Start Tamoxifen-April/May 2011

cmbear

Oh and hot flashes suck!!  Just saying!!

GirlFriday

cmblastic:  I understand the blue thing.  I can't say I feel depressed,exactly, but I just don't ever feel happy about things.  I feel like my energy and my attitude are kind of flat lined somewhere just below even tempered.  I see the rads doc next week, and my muscle is still so sore.  We went canoeing this past weekend, and it just wiped me right out.  I see the MO in two weeks, and I have a list of questions for her too.  I kind of feel that the doc/nurse attitude is that I should have just bounced back, but I haven't.  I just try to put every day together the best I can, and hope for a decent nights sleep.

CatMom4

Hey Wenweb:

 I have been on Klonopin (clonazepam for panic disorder) for years. My doc gave me Ambien which I have only used occasionally - I seem to sleep okay (wake up but fall back asleep) on weekends . I think work stress and the SE's from Tamox plus coming up on that 5 year anniversary are all a part of it. I just began waking up a few times a night and sometimes having trouble falling back asleep. Gotten worse since then though when you wake up enough it is SO frustrating. Because the Ambien and Klonopin are similar in class, I have to be careful not to take often but right now I think I need some help now and again.

 Any other good sleep tips besides all the usual stuff? I did buy some melatonin but haven't used it regularly enough to see if it helps. I've heard some things do and some don't.

Thanks for the post!

wenweb

Hi catmom4. Sorry, I don't have any better advise than what you already seem to be doing. I know that for myself, Melatonin alone gives me a restless sleep unless I take it with Chlortrimeton ( antihistamine ) That combination ends up with too many trips to the bathroom during the night. Right now ( sad to say) I am happy with some diazepam and chamomile tea. Maybe someone else has a better solution for you

CatMom4

Thanks wenweb,,,,,,,,,,,,I think what works for one doesn't work for all and even then it changes!

I really think my anxiety spiked a lot lately due to work stresses so I may revisit w my doc taking an antidepressant with my Klonopin. Used to have Paxil w it but needed to get off that when I started Tamox.

I think its going to be trial and error awhile........on weekends when I have a few glasses of wine and don't have that "I need to get up early for work" thought in my head I fall asleep okay and when i do wake at least I fall back asleep even if its several times. I have a feeling getting the panic and anxiety (which I've battled and had my ups and downs but I keep going!) under better control may help w the sleep issues.

You have a great day - thanks for the post. Always appreciate another survivor's point of view. We have to stay strong!

CatMom4

Hey CowboyGirl36:

My situation was different - had no chemo - so I don't know if some issues are related to that or the Tamoxifen. Plus all these treatments screw with our hormones and periods - hard to pinpoint the cause.

I don't think the Tamoxifen is causing my sleep issues - more increased life stresses esp. work plus I am nearing the five year mark on Tamoxifen so mentally it may be hard to think about losing that insurance policy.

I think whatever your doc says and feels right to you is best. Sometimes we need to add a med, take some sleeping pills, whatever, if we need a little help at times. Doesn't mean its forever...and I hope you are feeling better with the night sweats. I don't get them a lot anymore - did more at the beginning. And there's always an ear here to listen

TonLee

Ok 4 months in and I think the SE that I have are here to stay.

1.  Hot flashes (duh)

2.  Severe joint pain (some days, not always) especially in the hips, knees and elbows.

3.  Vag discharge.  Can I just say...ick?  (This comes and goes.)

4.  Lower pelvic pain.  The area is much more sensitive and easily "hurt."

5.  Charlie Horses!!  Omgoodness...at night while sleeping my poor calves!  No matter how many bananas I eat.

That's all I can think of right now.

wenweb

I've been getting charlie horses in my calves and toes.  I had a sneaky feeling it was from the Tamoxifen, not running and yoga.

spitnspunk

I had rads right after srgy, prior to chemo, and been off hard chemo since early Feb, still doing hercptn trtmts, and now been on Tamox since July 1. I used to take things pretty much in stride this past year, feeling that while this ride really sucks at least I'm still here to see another sunrise each day and that's more then I can say for a lot of folks I know that have gone to the other side this past year.

