Arimidex - Coping with the SE's

MamaV

Hmmmm ... we have used something we ordered online from a place called early2bed.com (LOL) and I might just continue with that.  I will look at it at home and post the name later - it's GOOD stuff! 

otter

MamaV, I've tried 'em all:  Astroglide, Replens, KY Liquibeads...  For some reason, they all burn and that sort of messes up the mood.  Plain old KY jelly seems to work okay, even though it's not as exotic-sounding (or costly) as those other ones.  Because of the burning sensation, I thought I might need to use the "sensitive" version of KY jelly, but that's so darn expensive compared to the regular stuff.

I have not tried coconut oil yet, partly because I don't know where to buy the good stuff.  I live in the Bible Belt and the gov'mint shuts down those "special" stores as soon as they open up.  Don'tcha love having your gov'mint spending your tax dollars to protect you against good-quality lubricants and toys?  Oh, and we don't have very many of those fancy food stores here, either, like y'all have on the coasts.

Sorry... got sidetracked there.  Anyway, I also haven't tried coconut oil because I just plain don't like the scent of coconut.  I can't use it in a shampoo or lotion, can't put it in my coffee, can't eat coconut in food, ... just plain picky, I guess.  And, I can't imagine putting food down there. <sigh>

otter

chatsworthgirl

I have another slippery suggestion.  I used Albolene cream prior to the bc for dryness and it was pretty good.  It has no smell at all so if you don't like coconut try the Albolene cream.  You can get it at any drug store.

  I am stocking up on the suggestions of others as well though so that I can be prepared when I get up my nerve.  Stupid I know but I am so worried that I will have pain and not be able to do it that I am procrastinating.  In the meantime I am inserting some coconut oil every night to try at least to moisturize the vaginal lining in hopes that it will help.

The coconut oil that I got at Whole Foods is Nature's Way Organic.  You can cook with it too LOL.

It has a faint coconut smell and not at all bothersome.  When put it on my dry hands and arms it was absorbed almost instantly. Very smooth skin afterwards so I intend to use it nightly.

Kathy

Bogie

Sunflower,



I haven't read all the posts but curious about the coconut oil from Trader Joes. Are you saying you use it as a moisturizer as well as cooking? I'm looking for a good healthy moisturizer for hard winters.

zumbagirl

Astroglide is our lube of choice. We love it. I am so dry since chemo, that (don't laugh) I use a turkey baister to get the astoglide up there, so intercourse is alot less painful . I am also going to try the lidocaine ointment that my onc called in for me today, to numb the area so it is less painful

NativeMainer

I've been keeping up with the anti-dryness conversation even though vaginal dryness is not an issue in my life (right now, anyway!).  I mixed coconut oil and jojoba oil in equal amounts, added a few drops of my favorite mix of essential oils, and got a lovely soft moisturizing cream that melts on contact with body heat and absorbs quickly, doesn't feel oily.  I've been using for a few days and I already am having less trouble with the winter dry itchies I usually get in the winter.  Neither the coconut oil, jojoba oil or essential oils leave any lasting scent, but I enjoy the scent while I'm putting it on.  I love this stuff! 

MamaV

zumba - I'm sorry but I did laugh.  The visual image was just great!  But, I say whatever works!

Anonymous

Bogle

I haven't (yet) tried the Trader joe's coconut oil - a friend who knows I LOVE the Whole Foods 365 brand in large black jar - mentioned it, cuz she knows I go to TJ's on same trip when I go to WF.

I DO COOK WITH WHOLE FOODS COCONUT OIL.  Love it.  Especially in Thai curry stir fy.  And, yes, have jar next to stove, jar near bathtub, and jar on desk to rub on hands during day.

Almost 5 years on the A Team, my skin is so dry...alas, it's better than the other option..but...

Anonymous

Damn, you are all the BEST!  Off to kitchen supply shop to buy a turkey baster!!!

