Faslodex Girls Thread
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I get falsodex and xgeva monthly too and take a daily dose of exemestane in addition to vitamins and blood pressure meds.(too many pills) So far so good. Did have rads this past fall for pain and now feel almost like my pre BC self. But darn I still can't sit cross legged on the floor.Silly little goal but I want more of my facilities back. Have a scan this Monday and hope no progression.
Charlotte
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Leah, I am so glad for you that Faslodex works so wonderful for you! I started on the same day as you, but I am leaving the pack now. My TM has been creeping up for 11 months, Faslodex did not bring it down, and the uptrend continues. Had a bone/ct scan last Friday, Dr. called on Monday and told me to get another bone biopsy. Today I went to see her, and was ready to accept the mets news, but the result is negative. I have been through this up and down roads several times, TM continues to rise, 2 CT showed some spots on bones, but 3 Bone scan, 1 PET and 2 biopsy showed negative. Dr. Is puzzled about this mystery, she cancelled my Faslodex shots today, and decided to send me to MD Anderson for second opinion before continuing treatment.
I am leaving fanny girls, but wish you girls success with Faslodex, it has the least SE on me.
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hi ladies! It's been couple of months since my last post..I'm on faslodex, herceptin and zometa. I have never had a really "good shot" day. Every shot is a different reaction to me. First one supposedly hit my nerves that I had hard time walking days after I got the shots. The pain ran down from my "cheeks" to my calves on both legs. Then the one after that the nurse tried another area and it still made me sore now from the bottom up (my hips). The last one wasn't so bad, just sore on the site and bruising on both site! I also noticed that I bled on the site a bit on the first one. Maybe that's a sign the injection wasnt good? It also doesn't help that I sit in traffic for an hour or so going home from treatment. I had another one today and already am sore. We'll see tomorrow. I have the rest of my treatments scheduled in the AM so it's less traffic for me. I live in LA and spend a lot of time sitting in freeways.
I wrote because I was just looking at my bloodwork and did notice that my ASL/ALT are a bit high on the 30's and Cea is still going up a bit but ca 27-29 is normal now. They were both high on time of mets to the bone dx. I also had a lot of pain in my sternum where they found one of the mets but after the second round of treatment I was pain free well besides the SE pain. Won't see dr till the 24th and won't get another scan after that. Just wondering how long do they check to confirm that treatment works? I was pretty sure it's working bec the chest pain went away without radiation. But the TM isn't going down. I was on tamoxifen for 21/2 yrs before mets.
Thanks and happy Friday to all!
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Ok, so I went to Boston yesterday to meet with my breast oncologist at Dana Farber for a second opinion. She's suggesting to go back on the aromotase inhibitors (I was on them 9 years ago, when I was first diagnosed with stage 1) ,without the affinitor (for now), instead of the Xeloda. She said my cancer responded well to the Faslodex, and she wants me to stay with the hormonal therapies till I run out of them, before starting the chemo drugs (Xeloda). This is the first time my local oncologist and her don't agree. My husband and I like what this oncologist had to say, and I'm going with her opinion. She said she'd send a note to my local oncologist. Now I guess I wait for them to contact me so I can get the drug ordered. I should have called them today, since that's the only day of the week my oncologist is in. I was busy with my son's dr appointment now I'll have to wait till Monday! I haven't had anything but Zometa (which I will continue on) since the end of Feb! I'd like to stop the progression and start shrinking those spots again! It's making me a little crazy right now! : (
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Hi Ladies! Looks like I will be joining this group soon. Just recently became Stage IV and am trying to get into the Palbociclib+Faslodex trial, but either way my onc says I will be starting on Faslodex soon. Should start either the trial protocol or Faslodex only on Monday the 14th.
Any suggestions for preparing for the first injections? Has anyone tried taking Motrin or other anti-inflammatories prior to the injection to reduce pain or swelling? I have a history of sensitive acid stomach and routinely take Zantac when my stomach flares up. Anybody experience increased GI symptoms on Faslodex?
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Hi Linda, I've been on Faslodex and Zometa since December and other than some fatigue the day after my first treatment, I haven't had any particularly troublesome side effects. The one thing I did before my first treatment, and continue to do, is try to increase my water intake to 10 glasses a day the day before the treatment and then continue that for several days. I don't always get in 10 glasses but I do get in 8. I do it partly to make sure I have good plump veins for the blood tests and Zometa infusion but my understanding is one thing they watch for with Faslodex is how your kidney function is doing and the water helps with that.
