About-to-Start-Hormones Group

Makratz

Susan - you don't look like a peanut head but I can't figure out whyit's so small. Did you loose weight?  hehehehehe

Springtime

Peanut head, lol, Susan, that cracked me up! Way to start the day.... LOL   Spring!

KAK

Susan, check the pixel dimensions of the original file.  It needs to be aboutr 200 x 200 pixels at a minimum to show up properly.  PM me if you're mystified.  I might be able to help you figure it out.

Springtime

Susan your diet is working well, Share with Linda and me. hehe. Soon you will dissappear!!!

Anonymous

spring-- actually lots of women do fine on tamox with only mild SEs (mainly hot flashes), it's just you hear all the bad stories here. Those who are doing well tend to not post so much--except me (I like to let people know tamox is very doable).

Debs--I took tamox pre and post menopause.  Just finished my 5 years back in Oct., now on Evista

Anne

KAK

LOL, Springtime!  I need that diet!  Your new picture looks great!

Springtime

Yes new short do, full circle, back to the pixie cut of my youth! lol.

AWB, so far, I have the same hot flashes I had in chemo, but not quite a month even for me. I know it's early. my second week I had a discharge, but then it stopped???!!!! smart bodies!

Spring.

unique

Hi galz ~

Thought I was going to the onc today for Femara, but lo and behold that's next Monday. So I sort of had a "day off." Did laundry, sewing, dishes, general clean up. It was kind of restful. I got my list of onco questions re the hormone therapy together last night, and I realize I don't seem to have the medical journal article I remember reading about jaw necrosis with bisphosphonates. I don't actually need it, but I think my friend does - she is going off Femara because her bone density has taken a precipitous dip. She actually posted here in the forums, but didn't get an answer. I think because it's sort of in the wrong place. This Board is actually the place to post!!! Well, maybe not because we're just starting and don't have issues yet ...

Okay, she posted in Help Me Get Thru Treatment ... named it Bone Density. Here it is - do you gals know better where it should be posted?

She sez:

"Has anyone tried the medicine Miacalcin (nasal spray) to improve bone density?

"If not what drugs have you used and what were the side effects? Did it improve your bone density? thanks, Gayla"

unique

P.S.: Ain't there always a PS, LOL!

The article I'm looking for said a new study shows no cases of jaw necrosis with BC gals taking bisphosphonates to increase bone density when the dentist follows a certain protocol.

Thanks if anybody knows! 

Anonymous

              I have been on zometa for probably 7 years....before that I was on Pamidronate (sp?) which I believe is the same as Aredia.  I am a dental hygienist and did not know about osteo necrosis until a patient was in and asked my boss about it, was worried because she was taking zometa.  I asked her where she found this out and told her that I had been doing zometa for at least 4 years at that point in time.  I then asked my oncologist about it and he said I only needed to worry if I was having an extraction or dental surgery done( he did decrease my dosage however, but I still get it every month)  and I do know of another patient who had an extraction and the area never healed because he was on zometa, but had not informed the dentist that he was on it.....he says he still has problems and little fragments of bone are always coming out.  So by all mean, do not have any extractions done.  You have to be off of it for a certain amount of time prior to extractions, 

Springtime

I had a bone density scan done, and found I am slighty osteopenic or whatever it is.

I am not trying to find out if I can get those Zometa infusions - they've been shown in recent studies to prevent bone mets, somehow changes something in the bone so cancer can't attach or something like this...

Spring... 

KAK

Just a bump.

bluegems

KAK,

That's wonderful news!

KAK

Thanks, bluegems! 

You know, I should pass on to everyone what my new med onc said about the tamoxifen genetic testing for determining how well we metabolize the drug.  She said that the test is in fact not that reliable, maybe only about 60% or so, and the part of the metabolic process it actually tests has not been definitively shown to make a significant difference in the effectiveness of tamoxifen over time.  So, she said for me now to bother getting it, and that the fact that I do still have hot flashes, even if they're infrequent, is a more reliable barometer that the tamoxifen is being absorbed.  Interesting.

