Hormonal Treatment for Stage IV

KiwiCatMom

Great to see you back, Chrissy!  Sorry to hear you've been ill.  Love the photo - really great!  And I am pleased to announce that (drum roll) we have hot water!  Whoo hoo!  Just in time for me to go see the MO tomorrow and do some marketing appointments with one of our directors.  

Hugs to all,
Terre

tryn2staycalm

Very pretty and yes calming Chrissy

Woodylb

Kiwi, lollllll niiice your hard ware specialist and experienced too!!! Hehehe cute. Sometimes when i read back what i wrote i keep wondering if it is me )))  

Woodylb

Chrissy, 

Beautiful picture very serene and soothing , i am glad you are enjoying it

dunesleeper

I just joined the Stage IV club and took my first Arimidex pill a couple hours ago. So, hi.

exbrnxgrl

dunesleeper,

Sorry that you're joining us. I was on Arimidex for 2 1/2 years and then switched to Femara . I have been NED for almost 3 years and only switched AI's because my joint pain got worse in the long run (yes, the opposite of most people). I noticed that your dx line includes the word failed, with respect to your previous course of action. I hope you're not too hard on yourself about that. You did what you thought was best at the time and you can never go back. A nutritionally sound diet is great, sadly bc has no respect for that. The stage IV threads are a wonderful place for support, filled with some incredible women. You'll find lots of what you need to help you cope, here.

Caryn

reader123

Hi everyone.  I usually just start new threads, but decided to post to this one.  I just switched a few weeks ago from Tamoxifen to Arimidex.  I'm not totally through menopause yet, but I had some progresssion on Tamoxifen and based upon some recent studies, because I do get an injection of Lupron every 4 weeks, and because total menopause is pretty close,  my MO seemed to think we would try Arimidex.  It was either this or chemo again to deal with the small progressions showing up on my lumbar vertabrae.  For over two years - ever since my mastectomy - I had horrible hot flashes.  They would come and go and some days when I was counting them, I would have over 30 in a day and wake up soaking wet a couple of times at night.  In fact, a few months ago I splurged and bought a cool gel pillow insert.  It was great, and then for no reason, my hot flashes dried up!  They stopped.  Started Arimidex around 3 weeks ago and still no hot flashes.  It's wonderful.  I may actually be able to wear a sweater this winter! (LOL).  Bad news is the progression pushes right on my sciatic nerve.  I had surgery to my back in February and 10 radiation treatments.  Two months with very little pain, and then it returned in June.  A week in the hospital for pain management.  Since then I am doped up on narcotics.  I would trade the pain for hot flashes in an instant.  Don't like feeling like a zombie most of the time.  I am hoping that the Arimidex will stop and shrink the mets on my spine so I can eventually take less pain meds.   Other than that I would be doing great.  I do like this thread  - but fall behind on keeping up with it.  I will try to do better.  Great posts which are really helpful.

car2tenn

Dear Reader123,

     All I can address is the Arimidex and radiation....I have been on Arimidex since diagnosis of stage 4 right off the bat.  The medication is super for me; however; I had bad mets to T-6.  I went to Shands at U of Florida and had radiation per Vero protocol.  All in all, wonderful.   feel great and am so grateful to the Vero radiation and Arimidex. Without either, my life would not be as rosy as it is now. Carolyn from Music City

dunesleeper

Caryn, thanks. I swore to accept the results of my choice of treatment, good or bad. I just want people to know it did not work for me to prevent the return of my cancer. I had hoped to be evidence of the opposite, but I think it is important that people know what results I had. My experiment failed. Now I move on. Now I follow doctor's orders. She even gave me a hug. She was obviously never too happy about my decision of 2 years ago. 

I woke up at 4 am today. Is that the way Arimidex works with its sometimes side effect of sleep disruption?

chrissyb

Hi dunesleeper and welcome.  I started my stage IV treatment with Arimidex  and sleep disruption can definitely be a SE as it is with all the AIs.  I was only on it for fifteen months before I had a small progression and a change to Femara which has had me at NED for a couple of years.

We all have different reactions on these meds and the 'sleep disruptions' can manifest themselves differently for all of us........mine seemed to be I could sleep only for about four hours no matter what time I went to bed.  Sure hope your 4.00AM wake up is not going to be your manifestation.

Love n hugs.    Chrissy

Heidihill

Dunesleeper, I hope Arimidex gets you to NED. I am starting it also as soon as I get my prescription filled. I had some issues with my eyes (detached vitreous gel with hemmorhaging) so am switching from Tamoxifen. The doctor also gave me a bottle of melatonin to help with sleep. I told him I hadn't slept through the night in 7 years, mostly due to hot flashes. Will update here if it works for me. I have heard it works for others.

Woodylb

reader123,

Anti hormonal medicine takes time to work at least three month and to show full effect. So there is no telling if you will get hot flashes or not. I was already menopaused at my first dx but still on femara i got hot flashes again and sweats, joint pain, bone pain etc... Hopefully, Arimidex will work on your mets and you will get better so you won't need your pain meds anymore. Wishing you a good response.

exbrnxgrl

I had taken melatonin on and off for years (dating back to my Pan Am days). I now take it every night and sleep very well. It's worth a try.

Caryn

Valerie5746

Thats funny, Chrissy!  had to check where u were when i read "brave the cold"! I thought you were having intense side effects! Well, went to onc yesterday and on femara/faslosdex/zometa My tumor markers dropped 500 points in three months! So happy about that BUT I always smell mushrooms for a while after faslodex shots. So weird.

I meditate daily which is hugely helpful for anxiety. There is a good "app for that" that guides you called "simply being"...I think its 99 cents. I also listen to Eckhart Tolle and Pema Chodron you can buy on itunes. It helps to keep me "in the moment".  

