Arimidex - Coping with the SE's
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The swollen fingers, yes I have that and I have only been on Arimidex for 8 months and I had to quit wearing my rings. I just recently got them re-sized so I could wear them again .
Nancy
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Gma, Let us know what she says. I just quit flaxseed oil, it contains some lignans, like sesame oil... I was taking it before BC for dry eye. My MO said to stop, as the studies are not conclusive, and controversial.0
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Pat - today is a bad day. I hurt so much in my lower back, my butt, my hips and now my knees feel like I have strained them. I had to take 2 percocet last night to go to sleep. Today I refuse to take any pain meds and I am feeling it. I have to keep reminding myself that this is part of my life now for the next 3 years and then it will be over.
On a good note - I gained more weight on Tamoxifen yet when I switched to Arimidex I was finally after 2 years able to lose 20 lbs in 3.5 months. I still need to lose another 7 lbs to get to the weight I was when diagnosed.
I saw my onco this week and he noticed the weight loss - he went back in his records and said "you weigh the same as you did when you started chemo" What I didn't realize is the month from diagnoses to chemo I had gained 7 lbs. So hey.... there is something positive in my life!
Sunflowers/Nancy - My rings didn't fit until I lost the weight I had gained. I also retain water as I can gain 3 lbs overnight. That is what happened last night. I went to bed weighing 129 lbs and got up this morning and was at 132 lbs. Simply NOT FAIR!
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HI All.
I too have noticed that my rings don't fit most days. That said, when I cut out alchohol and realy watch what I eat (less dairy and wheat, my rings fit after a few days and I do feel better. For those of you who rings don't fit, please get your blood pressure checked. I find that my went up on Arimidex but I can keep it more under control if I really watch what I eat. Even then, I still find that I need blood pressure meds on stressful, high energy days to keep it in the desired range. I did buy a B/P machine during chemo because my b/p went too low and I felt really dizzy. (turned out I needed to add salt to my diet). Now I am glad I have it just to help me manage this possible side effect of arimidex.
Can folks clarify for me what oils are considered "safe" for er+? I know that flaxseed is considered controversial, along with soy, but I had not heard about sesame and would like to understand more. If you a site that you reference, please let me know about it.
Best to all! Beau
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The only ones I know that are controversal are flax and soy. Anyone else?
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I've only heard about soy and flax. So now we have another, sesame, to check out and probably will find that to be controversial like the others. Are we having fun yet????
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Yep, it's a maybe: here's a website: http://foodforbreastcancer.com/foods/sesame-seeds-and-sesame-oil (cut and paste if the link doesn't work for you)
Conclusions (from that page):
Those taking tamoxifen should avoid sesame seeds, sesame seed oil, and related foods such as tahini and halvah. Otherwise, it appears that the impact of sesame seeds and sesame seed oil on breast cancer risk depends in part on concurrent overall diet. Based on the available evidence, adding sesame seeds or sesame seed oil to an otherwise unhealthy diet low in fruits and vegetables might increase the risk of breast cancer. Similarly, substituting sesame oil for other fats in the typical American diet by using it to fry with or to make pasta sauces is unlikely to have much positive impact on risk. On the other hand, incorporating sesame oil in a diet rich in vegetables could potentially reduce breast cancer risk by increasing the bioavailability of carotenoids.0 -
wow, it's so intereresting to see others with similar side effects.....YESSSS to the knees on Aromasin (for a year now), weight GAIN since tamoxifen (2007), hair loss since Aromasin, I don't even wide comb my curly hair anymore, just scunch and make sure I use lots of conditioner and leave-in conditioner. I also have lateral epicondylitis (fancy for 'tennis elbow') out of the blue, seeing another addition to the doctor team, an orthopedic doc for a cortisone injection (yep, had it before, only cortisone shots help, then another 6 years can go by!). We endure alot, and yep, I'll take the drug before I'll refuse it, but at our ages (some of us 'young' (52), wonder what the future holds for the joint/bone pain (yep, bone density issues, but not osteopenia yet, bone density again in few weeks).
