Faslodex Girls

Mkkjd60 -- I've only been on Faslodex for about 1 1/2 mos, but I had 2 different chemo regimens prior to that -- Taxotere & cytoxan in 2009, and 5 rounds of Doxil after my recent mets diagnosis. As far as how it's worked -- too early to tell -- tumor markers have dropped slowly but steadily, but I have had pain increase. Actually, tomorrow I find out the scan results to see if there's been any progression since starting Fas. I'll post back tomorrow to let you know, but I do recall others saying earlier in this thread that Fas can take something like 4-6 months to work.



Hope that answers some of your questions. Hope your mom has a good run on it...some ladies on here have had great success on it, and it's a very tolerable treatment.

Faslodex has been working for me for almost two years and I am very grateful!  My last CT scan came back and I'm still stable--thank Heaven!

I haven't had any hair loss or thinning.  I wouldn't mind some weight loss but, my appetite is as good as ever!

Unfortunately, I have arthritis and spondylolesthesis (vertebrae slippage & pinched nerve) that causes me much more pain than the spine cancer or the faslodex side effects.  It's so frustrating. I can't walk for very long and have to use a scooter for vacation spots like "Disney World." I see a pain specialist and have been trying different medications.  Of course, my health insurance keeps trying to dictate and deny certain meds that my doctors would like me to try.  Double the frustration.

It seems like Stage IV cancer should be enough for anyone.  It feels so unfair to have additional health problems yet, many of us do.

((((((My heart, thoughts and hugs go out to all of my fellow faslodex girls.)))))

Hi everyone,

I have a question about Faslodex.

I keep reading on posts that "Faslodex takes longer to work"--what is meant by that, exactly? My CA 27 29 tumor marker went down to 58 on Afinitor(about 80 points in 6 weeks).

I know we're all individuals and will be affected differently-- but just wondering what this "takes longer to work" thing is that I seem to keep running into. Is there a general truth to this?

Thanks, and best to all!

edit 4/20/2013

oh, scratch that--found some answers:

http://community.breastcancer.org/forum/8/topic/722136

thanks!

Hi everyone, I am feeling a little sorry for my self this last week anyways. Had ct with progression of liver mets, back pain is back, hip hurts too. Was on arimidex and zometa for a year. I sure hoped to get more then a year out of it. Onc says we will change it up. I will start Faslodex next week, Any words of advice or what to expect. I am also worried about quiting my arimidex if faslodex takes a while to start working! Onc said i could do Radiation to back for pain but so far Motrin helps, so don't want to go there yet. I would if he really wanted me to but only if needed. Thanks for listening. I will try to get off my pitty party. Redroan

Hi gals,

Haven't posted for awhile going for shot Monday now on faslodex since November. Go for bone scan and Ct scan on May 13th to see if fasoldex is working. Kind of worried it's not working. Found bone met in leg and lung last scan I had. Having pain in leg and shortness of breath. Not looking forward to scans. It's hard not to get depressed we gals go through so much. I pray faslodex will help, sometimes I just start crying and feel sorry for myself. I know I have to think positive but sometimes it's hard.

Joining the club -- I had my first shots today.  Nurse was great.  The meds came up warm, and we strategized about how to relax the buttock muscle.  I had to remember to keep relaxing whilst she was giving the shot.  It barely hurt at all.  Yay!

Now to hope I don't see more than minor side-effects from it.

Amy,

I have had waves of nausea, and have had a "faint" kind of feeling, but nothing as dramatic as what you are describing. I too have been getting faslodex for two years and have only had these minor responses a couple of times. Last month was a bit rough, so I will be interested to see how this month goes.

Did this feel like an allergic reaction? I would hate to add pre-meds to my monthly visits, but better than not getting the drug.

*susan*

I don't know if it felt like an allergic reaction or not.  It was sudden and intense, and WAY out of the ordinary.  Is that what an allergic reaction feels like? LOL.  I don't know when it turned from being what the Faslodex did to the hyperventilating.  My onc said that I got to the hyperventilating stage quickly because my lung capacity is really strong (I work out intensely 6-10 hours per week) and I was able to push a lot of air fast.  It was strange, though, I had no idea I was doing it.  I just thought I was sitting there feeling weird, and the next I knew I couldn't feel my feet and hands, or talk, or do anything.  Not an experience I want to repeat!  I do hate to add pre-meds, though, esp. if it means I have to have a driver afterwards.  Then that just makes a huge issue out of the annoyance of double-butt shots every month.

Amy,

That IS scary, particularly out of the blue after all this time. It sure sounds like an allergic reaction to me. Are you taking any new meds? Faslodex has no known drug interactions, but there certainly could be unknown ones. I hope your medical team reports this to Astra Zeneca, and that pre-medication prevents another episode. It's a drag to have a driver, I know, but far preferable to another frightening incident. Yikes, it makes me woozy just to read your description.

Tina

Tina72,

Did you have these responses in consecutive months, or just randomly? This all seems so very scary to me and I am sorry that the two of you have had these experiences.

*susan*

Had my every 3 month CT and Bone scans a few weeks ago, and they show that the tumors have once again shrunk. I had my 16th treatment. I asked the oncologist how long is the longest person she's had on Faslodex/Zometa. She told me 5 years, but the average is a year. I'm hoping that I'm longer than the year (that would be June for me) on this treatment. It has side effects, but they are managable. I have our youngest's high school graduation is June, my husband's 50th birthday in August, our older daughter's wedding Labor Day weekend, and our 30th wedding anniversary in Oct. Big year this year. I'd like to feel good for all those special occasions, and pray this treatment keeps on working!

Hi I also had experienced a cough that lasted for almost a year! Worried also that it may be lung mets but after looking over the common side effects list on Faslodex it lists "cough" as a side effect. I did have a PET scan to assure on other envolvement than bone.

Back from the onc, no magic.  He thinks that I felt something weird in the shot (they've reported the batch to the company that they got it from) and then became anxious and hyperventilated with great efficiency, lol.  Never knew I could do that!  He connected it, though, with the fact that I had just told him (in my appointment before the shot) about my friend who died a few weeks ago of breast cancer, somewhat unexpectedly, and thinks that maybe that incident is/was bothering me more than I wanted to let on to myself.  I guess that's entirely possible.  If that's the case, it's kind of scary how my body jumped to panic mode without my permission!  

Still no explanation as to why I feel completely crappy for the 2 days following, though.  It's possible that whatever was wrong with the shot is still lurking in my system.  That was an idea he threw out there, but he also didn't sound too convinced by it.  

I'm certainly open to any thoughts on all of this, though.  In any case, it's been really wonderful just having you guys listen and respond.  How I love my fellow survivors!

Amy

Hi Redroan,  still no problems.  I have a few weird aches and pains, but since I'm recovering from a major back operation I chalk everything up to that. Hoping for both our sakes that you just have stress. Also that your son is OK and that you have the necessary meds in the house.

When I asked my onc abot side-effects from this he said "aside from a pain in the a--", shrug.  It was quite comforting to me, but others have had real problems.

Any tips for mild, low-level nausea? I have a cast-iron stomach and so far never get to the throwing-up stage, but the queasiness is icky.

I'd rather not start taking serious drugs if I can help it. Ginger capsules and ginger chews/saltines have satisfactorily addressed this until recently, when it seems to be occuring more frequently. I'd be happy for other hints. My onc prescribed compazine ages ago, but I looked it up and concluded it would be like using a sledgehammer to take out a gnat, so I haven't taken it.

Thoughts?

Tina