Faslodex Girls Thread
Comments
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went to what I thought was going to be a hoakie Saturday nite dinner show with an Elton John impersonator. It ended up to be so much fun.....looking at life through different eyes! Life is so precious and so are these experiences.
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RosesToeses, thanks for wishing me well with my new and hopefully long journey taking Faslodex shots. I would like to know the general consensus of y'all with regard to the length of time each has been taking Faslodex shots please. Also, can anyone relate to me with a similar diagnosis, Stage 4, sternum mets, lung mets, and spot on 4th rib and 6th rib(opposite side)? I had breastbone area pain, on, and off, started in early Nov. 2014. My oncol. ordered a Cat Scan at that time. No progression was found. By the time Dec. came around, I continued with pain in that area continually. My monthly appt. with my oncol. was middle Jan 2015, at which time he ordered another cat scan. I had to wait a week due to their schedule. The results showed progression in several areas, but, not very much at all he said, and, in additional spot or two, one lymph node affected as well. But anytime they see any progression, that means the previous cancer drugs are not working. So here I am. I'll be waiting to hear responses from y'all as to the number of months/years you have been on Falslodex only, or with another combo, and the response you are getting. Thanks everyone. Wish me luck tomorrow.0 -
Nature,
I had my first progression May 2010 while still taking my 5-years of aromasin. In fact, I was about three weeks shy of the five year mark. We added a single shot of Faslodex [standard at the time, no loading doses.] Moved to the double shot two years later, and 6 months after that I dropped the aromasin. I felt that aromasin had failed me, and the side effects had gotten worse and worse. I have just had another progression, which might be termed minor though it has moved to another "system." We are waiting 3 months for another scan. Doctor feels that as long as the mets progression is "controlled" we can stick with the Faslodex with more frequent scanning. So, for me, I got 4 years and 6 months, 59 28-day blocks, without any evidence of cancer in my body.
As to length of the shot, for me, at least a minute per shot; longer is not bad. Too fast or too cold and I pay a significant price.
Welcome to our group. May Faslodex be kind to you.
*susan*
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Hi susan 02143, thanks for your response. Yes, Faslodex has gotten you down your path 4 1/2 years. Wow! That is so good to read, and so encouraging for the rest of us. Thanks my dear! I'm hoping for you that your next cat scans will look great and you will be able to continue on many more years with Faslodex doing it's job. May I ask you where had your cancer spread some 4 1/2 years ago? Is your cancer in any of your organs?I would like to hear from other Faslodex users as well with regard to length of time they are on it, with similar diagnosis to mine.
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I have had 3 doses...and I'm also now on the Red Demon (A) along with bone booster I forgot the name of that one... The Red Demon Kicks my ass more...I can't tell you anything about Faslodex...cuz I have such se effects from A....Have 4th dose this mth...
I have to have weekly treatments of A for 2 to 3 mths...I hope I can survive....I have bone mets then recently has spread to my liver...about a mth ago...
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Hope you will do better freebird, and soon.Faslodex users, step up please in hopes of participation with regard to what I asked, i.e. length of time on Faslodex without progression. Those who have similar diagnosis to mine, I'd love their input as well, i.e. bc that has spread to sternum and lungs. What's your body's response to Faslodex with sternum/lungs?
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I've only had the loading doses of Faslodex with my regular monthly shots starting next week, so I don't know how effective this will be. However, I had lung mets (actually in the pleura) when I was diagnosed and had 45 months on anastrozole before the cancer showed up in my shoulder blade. I hope my run on Faslodex is at least as long. It's been pretty easy so far.
I won't know much until scans in April, after I get back from my trip to Australia and New Zealand. I'm determined to go, so no news is good news.
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Hi Faslodex girls;
I received my first shot last Wednesday and I'm ill as a dog since: nausea, feverish, terrible intestinal cramps, vomiting, ... Did anyone experience this after the first shot? How long did it last?
I am combining faslodex with a double blind randomized placebo controlled trial LY2835219, . So maybe I am not receiving the placebo or if yes, the SE are due to only to faslodex??
Thank you for your valuable help!
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Solala,
Welcome to Faslodex. The side effects that you describe seem quite dramatic for Faslodex. Vomiting is quite unusual and should generally be reported to your medical team. There are drugs out there to help with both the nausea and vomiting.If I bet, I would bet that you were randomized to the actual LY drug.
*susan*
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Solala, I just had my second injections Thursday without LY2835219. I was offered the trial but declined because I live in a rural area and travel to the clinic for the extra visits was going to be pretty cumbersome. After my first injections, I had a fever chills and severe flu-like symptoms that night and the next day. I also had nausea and some vomiting. I have Zofran oral dissolving tablets for that and it really helps. The second day it began improving and gradually disappered over the next three days.