We get thru what we can, day-by-day. Good luck to everyone. It won't last forever~~~juli
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Sorry it is a bad day Jancie. I know one day can be totally different from the other. I can't figure out why one day it will be my knee, and hips....and on any other given day the knees will be ok, but my elbows, feet and neck will be screaming at me. I just hope that when I get to stop taking Arimidex, the effects won't be lasting............however I have to wonder if it will remain.
Once day at a time my friend.....
Pat
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Quick question about generic Arimidex...
Been taking it since end of February...Picked up my refill and was split into 2....I was told it was from 2 different manufacturers...Do I need to worry about that? I know that on the ones I have been taking since February had the number 7 on the pills...this one is number 10 (don't have them with me as I type, but I believe it's A7 and now these are A10...should I be questioning this? I mean, why different numbers if the same thing? Has anyone else noticed that theirs have changed? Am I being silly?
Thanks!
Tori
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Ok Ladies - I have been off the Arimidex for one week and the headache is gone... Talk to the Onc tomorrow (or his nurse :P) I know they are going to want to verify the headache comes back - why not just start me off slower this time so I can survive it instead???
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Nothing to worry about tori. Every pill has a code and every company that makes the generic forum will have a different code for the same pill. That way if any are ever recalled, they can track it down to the company that made it. If you are really worried about it, you can do a pill identification on it. I don't remember the sight name but I am sure if you googled it you will find it.
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Good luck Gma, let us know what they say.
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I had a horrible headche last night. I think it was the arimidex myself. The only thing I did different was not take my motrin last night. I hope that is all it is for you. Wishing you the best GMA.
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OK responding to earlier topics ...about eating since chemo I had not wanted to eat much during chemo and still keep the same weight. After my taste buds came back I ate every thing and anything gained (every thing tasted so good). about 10 more pounds. not good since I am already over weight . Came to my senses and started the Live Strong diet and in 5 weeks I have lost 10 lbs. Yea me! I have noticed my rings still don't fit every day due to swollen fingers, reducing my sodium sure helps that. and my knees dont hurt as much as they did. I am on my 8th month on Arimedex . SE seem to be getting better. I am up to 3 or 4 miles on my daily walks ..
Either I'm not letting the hot flashes ruin my day or they are getting better too. They seem to be going away faster and more time between them.
And about eyes sight .. I was complaining about blurry vision, went to have my eyes checked my prescription is different now.. My ONC had told me not to have my vision checked for a while after chemo, because chemo can effect eyes.. but my eyesight has gotten better as far as my near sighted goes but worse in my up close vision . I need bi-focals now.
Just letting you all just starting that it does get better! Just keep moving. I wish I had a cure for you all having headaches ... headaches just suck!
Have a great week ladies!
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Torigirl when I first started Anastrozole I found out the pills were from a manufacturer in India. Then Walgreens switch to a manufacturer in Israel. I'm actually more comfortable with them coming from Israel (Tivo). The Tivo ones say 10A.
Eyesight. Mine changed on chemo. When I first went to the ophthalmologist (for another eye issue) they checked my eyes and wanted to give me bifocals because my distance sight wasn't so good. I told them I wanted to wait a month. Sure enough my distance sight is fine, no glasses but my astigmatism is now gone! I don't need prescription glasses anymore. Just 1.5+ from the drug store. Go figure.
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Hi All - I am new on this thread. I had a BL MX, no recon, no chemo, no rads on 5/5/10. I was diagnosed with lupus in 1990. Also have ostopenia & over sensitive/allergic to many drugs not to mention taking blood pressure meds by the handful to try to keep the BP out of the stratosphere. I started Aromasin in June, 2010. Onc chose it due to fewer problems with joints. It was fine but had to switch to Anastrozole (Arimidex) in 02/11 due to cost. Yes I have hot flashes but then I have had them for over a decade. Due to cardiac concerns I have not ever taken any medication for them. My life looks like I have a fan fetish as they are in every possible place I could be in my home and on my desk at work. In the early years they were awful and there were many times when I could time them every 20 minutes. Surprisingly I find them much milder over the last year but then again, it has been a decade so not sure if it is the AI's or maybe I have just outlived the worst of it. I do still run a fan directly on me all night. I have found that I have no more joint issues than I already had with the lupus. In the first few months, I had alot of muscle pain and more frequent migraines (a life long problem) but that seems to have settled out over time. I mentioned the fans, I have taken glucosamine/chondroitin for probably 15 yrs which helps the joints and walk regularly. I bought eye masks from Colorado Warming at our state fair that I keep in the freezer to use with migraines. Just don't put the elastic around your head. You could probably improvise with other cold packs. For me, bright light has always been a major trigger and so I avoid sun as much as possible (also necesary due to the lupus) and make sure sunglasses are polarized. I was already using Minoxidil for many yrs before the BC. My hair is about the same thinness as always. I now have no hair at all on my arms, legs or underarms. I was really concerned about the AI's but have been pleasantly surprised that it has gone pretty well. The Onc gave me a pretty strong pep talk about making it work and I have.
