Arimidex
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Otter: They could not figure out why I was in so much pain in that area and didn't seem to know how to stop pain caused by vaginal atrophy. All my urine tests showed I did not have any UTIs so my internist just took a shot at it and put me on the stronger Nitrofurantoin even tho I did not have a UTI. It stopped the pain after a couple of weeks on it and my Onc said he wanted me on it permanently but at a lower daily maintenance dose (50mg). So far knock on wood (my "head") it has kept me painfree. There are many times in medicine that our docs really don't know what to do about weird things that happen to our bodies so they try to make a lucky "guess". Some days I have woke up and feel the pain is returning so I just take the 100mg instead of the 50mg and it stops it in it's track. I don't like having to take a certain anti-biotic for something my docs don't really know how to help and have to guess at it but as long as they have a lucky guess that is what counts. I wonder if the other women who are on ALs have this type of pain with their vaginal atrophy or if it is just something weird with my system. I am also on daily extra Vit D3 so maybe it is helping the problem in some way too. Doctors don't always have all the answers to our medical problems.
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What about a bladder infection? They don't always show up in urine tests.
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ruthbru: I used to wonder about that and seriously think it was tied into my bladder but they all kept telling me it wasn't an infection. So why does the anti-biotic keep it under control? I think the Arimidex was triggering off some type of bladder infection and that is why the Nitofurantoin worked and my Onc must have had experience with other patients because he was the one who said I needed to stay on the minimum dosage indefinitely. Who knows what is going on in our bodies when we put so much stuff in us to try to survive bc!
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I had a bladder infection years ago (long, long before A). They put me through every test in the book before they figured out that's what is was. (It is so long ago that I can't remember how they finally came to that conclusion).
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Hi Marilyn,
Glad to hear you're not having bad side effects from the Avastin. I've been on it for 10 months and have the same side effects that most other ladies have. I think mental attitude is as important as anything can be when it comes to healing after cancer. If we can work through the aches and pains and bad days, the good ones come with more and more frequency. Sure I'm stiff in the mornings or after sitting for a long time, but once I'm loosened up, I still bowl and golf and do all the other things I used to. So, hang in there, and stay positive!
SuzanneDivot
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medigal, yes, my sister got vaginal atrophy and I don't have it, but both of us were told a prophylactic dose of nitrofuran and post sex dose would help. The kegels help to strengthen the vaginal walls so that they can regain muscle tone, thus helping with the prolapse.
I don't know how and why the nitrofuran helps, but if I get another UTI, I am going to a urinary tract specialist and I will be sure to ask how, why, etc. when I do. Maybe you could get a consult with one and she could answer these?
I think we have to replace moisture on a daily basis and also fix the ph,,,kind of like the pool, huh...I do all of those plus Kegels.
I know some women on the MOJO thread say that a vaginal dilator is the way to do for vaginal atrophy, as they tend to see this in ladies whose hubbies go on viagra after being inactive for years and they get frisky again, then this happens. It's a use it or lose it type of thing.
xo
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oops, sue, check with your dr. first before you take it! And get the D levels checked too, before. It can be toxic in large doses (I'm talking gigantic) but do check your D level first. I wouldn't want anyone medicating themselves without an oncs' OK first.
No, it didn't help with the hot flashes, those just left on their own after about 4-6 months or so.
xo
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thanks, Annie, I'll be seeing my Onc in Nov and will discuss it with him. Good for you that the hot flashes left so soon!
SuzanneDivot
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I just started Armidex today
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welcome to the club Renee! I've been on Arimidex for about 6 months now. I was happy to find this thread recently regarding Arimidex and SE. It just confirmed and/or explained many things ;o) A big Thank You to all the wonderful Ladies sharing their personal stories!!!
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You will be fine, think of it as a life insurance policy!
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Welcome to the A team Reneerodgers! Hope the A works out the very best for you, good luck!
I'm very relieved to say it was a benign cyst on the tonsil, whew! I'm very grateful for your support. I must say, it was a worry. Poor Michael Douglas and everyone else going through that horror. Mon onc said I'm running a high CA27 at 39 but not to be concerned. Ha, easy for him to say! Anyone familiar with this revolting sichyashun? Thank you. Hugs all around! Julia
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Friends:
I have been on Arimidex for more than 3 years. I have had some significant side effects but believe that chances for my long term survival are improved by taking it, so I stay on it.