The only other thing that I know can keep me isolated and down is having the false belief that I'm the only human thats going to die. Every body is and I am not alone. But of course, you guys know about this stuff the best.....we are not alone!

Hugs, Valerie

GG27

Caryn,  How much melatonin do you take each night?  I tried it when I was traveling for rads & it didn't seem to work for me, but I'm getting to the point of trying sleeping pills, but I would try melatonin again first.  Thx, Dee

dunesleeper

Um, when you say it takes 3 months to work, does that mean my tumors will keep growing all that time? These are painful. Well, I guess they are not really tumors. They are lymph nodes bloated with something ugly. Big ole hard hot red (by the end of the day) things.

chrissyb

Valerie, yes I'm from the land down under and we are in the dying stages of winter.........lol........roll on Spring!  I must say, after that Arctic burst the other week, the weather has been rather nice, still chilly but the sun has suddenly begun to feel warm.  Yipee!!!

I have used Melatonin for years off and on and find 3mg very effective at getting me to sleep and keeping me there for quite a few hours.........I also recommended it to many with good results for them.

Dunesleeper, don't worry, the Arimidex will begin to start doing its job straight away but major results don't usually show up on scans for about three months.  It is slower to infiltrate the body than normal chemo but it is very effective at attacking the cancer.

Love n hugs all!    Chrissy

exbrnxgrl

GG27,

I take between 5 and 15 mg a night. 10 mg. seems to be my "sweet spot" but I play around with it. I am usually sound asleep within 20 minutes. I will add that I teach first grade and that alone has me ready for bed by 9:00 pm!

Caryn

GG27

Chrissy & Caryn,  thanks for your take on melatonin.  I was taking 3 mg & found it wasn't doing anything.  So I will take Caryn's advice & maybe try a bit more.  I am getting so tired (pun intended) of it taking an hour or more for me to get to sleep. I try to read until my eyes snap shut & then I lie awake forever trying to get to sleep.  GG

dunesleeper

Thanks Chrissy! Do your thing Arimidex!

KiwiCatMom

GG - I'm the same.  And then I sleep at 2 to 3 hours at a time, wake up, then toss around for an hour, then sleep, etc.  Can you say, "chronically tired?"  So I'll give the melatonin a try.  I had tried it before with no effect, but will give it a go with a bigger dose.

Chrissy - glad it's getting warmer for you!  We have actually had a glorious winter, which = very little ice cold wind and horizontal rain.  However, the past week has been a bit nasty.  I've been lucky as I've been moving house and working from home and we have this lovely ittle microclimate here.  But they had sleet and gale force southerllies yesterday in Wellington.  I had to work just northeast of Welly today and it poured all day...and I was outside.  And the wind was bitterly cold.  I'm hoping this is the last blast of winter.  My daffodils are lovely, and the magnolias are in full bloom here.   I'm ready to be warm!

Hugs to all,

Terre

dunesleeper

Oh Kiwi. I'm glad you are headed for Spring but OMG you made our approaching winter show up much too clearly in my mind. May I please skip winter this year? LOL

KiwiCatMom

Dunesleeper - we did kind of skip winter this year.  I am NOT complaining about that!  I had said in April that it was ok if we skipped winter, and I guess the universe listened. (No, I'm actually not that egotistical but it sounds great in theory.)  I think we had one of the warmest Julys on record; just a few crap weather days overall.  So it's been quite pleasant.  We had no summer to speak of; rainy and cold, not much sun, not many very warm days, so at least we've not had much winter - that makes up for it a bit.

I grew up in South Dakota and I miss the Black Hills sometimes, but I do not miss winter.  Where we live now has mountains east of town which remind me of the Black Hills, at least from a distance.  However, we have the added bonus of almost no snow and a view of the ocean to the west.   We just moved house and have dairy cows next door; like almost in the front yard.  Their babies are at the bottom of the hill and are so cute.  And lots of baby lambs everywhere.  And the flowers are starting to bloom; the daffodils are lovely as are the magnolias and plum trees.  So quite nice overall!

Here's hoping you skip winter this year too, Dunesleeper!

dunesleeper

Quite nice overall indeed, Kiwi! I hear we are going to get a cold winter due to Arctic air in the jetstream. Supposedly it is why we had such a mild summer. I just hope we don't get a lot of snow. That will be hard to manage now. I'm already looking forward to next year's daffodils! You enjoy yours.

car2tenn

Oh Caryn,

    I am so thrilled you can take melatonin...It gives me vivid and sometimes frightening nightmares.  However, it is a wonderful supplement to take for anyone going over the ocean in a jet- it whips that jet lag big time. best to all Carolyn from Music City

exbrnxgrl

My older dd had weird and frightening dreams when she tried melatonin, too. It's not entirely uncommon, I understand. Warm milk?

Caryn

Heidihill

Car2tenn, you can try adjusting the dosage by breaking the pill in half or getting a liquid form (my onc gave me the latter). I have also had a bad reaction to Melatonin in the past but it seems to be ok now with just the equivalent of 1 mg. 

dunesleeper

I take a time-release formula by LifeExtension. It was recommended by my Naturopath. Of course, it is the same naturopath who recommended other supplements I have been taking to prevent a recurrence. Anyway, I think it does help me, but I also take prescription meds for sleep. Hell. I take a whole handful of pills for sleep. Haven't slept without meds since at least 2000.

Woodylb

Dunesleeper, i see you are taking Aromasin are you having any water retention problems? Swelling in the feet? Other than pain in the joints... 

dunesleeper

I don't think I am having any swelling other than my arm and hand. Are you having water retention problems?