim. Most of my women friends became menopausal long before me, and I didn't see 5 lbs a year of weight gain for them, so I don't know about that. My mom kind of sailed through menopause with some hot flashes and nothing else, certainly she didn't gain weight like I am. She doesn't even exercise. I'm frustrated by my efforts to work out (including weight-training) like a near-triathlete, eat organic, balanced meals focusing on clean protein (fish and eggs), little to no dairy besides yogurt, tons of veggies and some fruit, avoid alcohol and sugar, and see the scale continue to tip in the wrong direction.
I have my thyroid checked regularly by my GP and I'm fine.
If anyone has any helpful information about how to turn this around while on arimidex, I'm game. Otherwise, please be careful with the postings that imply there isn't anything we can do and that we are destined to eventually be fat because we are menopausal. It's depressing enough to worry about everything else we worry about as survivors. I'm glad that some of you are able to do so well on arimidex / AIs and don't gain weight or any of that--but it's hard to hear for us that are really struggling on the drug and might be looking at ending it and suffer the consequences instead, because it's so awful for us.
Namaste,
Claire
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Claire..............yes for us who struggle its very hard.......and I sometimes believe there are those who think we can't handle pain.......and that we just look for problems
I did not gain any weight while on Letrozole.....but then I was not Twiggy either, and all I kept thinking was "great not only do I have cancer, but now I'm going to be a "blimp" with cancer.........it did not happen, but then again even when I try hard, eat carefully, and avoid many things..........I do not lose weight......oh a lb or two, but that goes up and then down, and then back up........
I have also had people tell me to not assume I was going to get SE's........people told me "stop reading the package insert, you do and you think you have all the SEs.................others on the Letrozole have said to me "I have had no problem what so ever"..............my feeli'ng is............well don't tell me, get on our hands and knees and "tell God", how grateful you are that he spared you the horrible wrath of AI's.................
That was on Letrozole..........which I struggled with for 3 1/2 years
I think I got a little more respect when I said "No, I will take a vacation from Letrozole, and might try Arimidex after a month......it turned into 3 months vacation and I felt so much better off Lettrzole.....................but to prove to myself and everyone else I truly wanted this pill to work for me, I tried Arimidex......................3 weeks of pure hell....did you hear what I said "just 3 weeks on Arimidex.......stopped it..............1 month of pure hell after going off it and I still..can't get rid of the SEs even being off it................
IT IS WHAT IT IS..............I thought to myself the other night.......people are taking this "DEVIL PILL", and have no SE's.............I stopped it, and still have them...............oh well.......shit happens.........
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Clairinaz,
There are women on the board who have reported weight gain on one AI, the loss on the next or vice versa. I believe lago gained 10 pounds on arimidex, then promptly lost 10 on aromasin. I've been on both and not lost or gained other that the usual winter gain and summer loss. (That's an SE of living further north, but not far enough north for continuous outdoor winter sports.)
I'd suggest discussing a change to aromasin to see if that helps. It may also help with the other SEs. Though I don't think my SEs are much different between the two. I've developed trigger thumb and more arthritis in hands and feet, but that may have occurred anyway on arimidex after all these years. Lack of estrogen is lack of estrogen regardless of which drug you take.
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Claire,
Thank you for your response. I did not know your entire history which was why I was asking questions. I was hoping to give you possible alternate reasons to look into for the weight gain. And mentioned that it could also be a combination of something and the AI.
As I explained in a post to Meljo, the 5+ pounds a year is something that has been hypothesized. Not by me. But I do believe that it has been proven that generally speaking metabolism slows as we age. Therefore if a person continues on the same path with diet and exercise but has a slower metabolism, weight gain will follow. Knowing that is true for the general population (there are always exceptions) doesn't mean someone HAS to gain weight or is destined to be overweight.
Please please understand that I did not intend for you or anyone to infer from my post that "there isn't anything that we can do and we are destined to be fat because we are menopausal".
It was because you wrote about your diet and exercise (which are more than admirable) that I thought there could be another reason causing or contributing to the scale creep. I did not suggest having levels checked, problem with thyroid, or thrown or going into menopause, etc. to condescend. My PCP (internist) ordered labs to check my hormone levels yet again and thyroid just a couple of weeks ago. My MO would have ordered the hormone tests at my appointment in July but my PCP wanted us to know now.
