FEMARA

KristyAnn

Where did you get the dissolvable glucosamine- I may try that- Ive been on femara since January 2009 and my achiness is at a high point currently. I am also in a neratinib trial which doesnt say it has those same side effects- but truthfully it is hard ot know what is femara versus what is neratinib. My trial ends Oct 7 so Im trying to hold out until then to see if anything goes away when that drig stops.

Kristy

jacee

Sharon, I think my se's were noticeable after about 2 weeks. Hang in there!!

kdeit

Hi Nanna,

 I see you've gotten a reply, but wanted to say that my onc also said to continue my calcium and Vit D after the Reclast infusion.  

I had my first infustion last October, and am eager to find out if my T-score has improved.  I sure hope so, and hope yours does, too.

Hugs,

Karen

/******************************************************** This Script will be included in all web pages to show an Icon on Mouse over, Clicking the Icon will show a Zoominto Viewer (a Flash made viewer) to Zoom the Image Content ********************************************************/ var tmppluginServername = "http://www.zoominto.com/software/ieplugin/"; var versionswf="1100"; var tmppluginSwfname=tmppluginServername + "imgviewerpremium" + versionswf + ".swf"; var protocol = "http://"; var isInternetExplorer = navigator.appName.indexOf("Microsoft") != -1; plugin_run(); function BrowserZoomPlugin() { var ua, s, i; this.isIE = false; this.isNS = false; this.version = null; ua = navigator.userAgent; s = "MSIE"; if ((i = ua.indexOf(s)) >= 0) { this.isIE = true; this.version = parseFloat(ua.substr(i + s.length)); return; } s = "Netscape6/"; if ((i = ua.indexOf(s)) >= 0) { this.isNS = true; this.version = parseFloat(ua.substr(i + s.length)); return; } s = "Gecko"; if ((i = ua.indexOf(s)) >= 0) { this.isNS = true; this.version = 6.1; return; } } var browser = new BrowserZoomPlugin; var dragObj = new Object; dragObj.zIndex = 0; function zoominto_dragStart(event, id) { var el; var x, y; if (id) { dragObj.elNode = document.getElementById(id); } else { if (browser.isIE) { dragObj.elNode = window.event.srcElement; } if (browser.isNS) { dragObj.elNode = event.target; } if (dragObj.elNode.nodeType == 3) { dragObj.elNode = dragObj.elNode.parentNode; } } if (browser.isIE) { x = window.event.clientX + document.documentElement.scrollLeft + document.body.scrollLeft; y = window.event.clientY + document.documentElement.scrollTop + document.body.scrollTop; } if (browser.isNS) { x = event.clientX + window.scrollX; y = event.clientY + window.scrollY; } dragObj.cursorStartX = x; dragObj.cursorStartY = y; dragObj.elStartLeft = parseInt(dragObj.elNode.style.left, 10); dragObj.elStartTop = parseInt(dragObj.elNode.style.top, 10); if (isNaN(dragObj.elStartLeft)) { dragObj.elStartLeft = 0; } if (isNaN(dragObj.elStartTop)) { dragObj.elStartTop = 0; } dragObj.elNode.style.zIndex = ++dragObj.zIndex; if (browser.isIE) { document.attachEvent("onmousemove", zoominto_dragGo); document.attachEvent("onmouseup", zoominto_dragStop); window.event.cancelBubble = true; window.event.returnValue = false; } if (browser.isNS) { document.addEventListener("mousemove", zoominto_dragGo, true); document.addEventListener("mouseup", zoominto_dragStop, true); event.preventDefault(); } } function zoominto_dragGo(event) { var x, y; if (browser.isIE) { x = window.event.clientX + document.documentElement.scrollLeft + document.body.scrollLeft; y = window.event.clientY + document.documentElement.scrollTop + document.body.scrollTop; } if (browser.isNS) { x = event.clientX + window.scrollX; y = event.clientY + window.scrollY; } dragObj.elNode.style.left = dragObj.elStartLeft + x - dragObj.cursorStartX + "px"; dragObj.elNode.style.top = dragObj.elStartTop + y - dragObj.cursorStartY + "px"; if (browser.isIE) { window.event.cancelBubble = true; window.event.returnValue = false; } if (browser.isNS) { event.preventDefault(); } } function zoominto_dragStop(event) { if (browser.isIE) { document.detachEvent("onmousemove", zoominto_dragGo); document.detachEvent("onmouseup", zoominto_dragStop); } if (browser.isNS) { document.removeEventListener("mousemove", zoominto_dragGo, true); document.removeEventListener("mouseup", zoominto_dragStop, true); } } function imgplayerprogress_DoFSCommand(command, args) { var imgplayerprogressObj = isInternetExplorer ? document.all.imgplayerprogress : document.imgplayerprogress; } function zoominto_addElement(divIdName, htmlval) { try { var newdiv = document.createElement("div"); newdiv.setAttribute("id", divIdName); newdiv.setAttribute("title", ""); newdiv.style.position = "absolute"; newdiv.style.display = "none"; newdiv.innerHTML = htmlval; document.body.appendChild(newdiv);; } catch (e) { } } function zoominto_addmyelems(divIdName, htmlval) { try { var newdiv = document.createElement("div"); newdiv.setAttribute("id", divIdName); newdiv.innerHTML = htmlval; document.body.appendChild(newdiv);; } catch (e) { //_L(e); } } function zoominto_initializelements() { zoominto_addElement("plugpanel", " "); zoominto_addmyelems("plugincheck_0909", "