Rocket

ROFLOL! You guys are too funny! Thanks for the giggles! I'm off to Fresh Market to see if they carry it. I don't have a Trader Joe's or a Whole Foods.

zumbagirl

mamaV, it is hilarious actually. Hubby & I had a huge laugh over it.  I will also share the lidocaine I used last night, helped a lot. No wincing and stinging pain . YAY !!!!!!!!!

mpeaches

I don't want to jinx myself, but it's been several weeks since I started the Femara, and knock on wood - so far, so good! The really bad pain in my hips and knees and wrists is gone, the hot flashes are far fewer!

As for difficulties with dryness and intimacy, my oncologist gave me a prescription for a compounded med that is a vaginal suppostory.  So far so good with that one too!

And I'm very excited because I don't have to see my oncologist until April!  (All my medical stuff is a 90 minute drive, each way, from home).

You ladies are incredibly inspiring, and so much fun.  Thank you!

Healing Purrs,

Jenn

Anonymous

Jenn - whats the prescription?  I thought the only prescribeable stuff had estrogen in it????

mpeaches

Sunflowers - I know he told me, but I don't remember. (Cheese brain).  It's definitely NOT estrogen, because I can't go there!  I'll find out and post it.

Sleepy Purrs,

Jenn

balsie

Is it scream cream?  I read that somewhere on one of these boards and that is a compounded cream.  

Balsie 

Anonymous

Thanks, Jenn.  Tho' I am realy doing well with my coconut oil "suppositories" - I'm always interested in learning something new.  Learning I'll probably be on the A Team for another 5 years, or figuring out how to take Tamoxifen with an SSRI - don't expect this particular "issue" is going to go away.  Also, being a very happy almost 67 ( in March!) year young might have something to do with it

But  I'm in total DeNile about age making a difference, except for the better...

Rocket

Ladies, check out the thread "The Solution to Painful Intercourse!!!!!! YIPEE!" There is a good discussion going on about Scream Cream if you are interested.

Gia259995

I understand totally how you feel.I have always watched my diet,my weight,exercised did yoga and opted not to take any drugs unless absolutely necessary. I have now been on arimidex for over two months post surgery. I started on arimidex a month before my second surgery for inter operative radiation. In the last three weeks I have extreme bloating and when went off it fir a week my stomach went right back in. Now after a week of resuming it I have a ballooning abdomen

My onco suggested I try aromacin next.

Bogie

Gia, if you are just post op maybe some bloating is from the surgery? I haven't started yet on Arimidex, and I'm 5 weeks post op and have severe stomache bloat, and I've even lost weight. or I'm just noticing more now since my breasts are gone from bilateral mastectomy.



After researching all the terrible side affects of this drug, I'm not looking forward to starting it!



Does fish oil 2000mg a day really help combat the joint pain and muscle aches?



Would love to hear what has helped others before I head back to a stressful job of sitting for long periods of time...ugh!

Anonymous

YES to fish oil to help with joint pain.  I take a teaspoon a day of Nordic natural Liquid Fish Oil.  DOn't know what that would be in capsules - just know it's easy to just take a teaspoon full.

ALSO, check you Vitamin D level with a blood test.  I an gluten free, that has made a HUGE positive difference for me.  Acupunture is also wonderful, the combination keeps me pretty much pain free.

Make sure to get up and S-T-R-E-C-H every 20 minutes of so..walk around a bit, also "fidget" while sitting- swing your legs to keep knees as flexible as possible - AND, don't forget working standing up in front of a desk.  I know many people who do that now.

