Faslodex Girls Thread
Comments
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Hello All,
I have been on Faslodex for approx 6 months. I am looking for some input from others you are receiving this medication.
I get the monthly injection at my local cancer where they insist that the 2 injections be administrated at the exact same time.
That is to say 2 Nurse are required to inject the medication simultaneously. I have asked everyone here involved in this process why this needs to be administered this way however each professional says another another directs this process. Nurse say it is the Dr, the Dr says it is the pharmaceutical company, the pharmaceutical company says it is the healthcare providers and the Pharmacist just generally seems to be confused.
I am curious how others are receiving this?
Thanks for the input.
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bellydancer, welcome. I get mine done on one side, then the other. One or two others here have reported getting them in both sides at the same time, but I have never seen anything in the literature to indicate this is recommended, nor do I understand the rationale for it. In fact, unless you're lying down, I don't see how you can fully unweight both sides at the same time, the way you do when you lift one foot off the floor. I know people talk about turning toes in, but I do that in addition to lifting my foot -- not in place of it. Also, if something were to go wrong -- like hitting a nerve or other unexpected pain issue, I would personally rather have only one needle in at the time.
JMO, but perhaps someone else can enlighten us both to the benefit of the way you're getting it done.
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Thank you Jo.
Im firghten because of the skin mets.
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Bellydancer, I get one at a time, same nurse just one at a time. Ask your MO to write you the order for two shots, one at a time. He/she can override the pharmacist and or Pharm company's recommendation. I agree with Deanna that you need to stand with weight on one leg while having the shot and then repeat for other side. Nurses will follow the MO's orders. Good luck
Funthing, when were you diagnosed with skin mets? Is it a basil or squamous cell carcinoma? Or something completely different? Stage IV?
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I get mine one at a time from the same nurse, laying down on the exam table. Works fine for me as long as I have my "good" nurse. I got it once "in tandem" as they gave me a choice so decided to check it out. Did not like both at once. Had my one "good" nurse and one "lousy shot giver". I had more trouble holding still.
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Just got my shots today, one at a time. I used to hold on a table or a chair in the shot room, and ease on the leg that is getting the shot. Today I found a new equipment, like a stepping stool with high handles. I could hold on the high handle and put my shot leg on the step to lift the weight off the leg. It is pretty neat!
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Cling, that makes perfect sense and I want a stool like that!
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The following appeared on the "Not yet diagnosed" thread tonight. I appreciated the poster, AryaS, heeding the Stage IV Only warning for this thread, but given her unique situation, I didn't see any reason why she wouldn't be welcome here, and I hope you all agree. I told her I would share her post here to give you all a heads up. Let me know if this is a problem for anyone.
"I am writing to you because I saw my oncologist today and we discussed the problem I have had with anti-hormonal drugs. I seem to be allergic as I swell and have breathing problems on top of the typical side effects associated with the drugs. I lasted 8 months on Tamoxifen and it gave me a huge ovarian cyst and a uterine polyp as well as really terrible asthma I was on Arimidex for three months until it made my tongue swell to twice it's normal size. It's been the same story with all of them but I have managed to accumulate about 2 years on anti-hormonals.
Today, after another failure,she suggested we try something "out of the box" She wants to start me on injections of Faslodex beginning next week. We need to get approval from my insurance because it is traditionally used for Stage 4 but she thought insurance might give me a go considering my stage 3C diagnosis and 35 positive lymph nodes at surgery three years ago.
I have been reading about the drug and I am skeptical simply because the side effects seem to be the same as the other anti-hormonals only now there is injection site pain too and if I have a bad reaction, it's not like I can stop taking it since it is a long lasting injection. At the same time, I am willing to try anything if it can possibly help me. I know it would probably be more effective to post in the Faslodex thread but since I am not Stage 4, I want to respect the group and am posting here.
I would love any insight and perspective from those of you who take this drug. Is there a way i could get permission to post my question on the Faslodex thread? I really need advice and insight and i would appreciate any help. Thank you for your consideration."
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I certainly will welcome AryaS to post her questions here to get information and responses. if her onc is considering to switch her to Faslodex, this is the place to come, regardless of stage
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Oh. Thank you cling and dlb823 for your graciousness.
I am pretty terrified of starting this drug just because of my history however, I also feel like this might be a really good thing if I can tolerate the drug.
How soon do you feel the side effects? Do they last the entire month until the next shot? Would you encourage or discourage me from trying this as a preventative?
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Funthing, I'm sorry, I didn't realize you had skin mets. I can understand why every bump makes you wonder and worry. Has all of your bc been on the right side? It looks like you have been dx'd with almost every combination of + and - ER/PR/HER!? That must make choosing a treatment much more difficult. Glad you found your way to the forum and hope this combo is good to you.
