Faslodex Girls Thread
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It is three years this month for me on Faslodex, with no progression (although no regression) of my bone mets.
I'm curious if anyone knows of someone personally that has remained stable on Falsodex for many years. I don't even know how long it has been available.
Tina is three years, like me, and I think susan is longer...am I correct ladies? Does anyone know of someone who has been five years on this medicine, as the primary med? I'd love to hear some inspiring stories, as I'm hoping for some more years out of this drug.
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LuAnn got seven. I am on 4+. Anyone remember how long Denny got? Quite a bit, as I recall. *susan*
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Thanks, susan. I don't remember Denny, and can't find her through the search. I do remember LuAnn, but couldn't remember how many years she got.
Do you have any idea how long the drug has been available, and commonly prescribed? I imagine LuAnn was one of the early ones.
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A while ago my oncologist told us that he has a patient who has been on Faslodex as her main treatment for nine years. He continued with "We touch her up with chemo once in a while and she's doing fine."
From the length of time my doctor has indicated that he's worked with Faslodex, I'm fairly sure he was involved the clinical trials, but can't say if he participated in the initial trials, the trials for the larger dose or both. My hunch is both.
Tina
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I have to tell you, Tina, that Little Lulu was my favorite comic character growing up. Every time I see your posts, I smile.
I used to be so happy when the drugstore where I bought my comics got in a new Little Lulu. That, and Casper the Ghost. Memories of my carefree elementary school days, sigh. :-)
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Sandilee,
I too loved Little Lulu comics and would be delighted when a new issue arrived at the drugstore. There went my allowance! Many Lulu stories were slyly subversive. She was kind and clever, but often mischievous. My favorite stories were those in which Lulu served as storyteller to Iggy and Tubby and the other kids, telling tales about the resourceful, brave "poor little girl" who always saved the day. The only difference between the poor little girl and Lulu was a little patch on the former's dress. The kids in her stories were always the friends she was telling the story to, just in different outfits. I recall being terribly tickled by this.
Do you remember that Little Lulu shilled for Kleenex? I have a small cardboard display of her holding a Kleenex tissue. It sits on my bookshelf.
Tina
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I had no idea about the Kleenex. That sounds like a valuable piece of Americana! I wish I still had some of the comics I loved so much.
Your memory is amazing, Tina. I honestly can't remember much of the story lines- only that she was brave and resourceful, which was great for little girls to see, since so many other feminine characters of the times were not as strong as Lulu. You make a great Lulu, Tina!
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Sandilee, that is the best compliment I've received in many a moon. Thank you.
While we're at it, let me thank you also for beginning the "What are you doing for fun?" thread, which I find the sunniest and most inspirational spot on the forum.
Tina
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I just had my second loading shot of Fas, Nurse Jennifer did a wonderful job, and I didnot have to tell her to slow down, the shots had no pain or discomfort. Jennifer told me to lean the weight on the leg getting shot because the shot is supposed to go into a contracted muscle. It is just oppsite to the conclusions our Fanny Pack said "Take the weight off the leg on the side of the shot. Relax that cheek/leg as much as possible." Does anyone have comments on leaning on the weight or taking off the weight to get more comfortable shots?
I will get my Xgeva next time Fas is injected. I was told there are two choices, in the arm or stomach. From your experience, which location is less painful?
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I have been following the fanny pack advise and keep the weight off the leg getting the shot. Trying to put an intramuscular needle (IM) into a deep muscle is much easier when the muscle is relaxed and not contracted. I have given many IM shots as a nurse and we always told the patient to relax and not tense up prior to the injection. Once the shot delivers the medication into the muscle, THEN is a good time to use that muscle...walk around, go upstairs or massage the muscle to help evenly distribute the medication. As long as the proper length IM needle is being used to reach through the fat tissue and into the actual muscle, I think the patient will generally have less soreness and irritation if the muscle is relaxed for the injection.
