Faslodex Girls
Comments
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Hi, New here (not to mets unfortunately) and to faslodex. Last Friday I had my first four shot day - Faslodex- 2 of those suckas, Xgeva, Lupron. Anyone else do this? The poor butt cheek that got Faslodex and Lupron is bruised and painful. I got ringing in my ears during the very painful injection and had to sit down while it cleared out. I think the nurse put the shots A: too high on my hip, and B: too close together. Any one have any tips whose doing the same thing? The Xgeva went in to the arm and was easy peasy comparitively. Thanks ladies...and, hello! -
MaryLW- and others who are on or have been on the " Faslodex" mode of treatment for mets. MY MO wants me to consider it as I have failed four other oral hormone blockers. I am not sure if I am just allergic to " white coats " right now or just being selfish . Just finished RADS near collar bone node so asked for a week or two to consider this option. Not that he gave me any others . He will not consider any other chemo drug w/out this first. Got very sick and bad depression on recent Tamoxifen . Really bad back and joint pains in the past w/other ER blockers.
I have had long term neuropathy since chemo in 2006 mostly feet and ankles, now also right. Lung met ( mets ). seen on CT but not biopsied.
At 66 I do not want to risk not being able to drive. I live alone and only family is 20 mins away. The rest overseas. I do not want my family to think I have given up but it is indeed coming down to a quality of life issue. ( Had to stop working at 60 d/t my legs)
My MO thinks if I took an antidepressant as well it may work . I am already on Amitriptyline for the neuropathy which does help emotionally but no help w/pain. Ok what should I do aside from cutting hormones from my diet which I have for 2 months now and lost 10 lbs. Which antidepressants worked for any of you and overall did Faslodex change your quality of life. I realize just being alive for most may be enough. -
For me, faslodex has been FAR easier on my brain and body than aromasin, the only other hormonal I have taken. I do not take an anti-depressant, nor do I need pain pills with the exception of an occasional Advil. Make sure that the syringes are at room temperature. While you are getting the injection, place all of your weight onto the opposing leg or have them do the injection while you are lying on a bed. Some women have been doing warming pads and/or ice, but I have no chosen to try any of these methods. Some months my pain [injection site] is worse than others. Heck, some months there is no pain at all! I do have some fatigue for several days after the treatment, and then again for the three days before the next one. Otherwise, my side-effects have been fairly minimal. [Did have some lower back pain there for a while, but that seems to have gone away.]
I still work. I still lead a full life. I certainly don't consider Faslodex "giving up." On Thursday, I will have my 45th month of injections, much of that with no discernible cancer activity in my scans.
Maybe it will be this effective for you!
*susan* -
GrammyR, I have found Faslodex to be a pretty easy treatment. My only side effects, as far as I've noticed, are hot flashes and some pain from the injections, but not much--really, I'm just a coward about needles! I had a lot of problems with Tamoxifen. Then I took Arimidex, and that was easy, except for the hot flashes. Good luck, and I hope Faslodex works for you. It's a whole lot easier than chemo! -
Grammy, I have been on Faslodex since I was diagnosed in May this year. You will start with what they call the loader dose, that is you will have injections every 14 days during the first month, then after that it will be every 28 days.
It will take a while before you see a change in your tumour markers. My oncologist does a CA15-3 test on me every month, and my markers went from a peak of 159 in August to 88 at the beginning of October. I think that once it gets in your system it should work quite well.
The only side effects I have had were bruising in the first month, and I got around that by rubbing in some arnica cream afterwards. I have never had any pain from the injections or any other problems with them. -
Hi Grammy, I've been getting Faslodex since March, 2013 and have had no problems with the injections. I really haven't had any side effects either. What I do notice is the pain from mets to my hips and pelvis have started to disappear right after the shots and the pain has been staying away longer and longer each month. I feel the best I have in ages, but it has taken over 6 months to see these results. Wishing you wonderful results if you go with the Faslodex. -
Hi Grammy, I too have zero problems with Faslodex. Well, zero means the occasional [mild] hot flash and as we discovered last week, complete vaginal atrophy. On the other hand, those side-effcts cuold be due to Lupron or to Letrozole. Who the heck knows? This is only my second hormonal and I seem to be responding so I have no idea whether your experience will be the same.
Everyone is different -- you might or might not experience the same effects. FYI there's a trial recruiting women who have failed hormone therapy. Faslodex plus or minus an HSP90(?) inhibitor. If you're going to do it, maybe try to get the double whammy?
@chickadee, I know all about the four shot day. Last month I had four. We did right cheek (faslodex), left cheek (faslodex), right cheek (Lupron). And she was very careful to put the Lupron shot several inches lower. What was entertaining is that I'm a bleeder. They always have to put gauze under the bandaid. I'm careful not to wear tight pants since I look lumpy.
