A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Oct 1, 2008 05:25PM
Hi Girls -
Well, I just saw my onc after 2 months of faslodex and zometa. I began with 500 mg of faslodex and zometa (first treatment) the first of August, had a 250 mg dose of faslodex at 2 weeks, then 250 mg of faslodex and zometa the first of September. When I first started treatment, I had pain in my hip and pelvis (bone scan showed activity there) and it's cleared up - but for the past week I've had pain in my rib area (clears up with 1 vicadin). Tumor markers have gone up from 150 to 300 over the past 2 months. My onc is ready to declare me non responding to hormal treatment and start chemo. I've read that average time to response of faslodex is 2 months though.
What do you think? I've decided to stay the course for another month at least (he says it's not life threatening to do this) and see how things go - and if the pain continues to get worse in my ribs maybe go to chemo. I'm not sure why my onc is in such a hurry to move on to get a response with chemo. Orignially he thought it would be November before we had a good read on things.
For you faslodex gals, how long till you had response? And if it didn't work for you, when did you move on? I really don't want to give up on hormonals but if I have to I have to. I just want to make sure I have to!
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Posts 1 - 16 (16 total)
Oct 1, 2008 08:13PM LuAnnH wrote:
I am on faslodex, been on it for 17 months now. I was intially told it takes a good 4 months or so to get a response to this drug. Unless you are in some great danger I would give it a little longer to try and work.
Oct 2, 2008 06:11AM - edited Oct 2, 2008 11:02AM by sdg605
Thanks. Yes, I read a summary that said while blood serum level increased a little more quickly with Faslodex given with a loading dose, MD Anderson reported that there was little difference in time to response ( 2 month median) between dosing schedules. The recommendation was that unless the patient is progressing rapidly, remain on treatment for at least 3 months. 4 months sound reasonable. There was also a recommendation against using tumor markers alone as an indicator before switching treatment. I'll stick with it another month unless the rib pain becomes totally unbearable. (As someone posted earlier, when did I become part of the medical profession????)
Oct 2, 2008 10:29AM LuAnnH wrote:Sandy, if you go to www.bcmets.org and look up the name Juanita she started faslodex and I cannot remember if she got the loading dose. But her markers kept going up then around the 4th month or so they leveled out and starting droping. Some people are too anxious and just don't give this drug enough time to work. I'm with you on waiting andother month maybe two to see if it is going to work.
Oct 2, 2008 01:46PM Lilac wrote:
I was on Faslodex for one month, and after a CT Scan showed some significant progression in my liver, my onc. took me off the Faslodex and started chemo, Gemzar. She said she wants me to be in remission (or maybe more stable) and then go back to try Faslodex again as we didn't give it time to really work. I've only had one round of Gemzar, so don't know yet how that is working. If you do stop the Faslodex now, I'd guess you'll still be able to use it again later.
Oct 4, 2008 08:42AM sdg605 wrote:
That makes a lot of sense, LilacLady. I'm bothered because my onc said that the cancer was no longer responding to hormonals. Seems quick and off the cuff, without doing scans and giving the faslodex time to work. I do have increasing rib pain, though. I'm still waiting to see how things go this month, esp, with rib pain. Am also looking into Cancer Centers as a way for comprehensive treatment and a good second opinion.
Oct 4, 2008 09:52AM AusAla wrote:
I've been bothered by a pesky rib met for over a year. My pain is coming from the dang rib breaking every few months. My med and rad oncs believe the rib is a mess from the cancer and furthered weakened by radiation. Last time it broke was about ten days ago, all I did was cough...and it was just a little cough (on my birthday, how nice!). It has broken from just bending over too. I try to be careful, but I am single and there are things I don't have someone else to do for me. I can't stop living. Sometimes I also have some radiating pain towards the front of my body. The cancer is in the rib on the side of my body. I've been on faslodex for over 26 months. When the rib met showed up, my onc and I carefully considered whether to try a chemo. But we decided it was just one rib met, and not to change the course of tx. Sandy, feel free to pm me.
Oct 4, 2008 01:48PM DJ64 wrote:
My first Faslodex shot was like you, 500 mg on August 7th. Then 2 weeks later had 250 mg, following with the same two weeks later. I had a ct scan on the 7th to use as a baseline. It also showed that my tumors and nodules in the lungs and pleura had double in size since the ct scan in June.
The ct scan I had after 1000 mg of Faslodex showed that everything remain the same except one area the tumor looked like it decreased and in another it look less inflamed. I saw my oncologist the following after the scan. We agreed to do 250 mg monthly and I will have another scan in December. I hope then, it will
show remarkable progress in decrease my widespread pulmonary and pleural metastasis.
I didn’t have any bisphosphonates as I have uveitis and my specialist believes it was caused by my taking Fosamax and Boniva. Tumor markers don’t seem to work on me.
