Arimidex - Coping with the SE's
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I hope I'm posting this issue on the right forum.
I've been taking Arimidex for 1 1/2 years and have recently experienced more frequent urination at night. This is especially annoying because I have a walking disability and getting up more frequently is difficult and is really interrupting my sleep pattern.
I did some "Googling" earlier and found that vaginal atrophy can contribute to increased urination. I had my annual gyn exam several weeks ago and the gyn doctor did confirm vaginal atrophy.
So, I've put 2 + 2 together and have concluded, at least for now, that the vaginal atrophy is contributing to my problem. I see my onc on 9/1 and intend to go over this with him.
In the meanwhile, I've started using OTC vaginal lubricators (no estrogen based ingredients) which seem to help with the burning. We'll see, tonight, if that decreases the frequency.
Does anyone else have any experience with this issue and any suggested remedies? Thanks, in advance.
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like2hike,
I am so sorry for the loss of your mom. I can't even imagine what you are going through. I am praying that the biopsy results are B9.
Weety - Any major dental work needs to be done before being treated with zometa because of osteonecrosis of the jaw. Osteonecrosis happens most often when zometa is being used to treat bone mets where patients get zometa infusions up to monthly. Even in this population the occurence is still rare but better to be safe than sorry.
cw89134 - I say my gyno for yearly exam and told him I was afraid my vagina was going to wither away and be gone and at 48 I sure didn't want that to happen. He just laughed but I was serious! He gave me an estrogen-ring that supplies low doses of estrogen to the vagina and reverses the vaginal atrophy and dryness. It appears that the estrogen levels are so low and localized that it does not contribute to BC (that is debatable though). My onc suggested lubricants but they did not help for the atrophy at all. My onc said if that didn't work we could try the e-ring. He wanted me to try more lubricants first but I could hardly stand sex because it was so dry and hurt so much. I chose for QOL and can say that after just one month have seen a huge difference. I'm happy again with sex and so is DH! My gyno said that the atrophy does lead to increased UTIs which may be what you are experiencing. The E-ring helps for this too.
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If you want to try something without estrogen first, give coconut oil a try.
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My onc said the vaginal atrophy was really bad and I was in a lot of pain and discomfort. I'm now taking Vagifem, with my onc's approval as well and it has made a huge difference. It does have estrogen but it stays within the vaginal area and does not seep into the rest of your body.
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Ruth - where do you get coconut oil from?
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I buy coconut oil from the Health Food store. It's easily available. It might help with lubrication but it won't re-build the vaginal tissue.
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I am new at all this lubrication stuff
. I haven't had a need before my hyster/ooph and being on on Arimidex. Any helpful hints in that department would be greatly appreciated! I know this might be TMI but I don't know where else to turn. 0 -
I bought coconut oil at Walmart; 'LouAna Pure Coconut Oil", right in with the shortening and cooking oil, on the top shelf (no doubt the little worker guy who helped me find it wondered why I was acting embarrassed!!).
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don23, there's a thread you might want to check out. It's called "I Want My Mojo Back". It has a lot of good, frank discussions and advice.
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Thanks Ruth - I'll check it out! I did know about that thread but since it didn't pertain to me at the time I saw it I didn't look into it. I will definitely do that now. Thanks again!
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don23 - I read the entire "I Want My Mojo Back" thread shortly after diagnosis and it took several days. As my name says I made lists and the information was so helpful. Some things worked and some didn't. Get ready to laugh and cry as you read. The Arimidex has made things more challenging but it was also a great help to have tips from that thread. Good Luck! Oh, I use Vit E oil viginally every day after showering and it works well, you can find it with the supplements at any drug or grocery store.
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Rarely people are sensitive to Vitamin E. I happen to be one. Dr. Rx'd Vitamin E for an incision. Made me itch like crazy. Just in case.......
pam
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I have tried Replens and the KY brand Liquibeads. Replens is messier so I prefer the Liquibeads. These products are for use once every three to four days. They are estrogen free. Both my onc and my gyn strongly recommended against anything with estrogen or phytoestrogens. My tumors were 80% ER positive. I also use three different vaginal lubricants combined prior to sex. I use KY (not the warming stuff), Astroglide, and Slippery Stuff (which I got from my PT). You could park a Cadillac in a dog house with all that stuff, but I still find it somewhat painful during intercourse. We lubricate both of us and I'm surprised we don't slide right off the bed! As my gyn explained to my husband and me, it also helps if your partner goes slow as the minute you feel pain, your vaginal muscles will tighten and make it more painful. This is an automatic response and nothing you can control. I think this, along with lymphedema, have been two of the most difficult side effects of bc that patients are rarely warned about early on in the diagnosis phase. It seriously affects QOL!
