Faslodex Girls

Rosevalley

I have a couple of questions I wanted to see if any of you had the same. I have been taking faslodex since May and really been thrilled that it was easy - beats arimidex and aromasine by miles. But a month ago my right hip just hurt through out the whole month. The joint didn't hurt, the flesh hurt. As long as I didn't put pressure on it, move the skin etc. then I was fine. I declined the 2nd shot this month and took just the one on the left hip/ butt. That side never hurts. The onc said to do both shots on the left - I wimped out and just took the one.

Have any of you done 2 shots in one area? How did that go?

If you gave the side that hurt a break and then went back to shots, did it go fine?

My tumor markers have been steadily declining but have slowed down 84 last month, this month 76. The drops used to be big, now they're small - but down. (I started at 768) Has this been the case for others? Or do the tumor markers just fizzle out and stall?

Thanks for sharing info.

susan_02143

Rose,

My nurse and I discussed the one buttock approach, but the powers that be nixed that idea. They thought it would be too much for one buttock to manage. The studies of one shot indicated that the pain was too great for many women to manage.

As to the blood markers, I think that since we look at percentages, not the raw number, you are doing great! From 768 to 76? That is a miracle. After 2 1/2 years, mine just sit where they are and there is no activity on the scans.

Welcome to our thread.... hope you get a long time with the Faslodex.

*susan*

sandilee

For itching, take oral Benedryl one hour before your shot, and then every four hours all day the day of the shot. I used to itch every time, but it has ceased since I do this routine.

 So sorry you lost your nurse, Susan. I'm quite fond of mine, too, so I know how you must feel.

Tish_13

Rosevalley, Tumor markers are a tool only. In your case your cancer can be measured by the makers and any decrease is good. I my case my cancer is not being measured by the rest as my markers were well within the normal range while I was undergoing treatment for my stage 2 cancer in 2008. I am at 32 after being diagnosed with bone mets in May. It is great your numbers are dropping!

Tree3 The joke with my family is who ever takes me to my shots has to rub my butt! The huband of 30 years is a good man, I am very grateful for all the love and support from him and my family. I do understand what you mean of life being much sweeter. Little favors are much brighter and more special. Live indeed is very good.

Take care Ladies

Oh how I wish there was a "like" button to click on like Facebook!

Tish_13

Rosevalley, Tumor markers are a tool only. In your case your cancer can be measured by the markers and any decrease is good. I my case my cancer is not being measured by the test as my markers were well within the normal range while I was undergoing treatment for my stage 2 cancer in 2008. I am at 32 after being diagnosed with bone mets in May. It is great your numbers are dropping!

Tree3 The joke with my family is who ever takes me to my shots has to rub my butt! The huband of 30 years is a good man, I am very grateful for all the love and support from him and my family. I do understand what you mean of life being much sweeter. Little favors are much brighter and more special. Live indeed is very good.

Take care Ladies

Oh how I wish there was a "like" button to click on like Facebook!

SyrMom

Rosevalley ... I've been on Faslodex since July and have had varying degrees of soreness at the injection site.  All of the helpful hints found on this site have made it much easier for me to deal with.  As I've mentioned before, after the injections, I immediately stretch the area by pulling up one knee at a time, to my chest.  Then I walk as much as I can.  Following this, if I feel too uncomfortable at the injection site, I cut a Lidoderm patch in half and put one on each side - works like a charm.  I'm sure you realize by limiting yourself to one injection instead of 2, you are receiving only half the dose.  Also, you can point out to the nurse exactly where your previous pain was and have her inject away from that area.  There's plenty of space back there to chose from!  Good luck and hang in there!

Denny123

Dx'd 10 years ago today, with Stage 0.  But it was really Stage 4 with liver mets.

After Gemzar with Herceptin for my liver, I was blessed with 6 years of remission.

Now I have a recurrence in the lymph nodes behind my sternum, but the growth is being slowed by Faslodex butt shots.