Jean0078

I started Anastrozole on Jan. 1, 2012. I figured that would be easy to remember. Anyway I had finished chemo on Dec 19 and was really feeling great-good energy, good mood etc. Well a couple day ago, about four weeks on Anastrozole I got really down- feel like I want to cry all the time, nervous and  lots of fatigue. Generally feel like cr-p .This exactly how I felt at the start of menopause and why I started using a patch which made me feel wonderful again. Now with the BC diagnosis the patch is out of the question. I had been off of that for 6 months prior to Anastrozole. My question is do these symptoms, crying, fatigue etc let up and how about ball park estimates of how long that takes. My onc. thinks 6 moths or so. Not too achy though and no hot flashes although these were never my problem. I am afraid to make any plans short or long term as I cannot do much of anything feeling like this!

TinaT

Jean0078 - Hi!  I think everyone is different.  However, I had some strong emotional swings for a while.  That seems to have leveled out, but it ran from about month 3 through 6 of starting the anastrazole (I take the generic).  I still am surprised to have the occasional mini-meltdown, but fewer and further apart and overall much, much better now!  Also had a really horrible cystic acne flare and GI problems severe enough to require a colonoscopy, but those have both gone away.  The most recent, body stiffness and joint pain, started about 6 months out, but that seems better lately as well.

Don't mean to scare you....just know that some side effects (like the bone stuff) may persist, but the emotional ups and downs should level out once your body adjusts to the lack of estrogen.

Hang in there!!!   

Jean0078

Thanks for the reaffirmation! Sometimes a person just needs that!  Your response made me feel much better. Also I noticed you have implants. How is that working? I cannot have that Tram Flap or whatever due to bad scoliosis and taking any muscles from my abdomen would make it worse. If you feel like it you can send me a message @ jschaefer2@charter.net.

ruthbru

Keep moving, most SE level off with time; be thankful we have this big gun in our arsenal against recurrence!

Anonymous

Jean - the SE's seem to level off, change, and the good news - is yu can take almost any antidepressant with the AI's - they really REALLY can help - even if it's only short term.  It's a major WHOMP to the body to be getting no estrogen- much more drastic than how most women enter menopause.

sebm9

Hi everyone, I'm about 6 weeks into Anastrozole, having been through surgery, chemo (TCx4@3), 38 rads, then 1+ years on tamoxifen with zero SEs from the earlier treatments but tons of SEs from tamoxifen. I've been having no SEs to Anastrozole until last week when I began feeling creaky and achey. By Friday every bone in my body seemed to hurt, including my toes. I remembered that during chemo when I got my Neulasta shot, the nurses at my cancer center recommended taking Claritin, because for some not understood reason it obliterated the bone pain from Neulasta.

So, I thought I'd try it with Anastrozole. I popped a Claritin Friday night and within about 30 minutes I could feel a difference, the edge of the aches and pains going away. After a solid night's sleep, I hopped out of bed without needing to stretch. I've been full-tilt in the garden, hiking, and at the gym all weekend.

I began feeling a little achey last night as I was headed out for dinner, so took another Claritin and again the achiness went away.

I'll mention this to my nurses the next time I have an appointment.

Cheers,

Susan 

twoputter

I got really depressed shortly after starting the arimidex.  For the first time in my life, I requested an anti-depressant.  It has helped tremendously.  Only real problem I have now is some achiness and sleeplessness.

Jean0078

Thanks everyone for your replies. I already take an antidepressant for an entirely different issue than depression but it is probably helping some. I could up the dose but so far so good. I am hanging in there and will keep the tip about Clairtin in mind! My big issue at the moment is mood swings but I am riding them out. Went for a two hour hike today ( Hawaii) and felt much better. Still working up my strength after chemo. Start radiation on Thursday, Unfortunately that will be back in reality (Wisconsin). Thanks again for your support.

ruthbru

I think some of the depression or unsettled feeling comes from the fact that ever since diagnosis, you are in a crisis 'fight' mode. All of the sudden, you are DONE and they send you out the door with a prescription and a "WTF just happened here?" feeling. It takes time to process and come to grips with the whole experience. Add the lack of estrogen to the mix, and no wonder we have trouble getting adjusted physically and mentally!

TinaT

Jean0078 - Sending you a PM here....