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Have to say that I'm laughing right now about the Cadillac in the dog house.....I guess if we can keep our sense of humor intact, we will have a fighting chance of staying sane!
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Sliding off the bed trickled my funny bone :-)
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These sex problems SUCK big time.
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Weety- Yes they do.
I also use the estring with my oncs ok- he says it's safe- my E levels continue to test low- and IT IS SO MUCH BETTER! I was in pain no matter what before (I almost couldn't be touched at all)- now I have to use a little lube but then I am fine. Nothing is 100% but this has been probably the biggest QOL issue for me. They really don't tell you, or care! But it's such a big deal.
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I whine about it every time I see my onc. They've given me testosterone gel to apply at the vaginal entrance and it's helped somewhat. I'm Stage IV and 100% E+ so my onc does not even want me to look at someone who still produces estrogen naturally.
I keep hearing about a new SERM called ospemifene that's supposed to work wonders for vaginal atrophy. The makers (Quatrx) sold marketing rights to Shionogi early this year and they're supposed to apply to FDA for approval "soon." Not sure what "soon" means but I hope it's within a year!
E
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Here's a link to the Advanced Clinical Research (ACR) trial involving Ospemifene. I know nothing about ACR but they're offering the drug up for free to trial participants.
http://acr-research.com/newsite/study_details.php?id=46
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Thanks to all for your suggestions. I will definitely give them a try. Rocket - loved your comment about fitting a cadillac in a dog house - made me laugh.
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Hike wanted to offer condolences about your Mom I only wish my Mom was a Mom in my life. You are lucky to have the experience and keep those memories close to your heart/ I also wish u luck on the bio. Maybe its the stress of losing your Mom.
I have been on the generic Amx for almost a month and have the hot flashes and joint pain. If I keep up with the fish oil and epo it greatly subsides the pain. I do notice some weight gain especially in tummy. I am in forced menopaused and this is where the weight seems to go. I was wondering if anyone else knew that gabapentin for nerve pain and magnesium should not be taken within 2 hours of each other. I read that on the instruction for gab. I am taking 1200mg of calcium split up during the day but it also contains d and the magnesium which helps absorbtion. Feedback anyone? thanks
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Loved the comment about WI and weight gain ruthru and sue about my hunting and so many more ...I just not keeping up since I am here today gone tomorrow ha WI now retreat tomorrow! Rocket any questons about libido ,,eg lack of because of effexor I have been the 70 yr old guru on SEX These woman have already READ ALL ABOUT IT in this forum and on the old armiidex one But if you need info I am here to relate my experiences ,,,ASK AWAY! I be back on Friday and be happy to share.... via here or PM!
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First of all, thank you Lowrider54 for the original post - I had no idea that a gluen free diet could make as much of a difference as it has and this is only my 6th day of trying it. Thank you, thank you! My aching hands and knees thank you as well - maybe I can remove this magnetic bracelet sometime soon? Time will tell.
I have been on A since February, after my localized radiation in January...I couldn't have gotten thru all this without all you wonderful ladies and all of your suggestions and advice. I thought it was just me - the onc had told me that I would be plunged back into mentalpause and man oh man was she ever right. Night sweats are worse than the first time...but she said that I "might" have some joint pain but I didn't know it would be quite this bad. When I went to see her last month all she could recommend was glycosomine and 'see if it made a difference'...Well maybe it has, but I think the gluten free diet has made a tremendous difference in this short amount of time.
And this pain during sex - even though we use Gun Oil 100% silicone, on me, on him, on me some more - is most likely vaginal atrophy? Who knew? Gonna go see my gyno on that one...
And yes, 8 pounds in 8 months no matter how much I diet? Hoping the gluten free helps on that end as well...
