Faslodex Girls Thread
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Julianell,
I was diagnosed stage 4 in January and started Faslodex and BKM120 in February. I have mets on sternum, lungs. Only side effect from Faslodex seems to be headache day of....I drink lots of water and walk around after I get injections. I got it three times within 28 days to start, and that third set of injections made me want to lie pretty still and rest that evening.....I don't feel much from taking the BKM120 pills. I'm hoping I am getting the drug. I am getting EKGs and scans and extra labs because of the BKM120 trail...that seems good. Insurance pays for most of the rest, but not all....expensive! I also get an XGeva shot monthly for bone strength. That stings a bit. I feel pain much of the time in my chest, but that seems to be expected. I take Tylenol extra strength for pain and Ativan at night for general anxiety about this. Just upped the Ativan to 2 last night.....I can enjoy my days, but nighttime is hard. No fun thinking about cancer. Good luck to you.
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Mary,
I take a multivitamin, baby aspirin, Vitamin C, Vitamin D3 and Citrical Petites.
I have made no dietary changes since my Stage IV diagnosis. I eat well and sensibly ( but probably too much for my size and decreased activity level). My diet has been pretty much Mediterannean for many years: lots of fish, little red meat, dairy in the form of yogurt and cheese, greens, grains and fruit. I dislike fried stuff. I'm not fond of pastries or desserts, but a fool for tortilla chips and certain chocolate candy. I drink wine.
Tina
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I also have pt. I started last august because of pain and walking problems and after I " graduated " at 90 percent better I joined the next step program at my pt place. I have continued to go three times a week and do the same exercises on my own. I know it helps because when I miss the leg pain will start to come back. I do my exercises in the pool.
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Tina, the hip replacement is coming up isn't it? Best of luck to you! I hope it all goes smoothly. Your body will be out of whack from the anesthesia so maybe zero hot flashes!
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Hi everyone, just wanted to stop "in" and say hi--as of yesterday I became a member of the "pack". Hurt a lot last night and sore today, but truth is I'd put up with a lot worse if it helps keep this cancer at bay (as I'm sure most of us would).
Did any of you happen to do badly on tamoxifen (I'm thinking about progression, not side effects) before doing ok on Faslodex? My onc and her nurse practitionar both assure me it can work that way a lot, and I hope they're right, but it still makes me a bit concerned.
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Aromasin failed me, but Faslodex has been great, for going on 4 years now. Not exactly the same, but does answer the question, can you do better on one hormonal when another has stopped working.
Welcome to the Fanny Pack! Hope you get a long ride with us.
*susan*
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Thanks, Susan--that actually makes me feel a lot better! I'm hoping for a long ride with you all, absolutely (fingers crossed).
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Roses, I was on tamoxifen for three years before they diagnosed Stage IV. Onc now thinks that the "spot' found on the original CT which they dismissed may have been MBC. in other words, that tamox lasted three years. I'm on Femara and Faslodex now, so far a year with the last scan "no active disease detected".
So I'm actually hoping that each hormonal can last a long time. . .
Different mechanisms of action -- need to find the mechanism your tumor uses. No reason Faslodex shouldn't do the trick.
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Yes, Pam, I go to the body shop for repair on Thursday morning.( Too bad I can't get a new paint job while I'm there.)
I am both excited at the prospect of getting rid of the constant arthritis pain and scared by the thought of hospitalization.
Since I can't take NSAIDs pre-surgery, the other night I finally caved and started taking Tramadol, which I had long put off taking because of its possible SEs. I discovered that it actually gets me through the night, which is a quasi-miracle. However I took one yesterday morning and felt under water for a while, which I did not like. I am going to tough out today as I have a long car trip to a memorial service in Pennsylvania.
I will check in later in the week, dear Fannies!
Tina
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Roses,
I'm grade 3 and completely failed Tamoxifen (TMs went from 800 to 2,600!). However, I'm what's called a "super-responder" to Faslodex. In the first two weeks, I regressed, continued to do so, and I've stayed stable for about a year now.
I do mean to ask the MO what that means about my particular cancer profile.
All the best,
Jennifer
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pajim, Jennifer, thanks so much for the encouragement! I'm not one to believe that "hope" can change my outcomes, but it sure makes me feel better.
I went from no visible mets on my pre-chemo PET-CT to a number of them on unrelated bones a year and a half later including 13 months on tamoxifen, so while I'm trying to stay positive, I can't help feeling some doubt. So glad to hear past tamoxifen performance isn't future destiny!