I have been on Herceptin for 9 years, and will be for life, I hope.

Yay me!

Doing okay with Faslodex.  The nurse who did my first injection did it very quickly and I did have a lot of pain.

But when I got her again I asked for a verrrrry slow injection and she took about a minute.

What a difference!  No pain afterwards. 

I will have a scan in March to check the growth.

SyrMom

Denny,  Congratulations!!!!  Wow, 10 years and with liver mets, no less.  That is amazing & gives me lots of hope!!  Thanks for sharing.

Tree3

I think you're going to give us all hope, Denny.  It will be 5 months for me, Jan. 6th and so far, no pain, no nothing, except the ocassional exhaustion, which I think goes with the territory.  I'm happy for you.  I've been reading so many great stories on this site lately, that I'm full of hope.

Teresa

Denny123

Thanks everyone!  May we all win the fight!

Denise

llanabeth

Good Morning!

I started a combo of Falslodex, Lupron and Xgeva last month.  My markers had shot up and we concluded that Tamoxifen wasn't working anymore.  I had terrible side effects from Lupron and the usual soreness from Falslodex but less than a month later, bloodwork showed that my markers took a serious nosedive from 900 to 500!!!  I am so excited!  Well worth the side effects and now I know what to expect from Lupron so I am ready!

Tina2

Yay, Tamara! Great news for the holidays!

Tina

Tree3

Tamara, so happy for you.  Boy, I hope this keeps up for all of us.

Teresa

llanabeth

Tina and Teresa, yeah it was the BEST christmas present ever!  I don't need anything else!

stellaratovsky

I had my second injection on Thursday with faslodex. I feel a bit better less pain. Could this really be my miracle drug? I feel so much better words can't describe. I am on day 2 with no pain killer. Thank god.

Tree3

Stella, happy to see you here with us faslodex girls. I've been following you on another forum and am thrilled to read your pain is deminishing. Hope it is the faslodex.



Merry Christmas and happy holidays to all my posters

Teresa

Aerial

Tish, I have no tumor marker numbers or, blood work abnormalities (and never have) so, only scans can show "what's going on."  Faslodex (plus Zometa) has been keeping me stable for over a year now!

Denny, thanks for sharing your hopeful experiences!

Hooray, for all of you getting good results with Faslodex!

Let the healing continue and a enjoyable, wonderful holiday for everybody!! 

Tish_13

Aerial,

Love your Stink Eye Cat!

To the Faslodex Girls,

Here is to the Stable Boy and may he stay with us all a long long time.

Hope you all had a Joyful Christmas,

Tish

c-k-j

Hello ladies, I jump on here after I have my injection and receive my CA2729 results.  Once again, a year after I started Faslodex, my numbers are still low.  The best Christmas gift ever!  And I'm so happy to read of the other women good results, too.  The news from the San Antonio Breast Conference had confirmation for the benefits of Faslodex, plus promising news for triple negative treatments and the benefits of Herceptin for a year.

It seems the biggest complaint is the pain in the butt it is and ways to deal with it.  I appreciate the tips and advice.  I know I learned from here to ask the nurses to only go as far as needed to reach the muscle (I didn't think I would be able to endure even a year of the pain from the injection when the needle went in further than needed) and the guide on the long needle helps them hold it steady and not wiggle it.  I go home and sit on an ice pack and massage the site gently.  Has anyone alternated between ice and heat?  Other than the site of injection pain, I am very comfrotable and pleased there are not worse side effects.

Thanks for all the encouraging news. "God Bless us one and all!"  Wishing all a very joyful and healthful New Year! 

c-k-j

My insurance wouldn't pay for a PET scan at 6 months after my initial scan.  I'm getting a CAT scan in Jauary, a year after my first one; my oncologist didn't say anything about a PET scan since my blood tests are very low and the CAT scan was also normal.  I am on the 500mgs dose and am so glad it is working so well.

sandilee

Hi Faslodex sisters,

   I had my 18th dose of Faslodex yesterday, and thanks to the Benedryl, I had absolutely no reaction, no bruising, no redness or itching at the site.  I take 25 mgs two hours before the injection, and then another 25mgs when I get home, as prescribed by my oncologist.

