Faslodex Girls

lulubee

Well, Susan, that is interesting.  It's good to have your perspective from taking it for so many months.  

I have been thinking about your comment about feeling fatigued and "less present" around day 25. Good grief, I know that feeling!  There are days when I have to force myself to listen to people because I am just Somewhere Else.  

But your observance of predictable patterns is what interests me most.  I have only had four rounds, but I have noticed that there's a day that first week -- like maybe day 3? -- when I feel blue and sad.  I had some mouth sores this month that cropped up a week after the shots -- the first mouth sores I've had in many years. I'm on day 16 today, and even though I have felt pretty good all week, today I have been worn out and a lot more on edge.

I'm going to start jotting down that sort of stuff and see if there's any predictable pattern... and probably as soon as I figure this out, my onc will change my treatment regimen! 

susan_02143

lulubee,

I am all about patterns. I thrive on them. In fact, people pay me to see them, so as you can imagine, I would highly recommend keeping a journal. There are some practical reasons. For example, when I was doing chemo, I was able to map out when to have a susan-sitter was needed, and which days I should make sure I had no appointments. Conversely, I also knew when I would have good days and made sure to see people.

And so out of habit, I tracked this drug too. Of course, I got bored of tracking nothing, and stopped for about a year. But it became clear that it was time to restart.

I hope tomorrow is a day with more energy.

*susan* 

Aerial

Thanks for sharing all your experiences.  I have my 5th Faslodex/Zometa treatment on the 22nd of this month.  I've had bouts of diahrea for a few days after the treatments.  I've learned to stick to a starchy diet for those few days and I've been fine.

Susan--thanks for the idea about journaling symptoms and looking for patterns.  I'm having trouble with some leg (thighs mostly) and mild back pain.  It seems to just come and go for no good reason. I think I need to document the times and kinds of pain to see if it's as random as I assume.  

 I see a pain management doctor (plus, a Spine Specialist) and it's been hard for me to describe exactly what's going on, pain-wise.  Maybe, the journal will help!

Naniam

Susan, thanks for posting what you have noticed.   Mercy, Monday will be my 4th injection, so far away from your 22 but for the last 2 days my fatigue has been worse and today I have noticed that today  I just don't feel "clear" mentally.  Don't know how else to describe it.  I even wondered earlier if I should be driving today !

I have noticed that about a week to a week and a half before each treatment hot flashes hit big time and I also have some nausea within that time period.  I've had to have potassium in the past when I have felt this tired - I'm hoping all is well tomorrow and perhaps this is related to treatment time. 

Interesting observations - thanks again for sharing.  I'm terrible at keeping a journal.   

  

Aerial

Nan--I confess that I, too am horrible at keeping a journal.  I start out with good intentions but, get easily distracted.  It seems like such a "chore."

I had my Faslodex/Zometa treatment this morning, ate my usual startchy lunch and then had to take a three hour nap because I was just so exhausted. 

I get a steroid that helps off set my side effects...it's called Decadron and it really helps.

I'll stay home from work tomorrow to finish recovering from the extreme tiredness.  Still, I've been proclaimed "stable" so, my onco will keep me on these meds.  Yaay--Stable!

PJB

Yea, stable!

susan_02143

Paula,

Is that an announcement or a response?

*susan* 

PJB

A response, unfortunately. Looks like progression for me, altho that's the onc's look at the scan not yet the radiologist (I know, grasping at straws). Tossed in Arimidex for now, as we try to get Afinitor. And he told me to look at MDA and other Texas cancer centers again for more opinions, since my chemo option left is to go back  to one that worked but caused really bad pleural effusions (Taxotere). 

So while I'm still technically a Faslodex girl, maybe not for long.I've never had great luck with hormonals. 

susan_02143

Paula,

D*MN! I was hoping that you had gotten a new phone call... or new scans... or a sign. So, back to hoping that the two hormonals together are the magic bullet.

Disappointed.

*susan* 

PJB

Thanks, Susan. Me, too.... Damn, we all go through so much. This is one of my "not fair" moments. Your support really does help.

Anonymous

PJB, I'm sorry to hear about your "alleged" progression.  I hate this freaking disease!  It seems we have no control over our bodies.  I hate cancer, PERIOD!

Ad far as infections...Xgeva can cause them.  I've heard this on commercials.  I'm really not sure if it causes an infection or can make an infection worse.  I need to look at their website to find out.

So, I can use these meds as an excuse for being TIREDER?  Because I truly think I am.  And I absolutely hate it when family comes to visit.  I need to clean and then by the time they get here I'm exhausted within a couple of days.  I have two grandchildren....well, you get what I'm saying. 

I'll see the onc Tues. and also have my CT and bone scans.  I will also find out the result/s of them.  I'm praying for stable!  It will be a very long day...starting at 8:30 AM and probably not getting out of there until around 6 PM if I'm lucky!

Naniam, I know exactly what you mean about...should I be driving?  My DH does the driving to Duke.  I do not have the confidence anymore to drive through the traffic there. 

Journal?  What's a journal?  I must have ADHD because there's no way I could keep a journal. 

Naniam

Paula, I hated to read that all was not good on the Faslodex but am hoping that adding another drug is just the combination needed.