When it comes to your Xgeva shot or any shots that may cause inflammation or induration with pain (such as a flu vaccine), I avoid my arms completely. I already have stage 2 lymphedema (LE) in the left arm and have early stage LE in the right, so I have been getting standard injections in my upper thighs for over 8 years now. Remember that if you have had bilateral mastectomy or nodes removed on both sides you have a lifetime risk of developing LE on either side. Practicing risk reduction when possible is no guarantee you will never get LE but may be helpful. In the case of Xgeva if the only choice is arm or abdomen, I would choose the abdomen.
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LindaLou, thanks for your advices, especially from a professional view. I never had shot in abdomen, can't image how it is done. Since my left mastectomy, right arm has taken all shots and pokes, sometimes the right arm is pretty bruised. I may have to take shots in other part of the body.
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Cling, I have had many Xgeva injections in the abdomen. They use a short, fine needle, and it goes in the fat below the belly button on either side. Some of them I didn't even feel.
I had my Faslodex/Zometa treatment on Monday and this is the worst I have ever felt! Lower back pain was almost unbearable, and I felt like I had the flu. I managed the nausea with Phenergan, but even the strongest pain pills only took the edge off the back pain. I slept most of the day Wednesday and yesterday in my recliner because flat bed was just too uncomfortable. Poor DH took off work, and slept on the couch to be near me. Dr. didn't seem concerned...just said to rest and stay hydrated, take pain meds, eat light, and it would pass. He was right, but it didn't make it any easier. I keep hoping that each month the SE will be less, but that hasn't happened. Any suggestions from my fanny pack sisters would be appreciated. How do you deal with these SE? I have a scan in a few weeks. As long as this combo keeps working for me, I will endure the SE, but it makes it harder to show up every month for the treatment.
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I am joining the fanny pack girls! I have been on Arimedix (Anastrazole) for 2.5 years and had a progression in lung and bone mets so I was offered two options: a trial where 50% are given Aromasin with Enzalutamide and 50% Aromasin with a placebo OR move on to Faslodex. I opted to move on with Faslodex. Thoughts? My thinking was that I did not want to risk being in the placebo group. I figured if they thought Aromasin was right for me, they would have recommended it alone instead of the trial. I would love to hear other perspectives on this decision I just made. Thanks all!
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I was on Aromacin, alone and had some progression after 1.5 years now am on Aromacin plus Faslodex, had improvement on last scan. I don't seem to have any major side effects, so the change has been good for me. Good luck, Toni. Wilsie
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Toni, I was on Aromasin for 8 years but found out in March it was no longer working and I was stage IV. My onc felt that to switch to either Femara or Arimidex would be too similar to the Aromasin. She said Faslodex works in a totally different way than the AI's and it was more likely to "shake up and confuse" the cancer cells, hopefully enough to stop progression. I am now in a clinical trial using Faslodex + Palbociclib / Placebo. My recent 8 week scans show no progression and in fact some slight shrinkage in the nodes. I think Faslodex is a good drug and several ladies here have been on it for many years with stable disease. Welcome to the fanny pack!!
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Toni. Aromasin and Arimidex are both aromatase inhibitors. Same mechanism of action. Faslodex is an estrogen receptor antagonist -- different mechanism of action.
Enzalutmide is an androgen receptor antagonist, so if you'd been on the active arm of the trial you would likely see some effect, but on the placebo arm it's hard to tell. Maybe a switch within a class of drug would work. Worst case would have been you showed progression at the first scan and had to drop out for Faslodex.
I personally think that you made the right choice. Depends on your tolerance for risk (and being willing to sit tight until the first set of scans).
They didn't offer one of the Faslodex+something else trials? There are several going on. Usually you have to fail one of the aromatase inhibitors to get into them.
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So the SEs I thought I was having - I wasn't. Or I should say, they weren't SEs. The aching in my back and pelvis got a lot worse and then I gor a fever. A lot of people around here had the same thing. Some sort of virus, it seems. You'd think we'd get a pass on this stuff with Stage IV but no such luck.
I had my regular shots on Thurs with no pain (thank you Nurse Tanya!). I also relax the muscle where I get the injection.
Leah
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Leah, this is going to sound all wrong, but congratulations on the virus, hooray! Viruses won't return every month and they bring aches that have nothing to do with progression, so great news
Hope it's not too bad, though. Feel better soon!