In addition to glycosomine, I take calcium with D, 81mg aspirin and an antacid along with A and BP medicine...Like2Hike - I'm so sorry! I hope your results are negative...I lost my mom only 3 years ago - I think of her every single day...My heart goes out to you...How much can one girl handle?
I have no friends or relatives that have had BC - you ladies are my lifeline - thank you for all your posts...
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.Just to let everyone located in Northern NJ and other close vicinity if you had not already found out:
The Susan G. Komen Walk For the Cure Race will be held at the South Mountain Reservation, West Orange, NJ on May 15, 2011.
Hugs,
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weety...I have bone mets and am doing the Aredia...from what my onc says, they are so similar just the se's from the Aredia are slightly less in some people.
As far as the wisdom teeth go...once you start the Zometa and should the teeth do start to give you issues, you will have to have stopped the Zometa for a period of time, have them out, wait for the sockets to fully heal and then wait a little longer to start the Zometa again. It is a personal choice - check with the dentist...if he sees no impending issues, I kept mine until I was 54 almost 55 sooo - up to you!
And yep, it is WEIRD...
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Just to clarify and thank ya'll...I only created this A Team site when the original A Team site got so filled with debate that there was no longer any talk about how to cope being on it so I can't really take the credit for the thread - only for moving it over.
ritaz - I don't know if it is the gluten but since my mets dx 11 months and 2 weeks and 4 days ago, I have lost 30 pounds. I was up just over 200 and I am now back into some of my clothes - I didn't call my 'fat' clothes my clothes. The change in eating habits - not dieting - just eating differently - I eat all day but no pasta, little bread, little potatoes, more fruit, yogurt - changed to raw sugar - big difference in joint pain between processed sugar is amazing and it must metabolize different too. All this is so very unscientific - just what has happened to me.
hike - so sorry about your mom...
Now, sex - what is that? My significant other passed away in February 2006. I finally got to the point of wanting to date again and BAM, mets! If you were to head over to 'The Date' thread on the stage iv forum, I have rekindled a connection with a high school sweetheart. There is nothing wrong with the libido - oh boy, nothing. However, this vaginal atrophy has me concerned. No question is a dumb question unless you don't ask it - how do I know? I don't have sex so I don't know pain or slippy or not slippy - I must be producing something as talking with Mr. Marlboro man does produce a very warm and wet response to some of the conversations and the dreams...woo hoo.
I am going to let the kitty out of the bag here - we are finally going to have a night together and I need to be prepared for any possible foul ups on my 'new normal' functionality - what should be in my little brown sack? I have mets and am er+ - I used to use the Tantric oils but they have been in a box for 4 1/2 years - do they have a shelf life? I want this boy for the rest of my life - such as it is - got the pain meds, supplements, all the regular stuff - looking for the tastiest but yet subtle slippy stuff as this needs to be a 'rock your world' night! Wow, never thought I would be posting this...LOL
Hugs
LowRider
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Dear Lowrider,
I would just dab a bit of the oils on my arm. You will know soon enough if their shelf life is over.
I suspect "things" will just go fine. Especially if you can go for more than once. You might preface it by saying you are a "bit out of practice". Then, you can "practice away" until you get it right
If you have joint aches, Aspercreme might be a help. I use it prior to/during my long rides, so I can imagine other uses.
I wouldn't assume just one night BTW....plan for a longer term with all sorts of time to learn how to rock each other's world. - Claire
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Lowrider: I find KY works really well.0
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Thanks Rocket...needed a good laugh today. The weekend was bad pain wise in the joints and muscles. Today is a whole lot better. This medication is the strangest stuff.
Thought I would add that my GYN told me to stay away from the warming products for couples if you are experiencing any atrophy problems...because of the dryness the products will cause more pain than you can imagine. I use the KY liqidbeads and slippery stuff.
Lakewoman...have a good hunting season....stay safe.
Prayers and Hugs to all
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Hi all, I am looking in to some variations of dried, or powdered, wheat grass and sprout and other things from the health food store that I have heard very good comments about. One brand also has flax seed among other things. Did I remember reading that someone said not to take any flax seed and if so why not. Thanks again, Meadowlark
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