On my second set of injections last week, I felt pretty bad the next day. Nausea, vomiting, and aching arms and legs. I only had nausea two days after the injections but was still feeling achy three days later. We will see how today goes. My biggest problem is the fatigue. I know I was having a lot of fatigue before Faslodex but feel like it is much worse since I started. The other symptoms have improved over a short period of time after the injections but the fatigue hasn't. I hope things improve for you.
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Sarah, Distressing to hear that you too are having such issues with the Faslodex. I am going to go count my lucky stars now.
Hope that both of you have better and better days as your body adjusts to this drug.
*susan*
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My SE were body aches and pains, mild flashes and weird body odor for about two weeks. Sorry you are having such severe SEs.
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I also get the mild body aches and pains, hot flashes and odor too. But only for 3 days after injections.
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Naturegirl, I'm coming up on two years of shots. Used to have mets to the spine. I'm hoping to be on them as long as Susan and Tina.
Solala & Sarah, I'm sorry you're having such trouble. The shots don't bother me at all (except for the smell). The thinning hair was annoying, as was the weight gain, but those are minor issues. With luck you're body will get used to them and you won't have nausea anymore? Meantime you should get anti-emetics from the docs.
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Dear Sarah, Susan and the others;
My onc told me today I should quit the LY2835219 for 2 days, saying that it is not common for faslodex to have this kind of SE... I am confused now ...
But we will see. Sarah let us hope it gets better gradually like Pajim suggests. Do we have a choice?
I live in Europe, so good night to you all.
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I have been on it for I year. I ache a little for a couple of days and that is it. I am very stiff after sitting for a long period but I think that is arthritis. I have Mets to the bone only from theget go. Barb
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I have mets in the lining of my left lung and have only been on Faslodex since November 7, 2014. My next scan is the 16th of Feb.
My left hemisphere aches when I sneeze or cough. There's a small possibility that the capsular contracture on my left implant is causing the problem.
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A general question: who is working while on faslodex? is this feasible?
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I work full-time. I have my own business and can generally work about 50 hrs a week. I allow myself to take injection day off, and the next day is less productive since I need a nap. Since it is just me, I can adjust as needed. This year, I have had too much work for one person. In the perfect world, I would be working a few less hours.
*susan*
p.s. where in Europe are you located?
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Nature Girl 2, In 2007,I was dxd with IDC, stage 2b nodes2/23 followed with lumpectomy, ER+, HER2+ Chemotherapy, plus Herceptin, Radiation therapy. 2007. Then 5 yrs on AIs . 2013, DX Pleural Effusion....mets to lung ER+, Her2+ Stage IV. January 2014 started on Faslodex, Herceptin My TMs CA27/29 have stayed in the 50s Jan 2014 to present.. No s/e from the Faslodex other than tiredness two days after the injections. How have you been since lung dx? I hope that we have a successful run on the Faslodex for an extended time.
All the best. Peggy
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Hi Susan 02143, I live in Belgium, Brussels.
Working full time too - not for my self but with a lot of responsibilities so sometimes 50h/w too, not sure how long I'll cope with that ....
For naturegirl and momonana6: I was dx with bone mets: knee (2013) , pelvis + 5 locations on the spine (dec. 2104) (between neck and sacrum), so for the moment not in the lungs...
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Solala,
Hope your symptoms improve without the other med. I don't think mine were quite as bad after the second injections and am hoping they will get better over time. Like you, considering some of the alternatives, I can live with these side effects
I must say, there may have been some psychological component to my reactions to the first injections. I had a fairly easy course of treatment with my first diagnosis in 2009 and my injections were the first time I had ever entered an infusion room. I had a nearly complete meltdown. It wasn't that bad the second time. I worked closely with my Mom's hospice nurses during her death and have always felt that they must be the greatest people on earth. I am now finding out that oncology nurses are right up there with them.I too was self employed with some flexibility to my schedule and loved my work. However, I quit work and applied for Social Security Disability 5 days after my stage IV diagnosis. I think I could have kept working but would have spent all of my energy on work and just survival. I have many other things I would rather do with my time and am fortunate that I could quit. I have to keep a sense of humor and have joked that my recent diagnosis is insurance that I won't outlive my IRA. It may be rather morbid, but I strive to find something that makes me laugh each day.
Hope everyone is having a good day. It is cold here but the sun is shining and it is beautiful.