The shots can sting a little but it doesn't last long. Sometimes I bruise a little bit and have a small amount of soreness for a few days but in the scheme of things I find these treatments to be incredibly easy. I won't know until I have scans at the end of May how I'm doing (and my onc said even then the scans can't tell between healing bone lesions and active cancer so I'm just hoping for stable) but I will be thrilled if I can stay on Faslodex for a long time.
I'm sure other people will be along shortly to give you their experiences. I do remember reading that some people experience nausea for a short period of time.
I would be prepared for different outcomes but I think you'll be pleasantly surprised by how easy the Faslodex is to tolerate. Good luck with it and let us know how it goes.
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Hi Linda, and welcome. I'm assuming you've read all the suggestions at the top of the thread - they really help. I take an antihistimine (Loratidine - generic of Claritiin) before the shots, otherwise I get an itchy rash on the injection site for 4-5 days afterwards. And let's face it, it's not where you want to scratch in public!
Best of luck with the treatments.
Leah
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Hi Linda, welcome. I've come over to the hydration camp -- did it this month and had the easiest time in quite a while.
The first few times I had soreness issues with the shots, but since I learned the tricks its been easy. No preparation needed; just take a walk afterwards.
I've never had a GI symptom. Some ladies say they get fatigue for an afternoon or so.
Just follow the tips at the top of the thread, and I hope faslodex (and palbociclib) do it for you!
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Thanks for the tips Ladies and good suggestions at the top of the thread! I'm a big water drinker already so that won't be hard to do. I will make a point to do some walking right after also. Good to hear that Faslodex seems very doable for most. I expect the more intense side effects will come from the Palbociclib if I am lucky enough to get the active drug...but that's what I am hoping for. Praying for a good response to treatment for all of us!
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Palbo does not have many side effects. The biggest is a drop in white blood count (neutropenia). It is really a very easy drug to take according to most who have had it. I am in the trial - I think I am on the real drug although of course it is never possible to know for sure. I did have a quick drop in ANC at the 15 day test in cycle 1 but it did not come back up for cycle 2 day 1 so now I am not as sure.
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PS. One other tip from my nurse to help with relaxing the muscle during injection - turn the toes of the foot on the side being injected inward. It is not possible to maintain that position and tense the buttock.
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Hi Lindalou
Welcome to our group! From my experience, Benadryl works very well in reducing swelling and itching from the injections. My oncologist suggested it after I was having some issues with the shots, and it really helps. I take one tablet when I get to the doctor, and then the other when I get home, or I'll be too sleepy to drive.
I take another the first night before I go to bed as well, as the itching seems to be more pronounced at bedtime. After the first day, everything settles down for me, and no more meds are needed.
I hope you have good luck with Faslodex. When it works, it can work for quite awhile.
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had I think my 21st month shots and ended up with a rash on my forearms and chest??? Never had that before!
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Allergic reaction at this late date? Oy! What you describe does sound like a drug rash, and I've had them on my rear, but this is pretty systemic.
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I will be joining your group in a month when I go off taxol and was wondering if you ladies think my hair will grow back on faslodex after it falling out on taxol.
Thanks
smiley
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No hair loss with Faslodex! If your hair follicles are still active, you should have hair once again. [Now, some women do have thinning hair on Faslodex, but if you are bald, that isn't the question.]
Welcome to the group!
*susan*
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I have been on Faslodex for 5 months. My hair has started to grow back in after being completely bald from chemo. It is a completely different color than it used to be, and it is quite curly! I never had curls before:-)
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Thanks to everyone for the good information!
I just returned home from my onc appointment. I am now officially
enrolled in the Paloma-3 trial. I received my first injections of
Faslodex and took my first oral study pill (either Palbociclib or
Placebo). The shots were not bad at all. Only mild stinging during the injection but so far no soreness or pain (only 3 hours later). I did take 400mg Motrin an hour before the injections as a precaution and am drinking lots of water. I am just glad a treatment plan is finally in place!0 -
Linda,
Knowing is not easy, but far easier than the waiting. Hope your pain-free-buttocks stay that way! [Sentences I never thought I would EVER type.]