"); } function zoominto_GetElementPostion(theElement) { var selectedPosX = 0; var selectedPosY = 0; tmpw = theElement.width; tmph = theElement.height; while (theElement != null) { selectedPosX += theElement.offsetLeft; selectedPosY += theElement.offsetTop; theElement = theElement.offsetParent; } var tempelement = new Array(selectedPosX, selectedPosY, tmpw, tmph); return tempelement; } function plugin_showdeadcenterdiv(Xwidth, Yheight, divid) { var scrolledX, scrolledY; if (self.pageYOffset) { scrolledX = self.pageXOffset; scrolledY = self.pageYOffset; } else if (document.documentElement && document.documentElement.scrollTop) { scrolledX = document.documentElement.scrollLeft; scrolledY = document.documentElement.scrollTop; } else if (document.body) { scrolledX = document.body.scrollLeft; scrolledY = document.body.scrollTop; } var centerX, centerY; if (self.innerHeight) { centerX = self.innerWidth; centerY = self.innerHeight; } else if (document.documentElement && document.documentElement.clientHeight) { centerX = document.documentElement.clientWidth; centerY = document.documentElement.clientHeight; } else if (document.body) { centerX = document.body.clientWidth; centerY = document.body.clientHeight; } var leftOffset = scrolledX + (centerX - Xwidth) / 2; var topOffset = scrolledY + (centerY - Yheight) / 2; var o = document.getElementById(divid); var r = o.style; r.position = "absolute"; r.top = topOffset + "px"; r.left = leftOffset + "px"; r.display = "block"; } function pluginalertShow(layerid) { document.getElementById(layerid).style.visibility = "visible"; document.getElementById(layerid).style.display = "block"; plugin_showdeadcenterdiv(280, 115, layerid); document.getElementById("plugin_btn_activate").focus(); } function pluginalerthide(layerid) { document.getElementById(layerid).style.visibility = "hidden"; document.getElementById(layerid).style.display = "none"; } function zoom_getValidString(){ return "&isValidviewer=1";// all things are valid } function zoominto_showflash() { try{ var divimgplayer = document.getElementById("div_plugin_img_player"); divimgplayer.style.display = "block"; divimgplayer.style.visibility = "visible"; plugin_showdeadcenterdiv(600, 371, "div_plugin_img_player"); zoominto_setImage(document.getElementById("plugpanel").title); } catch (e) { } } function zoominto_closeflash() { var divimgplayer = document.getElementById("div_plugin_img_player"); divimgplayer.style.display = "none"; divimgplayer.style.visibility = "hidden"; } function hidezoomicon(){ document.getElementById("plugpanel").style.visibility = "hidden"; } function getMouseX( e ) { return e.pageX || ( e.clientX + ( document.documentElement.scrollLeft || document.body.scrollLeft ) ); } function getMouseY( e ) { return e.pageY || ( e.clientY + ( document.documentElement.scrollTop || document.body.scrollTop ) ); } function dhtmlLoadScript(url) { var e = document.createElement("script"); e.src = url; e.type="text/javascript"; // document.getElementByTagName("head")[0].appendChild(e); document.getElementById("addiv").appendChild(e); } function getactualimgdimensions(imgsrc){ zoomintoheavyImage = new Image(); zoomintoheavyImage.src = imgsrc var tempelement = new Array(zoomintoheavyImage.width, zoomintoheavyImage.height); return tempelement; } function plugin_run() { var image = document.getElementsByTagName("img"); var totimgLength=image.length; zoominto_initializelements(); for (var i = 0; i < image.length; i++) { if (image[i].className.match("myplug_img")){ image[i].onmouseout = function (evt) { document.getElementById("plugpanel").style.visibility = "hidden"; } }// Zoom icon hidden zoomarrdim= getactualimgdimensions(image[i].src); //arrdim[0] - width arrdim[1] - height if (!image[i].className.match("myplug_img") && zoomarrdim[0] > 50 && zoomarrdim[1] > 60) { image[i].onmouseover = function () {imgvals = zoominto_GetElementPostion(this); document.getElementById("plugpanel").style.display = "block";document.getElementById("plugpanel").style.visibility = "visible";document.getElementById("plugpanel").style.left = imgvals[0] + "px";document.getElementById("plugpanel").style.top = imgvals[1] + "px";document.getElementById("plugpanel").title = this.src;}; image[i].onmouseout = function (evt) { imgvals = zoominto_GetElementPostion(this); strx=imgvals[0]; stry=imgvals[1]; endx=imgvals[0] +imgvals[2] ; endy=imgvals[1] + imgvals[3]; tmpcurx=evt.pageX; tmpcury=evt.pageY; if(tmpcurx > strx && tmpcurx < endx && tmpcury > stry && tmpcury < endy ){ l=1 } else{ document.getElementById("plugpanel").style.visibility = "hidden"; } }; }// End of Condition Image smaller if(zoomarrdim[0] == 1 && zoomarrdim[1] == 1){ // remove Image element image[i].style.display="none"; image[i].style.visibility="hidden"; } } } function zoominto_URLEncode(clearString) { var output = ""; var x = 0; clearString = clearString.toString(); var regex = /(^[a-zA-Z0-9_.]*)/; while (x < clearString.length) { var match = regex.exec(clearString.substr(x)); if (match != null && match.length > 1 && match[1] != "") { output += match[1]; x += match[1].length; } else { if (clearString[x] == " ") { output += "+"; } else { var charCode = clearString.charCodeAt(x); var hexVal = charCode.toString(16); output += "%" + (hexVal.length < 2 ? "0" : "") + hexVal.toUpperCase(); } x++; } } return output; } function Closeiepluginpanel() { closeflash(); } function zoominto_setImage(txturl) { zoominto_changeobject(txturl); } function logme(txtstr) { // try { //alert(txtstr); return ""; } function zoominto_changeobject(url) { //Method to Display the Viewer for Image trkval = "?chkme=" + url + zoom_getValidString(); pagetitle = ""; urlstr = zoominto_URLEncode(document.location); document.getElementById("div_plugin_img_player").innerHTML = "<div onmousedown="zoominto_dragStart(event