Tina, wishing you a nice, easy, and successful surgery!
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Hello lovely ladies! I had my first shots of faslodex today......Guess what, i let a student nurse give me my first shot and he went into a nerve, i couldnt step or move my leg.....The second shot was given to me by the nurse and had no problems at all, not even pain.Now i am left to deal with the nerve pain:(( I started Aromasin a week ago and have bone pain, is this nomal? Thank you!!!
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Cycle 2 day 1 tomorrow .... why am I so nervous - this will be the third round of injections so I already know I 'can' do this - and it is not as bad as I anticipate.....
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Well, after 1 year and 10 months, I am leaving you guys. Faslodex has failed me. My scans a couple a weeks ago showed to new tiny lesions on my liver (never had any there before) as well as 6 nodules in my left lung (had 2 there before, but all had disappeared while on the Faslodex), as well as my lymph nodes enlarging. My oncologist here in NH wants to put me on Xeloda, a chemo pill, and I will be still getting my 1/2 hr infusion of Zometa. I am seeing the Dana Farber breast oncologist in Boston Thursday to see if she agrees with that as my next treatment.
I won't miss those awful injections, but I am sad that the first treatment has failed me. I just hope each future treatment lasts at least as long as the first one!
Good luck everyone!
Lynne
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Tina, is today the big day for your hip surgery? Good luck and am sending you warm thoughts and love.
Lynne, sorry to read that you are leaving us. You were my hero and perhaps you still are. Could you continue on here with a discussion of your new drug or let me know if there is another board with this drug?
God, this cancer is scary!
Teresa
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Tree, my surgery is tomorrow. Thanks for the good wishes. Today I am packing, scrubbing and trying to prepare myself for weeks of more than the usual weirdness. I'm a big believer in protective coloration when in unfamiliar/indifferent environments, so I had my gray hair touched up and am getting my fingernails painted Big Apple Red today. I bought a pair of cute black and white slippers.
Frankly, I am dreading dependence more than pain. There are meds for the latter, but no remedy except time and patience for the former.
Of course I feel absurd expressing nervousness about a hip replacement--of all things, on this forum--of all places. Thanks for understanding, ladies.
Tina
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Tina, of course you're nervious! It's a major (if routine) operation! They'll have you up and walking day after tomorrow. Hopefully you won't feel so dependent when you can move around? Just do all the exercises they give you! (I know a couple of people who had this done -- they all wonder why they didn't have it done before).
Lynne, so sorry to see you go. I hope Xeloda kicks those nodules to the curb.
Mila, welcome! It seems likely that hitting the nerve was accidental and not due to being a student? He or she probably felt worse than you did (nothing worse than hearing the patient go "OWWWW" -- I have a story along those lines about me and the radiologist doing a biopsy. She may still be shaking). I don't know much about where the nerves are in the rear end.
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oK, I have a question to ask, as it's been bugging me for awhile. During my monthly lab tests with shots two weeks ago, my test showed that my liver count was up. My onc said normal is 1 and mine showed 1.1. He also said it's probably nothing but to come back for more blood work in two weeks. Tomorrow. Now I'm worried. Has anyone experienced this. Do our liver counts fluctuate?
Teresa
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Teresa, my liver counts have been up and down. I know when I was first diagnosed, and trying to find an aromotase inhibitor, that I didn't have side effects with, they decided to try try tamoxifen (even though I had decided to have a hysterectomy and my ovaries also removed and was now post-menopausal). My liver counts went sky high and I had to get off of it (of course, I had felt great on it!). They never said anything to me when I was on Faslodex, so I'm assuming that my counts were ok (since we go to the same place). Maybe Faslodex acts on you as tamoxifen acted on me? Ask, next time you go. I will keep you updated on how I'm doing with the new treatment. : )
Tina, I hope you have a quick recovery with your surgery. I know a few people who have had this done, and they all said that they feel so much better. Good luck!
Pajim, thank you for your kinds words!
Lynne
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Hi Jennifer,
I'm glad to hear that you have been stable for a year, that's wonderful. I'm curious though. You said you were a
"super-responder" to the Faxlodex. I'm assuming you mean that you responded 'very well' to the treatments. Is that right?
If so, how do you know that you responded so well. I've been on Faxlodex/Arimdex for six weeks now. I feel really good, but
I'm a bit frustrated because I don't know if the treatment is really working. I assumed I have to wait for my next PET scan. Is there another way to know that your body is responding well to the treatment. By the way, my tumor markers are normal.