Makratz

Hi Kathi,

That's exactly what my onc told me too!  I always have hot flashes and night sweats and she said that's the best sign I could have!

 Linda

PS  I am a fan on FB!!!

KAK

Thanks, Linda honey!!

bluegems

First mammo clear! I feel like I've had a new birthday. Guess I'll start my 5 year count from April 7

KAK

Yay!!!

Rachel_BC

hi ladies- I got lost for a while but found my way back, sure glad I did and thank you so much for answers.  My march RADS group is now thinking about hormone therapy as those of us who are eligible are finishing up RADS.  Linda, your weight gain does scare me, because I have been battling my weight for my whole life, and here you are a skinny mini workout kinda gal and it got to you.   Hi JeanneD- familiar face from March RADS...Damn Ace, that's the opposite of what i was hoping of course, I figured you were off dancing somewhere, and of course hoping that the fibroids would shrink instead of grow with pre-menopausal fibroids .  I have big fibroids, not so much that they can be seen though I think.  And where are ya Ace?  How did it go?Kathi- do I get this right that you got clear mammo, that "just a bump" was about your benign-ness and not a message board "bump"?  I am still figuring out this forum.  And thank you for the clarification about the tamox metabolizing test- I have been pestering my onc about it but he hasn't answered, I see hiim on my last day of RADS. Marybe- good info on the Zometa.  No SEs?And thanks to awb and everyone for updates for those of us about to board the same plane and afraid of the flight... I guess its a good sign this thread is quieting down :)Everyone must be tolerating their hormones pretty well   YAY!

NancyD

Rachel, I'm another one who is seeing the scale creep higher with my hormone treatment. I stayed a steady weight all through chemo and radiation, and now, seven months after starting my hormones, I've put on five pounds without a change in diet or activity level. And it's all around my middle. I look like a beach ball with legs, lol.

Of course, not have breasts to balance out the figure might add to the beach ball look, but still, I didn't have this kind of belly before. I hope to find the right way to diet and lose it before I have reconstruction. I don't want to have to diet after recon and lose whatever breasts I get.

unique

Hiya ~

Been AWOL for a week or so, good grief how the time passes. I am in limbo! Trying to stay going in a straight line, but it's hard.

Have THE APPT. with the onc to start on the AI - prolly Femara.

Worried a little about arthritis pain, as I already have a lot of stiffness and sometimes pain. Not so much nowadays, because I'm careful not to lift anything.

Worried a little about night sweats, because I had a lot of trouble during menopause with these - they would wake me up and I couldn't get back to sleep. Eventually went on antidepressant because I had some anxiety/depression, I think related to that. Then it stopped.

I really can't hack life if I don't get enough sleep. It's too bad, I could get more done if I didn't need to sleep 8-9 hours at night LOL!

But I'm thinking I need to be on here even if it's just to talk about emotional matters. One really gets used to the whole treatment train and then what do you do with yourself afterwards? I am picking up some work but working feels strange ...

unique

Just made my post-surgery appt. They were a little brusque - really wanted to see me in April, but don't want to do scans yet, so why am I going in? Well, anyway, I made an appt. for two weeks ...

NancyD

Sleep what's that?  I haven't had more then 4 hours sleep at a time in years. After four (or less) hours I wake every hour for about 30 minutes, so the last 3 hours I'm in bed, I only get about 1-1/2 hours sleep. and sometimes that 4 hours goes down to two. If I'm disturbed, I don't go fully back to sleep and it's a toss and turn night.

I've only had full night of sleep in the last year. And can't remember what it's like to conk out and not wake up until the morning light wakes me. 

KAK

Rachel, nice to see you.  My bump was just to bring the thread up to the current date, that's all!!  LOL  I don't understand all the abbreviations and stuff yet either!

