Faslodex Girls

pearl,

Welcome! For most of us, the GI system is not an issue. I sometimes have a bit of nauseau for the day [and sometimes the next day] of the injection. But I can control this with diet. I love some Vietnamese Pho or Chinese pork chop noodle soup those days. But, I love soups.

*susan* 

So sorry Robin. Hugs!

I am having my first scans on Friday, since starting this in July. My lungs are filling up again with fluid (I had it drained once in July) and my spine is hurting (hoping it's just the pressure from the fluid). I'm thinking that this drug isn't working for me, since I don't feel any better. Keeping my fingers crossed!

Lynne

I have been on the Faslodex since May 2010. I didn't have any loading doses, and my first year were just single shots. My butt has seen some action!

Hope you get a lot of time on this drug.

*susan* 

Hi all,

Never did get my third shot last Friday as I've been in the hospital for a week. I had pleural effusions and my onc says the faslodex is a slow starter so on to chemo for me. I wish you all the best and hope I'll be back on this thread after chemo kicks some cancer butt.

annie

Annie praying that the chemo works quick and fast and that you can be back on faslodex soon.  Sending lots of positive energy and thoughts from one NJ lady to another.

Yikes, kayrnic. I am not aware of faslodex causing any of those reactions, but that doesn't mean it can't. I would bet that your cousin is having a reaction to one of the other treatments or a combination thereof.  

Kayrnic, this thread has lots of good info for anyone new to Faslodex.  Follow it from its beginning and you will see some of the same useful pointers coming up again and again. Everyone agrees that Faslodex must be at room temperature before it is injected, and that it be injected slowly. It's also important to place your weight on the leg opposite while getting the injection.

Hi Tish,

I too started on Faslodex in June after being diagonised with mets to my spine and lungs after being first diagnosed with Stage 1 IDC,  7 years ago. I had the lumpectomy and radiation as well as taking the anti estrogen meds then (no chemo, the oncotype dx test came back with an 8% chance of reccurence, so I skipped it) and had no issues up until my back started hurting the end of May. They took and xray and a MRI.  I had a compression fracture in the T9 vertabrae (which I had repaired with "cement"). The MRI also showed all the tumors on most of my thoracic vertabrae and a dense area in my right chest. The CT scan of my chest showed the tumors and nodules in mostly my right lung (one in my left). I always thought if it came back, it would come back in my breasts, then I'd have a double mastectomy and chemo and I'd be all set. Funny how things happen.

My monthly routine is a wrapping my arm in a heating pad, finding a vein, having my 1/2 hour Zometa infusion, then going back to a room and leaning over an exam table and  getting those 2 painful shots (one on each side, my lower back, towards each hip).  No heating pad, no one to hold my hand or rub my back (the nurse sometimes rubs the injection site if I complain about the pain too much), just 2 slow long injections, with a couple weeks of bruises, lumps, and pain on one or both sides. They never even offer to give me ideas how to make it easier. I'm going to try the leaing on the alternate leg next time, see if that works.

As for working. Yes I am. I work from home for a health insurance company (pretty ironic, huh?) processing medical claims. I sit all day at a computer. I work 10 hr days Mon-Fri and a 5 hr day on Thurs (off Fri). My back bothers me, sometimes worse than other times (I take iburprofen because the narcotic drugs make me loopy). My oncologist hasn't put any limits on me, but I haven't asked her to either. It's a pretty non-physical job, except for my hands, LOL! I'm thinking of adjusting my hours, so I'm not working 10 each day (just work more on Thurs and still have Fridays off). I get pretty tired in the afternoons.   I'm lucky that I can basically make my own hours, as long as I give my supervisor a 24 hr notice. I usually pretty much keep to my regular hours though. I try to make all my appointments on Thurs afternoon or Friday. I doesn't always work that way though.

 I just had my CT and Bone Scans on Friday (after receiving Faslodex and Zometa for 3 months). I will hopefully get the results tomorrow afternoon to see if it's working on the tumors.  If not, we move on the the next drug (still not chemo).