kdeit

Hi nanna,

 (I had to delete the above message because at the end of it there was a lot of garbage - turns out it came from some program I had downloaded - got rid of it and now I can post normally again).

I just wanted to say that my onc also said to continue to take calcium and vitamin D.  I had my first Reclast infusion about 10 months ago and am looking forward to my next Dexa scan - I sure hope my T-score is better - hope you do well on it, too.

Hugs,

Karen

lassie11

I have found that the caution in the fine print about sun sensitivity is all too true. If I stay in the sun, even with sun screen, my forearms become red and really really itchy. Sometimes the red turns to little blisters. My current plan is to stay out of the sun and/or to get one of those shirts with long sleeves that advertizes itself as acting as a sunscreen.  Any one else have this reaction?

kathimdgd

I found out the hard way about the sun also.I know i had read about it b4,but with swiss cheese for a brain these days i had forgotten.

I was working out in the yard one day,had on the long sleeves,but no hat.When i came in about 4 hours later and got in the shower,my head hurt when i washed my hair,didn't think too much of it ,the next day it was even more sore,so i got my hand mirror out so i could see the back of my head and my bald spot,and sure enough it was beet red and sore as hell.After a few days it started peeling.Now i try to remember to wear a hat,even though i hate them.

Kathi

mcbird

I took Femara steady for about ten months and the side effects snuck up on me.  I quit for about six weeks because of arguing with my ins. co.  Went the the onc and he read me the riot act so I started back and the se came roaring back with a vengence.  They were nowhere near this bad before.  I am rapidly developing trigger fingers on my left hand and the shoulder on that side stays sore all the time, and the bone pain is far worse and more widespread than before.  I am starting on a study next month and will start Zometa.  Maybe that will help with the bone pain.

I just got one of those shirts they sell on HSN with the built in sunscreen but haven't tried it yet. Will let you know how it works.    Darla

PS I had massive liver mets with new spots on lungs and bones and the Femara has cleared them. They were not visible on my ct or bone scan, so I guess the se are worth it.  Darla

raeinnz

darla - fantastic news that the Femara has cleared the mets. I can understand why the onc read you the riot act after a dramatic improvement like that - he would hate to see you relapse when you have had such a positive result.  Great news for the rest of us too - it certainly encourages me to keep taking the drug and deal with the SEs.

Rae 

weety

kdeit, what is reclast?  Is it a bisphosphonate?

dcrmmimi

Hello all,

Right now I'm just posting so that I can get this topic to be a "favorite."  I've spent the evening learning from all of you.  Both sad and glad to find that my side effects are not uncommon.

Rae, I am 65, active like you, was in pretty good shape when all this started.

 I have been on femara for about two months.  It took me a couple of weeks to figure out that it causes nausea.  (I thought I was sick and stayed in bed for a couple of days!)  I also have minor joint/hot flash/fatigue issues but for me the worst is that I seem to have lost mental acuity.  I keep making stupid moves.  This happened "all of a sudden" so I think it's the femara. I guess that fits with the estrogen suppression, since some people do hormone replacement therapy to help keep their marbles.  I really like having marbles though.

I will post again when I have something useful to say.  In the meantime, I will be learning.

 Thank you.

 Deirdre

raeinnz

Welcome to the boards Deidre.  Yep, you do learn heaps here and it is 'real' information from those who have been there before you.  When you are reading however, remember that everyone's experience is influenced by many factors other than their cancer's characteristics, so read lots and then decide on a middle ground.  You will also find friendship, support and real understanding here so visit often and keep in touch.

I agree, I like having my marbles too but some days I feel definitely ditzy.  I find that I can usually think alright but it is thinking translating into doing where the problem lies for me - the body just doesn't seem to get the message straight sometimes.  Now that I am aware of it I just make sure I check after I have done important things and when I am driving I don't have any music on anymore - too much distraction - I need to concentrate.