Annie, limbo just rots, doesn't it?  Are you still taking an antidepressant?   a lot of them can help mitigate the side effects of the hormone therapy.  That's worked well for me so far, I must say.

unique

Hi Kathy and all!

I put a post on the Arimidex group, about how I got samples on Monday and still haven't taken a single pill! It's like I used up all my courage on the mast, the chemo, the rads ...

Anyhoo, how are you all affording it? Over here with my insurance it seems it will be costing about $1,600 a year or more, because they pay only half, the other half is my copay (boo hiss). A bit of a let down after they paid the majority of my medical bills - the main insurance isn't too bad.

I'm thinking to try to avoid going into my IRA to pay for it, or by turning the heat off, getting rid of the cable TV and so forth. But because I do have some insurance, AstraZeneca doesn't have any help for me.

My onc did give me 2 months of samples, hopefully they'll give me more than that. My Mom goes to that practice and gets samples after she falls into the donut hole of Part D.

Other thing - I need encouragement to start, because I'm scared I'll feel like I did in menopause, that's when I started my antidepressant, but it was hell - I kept waking up in the middle of the night feeling like an oven, not sweaty but just hot hot hot and then I couldn't get back to sleep. I started feeling like I was going crazy and I hurt all over. Back hurt and had horrible headaches every other week that would have me throwing up. I definitely could not cope if it was like it was then.

The anti-depressant really helped, and the aches and pains went away once my periods stopped, and if I avoid chocolate I can mostly keep the headaches away. Sometimes I get sinus pressure, or I'm constipated, and I lose a day, but lately I just throw yoga, sudafed, tylenol and benadryl at it and it goes away.

Hopefully the antidepressant will keep me afloat ...

unique

BTW, Nancy, I'm so sorry about your sleep habits, not being able to.

My trouble was not that I felt tired, it was that I felt crazy. When I woke up I'd have this horrible feeling something was wrong.

While my husband was ill I got only about 3 hours a night, because after dealing with his hospital stuff and doctor stuff I had to try and squeeze some work hours in. I staggered around like a zombie, but I kept it together emotionally.

Rachel_BC

Hey Ladies  As we March RADS are finishing up lots of questions about hormone therapy, and I have been referencing your thread a lot, so maybe you'll see some of us here?  We couldn't figure out if we should just keep yakking on our thread, or start a new one.  

Thank you so much.