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Thanks Roses! That's what I figure, too.
Ever notice how we say the weirdest things to our friends as a result of BC? "Congratulations on the virus! Glad to hear it's degenerative disc disease! Pneumonia isn't so serious!" And when we mean it, and glad to get those messages, too.
Leah
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Gals - thank you so much for this discussion! I learned a ton!!! So as it worked out, I may be able to start Faslodex this week - waiting for some dumb insurance thing! Don't get me started on insurance. I might go all Charles Dickensonian on you! Thanks for the tips on the injections. The nurse that does my Zolodex and Xgeva is an expert so I have high expectations on her handling of Faslodex. Is it two shots per month - one in each cheek - or it is one shot per month and alternate? I know when you start, you build up so I think I have one every two weeks to start.
Ladies, I am here in the Chicago suburbs and can tell you it is absolutely lovely out! Hot, but sunny and breezy! Great day to be alive! XXOO
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you get two each time. She offered to put both on same side, and also offered to get another nurse to give me 2nd one while she was doing first. I don't have that hard a time with it, I just talk the whole time to distract myself and take one, then the other. Not so bad at all.
Wilsie
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I have two nurses, one on each side, give them to me at the same time. I like getting it over with all at once. It is uncomfortable, but not unbearable. Good luck, and welcome to the Fanny Pack. I hope it helps you, Toni.
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Toni, you'll get what is called a "loading dose" of two shots twice in the first month of treatment, then two shots--one in each cheek-- every month henceforth.
Welcome to the Fanny Pack. There are many women here who have had good, long runs on Faslodex.
Tina
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Great! I am eager to see if it can at least keep things stable! I had a great 2.5 years on arimidex. I can string a whole lot of 2.5 years together and make a happy life out of that so if I can get at least that out of Faslodex, I will be very very happy!
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I will be joining the group soon. Pet/CT on Wednesday, then a trip to the Clinic on July 9th. I got 3 1/2 years on on arimidex but showed a little progression on June CT. I have been reading this thread for awhile, just knowing my turn would be coming. Thank you all for the information. It has been so helpful.
Toni, I have mets to lungs also.
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Welcome ninalee!
Went in yesterday for my 16th set of shots, and heard two interesting pieces of news. First was great. Onc feels that the data about zometa every three months after a year of every one month are good enough for him. That means they only have to place an iv every three months. Yay!!
Second was that scans are due next month (last set was Jan), and he says meh. You're doing great, last scan was great, why bother? Maybe September. Now I find I have more anxiety than I did about having the scan in the first place. I do feel fine and am having zero problems, but. I'm not sure but what. Will need to think about that for a bit.
Anyway, I woke up feeling quite ill at about 3:30am. Metallic taste, upset stomach. Maybe it had something to do with the big piece of hubby's birthday cake I had last night. :-)
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I know how you feel, Pam. In August it will be a year since I've had a scan. My onc went from three months to six to open-ended this summer because of my hip surgery. Now I have a kind of low-grade non-scan-anxiety!
Interesting, this recent tendency of some of our oncologists to postpone scans because we're "doing great." Is this a trend resulting from new research or concern about subjecting patients to too much radiation? Or is their decision influenced by the limited number of annual scans that many insurance plans will now cover?
Tina
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That, Tina, is the million dollar question isn't it?
*susan*
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I have always had CT scans with contrast every 3months. Last CT was ordered without dye. My onc said it was to protect my kidneys. That may be because of my age..75. I am having a CT/PET tomorrow, so that should show if anything is new. I'm soothing my anxiety with a cup of Chia Latte, and it seems to be helping.........a little.
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Tree,I have CT scans every 8 weeks now ONLY because I am in a trial. I am at a major medical center and they are more like what you described (before the trial). They only do scans if there is a change in presentation. My markers went up 2 months in a row in December/January and that prompted a change in protocol and a scan for a new baseline. I am bone only so the scans really are not informative and I hate that I am forced to expose myself to radiation uselessly but it is the price I am paying to have access to Palbociclib which was what I wanted (I pursued the trial on my initiative - it was not a doctor driven thing).
janet
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