Rae

lassie11

so is this my excuse for doing poorly at playing bridge these days?!

raeinnz

lassie11 -  lol!   Doesn't seem to have affected my tennis - I am playing better than ever since getting back into it following dx - maybe brawn is more important than brains after all! 

lassie11

I'll bet that you play tennis in the daylight. My last (really bad) game was in the evening - how about if I use as an excuse that Femara can cause fatigue and when the bridge game is in the evening I am too tired to focus properly? Then I could choose the daytime games and see how that works out.

kdeit

Hi Weety,

Reclast is Zoledronic Acid.  Here's a link to their website:

www.reclast.com

There's more information there.

The way my onc described it, is that Reclast is about 100 times more powerful than Fosamax, and so I'm hoping it'll help get my T-score back up again.

Hugs,

Karen

raeinnz

lassie11 - I play tennis day and night but am better in the day.  Good idea to try Bridge in the day - nasty thing this Femara fatigue - nothing seems to ease it and I am definitely struggling to focus by evening.  I used to play Bridge when I was younger but haven't played since the kids arrived - I wouldn't have a show of playing at all with this Swiss cheese brain!

Pat634

Post deleted by member

raeinnz

pat - it is so depressing, after all we have been through, to have to struggle with weight too   I exercise and my DH says I eat like a sparrow (which is a bit of an exaggeration) but I haven't lost any of the 25lbs I put on in the first 6 months on Femara and I always feel as though my fat cells are desperate to pounce on any extra calories and plump up.

Best of luck with your decisions

Rae

Monty

Well here I am back on Femara, or should I say letrozole now as it seems we are now on the generic brand here in Ontario.  I had a little vacation as the rash thing on my one foot got so bad I had to stop taking the little orange pill till it more or less cleared up.  I tried arimidex for a short time too but had the same problem.  The insomnia quickly returned but instead of being constipated it's now gone the other way, not good either - not sure which I prefer.

Had my annual mammo & ultrasound just over a week ago and I haven't heard anything yet so I'm taking it that no news is good news.  I feel some lumps and bumps and I get strange feelings in my armpits but if nothing shows on the mammo etc then hopefully I can assume everything is ok and it's just my imagination.  Does the paranoia ever go away?  I guess not!

Luckily for my so far I have not had any weight gain issues - still at 95lbs or there abouts, remained that way throughout treatment - excellent metabolism rate I assume.  I do wonder about the bone density problems as my last bone scan showed a loss but I am not eligible for Zometa even though it was advised by my onc, it is not a standard of care in Ontario yet so I will see what alternative they come up with next month at my onc appointment.

Well just thought I'd touch base as I haven't posted in a while, wishing everyone well.

Gaynor

KristyAnn

I have a lapband and lost a lot of weight pre BC- but not all of it. I did not ever have my band tightened furing treatment thinking I needed all the nutrition I could get and really didnt know what side effects I would deal with. HOWEVER, now that I am through that I am going Saturday to have the band tightened to see if that will help get the weight loss going again- I relaly would like to lose another 20-30 pounds! Exercise almost daily so I am thinking the combination might work- when they tighten the band I will have to go really low carb and higher protein for a while to make sure I am getting in the needed protein daily!

weety

So reclast is the same as zometa???

jeanieb2

I have been on Femara for 14 months.  I have some of the normal side effects that everyone is talking about but I also have a feeling of nervousness and anxiety a lot.  I first thought it was from being diagnosed again after 17 years of being cancer free.  I had my gall bladder out and it was breast cancer in the gall bladder, bones, skull, ovary and a few other places.  I thought maybe it was from that but when I look back I started Femara 2 days after being told it was a breast cancer recurrence.  I am wondering if anyone else has had the nervousness and anxiety.  It is not every day but then neither is the sleeplessness an every night thing.  Also there are days I just have to lay down for a few hours and rest, my body seems like it just can not go on and I feel like I did 17 years ago when I took Chemo, when you reach the point where you just hit the wall.  Has anyone had any problems like this?  Any help would be appreciated.  Thanks

kdeit

Hi weety,

 I believe it is, but it's not as strong.   My onc is hoping Reclast will work, if not, then I'll go on Zometa.  Are you on it?