However, lately it's been hard to take things in stride because since starting the tamox I've noticed a lot of changes and my doc blows them off as not being related to the tamox. Like irritability with a capital "I" and depression, both have been bad since starting this. Now I have a very stressful job and my boss is totally unsupportive, so I don't know if it's all of that piling on or the tamox, but the doc seems to think these aren't SE's of tamox, but I wonder why so many of us taking this experience the same thing then.  

Then there is the leg cramps! I had to have an ultrasound to see if I had blood clots because the leg cramps cause my legs to stay sore for days some times; there were no clots so it was all the cramps. I get them all the way up at the hip/leg joint, the calf, and the foot. Really bad when sleeping,  wakes me up two and three times a night where I have to just walk around for about 5 to 10 mintues each time to walk 'em out, but they also happen a lot during the day, like when I'm driving or just sitting. I never know when one will hit. I already take prescrp pottasium and walk between 2 to 3 miles a day - I've also tried not walking, still happens and they are way worse when I don't walk for a day a two. Does anyone have any remediies to get these things to stop, or make them go away quicker once they start, so that they don't cause the stiff pain for days on end? (other then stopping the Tamox that is!)

I think it's going to be a long five years.

TonLee

Spit,

I don't care what they say....Irritation/crankiness is a SE of Tamoxifen.  I'm a mega-bitch on it ... my OB had BC.  Went through txs and then stopped taking Tamox because it was hurting her practice...said she was a flaming nut job while taking it.

I don't know if your pain is like mine....the charlie horses, but when they wake me up, I slowly straighten my leg out (usually by digging the tips of my fingers into the muscle fibers) and extending the limb slowly.  Once the leg is straight I wait a minute or two and then try to stretch it by leaning forward, or pulling my toes in.

Very painful, but once it releases, I'm able to go back to sleep.

The last week my hips and knees have really ached at night.....hate that.

CatMom4

Wenweb - I get cramps in my feet abut once a week and they usually happen in the evening - I do yoga and wondered if that was it or the Tamoxifen. I will be at 5 yrs in on Tamoxifen in a few more months so once i finish the course it will be interesting to see if they go!

wenweb

CatMom4 Originally, I was chalking it up to the yoga and running I do, but, given the comments I've read here, and the fact that I have been running for over 30 years and doing yoga for 16 years, I'm thinking it is the Tamoxifen.  I was on Arimidex for 14 months prior to Tamoxifen and it's all new since starting the T in  April.

TonLee

Every morning when I stretch in bed, I have to point my toes toward the ceiling and push with out with my heels...if I even THINK about arching my foot and stretching toes first, I get the biggest, ugliest, hurt like a sob-est, charlie horse in my calves and half of the time in the arch of my foot!

 Until Tamoxifen.  I didn't know what an abdominal charlie horse was.....lol

GirlFriday

I think they are all side effects! I have leg cramps on  occassion, but often my feet cramp up...it's awful!  I am irritable...and my period is now elusive, which aids the irritiability.  I don't sleep much between the hours of 2 and 5, and thankfully the alarm goes off at five.  Sometimes I'm up every hour.  I feel like I have to pee more too...I never used to pee every night, let alone, three times in a night.  I've been taking Melatonin, and that gets me to the 2am mark, so 10 -2 I'm actually sleeping pretty solid.  My hair is awful.  I'm taking biotin to help, but if I put any products on it, it looks good for 30 minutes, and then just goes flat.  I cut it shorter thinking it would be easier to deal with, and now I'm growing it out because I just want to be able to pull it back.  My warm flashes have subsided at night, but now I seem to heat up a couple times during the day which didn't happen before.  I'm 4 months into Tamoxifen.  I just keep telling myself that everything that is expecting estrogen, isn't getting it, and eventually it will just give up expecting it!

spitnspunk

Abdominal charlie horse, oh my gosh, If I turn and reach left or right for somethig, I get the worst cramp in my side/abdomen, it feels  like things are turning inside out in there. 

Also, anyone else notice an extremly dry nose too? I have to use saline spray all the time now or my nose stays so dry it actaully bleeds. It only started after I started the tamox so I'm pretty sure it's from that.

Golly, I would say what else is going t show up or happen on this stuff, but maybe I better not jinx things anymore.

wenweb

spitnspunk Haven't heard anyone mention a dry nose, but it makes perfect sense to me.  Less estrogen= more dryness.  My eyes and mouth have been more dry.  Try to take it one step at a time in regard to the SE's.