My principal side effects have been (issues I never had UNTIL Arimidex):
Very significant bone pain, back pain, joint pain, and dry mouth. I also had a fiercely frozen shoulder that was very painful; I believe that was related but, thank goodness, that's almost gone. I had a bone density test yesterday and will be able to report on the result of that in a week.
I am blessed with a very upbeat, positive attitude, an invaluable inheritance from my parents. This helps a lot. I take Advil but, quite frankly, don't think it helps much, and it also has side effects! Occasionally I take 3 - 4 aspirin with a large glass of water and a piece of bread or yogurt to protect the stomach. This helps me as much as the equivalent Advil. But honestly, I'm counting forward to being able to get off Arimidex entirely in under two years!
I try to get out for a long walk every day. I find that a brisk walk, albeit sometimes painful, still makes me feel a lot better. My frozen shoulder has gotten much better and I have begun swimming again. Really look forward to doing several long swims a week.
Best wishes to everyone on the site. God Bless us One and All!!!
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In my area five years is the limit for Arimidex. You may want to ask your doctor if it is necessary for you to remain on the drug. Some medical articles that I have read suggest that 5 years is sufficient and that protection continues after you stop taking the drug.
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Good morning team and welcome 1234-sicknomore! Wishing you the very best and hope it's painfree the rest of the way. I commend you on your great, positive attitude, way to go! I really believe your mindset is part of a healing, healthy lifestyle. I would be the first to admit when you're faced with threatening situations and/or mired in worry, it's difficult to think life's a bowl of cherries and just put on a happy face. It takes effort sometimes but worth it, imho, positive vibes have healing effects and negativity goes the other way. Anyway, my halfpenny's worth ... hope the team has some belly laughs this weekend. Hugs, Julia
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I started Arimidex 4 days ago. Could the pain I am experiencing in my lower back come on this quick from the drug? I can not get in and out of my car, get out of a chair or walk up the stairs. Could this rapid onset of pain come from taking Arimidex? Thank you in advance for your input.
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Hi NancyLa, so sorry to hear about the pain. I'm way, way down on the knowledgeable on A list but imho, I don't think such an acute event could come on so suddenly with A. It sounds like sciatica or a stress-related spasm of some sort that hopefully will go away as rapidly as it appeared. Good luck! Let us know. Julia
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Hi NancyLa, I agree with Julia257 - not necessarily coming from the A (though it could). It just seems too soon. Take it one day at a time and see if it goes away. HUGS.
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Thank you all for your kind words. I spoke with my oncologist and he told me to stop the Arimidex. He said some people unfortunately develop S/E rather quickly. I am just one of the lucky ones. I am going back on Tamoxifen and will finish out my 5 years on that.
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Good luck, Nancy!
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I THINK that I may be on Arimidex the longest-8yrs. I seem to be having more joint and muscle pain. The hot flashes are mild now and I seem to sleep ok. I take mine in the morning. Everytime that I would ask the Dr. how long to stay on it they would say no one knows. I am an 11 yr. survivor. I feel that it is better to be alive and deal with the side effects. Oh, and I have the wt. gain, too. Does anyone have any info about how long to stay on Arimidex? Cost is not a problem as my Kaiser insurance pays for most of it.
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Hi Ladies,
I am starting Arimidix today. I am a bit concerned about the SE's but figure that it will give me a better fighting chance against reoccurrence. I just finished chemo last week and didn't get any real SE's from that until the end (week 10 of Taxol). I am still fighting some mouth sores and joint pain so the Arimidix may make things worse for awhile. I am just hoping that I can get back to excercising and maybe that will help. From reading the posts it seems some of that helps.
Lots of good information on here so thanks for sharing your experiences. It really helps us newbies.
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rn, they don't KNOW how long people should take it! Doctors have usually gone with 5 years because that's how long tamoxifin is effective (but Als work in a totally different way) and the first 5 years has the highest chance of recurrence. Als haven't been used long enough for them to have 'answers'. I'm half way through year 3 & if my SEs stay managable & bones hold up, my oncologist said he'd lean toward me continuing on after 5 years. I'm hoping they have more data by then. Scary either way!