Phyllis
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Hi Jennifer,
I'm glad to hear that you have been stable for a year, that's wonderful. I'm curious though. You said you were a
"super-responder" to the Faxlodex. I'm assuming you mean that you responded 'very well' to the treatments. Is that right?
If so, how do you know that you responded so well. I've been on Faxlodex/Arimdex for six weeks now. I feel really good, but
I'm a bit frustrated because I don't know if the treatment is really working. I assumed I have to wait for my next PET scan. Is there another way to know that your body is responding well to the treatment. By the way, my tumor markers are normal.
Phyllis
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Home from 3rd round injections. Actual injection was not bad. In fact, this nurse shared a new tip I had not heard before. Turn the toes of the foot on the side being injected in. This makes it impossible to tense the glut muscle on that side. However, I did not have time to walk around for 20 minutes before climbing in the car to drive home and that was somewhat uncomfortable. Still have burning sensation now. Any advice from you experienced ladies?
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2013,
I just assume that every month will be different. Walk, don't walk, eat right after, don't eat right after, drink water, don't drink water.... there is no way to make the injection a consistent experience for me. Well, there is the consistent nap the day of. I should be having my injection tomorrow, but instead I am flying to Atlanta. My body knows that tomorrow is the day, and I will find out how disappointed it is not to receive the shot.
lucy,
I knew I was responding because my scans [and tumor markers] said so. I am a bit of a control freak, but learned years ago that there is no control with the whole cancer experience. Sometimes you just have to let go and let your body do its thing. Doesn't help you much I know, but it is the best we can do.
*susan*
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Lynne, so sorry you had that progression. Praying for you and hoping the Xeloda does the trick now.
Tina, hoping everything goes swimmingly for you with the surgery and that you're feeling better soon.
Teresa, I remembered reading somewhere about Faslodex having an effect on the liver itself (as opposed to cancer causing trouble) and went back to check the source. It was when I was reading about side effects on the Faslodex site here. Here's hoping that's all it is and nothing bad.
Tomorrow makes 1 week since the shot--was kind of a rough couple days right after, but feeling fine again. Next shot next week and I hope the side effects get a little easier!
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Phyllis,
My MO called me a super responder because my TMs started dropping immediately after treatment commenced. Sometimes it can take weeks for Faslodex to make an effect.
MY TMs are very diagnostic. Some people's never budge, even when they have mets. Since your TMs seem to be of that variety, you do have to wait for the scans to speak.
Apart from that, how's the Faslodex treating you?
Jennifer
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Jennifer, I must be a "super responder" also. The first month my TMs went from 555 to 434. I had them taken again today so I should know at the beginning of next week how it's going. I had my shots today and my nurse continues to have magic hands so I have almost no pain during the shots and none after.
Tina, I hope the surgery goes smoothly and you're able to recover quickly. I once read a survey of patients asking about their satisfaction with different surgical procedures. Hip replacement patients were the most satisfied with their outcomes.
Leah
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Jennifer,
I’m assuming the Faslodex is working because the pain in my hip and rib is almost totally gone. My doctor says that’s a good sign. I will just have to wait for my next scan to see how it’s going.
I’ve had six shots of the Faxlodex so far, 2 shots every 2 weeks for six weeks. This month I will receive 1 shot. I always experience soreness at the injection site as well as lower back pain, sligh theadache, and some constipation. My biggest problem is the hot flashes. They’ve gotten so bad that I’ve decided to try acupuncture. I have my first session next week. All-in-all my symptoms are not so bad.
I also get a monthly injection of Xgeva. I wonder if anyone else is being treated with that. Like all medication this injection has its own set of side effects.
Phyllis
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Phyllis, I get Zometa -- a bisphosphonate. Xgeva is a RANK Ligand inhibitor so a different mechanism of action and different side effects. Most of the time I have no idea if a certain side-effect is due to Zometa, Femara or Faslodex.
Glad your pain is going away!
I had round 16 yesterday. Quickest easiest trip to the cancer center I've ever had. New nurse (again); she managed to avoid the lumps.
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Hi pajim,
I agree with you, it difficult to know which drug is causing the side effect.
YEA for round 16, that means you must be doing well.
You always have to find a positive in whatever challenges you are faced with. A monthly injection is my far much better than the typical type of chemo we have all been though when originally diagnosed.
Glad they avoided the lumps!
Phyllis
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I've found that massaging the area after the injection has been helpful to me.
Phyllis
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