*susan*
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does anyone get sticking pain at the injection sites when they run, jog, or step more heavily? It seems that this has happened since my third set of injections. The nurse thought maybe they hit the sciatic nerve but seems unlikely because it is both sides, does not run down my legs and is really AT the injection site. If you have had this did it go away on its own? How long did it take? My next injections are not for another two weeks thankfully.
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Hi 20130502, I can't run, so haven't run into that (so to speak). One thing I will say is they're injecting right where the muscles of the legs meet the muscles of the back, covered by the gluteus maximus. If you walk and press in where they inject, you'll discover it's just where the hip is moving.
I get lumps right there from the muscles objecting to the shots. So I can understand you might get pain.
Maybe the nurse could inject in a different spot? Higher or even lower? Mine did that last time (avoiding the lump) and lo! no pain, no lump, no nothing.
Linda, glad everything went well. I hope the trial treats you well. palbociclib has a lot of potential.
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I go to the oncologist Thursday for my first Faslodex treatment post-hip replacement. The entire experience should be interesting, from navigating his building in a walker to standing on my "operated leg" while attempting to relax the other. I will not be able to bend over an examining table as usual for the shot, so I guess I'll just stand up in my walker.
I am doing very well, by the way. I'm off Dilaudid and will take my last oxycontin tomorrow. (Hallelujah!) According to my visiting Physical Therapist, I am ahead of schedule and ready to start working with a cane.
Tina
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Tina,
As you may recall, I didn't do the standing thing for about the first two years of my treatment. Instead, I lay down, face down, on a gurney for the shot. I realize that this means you have to get up which might be worse than standing with a walker, but thought I would throw that out. Or, maybe they can raise a bed so you can lean across it? Just a few thoughts.....
Glad to hear the pain meds did their job, and you are moving on.
*susan*
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Susan, thanks for the reminder. However, lying down would be nearly impossible because of the structure of the doctor's exam tables and leaning over violates the 90-degree "hip precaution." The exam tables in my doctor's office belong in the Smithsonian. They are narrow wooden cabinets with no visible mechanism for raising or lowering. In fact, a friend of mind who used to rep medical supplies said she would visit the clinic he was part of and think "Paging Madame Curie."
I'm gonna stand or lean a bit against a counter.
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Tina, I was just thinking about you yesterday and wondered how you are doing. I wouldn't worry about getting the shot. I always get mine standing up. So, hang on to your walker, slightly drop your pants and proceed to tell the nurse all about your surgery. Just keep talking, and then it's all done. Good luck and happy to read you are doing well!
Teresa
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Hello ladies, today i had my second shots of Faslodex. The first one went in no problem at all, no pain, nothing. But when the nurse was more than halfway done with my second shot, something really horrible happened to me. My hands and feet went numb, i couldn't talk ( my jaw and mouth went numb as well) and i was this close of passing out, i got so scared, i felt awful, even my hubby said he was scared too. The nurse pushed the med quickly and i sat down, had a sip of water and some orange juice and felt better 5 minutes later, she told me that this may be due of me not eating breakfast!? Any of you had such a reaction, i am scared to have the injection next time? I know this is not a normal reaction! Thank you for listening and God Bless you!,
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Tina2, so glad to hear you are up and about, sounds like you are a speedy healer!
Mila, I have had the exact thing happen to me once. I have been doing the shot 21 months. And one I threw up about 15 minutes after the shot. All the other times easy peasy?
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I am joining the Faslodex group this week. I will be taking Faslodex and Affinitor and Aromasin. When I asked my doctor if people actually take all three drugs, he said, "Yes." Has anyone had this combination? I have been on Affinitor and Aromasin for over two years with great success, but my tumor markers are starting to increase and a scan last week showed a spot on my liver. Two plus years ago there were lesions all over my liver, but they disappeared after a year of the A/A medication. Now one is back.
I am thankful for all the advice about taking Faslodex. I am going to try to have my injections on Friday afternoons so I will be ready to go back to work on Mondays.
Take care, and have a happy Easter. We will be having a family barbeque and enjoying some fabulous sunshine in SoCal.
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I just had my mastectomy and reconstruction surgery on April 2. I am scheduled tomorrow for my monthly Faslodex and Zometa treatment. I am still sore from the surgery, and not looking forward to this. I am concerned about accessing my port so close to the recent surgery. I guess I'll be sleeping a lot this week. Thanks for letting me vent here.
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Hi birdlady, they give Faslodex through your port? I thought it is meant to be injected into the muscle. But if they do you'll be spared any butt pain.
Good luck!
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