I had my original scans when diagnosed - that was Oct/Nov.  They didn't show anything in my hip - well by Feb. PET showed it was there and I had radiation.  Now I'm having pain in the right upper arm.  Original scans did show a problem there.  Regular xray on Monday revealed a "density" so am now scheduled for MRI next Thursday.   I ask why on the MRI and not just radiation for pain control and was told we need to see how involved the bone and if it would need to be stabilized prior to radiation.  

I just took my 4th monthly tx plus my loading dose so I keep going to myself - is this really helping my bone mets???  Since the PET was in Feb. my next scan won't be until end of May/ June as I will have had the full 6 months.  My oncologist said maybe "tumor flares" but as I told him materials I have read said those happen for the first 6-8 weeks  He said that was true but sometimes they do see it in a few women beyond that. 

I haven't even said anything to my family but now my other hip is giving me problems when I try to get up and I don't think this is all arthritis or tumor flares - I'm really having concerns with the Faslodex but I'm sure we all do when we have these pains.  Not even 6 months out from diagnosis, I am still "Nervous Nellie".  Does how far we are out in our treatment make any of these pains less worrisome? 

Shirley, my scan is late Thurs. afternoon and then I am driving on to Richmond for GD's birthday.  My daughter ask me if I still thought I could drive - they offered to fly us up but  just wasn't ready to give into that yet.  My DH has his eye laser surgery early Monday morning.  I pray I can do this trip ok. 

PJB

Tiredness, pains... We can all remember when they were just niggling problems. Now they're BIG problems and worries and frustrations. Ugh. We all need a fantastic break!

Aerial

AMEN, to that!!

PJB, I'm trusting that your new med combo will result in a stable thumbs up!

Shirely, I agree with your--"I hate this freaking disease!"  It's so evil, feels like it's playing games with our bodies....grrrr.  I'm praying you get the stable results from your scan, too!

Nan-- I'm still a Nervous Nellie, myself.  It's impossible to be otherwise after the kind of diagnosis we've all had.

Hugs and Prayers, Aerial

lulubee

Hey gals... labs tomorrow morning, injections Friday morning... this is round #5.  Next up: scans in April to see if the juice is working.  

Tumor markers were up 11 points four weeks ago so I'm trying not to think about it too much.  (Riiiight.) 

However, my bone pain has been noticeably better this month -- I've only taken about three hydrocodones all month. Could this be a good sign?  I just don't know.

Anne45

lulubee it sure sounds like less pain is a good sign.  Sending you good vibes for your labs.

PJB

You heard it here first. STABLE! This is my second scan on Faslodex (Started it last day of Aug 11). My TMs have gone from 42 to 435. Last time they were down to 410 or so. But still..... Onc did scan. Results were delayed (don't ask me, they usually have radiologists read it in a day or two). He said it looked like progression to him. Added Arimidex to the Faslodex last week. Started hitting up insurance company for Afinitor..... FINALLY, today, radiologist report comes in still STABLE! Will I stay on the Arimidex, too? Dunno, but I'm so happy.

So, if your TMs are going up and Faslodex seems to be taking a long time to do its thing, cross your fingers and hope for the best..... Thank you to ALL of you who have patiently waited this out with me and given me such support. It might not last long, but it's here now,

 Paula 

scuttlers

Oh Paula, what wonderful news!

Anne45

Paula so very happy for you!!!  YAY!  YAY! YAY!  Nice way to start the weekend!

susan_02143

Paula,

SHUT UP!!!! This is FABULOUS! How are we celebrating tonight?

I am just so pleased for you.

*susan* 

PJB

Dark-chocolate covered pecans..... too many of them - I'll probably be up all night. I'm not so good with the wine anymore (rats) so one must do what one can!  

susan_02143

Okay.... let's have a deal. I will toast you tonight with a glass of red wine and you can eat a few pecans for me! [I do love a spiced pecan.]

*susan* 

PJB

It's a deal, Susan

lulubee

YAY, PAULA!!!  SO happy for you!  I bet you're smiling tonight!

lulubee

Well, I have some good news, too!  My tumor markers did not climb this month!

In the four weeks between my 3rd dose in January and my 4th dose in February, they rose from 36 to 47.7. Today, four weeks later, they are holding at 47 -- a tiny drop, even!  My onc postposed my PET scan till we see what happens with my markers next month, and for once she didn't say one word about Afinitor!

COME ON FASLODEX!  Do your job!

So I got my three shots today (Xgeva, too) and I'm hoping I don't hit the post-shot wall this weekend.

Okay, ladies, good news comes in THREES, so who is up next?   

PJB

Yep, we need another dose of hope and happiness.... Good news, Lulubee.... 

Naniam

Paula, I LOVE this news and I am so happy for you.  Have some "sparkling grape juice" and pretend it is the real.  So glad you get to stay with us.

Lulubee - glad to read your news too.  I'm hoping for some more good news too.  It is good to celebrate with others. 

My 2 1/2 MRI on Friday showed mets in the upper arm and shoulder - which we knew it was in the humeral head - and rotator cuff tear, tendonitis, bursitis and arthritis.  I don't know if the Faslodex has kept the mets stable or not.  I don't rememer having mets in the upper arm, only the humeral head.   - so really won't know until end of May how I am really doing on Faslodex.  I'm thinking stable but we shall see. 

PJB

Nan, let's think stable until they tell us differently.  

lulubee

Sending you vibes, Nan:

 ::stable stable stable::

holdontohope

Paula, wonderful news!  What a relief this must be for you.  Enjoy the pecans!