Thanks Lynne for the info, but really try laying down for the injections and bring a heating pad if they do not provide one. It is better for me and the RN. I hope you scans and CT come back with good news.

As for work I hate the afternoon fatigue, I just want to nap. I do a lot of lifting, those mannikins get heavy and spinal fractures are a concern. On the plus side I am stronger and more agile than most women my age, hopfuly strenth will help hold me together!

Susan, I am interested in what type of PT helped your back pain? I have ladies in my support group that went thru PT before the pain was diagnosed to be from bone mets. PT caused them more harm, but if the therapist knew the pain was from bone mets, I could see the out some being more helpful

Thank you Ladies

Yes, may we all have a long run with this drug!

I've never heard about the "2 nurses injecting each cheek at the same time" technique.  I guess it means you get it over with quicker!  

Usually, the onco nurse gives me the Zometa first (thru an IV). They let the faslodex warm to room temp, then, I go to an empty bathroom or exam room for the shots.  I bend over the sink or whatever and try to relax the leg and butt being injected.  (It helps.)  My behind hurts for a few days afterward and lately, I get a little lump near the injection site.  It feels like a bruise.  I wonder why laying face down for the shots isn't the method of choice for most oncologists?  It sounds like a good idea to me!

My most disabling pain comes from slipped vertebrae that entraps a nerve.  I have left side, radiating leg pain.  My pain doctor wants to try a Radio Frequency Ablation but my health insurance has denied it.  Twice!  In the meantime, he prescribed a couple of different strong pain pills--one made me horriibly sick to my stomach, the other made me groggy.  So, last week I tried my third Nerve Root Block injection.  It seems to be helping--at least some.

Hey to my Faslodex sisters, back from Istanbul and meandering through the Adriatric. My last scan was good - 7 mets in lungs but stable! No mets in liver since re-section. 6 months on Faslodex and counting.

I did have loader shots for those that want to know. And I get my injections standing up simultaneously, it keeps you from tensing for the 2nd one. Minimal bruising. My SEs include: bad taste, rancid smell, a bit of fatigue but only for first few days. Biggest SE is joint pain and it seems to be cumulative. My doc says joint pain is normal for post-menopause and that's what I am thanks to chemo and endocrine treatments. I'm 49 but shuffle like an old lady when I walk after sitting for a while. 

But if that's the worst for now, I'll take it. I don't even have to have a CT scan for 6 months, so I'll be hitting my one year Faslodex anniversary on the next one. That's about as good as it gets. So I'm packing my bags again for a volunteer stint in Ukraine, then a week warming the bones in Mexico. What else should I do with "my" winter??? Woohoo, EvaP 

I hope everyone has seen this. Metavivor has a great campaign, The Elephant in the Pink Room - Don't Ignore Stage 4. Please post anywhere/everywhere and call attention to the need for research for all of us with metastatic disease. 

For EvaPerone,

I had my ct scan in September  - stable was the result.    Lung mets some look smaller 1 mm here 2 mm there but that is regression not progression.  Six months on Faslodex for me too.   I hope I now will be on the 6 months schedule instead of every 3 months for ct scan.

Glad you had a nice time in Instabul.  

DJ 

Well hello - I have become a Faslodex Girl. Eight weeks on Arimidex since being diagnosed with mets and my tumor markers have risen from 153 to 253. I am prone to an overabundance of optimism. but right now I am disappointed - was hoping for Arimidex ad infinitum.

I will read this thread before I go to bed tonight, but right now I just want to feed my face.

Leslie 

Leslie, welcome. Wishing you a long stay with faslodex. 

 Aerial, I'm with you. Even the mention of pink makes me bristle. 

Tina, Thanks for the info on campaign sponsorship. I'm too cynical to believe any company sponsors out of the goodness of their hearts. But any company that wants to make major profits should look to anything that cures or enables us with MBC to live high quality lives for longer.

Unless of course we really want to change and force health care into no longer being a commodity. Ha, don't think that will happen in my lifetime.