Welcome Bellydancer, I was offered the 2 at once method a couple of times at the cancer center but said no thanks. Do you lie down for your shots to keep the muscles on both sides relaxed? I hope that if you are not comfortable with the 2x technique you are able to tell them you would prefer one at a time. After all you are the one getting them, I think you should be given the choice!
Deanna, What cling said, she is welcome here as far as I'm concerned. Hope her insurance will approve her Fas.
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I hardly ever post just read but now my onc has put me on Faslodex. I had two shots the other day, but as usual I am worried that Faslodex won't work. I was on Femara for a year, my tumour markers went up to 120, so my onc put me on Tamoxifen. I have bone mets from ILC er and pr+ since July 2014. I had a bone and CAT scan before I saw my onc last week,my bones show healing and the CAT scan was clear for organs. But my tumour markers had risen to 484 so now I am on Faslodex as well as the Xgeva which I have been on since diagnosis. I am really scared as I have been thru two treatments in less than two years and now I think Faslodex won't work either. My onc also can't understand why my tumour markers are rising but my scans are not showing anything new. I hate the change in treatment all the time and need some hope from you ladies here.
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sarah31 and AyrS, My experience with Faslodex has been long. I just reached 5 years but I have stayed on it despite my slow progression. I too have had many allergic reactions to AI's and other drugs, but I've been able to stay with Faslodex. It is still delivering the punch to my cancer although not getting rid of it. AyrS, maybe as your MO for one injection first to see how you do and then add the second one.
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Thank you Linda for telling me about the 5 years on Faslodex for you. When did you take Femara and Aromasin? I thought that after Femara I would take Aromasin not Faslodex. Do you know if I can take Aromasin after Faslodex? Hope you don't have allergic reaction Ayrs.
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Sarah, I took all 3 AI's over the course of 1.5 years before I started Faslodex. Not sure why your MO is suggesting Faslodex instead of Aromasin or Arimidex, but studies are showing good results with Faslodex. You could ask but perhaps your MO felt that Faslodex would be better choice for you. Yes, I have heard that some women do go back to an AI after Faslodex or in combination with it. Faslodex works differently than an AI and that may why the switch as well. My MO doesn't use TM's. It is very encouraging that your scans are good.
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Sarah, my tumor markers were rising too, but the scans were the same. You're not alone in that. Scans tell the tale; tumor markers just don't work for some women. I had always thought that was the women who had large tumor burden but zero on the markers, but maybe high markers and low disease are possible.
Or it possible you have some "subclinical" disease. Cancer that isn't large enough or active enough to show on the scans, but is still there. That's my theory for myself, but it's based on zero evidence or knowledge. Only on my oncologist's shrug (he knows his stuff).
FYI Faslodex works on a totally different molecular mechanism than tamoxifen or AIs. So it's entirely probable that (a) it will work for you when the AIs don't, and (b) AryaS won't be allergic to it.
(Welcome, AryaS -- seriously, Faslodex is a SERD. Femara is an aromatase inhibitor. Side-effects tend to be the same because they both block estrogen, but I would guess allergies would be different)
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Sarah, I was on Anastrozole for 18 mos. following my metastatic re-dx. When it came time to change meds because it was clearly no longer working, I assumed I would be put on one of the other two A/I's. But my onc @ UCLA recommended Faslodex (with Ibrance, which was not yet as approved combo) rather than Letrozole because, as she said, when an A/I fails you, it can be better to go to something that works by an entirely different mechanism. At first I was disappointed b'cuz I felt I was skipping over what I had thought would be my next two txs of choice. But she reassured me that they would still be options for me in the future.
Arya, I agree with the others. Hopefully, Faslodex will not cause the same allergic reaction(s) you have with the A/Is. And I like LindaLou's suggestion about starting w/one injection in your situation. Personally, I have found it an extremely tolerable med. Of course we all complain here to each other about our SEs, and they may sound a lot worse than they are to someone reading our posts. But in the bigger scheme of things, I love and am very happy to be on Faslodex (and Ibrance), and realize that I personally complain mostly to be reassured that what I'm experiencing is normal, which is the context in which I think our SE comments often should taken. Also I think most of us here are also on Ibrance, and it's sometimes difficult to separate which med is causing which SE (such as fatigue), or if there's a synergistic or cumulative effect as well.