I'm off now for the three-needle afternoon. Here's hoping for an understanding nurse (that's not fair, so far they've all been understanding and trainable)
Pam -
Yesterday was Month 45. There was some drama, but in the end Nurse Judy arrived to do my injections. Not so bad again this month. Per normal, I enjoyed a ginger ale at the hospital, came home, and promptly fell asleep. This morning, a little soreness at the injection sites, but my lower back seems okay as does my energy level.
[TOTAL ASIDE: I never got loading doses. That wasn't protocol when I started Faslodex in May 2010. Back then, you just got one syringe per month, no loading.]
As Tina would say, Bottoms UP!
*susan* -
Susan,
So glad it went well. Hope the soreness disappears so you can enjoy your weekend. Congrats on your continued success on Faslodex-- hope you make it into the record books! -
Haven't posted for awhile.
Have been on Faslodex for over a year, but the lymph nodes were growing rapidly. I went on
Gemzar 4 months ago and just had a PET that showed an 80% reduction.
So I will continue on with Herceptin, Faslodex and Gemzar. fine with me. -
Hello everyone, this is my first post on this site. I am excited to be here! In reading through some posts the support here is incredible. I have been a Flas for 27 months now and it is working very well, along with the Zometa and Lupron. The initial rads is what really helped. I have a met to the sternum and it has been a challenging road. I work, and do my best to live my life a full as possible.
I have a 10 year old daughter, who I just told about my medical condition this past weekend. The hardest thing I ever had to do, but thought she was now old enough. My #1 reason for telling her was I wanted her to see you can have cancer and still lead a normal life. It has been a week of emotions, worry, and lots of questions. She is a wonderful, sensitive, and loving child who is fortunate to have a great staff at school supporting here as well.
I look forward to getting to know you all!! -
Hi, graciesmom15. Welcome to the Bottoms Up Club aka Fanny Pack. As you have already seen, you will find a great deal of information and support in this thread and the Stage IV Forum. Unfortunately, I do not have children, but there are many moms here. They know how it is to have mets, and to be faced with weighing what and what not to share with their young kids. Bring your concerns here as needed!
Tina
P.S. Your child sounds like a delight. -
Gracies,
Welcome! 27 months is fantastic... may Faslodex continue to work for years to come. Telling our children is a hard step. I hope that your daughter learns the things that you think are important. My kid is older now, and I am still trying to cram in "life lessons." She sometimes indicates that I can stop now. :-)
*susan* -
graceismom15, welcome! So thrilled to hear that Faslodex is working for you. I've been taking it for 6+ months, and lead a normal life. Well, except for the one morning a month at the cancer center. And the people at my office keeping a sharp eye out. Soon they'll all relax.
Your daughter sounds like a lovely girl.
Pam -
Hi everyone. Trying to sort out my side effects. I'm on faslodex, femara, and xgeva. I'm starting to have pretty bad night sweats. Joint pain for sure. Some tightness in my chest, mostly on one side. But the one that has me stumped is bloating, water retention, and weight gain. I've been on this regimen coming up on 2 months. I feel very bloated and swollen. Anyone else? If so, what are you doing to combat this. I exercise 3x a week (down from 6x)......now that I say that.....fatigue is pretty significant too. I guess I expected that....but to be feeling like a swollen pregnant lady......yuck! -
Water retention is pretty common with femara. You can also blame the night sweats, weight gain and joint pain on that drug. In fact, Femara may be to blame for starvation in Africa. But seriously, the AI's [femara, aromasin, and armidex] all have these side effects listed on their inserts. The tightness in the chest is something else altogether however. I don't believe that either faslodex or femara would normally have this side effect. My xgeva knowledge is limited. Personally, I would consider a visit to your primary just to make sure that your chest symptoms aren't something else.
My last AI thought is, 2 months isn't much time. I found that my AI stuff did calm down after about 6 months, but for me, the bone pain never went away until I discontinued the drug.
Hope this helps,
*susan* -
Thank you ladies for the warm welcome!! I have been looking for a place to talk to others for some time now and looks like I have finally found it. I think telling Grace has made me more comfortable talking to others now, odd is that may seem. She was only 6 months old the first time I was diagnosed with breast cancer, and therefore doesn't remember anything. When she was younger and asked me about having now hair in pictures, I told her (she was 5 or so at the time) that she still had not hair on first birthday so mommy shaved her head so we could be twins. It worked back then, and she obviously put it out of her mind for the past several years.
I look forward to getting to know all of you and hope you are all doing as well as can be expected in health. Although I have wonderful support from my friends and family, no one truly knows what you are going through both physically and emotionally more than you wonderful ladies.
