Faslodex Girls Thread 2014

LuAnn got seven. I am on 4+. Anyone remember how long Denny got? Quite a bit, as I recall. *susan*

A while ago my oncologist told us that he has a patient who has been on Faslodex as her main treatment for nine years. He continued with "We touch her up with chemo once in a while and she's doing fine."

From the length of time my doctor has indicated that he's worked with Faslodex, I'm fairly sure he was involved the clinical trials, but can't say if he participated in the initial trials, the trials for the larger dose or both. My hunch is both.

Tina

Sandilee, 

I too loved Little Lulu comics and would be delighted when a new issue arrived at the drugstore. There went my allowance! Many Lulu stories were slyly subversive. She was kind and clever, but often mischievous. My favorite stories were those in which Lulu served as storyteller to Iggy and Tubby and the other kids, telling tales about the resourceful, brave "poor little girl" who always saved the day. The only difference between the poor little girl and Lulu was a little patch on the former's dress. The kids in her stories were always the friends she was telling the story to, just in different outfits. I recall being terribly tickled by this.

Do you remember that Little Lulu shilled for Kleenex? I have a small cardboard display of her holding a Kleenex tissue. It sits on my bookshelf.

Tina

Sandilee, that is the best compliment I've received in many a moon. Thank you. 

While we're at it, let me thank you also for beginning the "What are you doing for fun?" thread, which I find the sunniest and most inspirational spot on the forum.

Tina

I have been following the fanny pack advise and keep the weight off the leg getting the shot.  Trying to put an intramuscular needle (IM) into a deep muscle is much easier when the muscle is relaxed and not contracted.  I have given many IM shots as a nurse and we always told the patient to relax and not tense up prior to the injection.  Once the shot delivers the medication into the muscle, THEN is a good time to use that muscle...walk around, go upstairs or massage the muscle to help evenly distribute the medication.  As long as the proper length IM needle is being used to reach through the fat tissue and into the actual muscle, I think the patient will generally have less soreness and irritation if the muscle is relaxed for the injection.

When it comes to your Xgeva shot or any shots that may cause inflammation or induration with pain (such as a flu vaccine), I avoid my arms completely.  I already have stage 2 lymphedema (LE) in the left arm and have early stage LE in the right, so I have been getting standard injections in my upper thighs for over 8 years now.  Remember that if you have had bilateral mastectomy or nodes removed on both sides you have a lifetime risk of developing LE on either side. Practicing risk reduction when possible is no guarantee you will never get LE but may be helpful.  In the case of Xgeva if the only choice is arm or abdomen, I would choose the abdomen.

Cling, I have had many Xgeva injections in the abdomen.  They use a short, fine needle, and it goes in the fat below the belly button on either side.  Some of them I didn't even feel.

I had my Faslodex/Zometa treatment on Monday and this is the worst I have ever felt!  Lower back pain was almost unbearable, and I felt like I had the flu.  I managed the nausea with Phenergan, but even the strongest pain pills only took the edge off the back pain.  I slept most of the day Wednesday and yesterday in my recliner because flat bed was just too uncomfortable.  Poor DH took off work, and slept on the couch to be near me.  Dr. didn't seem concerned...just said to rest and stay hydrated, take pain meds, eat light, and it would pass.  He was right, but it didn't make it any easier.  I keep hoping that each month the SE will be less, but that hasn't happened.  Any suggestions from my fanny pack sisters would be appreciated.  How do you deal with these SE?  I have a scan in a few weeks.  As long as this combo keeps working for me, I will endure the SE, but it makes it harder to show up every month for the treatment.

I was on Aromacin, alone and had some progression after 1.5 years  now am on Aromacin plus Faslodex, had improvement on last scan. I don't seem to have any major side effects, so the change has been good for me.  Good luck, Toni. Wilsie

Leah, this is going to sound all wrong, but congratulations on the virus, hooray!  Viruses won't return every month and they bring aches that have nothing to do with progression, so great news

Hope it's not too bad, though.  Feel better soon!

Gals - thank you so much for this discussion!  I learned a ton!!!  So as it worked out, I may be able to start Faslodex this week - waiting for some dumb insurance thing!  Don't get me started on insurance.  I might go all Charles Dickensonian on you!  Thanks for the tips on the injections.  The nurse that does my Zolodex and Xgeva is an expert so I have high expectations on her handling of Faslodex.  Is it two shots per month - one in each cheek - or it is one shot per month and alternate?  I know when you start, you build up so I think I have one every two weeks to start.

Ladies, I am here in the Chicago suburbs and can tell you it is absolutely lovely out!  Hot,  but sunny and breezy!  Great day to be alive!  XXOO

I have two nurses, one on each side, give them to me at the same time.  I like getting it over with all at once.  It is uncomfortable, but not unbearable.  Good luck, and welcome to the Fanny Pack.  I hope it helps you, Toni.

Great!  I am eager to see if it can at least keep things stable!  I had a great 2.5 years on arimidex.  I can string a whole lot of 2.5 years together and make a happy life out of that so if I can get at least that out of Faslodex, I will be very very happy!

That, Tina, is the million dollar question isn't it?

*susan*

Tree,

I have CT scans every 8 weeks now ONLY because I am in a trial.  I am at a major medical center and they are more like what you described (before the trial).  They only do scans if there is a change in presentation.  My markers went up 2 months in a row in December/January and that prompted a change in protocol and a scan for a new baseline.  I am bone only so the scans really are not informative and I hate that I am forced to expose myself to radiation uselessly but it is the price I am paying to have access to Palbociclib which was what I wanted (I pursued the trial on my initiative - it was not a doctor driven thing).

janet