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Hello, All
I have received my 4th dose of Faslodex and am scheduled for my next one in a few days. The side effects have been minimal, certainly much less than the Letrozole I was previously on. I have noticed that the pain in my back returns several days before the next dose. A small price to pay. As for the injections themselves, they are bearable. I did have one nurse who wanted to pinch the skin and zip it in. But I am not afraid to say, no! , his is the way I want it done. So don't be afraid to speak up, you don't want to spend weeks suffering due to an improper injection.
Not sure about my next injection as they plan to do the Zometa at the same time. Anybody have any experience with receiving both at once? Any SEs?
Thank you to everyone for sharing. You are each an inspiration!
Diane
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Hi ladies,
Wondering if anyone experiences a bad cough with Faslodex? Spent the day at emergency with my mom because of a dry cough that gets really bad when she tries to speak but doesn't bother her otherwise. Her scans 3 weeks ago were all clear and the chest Xray today was also clear. They've given her antibiotics just in case it's the start of pneumonia or something, but she's pretty sure the cough is from treatment.
She had her last chemo 6 weeks ago and her first loading dose of Faslodex a week ago. Is the cough an SE of Faslodex? If anyone has experienced the same, she'd really like to know what, if anything, helped you.
Also, her hemoglobin count keeps dropping even though she's not on chemo anymore. Can Faslodex do this? I didn't see it listed in the SEs.
Thx!
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Thank you ladies for all your advice. dlb823 it's reassuring to know that you also skipped the other Al's. I thought that I would be taking one of the other Al's before Faslodex. Are you on Ibrance as well? Ibrance hasn't been available here in Australia yet. It's very confusing, as I must be being treated for tumour marker rise, as my onc said if he didn't do tumour markers he would just keep me on Tamoxifen.
Golden Girls. I hope your mom is feeling better. I have had no real SE from Faslodex yet.
Granny D3. I was wondering if they could do my Xgeva at the same time as Faslodex, but it's good that you can have Zometa at the same time, as it's horrible going to the hospital all the time.0 -
I got Zometa at the same time for a couple of years. Now I get Xgeva at the same time. No worries, no problems. I do get the Faslodex last though, so I can walk out after they are finished. . .
If the Zometa causes problems, have them slow down the infusion. I never had problems but some women do.
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pajim. Good to know as I was hoping that I could get Xgeva and Faslodex at the same time, otherwise my life is centred around treatments. All this takes up so much time anyway. And all the strong drugs. Before diagnosis I used to think twice about taking a painkiller.
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Thanks, pajim. good advice about having the Zometa IV first, followed by the Faslodex injections. I always ask to have the Zometa run in slower than suggested, otherwise it puts me into a major Fibromyalgia flare.
Ladies, have a very blessed day.....
Diane
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Hi
2014. Skin mets.
Two months after TCH. Rt breast locally where breast use to be. Flat and pink . Not sure of the kind no one said.
Then Rads took care of it . Then Feb this year they said TM up. Skin nodule sternal area. Nodes on the left and pect nodes. Pet scan .
All on the right until this year. I just dont know what to think. Skin mets is strange in itself but the nodes on the left are freaking me out.
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Hi
Guys itching like crazy. Hoping not skin mets running a muck. Then it dawned on me Aromasin is steroid based so this may have helped with the skin mets. I cant really see anything.
Maybe a slight allergic reaction. ????
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Your skin mets are itching? Maybe they're reacting to the meds.
Did you try a topical steroid, or an antihistamine to feel better?
If it's your rear itching, definitely a topical OTC steroid will help.
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Not posterior. Most likely medication .In regards to taking meds probally not a good idea.
I would hate to disguise any symptoms with meds until Im able to identify what Im dealing with.
Thank you for helping.
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After reading that many of you are getting your injections one at a time, I requested to have them given separately at my appointment today. The nurses told me that I could have them however I preferred. So I chose to do them one at a time. It seems to have made a big difference in the amount of injection pain...I had almost no pain. I walked around the block before driving to work and then strolled around my office for a while. It will be interesting to see how the pain/soreness is tonight and tomorrow. I appreciate all of the experience and knowledge you all share!
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That's great, Ohmydarlin! So glad the nurse was open to and happy to accommodate your request!
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So 2 weeks after starting Faslodex and my mother seems to be having every possible SE imaginable, which is sad given that she managed years of 12 years hormonals, almost 2 years of Xeloda and even 6 cycles of AC chemo with next to no SEs. She has a horrible dry cough and very bad muscle and joint pain that's making rounds to every joint or muscle in her body. Her red blood cells are also very low. They postponed her next dose till Monday after putting her on antibiotics in case the cough was an infection brewing, but considering it began when she started Faslodex, I'm not surprised that no infection was found and that a week of antibiotics didn't change anything.
Has anyone else had all of these SEs? Does it get better after the loading doses?
Thx
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