TonLee

Haven't noticed a dry mouth or eyes....but the charlie horses are about to do me in!  I can't believe the abdominal muscles can curl up like that.....it's like I'm pregnant and the baby is moving!

GirlFriday

I'm thirsty all of the time, so I guess that's dry mouth.  I've noticed the knuckles on my right hand have all swollen.  I'm concerned this may be the beginning of LE, but no one seems to mention joint swelling.  I meet with my BS in a month.  I'm going to have everything measured for a baseline...which begs the question, why don't they measure you as an SOP for SNB or any lymph removal?

Ondagrow

I CANNOT HANDLE THESE tamoxifen SIDE EFFECTS... UUUGGGHHH....

wenweb

Since this is the T group that started in April/May, I am wondering whether any of you have begun to have heartburn?  It seems like a rather long period of time for this SE to come on, but I did have this happen to me while on Arimdex.  After I stopped the Arimidex, waited a month, then began Tamoxifen, I have not suffered any heartburn until a few days ago when it suddenly reappeared.  Anyone??

TonLee

Wenweb,

I had to go back on Nexium for a few weeks because I was having pain under my left rib cage.  My Onc said Tamox can cause digestion issues....it didn't clear it up though....so I stopped taking it.  I think my issue has more to do with Herceptin than with Tamox though.

Hope you get some answers soon.

t 

wenweb

TonLee  Thanks for your response.

TonLee

My pleasure wenweb!

GirlFriday

Has anyone else had issues with anxiety on Tamoxifen?  I feel like every afternoon I just start winding up...I'm so tense by 4 I can't stand it.  It reminds me of PMS, but it's every day!  I can't really find any reason for my anxiety, and I think I'm pretty in tune with myself...but I just feel since I've started taking Tamoxifen, anxiety builds up.

TonLee

I don't have anxiety GF, but I am meaner, there is no doubt about that....I think they may be two faces of the same coin.

wenweb

TonLee/GF I hear where you are both coming from.  I am not exactly sure where the anxiety comes in, but as far as PMSing and being meaner...IMHO...it's the state that we would/could end up in by the time we reach an older age.  This, mearly by the loss of estrogen (which is what Tamoxifen and AI's do), and the fact that our testerone takes on a more dominant role.  

TonLee

WenWeb,

That explains why the older women in my family take no prisoners.  Ugh!  I'm turning into my grandma!  (Who threw a pork chop at me once for saying something stupid.)  buwhahaha.

wenweb

I may be wrong, but it just makes sense to me like 2+2=4.  

GirlFriday

Double Ugh...it's taken me years to put down my sword, I have a bit of a warrior princess nature.  It's not that I don't have patience, it's that I constantly want to tell most people around me..."Shut Up, I really don't care about your petty BS."  I just struggle with the day to day drama of cubicle land at work.  Luckily, it's a new job for me, so I'm able to stay out of it!

TonLee

GF,

I know it's not funny...but it is kinda funny....my youngest son asked me the other morning if I had my "mean on."  hahah.

So..last night I couldn't stop scratching!  At one point I turned on the light and checked the sheets for fleas...they kept me up all night, crawling and jumping all over the place.

Except, er, my husband coninued to sleep undisturbed.  Dang bugs!  Why were they just going after me?  And WHO LET BUGS IN THE HOUSE?

I checked my skin, the sheets, under the pillow, under the bed, I checked everywhere...(I felt like a Dr Suess book!)...needless to say my husband woke up and told me I was missing a few marbles.

Turns out he was kinda right.  I forgot my Tamoxifen last night (usually take at supper) and by 2am my skin was literally crawling...I couldn't sleep and my muscles ached, finally I gave up (at the time didn't know I'd forgotten it) and got up...spent the last few hours of the night listening to angst music...like this...

http://www.youtube.com/watch?v=8bGp7LCRTlM

hahaha

..I WISH I was kidding....

This morning when I went for my vitamins, I saw the missed dose.  Took it.  And within maybe an hour the itching stopped and thankfully the music died....

Well actually I still like the music, but it does have a different bent in the shock of daylight!!  lol