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INFORMATION FOR THOSE WHO WILL BE RECEIVING FASLODEX FOR THE FIRST TIMEI had my first injections yesterday. I was surprised to learn I would be rec'ing 2 injections rather than one. (I previously have read from the beginning of this thread and have gotten to page 10, there was no mention rec'ing 2 shots in one visit) the nurse asked me if I wanted both injections at the same time, she'd get another nurse to help her, or do I want one injection at a time. Not only was I surprised that I would be rec'ing 2 injections, I had to do some fast thinking as to whether or not I wanted both at the same time or not. And, if I wanted both injections on the same side buttocks. (unfortunately, I cannot sleep on one side of my buttocks, that's why I was concerned) I asked her what do most patients do, and she said a shot on each side of buttocks. Whew, I opted for injections one at a time, given on each side of my buttocks. The nurse warmed both shots in the palm of her hands. I asked her to give each shot slowly. I counted how many seconds she did, one side 20 seconds, the other side 28 seconds. I was ill prepared for the knowledge I thought I knew with regard to receiving these shots. I asked her more questions; i..e. if everyone gets 2 shots for each appointment, she said yes. Each shot contains 250 mil, so totaling 500 mil. Everyone gets the same amount as well. So an eye opener for me yesterday for sure. I did fine in rec'ing these shots and have had no problems so far. Thank goodness!
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nature,
sorry you were surprised. I know it has been mentioned on this thread fairly frequently that there are two shots. In fact, my posting from Feb 1 mentions that I went from the single shot to the double shot, but perhaps you thought they had added more to the original syringe when the protocol was changed?
Glad you feel well.
*susan*
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Thanks for all the responses girls!carpe diem, wow, 45 months IS a long time on one drug. I hope you do as well if not better on Faslodex. Let us know your results in April. Have a wonderful trip!
solala, sorry to read you had SE with your Faslodex injections, and I'll bet too your are on the trial drug. Thanks for your input.
sarah0915, sorry to read you too had SEs your first time out with Fasldex. Hope you girls feel better soon.
pajim - wow, close to 2 years, that is great. Hope you have many more good years on Faslodex. Are you taking Femara along with getting your Faslodex shots? Gives us newbies hope.
Barb312, 1 year sounds good! Here is to many more!
Adnerb, please let us know how you do with your upcoming CT. Hope all is well for you.
Hi Momonan6, 5 years on AIs was great for your. Sounds like you are stable since taking Faslodex. You asked how I have been doing since lung diagnosis. I was diagnosed Stage IV in Nov. 2014 which was in my lungs, sternum and a spot on one rib. I am doing good I'd have to say. I did have a rough 2014 with taking Afinitor/Aromosin along with getting Xgeva shots (10 rounds). Between the Afinitor and Xgeva, I developed osteonecrosis in the pallet of my mouth. It was a horrible experience. I had to have a dying bone removed from that area the week of Thanksgiving last year. I have to say I'm doing better now. I'm hoping Faslodex will be the lucky charm for me, as I'm sure every one of you hope for the same.
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naturegirl2, fortunately I knew I was getting 2 shots the first time I went in. But, not knowing how bad it would be, I opted to have one at the time also. I switched to both at one time on my 2nd injections. I did ask to lay down so I could completely relax and it went really well.
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I had my second 2 shot loading this morning and all went well - I remember reading on this thread months ago about the two shots and the things we should do (and what to expect from the nurses) and it was very helpful - my nurse is fantastic at the shots and so far no se's (nor do I expect any) I wasn't tired last time - I must say that I keep on my feet the day of the shots though and I think that helps - I have a new dog in my life and she needs to be walked four times a day (she is a rescue and that is what she is used to) so there will never be any rest for me until she slows down somewhat - she isn't a puppy but she's still quite young and very active. I am hoping that Faslodex is kind to me - it's certainly easier than the Afinitor/Aromasin combo!
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Solala, I work full-time and have done so the entire time. I did cut back a little -- to about 40 hours a week (more this week). I can walk from my office to the cancer center so I wander over and get my shots each month then walk back. I have very understanding bosses. The attitude here is "whatever you can do, whenever you can do it". I don't do the really high profile, high stress projects anymore (my focus and attention span aren't up to it), and I find that I don't miss them. Life is "back to normal" so most people have simply forgotten all about it.
Naturegirl, you can find the data on the Faslodex/Femara combo here: http://www.nejm.org/doi/full/10.1056/NEJMoa1201622
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Sarah, glad you knew in advance about the dosage and you chose the right way to go with what side to use.208Sandy, hi there, I thought your name looked familiar. I too took Afinitor/Aromasin combo and have seen you on that topic thread. How long did you last on that? I took the combo for 6 months, then had to drop Afinitor during the 6th month, but continued on with Aromasin only until last week. Hope Faslodex treats you kind for many years! So far, so good, with me with regard to SEs. None at this time! Next double shots are Feb. 16th. Will keep everyone posted! Thanks everyone for this Faslodex Topic Thread!
pajim, thanks for the link!
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I work the same 30 hrs a week I did before Faslodex and don't see any reason at all why it would get in the way of any job for me, except for the 1 day a month where I see my onc and get the injections and the scan day every 3-4 months. I guess I've just been really lucky, but aside from going to bed a little earlier 2 days a month and drinking more coffee sometimes, it's just business as usual around here
Hoping Faslodex does great things for our newbies (well, for all of us, really!)
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