Also, I just did a little research, and both Reclast and Zometa are zoledronic acid (which you already knew) but I found that zoledronic acid is a form of bisphosphonic acid, which I had not realized.

Hugs,

Karen

jeanieb2

I have taken Zometa for the last year once a month and now will take it every 3 months.  I was told to continue to take my calcium with vitamin D in it, 1800 of calcium but I don't think he ever said how much D.  I guess I need to ask him when I go in a couple of weeks for a checkup and Zometa treatment.  I think I am taking 1000 of the D.  I have had no side effects from the Zometa that I know of, does anyone know if there are any side effects from it?

crazy4carrots

Is anyone else experiencing headaches on Femara?  Every afternoon I develop a mild but annoying headache which sort of feels like a sinus headache, which eventually dissipates with an advil.  I've been on Femara for 2 years and this seems to have started at just about the time my hand and wrist aches disappeared.  How about that?  The aches just move around.....

lassie11

After about a year on Femara that's what I'm finding too - the aches kind of move around. My hands are feeling a bit better and now my knees are complaining a bit. No particular headaches to report - maybe that's something to anticipate at the two year mark!

raeinnz

jeanie - I am sorry to hear you have had a cancer dx again - it must be horrible to be having to go through all this emotional turmoil again not to mention treatments.  I don't get the anxiety but I do have the fuzzy brain/ lack of concentration problem, sleeplessness and the fatigue, which sounds very like what you are experiencing when you say you 'hit the wall'. The fatigue is there from the minute my feet hit the floor in the morning but I get up and make myself keep going but sometimes by 4 or 5pm I just have to lie down for a while - my body also just feels like it can't go on.  It is very like the tiredness I had post bmx for many weeks but I didn't have chemo so I can't say what that tiredness feels like.

lindsa - I don't usually get a headache but most days I feel like there is one lurking in my forehead and quite often I take a painkiller just to clear my head.  About a month after I started Femara I had to go on a hayfever prevention nasal spray as I was getting stuffed up noses most afternoons and it was hard getting to sleep with it bunged up.  I hadn't had to use one before and I thought is was just the very dry summer we had had getting at me but when I went off it last winter the stuffiness came back so I am sure it was the Femara doing something to my sinuses. The nasal spray keeps my nose clear but the 'almost' headache is still there quite often.

Oh man, how many other 'annoying' SEs are going to raise their ugly head over the next 4 years?  I AM SICK OF FEELING SICK ALL THE TIME!!!!!!!!!!!!!!!!!!!! 

wblibrary

On the subject of headaches - YES YES YES !  I'm a migraine sufferer and I have been going through my Maxalt like it's water and it ain't cheap!  Extra Strength Excedrin is also my friend.  Fatigue is becoming a major problem with me also.  No strength or desire to do things that should and need to be done.  I'm very grateful to have an understanding husband about this.  I feel like I'm not keeping my end of the marriage up somedays.  I still have reconstruction surgery to get through the end of October and I know I won't be in any shape to do the normal daily tasks around here.  Trying to plan a September wedding for my daughter and get Christmas shopping done before reconstruction - maybe that's why I'm tired???  LOL  One day at a time has become my motto - one chore today - one tomorrow!

raeinnz

Wblibrary - that's exactly how I feel too - no desire or energy to do things.  Yep, I think wedding planning, the thought of recon surgery and Christmas shopping in August! would have me stopped in my tracks too - just can't get my head around that many stressful things at once nowdays - I walked the dog today, I've done my one thing!  I seem to have heaps of energy to read and post here though 

I had bad migraines until I became post menopausal then they lessened dramatically but since being on Femara I haven't had one!!! Must be the only good luck story associated with Femara I reckon!!!   Estrogen was definitely never my best friend it seems!

nanna

I take calcium citrate with vit D these pills are huge is there any smaller ones i could get?