It has never gone up for any of my recurrences. She told me that is to bad, because it
is a good indicator in knowing the progression of the disease.
If I were you, I would keep using it for at least 5 months. Everything I have read on the internet, seems to indicate that progress will show up in about 3 to 5 months. Good luck to you sdg605. We are in the same kind of boat as far as drug and timing.
Oct 5, 2008 07:54AM sdg605 wrote:
Thanks, Bethie and DJ. Those are both good stories, and I will let you know how things work with me. I am so happy to hear that you've been on Faslodex 26 months, Bethie - hoping that will be the same for you DJ. That's what I'm aiming for!
Bethie, I did PM you.
Oct 5, 2008 10:09AM - edited Oct 5, 2008 10:10AM by greta
You are describing exactly what happened to me. My tumor markers went up. I switched from Tamoxfin to Faslodex and continued with Zometa as always. I had two 500mg. treatments and two 250. So I guess you could say I was on it about 4 months. My Pet showed that the tumors on my bones were spreading, so the Onc. said that the BC could have mutated and was no longer ER/PR+. I had a biopsy done on one of the tumors and sure enough, it was now ER/PR- and I am having more done on the slide to determine if it is now HER2+ when it was HER- before. I was started on the chemo pill, Xeloda. It goes from 3000mg to 5000mg. You usually take it 7 days on and 7 days off. I began on the 4500. and had too many side effects. I went to 4000mg. for a few months and the side effects began to build up too much again. I am now down to 3500. and for my height and weight 3000mg. will be fine. You get a hand and foot syndrome, which gets better when you lower the dosage. I also have a metalic taste in my mouth which I did not have in the past. The girls on this site say it does not matter which dosage you are on for it to do its job. It has very good results from what I can read. I am due the middle of Oct. for tumor markers and a PET, so I will see if it is working. My Onc. feels that it is and so do I. Good luck. You need a test of some sort to see if you are no longer ER/PR+. You need not waste time if you are not going to respond to the Faslodex. I hope I was of some help. Best Wishes, Greta
Oct 6, 2008 01:55AM ozzie2 wrote:
I had two injections of Faslodex but only 250mg and it was stopped as my TM went throught the roof...
I have done xeloda now since end of march and it looks like this has stopped working..TM are on the rise again up by 111 in 3 weeks not good...I was doing 4000 mg of xeloda but this was dropped when side effects kicked in but it did bring TM down from 1100 to 420 , then last mt they went up by 11 to 444 now up by 111 to 555 ...whats with these numbers seem strange to me ...all kinda the same like??
Do u loose the hair with Gemzar? yikes...
I hate this...
Oct 6, 2008 07:31AM BonnieVA wrote:
Sandy, my doctor had a different approach to Faslodex. He has me starting Faslodex and Gemzar together. After four months we will do scans and if all looks stable or better, I will stop the Gemzar, and just be on the Faslodex. Then we will follow up with scans three months later. My onc said it takes at least 4 months for Faslodex to work and that he does not want any progression during that time. If Faslodex doesn't work, then I can go back to Gemzar. He stated that without Gemzar, he would expect some progression since it takes Faslodex so long to work. Hope things go well for you.
Oct 25, 2008 10:43AM sdg605 wrote:
Hi Girls - I wanted to check back in on the Faslodex thread and to let you all know how thins went. I had a PET/CT earlier this week, blood work, then met with my doc on Wednesday to discuss the results of the tests, as well as PAIN CONTROL. I have had progression since last scans - no suprise there because my ribs are so sore, and that only came on in the past several weeks. We've decided to switch approaches because the Faslodex wasn't doing what it needed to, at least as quickly as it needed to do it. I've begun Abraxane and Avastin - the first treatment was Wednesday and not bad. Here's hoping it does the trick, and quick, too :-).
It took a while to wrap my head around that, because Faslodex was so quick and simple. Now I feel like I'm tied to the doctor's office, with chemo once a week for 3 rounds, then one week off. I'm beginning to adjust to how it is. The best thing is that the rib pain is under control with 10 mg of oxycontin every 12 hours. It makes such a difference in QOL - I actually feel like doing something today and am enjoying the beautiful weekend we have.
I hope I can go back to hormonals! Thanks again for sharing your thoughts and experiences. It helps to know how other docs are working with all of the treatment combos that are out there.
Jul 8, 2009 11:51AM Bella111657 wrote:
I just had a double corpectomy in my neck due to bc spread to the spine. First it went to my hip. Tamoxifen did not work and now I have been getting Faslodex for 6 weeks. I just returned from my radiation oncologist because I have a tumor in my lower back/pelvic area that has made it impossible to walk. Does anyone experience a lot of pain on Zometa and Faslodex? How long does it take radiation to work so I can walk.
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