Carrie -
Romansma, about a month after starting Femara and Faslodex my waistline disappeared. I've put on 15 pounds this year -- I think that about seven are due to one or the other of these drugs. (The rest are due to chocolate.) I'm generally puffy -- ankles, wrists, belly. Not as extreme as you describe.
Night sweats could be due to either drug. Hot flashes too.
I've restarted my exercise routine. Lost a few pounds so far, but it's early days yet. Doc says it'll be harder to lose the weight but that it will come off. I'm not having any trouble exercising, but I don't really have any fatigue. -
Thanks for the replies. Good to know it's the drugs.....wish there was something we could do to combat it. Guess I need to get back to excercising 6-7 days and maybe tighten up my diet again. -
Hi, Ladies. I'm no longer a Faslodex Girl. My PET scan showed something in my lower left abdomen, which is confusing the MO. I'm going to have a CT scan with contrast to try to figure out what it is, but in the meantime, he's changing me to Aromasin and Afinitor, apparently two very nasty drugs. They are the last step before chemo. I'm feeling very discouraged, but hopefully, I can do well on those for quite awhile and not have the really bad SE's. The good thing is that my bones were actually very good--no new mets and healing in the old ones. Good luck to you all, and I may come back now and then to check in and see how everyone is doing. Take care.
Mary -
Ah Mary, I'm so sorry. I hope the A/A kicks the cancer's butt. -
I began taking Faslodex today. My tumor markers are up and I have mets on my lungs, liver and bones. A met on my ribs caused a fracture, which weirdly I do not feel at all. I am scared. -
Mary,
Sorry to loose you. Hope that A/A knocks those buggers onto their butt!
*susan* -
Rozann,
And, I hope that you have great success on Faslodex.
*susan* -
Dittoing Susan, Mary and Rozann. Farewell. Hello.
Insult to Injury Department: a sudden onslaught of eye floaters mid-last week, progressing in two days to clouds of pale grey film, gray strings and black blobs across my left eye's field of vision. Worried, I got in to see a retinal specialist this afternoon. He gave me a thorough exam, said I had "lots of floaters," and pronounced it nothing more serious than vitreous detachment. This is a common condition in those of us who reach a certain age, and apparently something we must learn to live with. He told me to call him if I saw flashes (which would indicate a retinal tear or detachment) and come back in a month. He asked if my cancer was stable and what treatment I was getting. When I told him about Faslodex, he said that Tamoxifen is sometimes associated with retinal problems. This led me to wonder if perhaps Faslodex is as well, even though it's not a recognized SE.
Be that as it may, dried up is dried up, no matter what causes it: aging, fulvestrant or a bit of both. I'd still rather suffer the indignities of creeping decrepitude than shuffle off this mortal coil one minute before I must.
Tina -
Tina (and Susan and Pajim), thanks for the farewell (I'm still lurking, though!). I had a vitreous detachment about a week after my hip replacement in January. I was so scared and also so indignant that I had one more thing to deal with! My ophthalmologist told me the same thing as yours. The floaters, shadows are still there, but I'm still hopeful that they'll sink down out of my range of vision.
Rozann, Faslodex is a pretty doable treatment. My only side effect was hot flashes, and of course, I didn't like getting the shots. Although I had a progression after 7 months, Faslodex apparently worked well on the bone mets. Best of luck and I hope it works for a long time for you. -
Hi Rozann, I would be scared too! That is alot of envolvement. I've got BC mets to many areas of the bones and that scares me. I pray for all of us to improve and someday cancer will be no more.
You will be in my prayers, Judy (nanaskids)
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I'm afraid that I have to say farewell to the fanny pack. Just met with my MO today, and I've now have a small spot on my liver. The lung nodules and bone met are stable, so faslodex and aromasin (or 1 of them) haven't been a total waste of time. My MO said my cancer is "indolent but persistent" but she wants to be more aggressive with the treatment, as each scan has shown cancer activity in a new area.
I hate to stop the Faslodex, as I had minimal SE's and almost no issues with the injections. But if it's not doing the job, then it's time to move on. I just hate that I'm already moving on to a chemo. But trying to look at the bright side... maybe this one will shut down the cancer!! Thanks for your support here in the months since I was diagnosed-- you made the shock and "new normal" much easier to deal with!
Wishing all of you a long and successful run on the faz! ((((HUGS))))) -
Hollander, what will your new treatment be? What drugs? I'm not on Faslodex any more, either. I'm taking Aromasin and Afinitor. I thought you might go on Afinitor, too. -
I'll be on Xeloda. I asked about the A/A combo, and MO wants me to try something non-hormonal. She said even though I just have one spot on my liver, having liver involvement is a "game changer". ILC continues to be a sneaky bastard, so she wants to be more aggressive. Hoping xeloda will do the trick!
Good luck with your new treatment. I didn't really have any SE's with Aromasin, and I hope that will be the case for you! Hang in there! Sending hugs ((())))
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