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Hello and welcome Jackie, congratulations on completing chemo and well on your way back to good health. My best wishes. Absolutely, need for speed is key, try to push it every day physically. The bones, joints and muscles appreciate the attention and somehow this activity turns on very beneficial results in the emotional dept. Endorphins? Whatever it is, as the queen of crafts says "it's a good thing!"
Rock on A Team!
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I take my Arimidex in the morning and for hot flashes I take Vesicare. It seems to work for me. I have some joint pain, but take Mobic and MSM and they help that. Hope this may help someone.
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Hi Ruth!
Actually, you are considered "good to go" after 2 or 3 years....I have had this twice, and I noticed the first time around, at my two year check, everyone sort of slacked off freaking out over every little thing I got.
The second time, it was even more noticeable. I asked my onc and my surgeon and they both said, if you get to two or three years from surgery, they don't worry so much re: recurrence. They will still check you but it does become more routine.
Some good news, that may make some people rest easier!
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p.s. Jackie, move at all costs. It REALLY helps!
Get your D levels checked....no one mentioned this to me, I found out about it on the boards. I was deficient and once I supplemented (per my GP), I feel 20 years younger and can move easily again.
But it is really important to get up every hour or so and just move, stretch, bend, and to exercise.
Good luck!
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Also eat prunes; 6-8 a day. Good for bone health & reduces your risk of colon cancer too!
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Ladies, thanks for all the good advice. I am going to get the D level checked. Especially if it helps with the movement stuff. I have a new puppy and she needs a lot of walking so it does seem to help the old joints.
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yep...I was....my bp went up and i stopped takeing it...it made me really tired as i work in warehouse and I started to drop weight....very nausea and loss of appetite....started to get no sleep.....long story short went to hospital cause was having anxiety......they had me on cardiac unit for three days to amke sure it was ok then had bone scan....I cannot function on arimidex. my normal reating rate is about 120/ 75 or 117/ 72 heart rate is 75 or 72 well on arimidex went to 138/85 at resting and I am and was always very active.....I would not take that...controlling it with meds is not necssary i feel...it is because of arimindex......I am not overweight or a smoker or anything else. after I was off the arimindex my bp dropped to 113/65 then went to 97/74 then 103/58 they did that ortha pedic bp stuff...sitting standing laying down crap.....anyway been off the stuff for 9 days and the severe nasuea is not there...was having it for two weeks after i was into this medicine for wo months.....my body is trying to get its strength back. I get tired and been off of work because of it, but i will have to try to go and suffer it out tom. I was on Tamoxifen for 31/2 yrs before my dr. switch it....becayse the side affects were suppose to be less.....not....I really did not have that much problem with tam and I really pay attention yto my body and when things change...as i am having problems with inner ear imbalance so I know how I felt before I start things....and if things start right away or not...it still would come down to certain meds that they want to keep pushing...esoecially if u have insurance. what scared me about the arimindex is that i have read that it can cause sudden cardiac arrest....and i have anxiety already....they are hard to control when they start. I already had really bad hot flashes.....and had some slight other things but mostly hot flashes and they came on with more sweets.....I did gain weight, but I am active so not that much...could not lose weight....then all of a sudden did not do anything else and lost 7 lbs on arimindex? Some people like it, but it is not for me and I would not recommend taking it...if u have issues. I am cancer free of 3/12 yrs...I rather have my life be tolerable to enjoy than to be inhibited by some stupid pill...chemo is over long time ago....sometimes I wonder if I just stop meds all together....and trust in God hands later...suppose to be off stuff after 5 yr mark...whats the diff? I am 43 and have to keep my estrogen low because cancer was estrogen pos....threw me into menopeause...had not had pms since 2007?.was off tam for a month and did not get pms then either...was pharmcares fault...mail order....they sent it to late> anyway I hope this is helpful. and if u do not want to take something that is your right not to....don't let them push u around. I have three female dr....the surgeon was one...onocologist and my primary....and I always ask alot of questions....they know me well. before that i had this guy dr and he passed up the knot in my armpit 3 yrs prior me getting diagnosed...he said i was to young and I eventauly had enough of that guy...caught him listening to my lungs with out scope on....after that I was fortuanate to get my dr now whomsent me right away and yep...had cancer....thankfully it was the slow growing kind. God Bless and i wish you well.
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