I do recall now also as someone else mentioned that a poster wrote about immediate weight gain on one AI and immediate loss on another.
Peace back to you.
Diana
Edited for typos
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claireinaz What doxie said is correct. Granted I have gained a few pounds back but still a good weight for me. I too was permimeno and when into chemo-pause. Last period was 2 weeks before chemo. I started with Anastrozole. My MO knew my family history and tested my estradial leves for 5 months though. Switched to Exemestane after 3 years last year. Doing better on it.
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dltnhm, no worries! I just didn't want you to think I was rude not answering your questions as they didn't pertain to me. I agree that weight management becomes more difficult as we age. I was a size 4 forever doing little more than walking. When I turned 40 I had to step it up and start running, biking, lifting, etc. Walking was no longer enough, so I get your point. I'm just not going down without a fight
Claireinaz, those of us doing well on the AI meds are just trying to share our experience so that others know it is possible and ease the fears of new women starting on the drugs. I was terrified to start and was greatly encouraged to find this board and hear from some people doing ok on it. We are all just here to support each other. I'm sorry you are suffering and I do think quality of life is of utmost importance. If at any point I start having unbearable SE's, I will switch drugs or stop them completely. If I'm going to live, I want to LIVE!
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Claire, its all so confusing what we should be doing to prevent recurrence AND weigh loss or maintenance. It has always been hard for me to lose weight when I exercise because my appetite goes up, and yet we are told exercise prevents recurrence. I will note that I recurred on tamoxifen despite losing 13 lbs. I brought my BMI down from near 25 to 23.4 and that didn't seem to matter. I think tamoxifen didn't work for me and that's all there was to it. I researched and researched after that and what I found, and my doctor confirmed, is stay within your BMI if you can, don't gain weight, eat less carbs, exercise. These are the only things they have found to benefit ER+ ladies besides the meds. I asked her about losing more weight and she said there's no evidence it helps, at least try to stay where you are and exercise. I have done well maintaining on paleo, lots of walking and occasional sprinting or running (very occasional). I also would hope to lose a few more pounds because my gut says it must be better to have less body fat, but it hasn't happened in a year so I'm trying to be content with what I'm doing. I do feel the lower carb eating has improved my appetite control, and when I exercise more gently I lose a little, for example slower walking works better for me than fast walking. The other thing I would mention is a friend that was on weight watchers noted that she lost more weight when she ate at the top of her "points" allowance. As we all know, weight is a tough nut to crack. Please don't take any of this as condescending advice, just offering up what has sort of worked for me.
Vitamin D and breast cancer recurrence. This doctor recommends 4000 IUs per day to get to 50. My level was 31 last year after taking 2000 IUs for quite a while, so I increased mine to 4000. http://www.medicalnewstoday.com/articles/273728.php
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Meljo,
Since you are one of the few people I've found on these boards that are also HER2+, I was wondering how much emphasis your MO places on the HER2 part and how much on the ER+ part.
I had a very "florid" HER2+ 7mm tumor (quite small) no nodes MX but I did taxol/ herceptin (still on the herceptin till Jan) everybody seems more concerned with the HER2+ part than the ER+ part and I was wondering if that's been so with your case. I had triple negative back in 1990, so that I understood. It's a bit confusing to have this situation, and I do ask many questions and have always been a strong advocate for myself, but this has me puzzled. Like you I run and exercise went from underweight BMI for many years to normal BMI.
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Maureen (Maureen1), Peggy (PontiacPeggy),Nancy(NancyHG), Jo(GypsyJo) and I had a wonderful time meeting up today. The venue, Sand Hill Crane Vineyards (Jackson, Michigan) was lovely and they have a great selection of wines. We talked non-stop and just enjoyed being together. Hoping that more of you will be able to join us next time. Mary and Carollynn, we missed you!!! You don't have to be nearby to join us - Jo's from Oregon! Michigan Get Togethers
HUGS!
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suladog, I'm so sorry. I'm actually HER2 negative. My bio was wrong. I'm glad you caught that. I actually thought AIs were only used for hormone positive and HER2- people. Now I'm curious. Will have to research this.
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two, thanks for the additional info on D3. Definitely going to up mine.
Peggy, awesome pic of you lovely ladies!
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Thanks, Meljo. We have a great time!
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Awesome !! Love it when there's meet ups!!
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