More anon 

Anonymous

I already posted about zometa the other day which did keep my bone mets stable for almost 10 years.....it wasn't until I expressed concern about the osteonecrosis and he lowed my dosage that we found new mets to my sternum sometime later and now I have new places in my lumber region.....of course this may have been something just waiting to happen since I was Stage lV and I knew things would not stay stable forever.  I was on tamoxfen for over three years, but on me they used it as treatment rather than preventative and I did gain weight.  I was very concerned about the weight gain, gained at least 2 lbs per month in spite of trying to diet and exercise the scale just kept going out.  I have gone on crazy diets all my life even when I didn't need to, but this time I needed to.......think I got to my alltime high which wasn't obesity or anything, but it was so frustrating trying to lose weight and getting no results.  However, when my onco told me the tamoxifen was no longer working and we had to try something else, I burst into tears when I went to pick up my new  Rx, arimidex and could barely get the words out to tell the pharmasist that my tamoxifen was no longer working.  It sort of put things in perspective which other people had tried to do, but oh no, I didn't appreciate the fact I was stable, all I could see were those numbers on the scale and buying size 12 and 14 clothes.....I am 5'2' and always wore an 8 or a 6.I was not on arimidex long when my onco said he wanted to switch me to aromasin because he heard it got faster and more dramatic results.....it was aromasin hat took my tumor markers CA 27/29 all the way down to 29. They were up in the 700's at one point and I realize a lot of oncos don't even do the test as it isn't always reliable, but my onco did it on me at least every other month.....my numbers went up while I was on tamox, But Tamox also caused my tumors to shrink 50% the first three months I was on it.....BUT it was the weight gain I griped about and as I said didn't appreciate the good effects until it stopped working.  On the arimidex and aromasin I ddi not gain weight and was able to lose weight and got back to  normal.  I have a freind who took tamoxifen as preventative after her mastectomy, in fact she's still on it and it's now been 10 yrs althugh her doctor said she only need it for 5.....and she didn't gain weight or have the hot flashes that I had or the bone aches and pains.  We are all different, but we all worry about getting fat and having no eye lashes and things like that because we are are women.  Woman, Vanity is thy name....how true that is.  I now still get faslodex which is also a hormonal drug, along with my chemo.  I am also gaining weight again, but this time it isn't such a big deal since I know if this chemo doesn't work we are probably going to have to move to something that will really have bad side effects.  The fact that I am now 59 years old and am married may make me no longer as concerned about weight gain, but you know it does bother me and I make a comment every time I get weighed before my treatment ( once a week), say oh great it's up again, or durn another pound.  But I will never forget how upset I was when I found out I was going off the tamoxifen.  I am now at the point where I just want to stay alive.  The hormonal treatments were so much easier than the chemo.  You hang in there and bitch all you want cuz it's normal, but do what your onco tells you to do and stay with the hormonal treatments if they are working.  If it was happening again adn it sort of is now cuz I am once again bitching about gaining weight.....now it is probably the steroids as much as the chemo and the fact I keep stuffing food in even though I can't taste and when I do, it's a bad taste......I am hungry so I eat and also I keep  hoping  I will stumble across some food that I can taste that will satisfy my craving for something good.  So I do know where you are coming from, but be sure you look for good effects along with the good ones outweigh the bad.  I really love this message board because here we are able to vent our gripes and someone actually can relate and knows where we are coming from and what we are going through.  Trust me, the weight gain is temporary, but in my opinion a legitimate gripe. 

   Bellamine helped the hot flashes and try benedryl for sleeping.  I used to get ambien and that really helped me sleep, but now my onco is on an anti-sleep aid kick so I use benadryl.   I doubt if I any longer have a drop of estrogen in my body so I don't get hot flashes, but I think if you have estrogen positive receptors, you should definitely try the hormonal route....as my onco explained it, you can get results with lesser side effects than chemo.  Sorry I babbled so long, but I kept remembering stuff. 

traveler56

I have been away from these boards for a while as I have been dealing with my 88 year old mom who broke her hip in Feb and is now in a nursing home, still getting rehab, but has had quite a cognitive decline after the surgery.  I visit all the time just to keep her going, she is a very funny lady and keeps everyone there on their toes but it is still a stressful situation for us.  I feel so bad for her losing her mobility and all, boy, ladies, all I can say is do our best to keep strong bones.  and since I have worked social services for many years I get to do th paperwork - my uber smart and multi degreed brothers and sisters are finally appreciating my 2 year degree!

Anyway to report on tamox, obviously insomnia is a se, here it is 4 am, and some hot flashes but all around pretty minor.  I just had the metabolizer test but results not back yet, although my onc. says since I get hot flashes etc I am probably good. 

  I am stressing now as my next mammo is Tuesday and I dont' want to think about going through this again, even though my treatment was pretty easy, and I read of so many others who have had harder journeys.  so wish me luck! 

NancyD

Traveler, I can so-o relate to the stress from a declining parent. My 90 yo dad has been in and out of the hopsital and rehab nursing homes for the past two months. It all started in March with an attack of diverticulitis, which became c-dif. He started losing it mentally as well as physically. The shock to the body has had a profound effect on the mind.

He's now is his second rehab/nursing home after being home then in the hospital for the third time. They found the c-dif had not cleared up and he was stressing his heart with the infection. We nearly lost him. He's been so weak, he hasn't been able to walk for weeks. We're hoping to get him to the point that he can help an aide get him up out of bed and use a walker.

Anyway, it makes my moans about my AI se's seem so inconsequential.

Keep your Mom company as much as you can. We've found if a family member is around, the staff is more responsive when help is needed.