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Ruth and Kittydog: Got the call back from the MO... he says the pill won't work if I start with just half to take it full strength and if the headache comes back to stop it and call him... They are making sure it is an SE from the arimidex..This really stinks, what happens if anything I take does the same thing.. I know its probably the loss of estrogen, not the PILL itself... So do I stick it out or tell him when the headache comes back???
Kittydog - I can't take aspirin, motrin or any anti inflammatories because it has been killing my stomach.(had an ulcer from them in the past) ..that being said...if I could take them, the headache might not be as bad and tolerable.. tylenol did nothing for the constant headache for 8 days.
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gmafoley: I empathize with you, as I have suffered daily migraines since age 17. They have gotten worse with menopause (which we expected, mine were never hormonal, as most women's gets better with menopause). I hope that you can get your head pain under control, I know how that gets to you. I've adapted with it and the nausea/vomiting, we cannot prevent the pain (been there since age 17 on a pain scale of 5 on 0-10 pain scale), but we try to control it, no pain killers, just vascular constrictors (dihydroergotamine injections in thigh since 1993). My best to you. ~juli
**I don't need anyone to 'advise' me on the migraines, been there/done that, but thank you**
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GmaFoley the headache might be from one of the binders in the pill not necessarily the lack of estrogen. Even if it is from the lack of estrogen it might just mean your body needs to get used to it. Many women stop for a month the go back on and their SE subside. Don't assume the worst. Some people just need adjustment time.0
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Thanks Lago: the way my MO is doing this: after just one week off, I try it again, and if I get the headache back he is going to switch me to another med...I just don't want to get back into a drug roulette issue like in my past.. that doesn't give me any adjustment time
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Hi Grammie,
I am hoping that your headache does not return! However, for what is worth, I started with half a pill for 2 weeks. When I started the full pill,I had all kinds of issues, but chose to treat the side effects. If you can't take ibuprofen or some such drug, consider a few options:
1) it is possible that the arimidex can raise your b/p which can cause bad headaches. If that is the cause there are all kind of b/p medicines that you can consider. You might check out your b/p if your headache returns. Mine was elevated for a while (and still is on high energy stress days). I take the medication Avapro as needed. Diet can definitely help also - low sodium, etc
2) I took the pain pill ocycodone during chemo - it is just the opiate in thet percocet pill (combo of opiate and advil).I took a small dose of 1 pill a day during chemo because my liver enzymes were elevated from the TC chemo so they did not want my on any NSAID. I used it briefly when I started up Arimidex because the arthritis caused by the new meds really aggravated my herniated discs in my neck. Again, I took a small dose of one or at most 2 pills per day ( not the post major surgery standard of 2 pills every 4 hours). This is not a drug that you want to be on long term but you might try it to see if it can get you through the first 3 months, if needed
3) consider other meds like an anti-depressant or valium. I ended up on valium for a while ( I am still on small dose) when I got off ocycodone because my herniated discs caused significant muscle spasms. I am about to try an actual muscle relaxer drug to see if that can help reduce the muscle spasms even further.
4) have you tried to take the pill at night or considered playing around with you diet?
I have an onc and GP who believe that I need to do whatever it takes to stay on this drug. They do not believe that I have an addictive personality (nor do I) so they are want me to try to treat the side effects as they arise. I have discoverd that often medications for a short period do the trick.E. to g.