   I just wanted to come on again and remind everyone of the benefits of Benedryl if you have any itching, after-pain or problems with the injection.  It really has worked wonders for me. The nurse said that previously the injection site would even get red as she was injecting the med, whereas now, no reaction.

   I'm toasting to all of us this New Year's for a long run on Faslodex!

cheryl1946

Hi Everyone,

Looks like I'll be joining the "faslodex girls".

My PET/cat scan last week shows 2 more spots on bones; higher up on laft arm and spine/upper chest on left.

Good news; its not in brain, liver, or lungs.

Letrozole lasted about 16 months. My ca 27/29 started going up on 10/1. My tumor markers are a good indication of what's going on.

Good to read the tips on how to avoid pain. I have sciatica and that is very painful.

Denny123

c-k-j,

I read on this thread several places where you should not use ice on the injection areas since that won't let the serum spread like you need it to do.

EvaPerone

I go to a good massage therapist about one week post-injection. She can feel the faslodex stuck in my butt/hips. But I have plenty of padding, maybe it hurts worse if one doesn't. 

I find it interesting how few have the SE that I suffer from, horrid joint pain. I just turned 50 and pain started after my first few injections. So I don't think it's normal aging. 

Happy 2013 to all, may we all stay on faslodex this year until they sort out the gene sequencing and can specifically target our treatment. Cheers.

Tina2

I'm with you on the joint pain, EvaPerone. Pain in my lower back, sacrum and hip is still impeding my activity and making me more tired than I should be. It hasn't stopped--- I just got sick of hearing myself complaining about it! My resolution for the new year is to try to find a remedy I can live with.

Tina

Denny123

My last injection a month ago, was a very slow one, about a minute.  Hurt that whole time, but NO pain afterwards.

Will keep asking the nurses to slowwwww down.

My next injection is New Years Eve-day.  No whooping up for me....

Tree3

I know this is going to sound weird, but maybe I'm a little weird.  Whenever I'm about to get a needle put into me I start singing.  And sometimes the singing gets a little loud.  But I never feel the needle and if i do I'm so busy thinking about the words to the song I forget everything else.  The nurses get a kick out of it and then I'm through for the Day.  This week I sang "Hello Dolly".  It really takes the pressure off the needle.

Well this is my 4th month on Aromasin and my second month on my faslodex, and the markers continue to drop.  Still in the hundreds but dropping.  Scheduled ffor bone and cat scan in Jan to get a true picture of results but I'm not worried  Feeling very optomistic, actually.

Teresa

Tree3

I know this is going to sound weird, but maybe I'm a little weird.  Whenever I'm about to get a needle put into me I start singing.  And sometimes the singing gets a little loud.  But I never feel the needle and if i do I'm so busy thinking about the words to the song I forget everything else.  The nurses get a kick out of it and then I'm through for the Day.  This week I sang "Hello Dolly".  It really takes the pressure off the needle.

Well this is my 4th month on Aromasin and my second month on my faslodex, and the markers continue to drop.  Still in the hundreds but dropping.  Scheduled ffor bone and cat scan in Jan to get a true picture of results but I'm not worried  Feeling very optimistic, actually.

Teresa

Tina2

Tree, that's wonderful! My immediate thought for the next injections: "Cockeyed Optimist" from "South Pacific," but I'm sure you have a lot of numbers in your repertoire!

Tina

P.S. Just think of what you could do with the timing on "I have heard people rant and rave and bellow...!")

Tree3

Tina, i think that one  would throw the poor nurse over the edge.  They already think of me as rather a colorful character.  Which I am.  But I am working on my next song  It works and it keeps me happy.  Whatever.