Equally important, these meds have helped me stay positive and active. Slowly, the worst of the side effects have become manageable. I am even back playing tennis, which at one point I thought was out of reach for a long time. I still have issues, but I am glad that so far I can stick it out.
I hope that you figure out what works for you! Also, remember that you can also change to another AI, if this one continues to be a bear. Best, Beau
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Good tips. If you haven't tried adjusting the time of day you take it, that would definitely be something to try. Of course, you need to tell him if the headaches come back. We should not have to be miserable!
About rings and swollen fingers; Are your fingers more swollen on your surgery side? Here is something interesting I noticed.....my surgery (and rads) were on my left side and those fingers were swollen enough that I switched my wedding ring to the other hand and wore bigger rings on my left hand fingers. Just this summer I was fooling around with rings, tried my wedding ring on the 'correct' finger and now it fits fine. (I have not lost or gained weight other than the same 10 pounds that I have gained and lost for the last 20 years!). So some of that may be post- treatment issues that eventually go away on their own (like in my case, years later).
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Question about the pains of arimidex. Does the bone pain move around? I have had it in the shoulder blades mid back/shoulder area...pelvis--lower back- hips- never stays in one place. Haven't had knee pain or finger pain folks talk about.
Just curious if others have these types of pains? Never lasts too long- not more than a day before it goes away, then returns somewhere else usually.
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It can move around.
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Beau:1) that was my first thought and was taking my bp when the headache first started… bp was normal…
2) tried the oxycodone and it didn't even phase the headache
3) can't take valium either but do have some xanax just knocks me flat for 48 hours, its kinda hard to work that way :-)
4) I have been under a nutritionists care since rads and have done a lot of adjusting with foods, but haven't taken the pill at night - I am on gabapentin at night was kinda concerned about taking them together. I guess I can try starting it tonight and just give an hour between pills?
Thank you for all your input - I need all I can get. Ruthbru - that goes for you too
and all the other wonderful ladies giving me suggestions.0 -
LisaGH - yes, the pain does migrate - at least for me it does.
I am getting mentally frustrated although I try to tell myself only 3 more years. I take percocet at night so that I can fall asleep as the pain in my hips and outer thighs make it impossible for me to get comfortable. These last three days I have had issues sitting for any length of time.
I am seriously thinking about going back to the pain clinic. I had gotten off the pain meds for about 2 months but now the pain is getting worse.
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Hi, new to this forum. I have been on either Tamoxifen or Arimidex for the last 2 1/2 years. Tamoxifen wasn't great - hot flushes and joint pain with exercise, but Arimidex was so bad I went off it after 6 months. Back on Tamoxifen now and generally manging the SE's reasonably well. When I was on the Arimidex I found a reference on another BC forum to a supplement by Schiff called Move Free, which another Arimidex taker said had really helped her with her joint pain. I looked into it, found out I had to get it from the US (I'm in Australia), and got some to try. It worked pretty well on the pain I had while on Arimidex, and I have absolutely no joint pain even now on the Tamoxifen. It contains a number of well known joint support ingredients including MSM in high doses. I take the one in the green bottle as I've found it to be the most effective. It can be bought relatively cheaply through Vitacost, or Swanson's for anyone who is interested. Oh and if anyone wants something for a libido boost, try Damiana and or Sarsparilla (concentrated herb as opposed to the soda) - My Naturopath sells it as "sex herbs" and it made a huge difference to me.
Erin
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Hi Grammie,
I would think that it is worth trying it at night and an hour in between sounds good to me. Just check in with your doctor if you feel the need. Sorry to hear that you have tried the other suggestions and they have failed. Good luck! Beau
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Beau - I took it this morning but think I might try it with dinner tomorrow - I just got off of the prilosec for a couple of days and the burn came back after taking the arimidex this morning..
.. guess I will need to start that back up too.. rats.. I know - "Just treat the symptoms and get through this!" My med list is getting longer and longer... But with all the encouragement here - WE CAN DO THIS!!! Thank you God for holding my hand and guiding us through this... 0
