Ibrance has failed so I'm being switched to Faslodex. What is your experience with the side effects of Faslodex? More physical pain? Fatigue? I'm not sure what to expect after reading all the "possible" side effects.
Anja
Ibrance changed to Faslodex - SHARE Metastatic ...
Ibrance changed to Faslodex
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I have not had bad side effects with Faslodex. I’ve been on it for 5 1/2 years. At first I was having hot flashes and fatigue mostly. Now those aren’t as bad. I’m just grateful not to have to have chemo.
in reply to Nocillo
Thank you Nocillo. That is so good to hear Faslodex is still working for you without major side effects. I will not do chemo again and hope this will work for me too. I wish you continued success ❤️
7 years for me and I would agree that it's pretty easy.
in reply to diamags
Fantastic!!!
I’ve have had two faslodex shots so far. Question is that it seems day two after the shot I am a waste! Totally exhausted ,hard to function. Is this common side effect?
I don’t know if it’s a common side effect. I was exhausted also but never knew which drug caused it or if they all did. I don’t do nearly what I used to do and I sleep a lot more, but it seems like that is getting better or I am just doing so little that I’m not as tired. It’s certainly an adjustment to say the least. Luckily I am retired now. I have no idea how someone could work through this.
I met two women on another board. One was a nurse and the other lady lived in South Dakota and taught elementary school. Both said they would be bored to death and feel the effects more if they did not keep busy. I live in NY. Just dealing with the NY MTA is a job in itself. I used to take a bus and two trains. In NY you see everything on the trains. I remember coming home from work once (I was running a little late) so it was not jammed packed but some man (mental issues obviously) said he was hot and he took off all his clothes, and I mean every single piece of clothing. You have to laugh. I miss the money I used to made and using my brain. It has kind of turned to mush but that is my own fault. I used to be a NY legal assistant at large NYC law firms (400+ lawyers). I used to know all the rules of the Courts, etc. Now, I do stupid stuff (I am now on 4 10 mg. percocets a day), like leave the house and start walking and then realize I have my furry slippers on. Or go crazy bc I cannot find my glasses and I rush around in a frenzy and then jump into the shower thinking I have to start at least getting ready and then when my lens get wet, and i realize they were on my face the whole time.
Or the worst time, when I came out of the shower and was having hemorrhoids issues bc of all the meds and everything and took the Preparation H small tube out of my medicine cabinet and started to apply and I felt like my butt was on fire, it hurt so much. I jumped right back into the shower and was in so much pain.
I came out looked at the tube and had taken out my menthol toothpaste and had applied that. The two were the same size. I had to laugh at myself.
A sense of humor is essential! I almost brushed my teeth with skin cream once! I used to live and travel all over the world and now I just want my comfy chair. I’m not giving up on anything, but just taking everything one day at a time and thankful for all I’ve lived so far.
I went on a traveling spree in my 40s. I had always wanted to go to Africa since I was small. None of my friends wanted to go to Africa, they wanted to go to some islands so I figured what the heck, I am not married and have no kids so I booked a trip to East Africa (Kenya) and went alone. 17 hour flight with one stop in Sweden for refueling. When I got there, it was a culture shock. The africans were grabbing at me as they all wanted the money to drive me to hotel. I had to scream STOP, STOP and then seen an african man with my name on a board. He was going to be my guide and I knew there would be two other people coming in on another flight within 1/2 hour so I stayed outside with him and smoked away.
Believe it or not these two ladies about my age or a bit younger came off the plane and were going to be on my tour also. Turned out they were two sisters and lived 20 minutes away from me in Brooklyn, NY. I fly 1/2 across the world and am paired up with two gals from Brooklyn. Actually, it was a blast and it was everything I expected.
The next year since I had traveled alone and it was fine, I went on a hiking and camping expedition in the midst of the Amazon rain forest. I could barely move. The humidity was unbearable, no electricity, no running water and you want into a hole when you had to go. It was a small horrible cot and there were bugs all over me (Luckily, I do not have a problem with bugs). I cried the first two days there bc it was rough but then I adapted. From there I flew to Lima Peru (and cried when I went into the room and seen a toilet and a bathtub) and from there went to Cusco where I went to see Machu Picchu which has to be the most beautiful place on earth.
The following year went with a coworker to England, France, Italy, Austria and Switzerland.
So glad I fulfilled my dreams of traveling at least to Africa and Amazon bc for sure I can't do that now.
I just made this same change about 3-4 months ago and haven't noticed any major difference. A few hot flashes but not bad. I do have injection site redness, soreness and itching for about a week after. Will probably be adding Verzenio next month. I did ask if Faslodex could cause flares of arthritis and my oncologist said that was a possibility.
in reply to TNVol
Good to know! Thanks for your feedback!
The possible side effects of any medication are voluminous. I like to go with noticing a symptom that might or might not be a side effect and then looking it up. I don't have much of a reaction -- on it for almost two years. On any medication, my body seems to roam through all possible side effects at different times. My newest one is an arthritis flare, which someone else's doctor suggested could be from Faslodex.
The main problem -- and you will see me ranting about this in numerous posts -- is that most nurses inject it incorrectly. I am on a campaign about this. We need to get it changed. So far, I have made no headway, at Columbia Presbyterian, just the luck of the draw whether or not it is given correctly, because the injection department is separate and handles injections from all departments. Here are some things to ask for or watch out for. First, while they are setting up, ask for the syringes and put them between your thighs to warm them up. It makes it much easier.
Second and most importantly, the injection should be given in ventrogluteal area, NOT dorsogluteal. Ventrogluteal is basically the hip and dorso is the butt. Dorsogluteal is dangerously close to sciatic nerve and there is more fat so there is more risk of injecting it into the fat instead of the muscle.
Almost no nurses do this, and there are numerous studies on where nurses give the injection and tests of training programs to convince them to give it in the ventrogluteal area. -- They are mostly trained to divide each buttock into quarters and to give it in the upper outer quarter. That can get them close to the right site if they go as high up and as far out in the quadrant as possible.
Third, and this happens rarely, but when it does it s very uncomfortable, they must take a minute or two to inject it; if they don't empty the syringe fully before removing it or don't go deep enough, you can get a hematoma, a big lump that lasts a few months.
in reply to TammyCross
Thank you!!! That is very helpful 🙏❤️
Hi Tammy,
According to your post, I’ve been getting these injections wring for 3 + years.
I often get lumps snd then the nurse switchs the spot. The ventrogluteal area sounds like its on the side if the hip when I googled it. Is there diagram you can post perhaps? Or a website?
I’ve been suffering through these injections 😟
Yes, I found a diagram, in one of the many articles on how intramuscular injections should be given. It surprised me that it is really on the hip. I wish we could post articles and graphs here. I am not sure I saved the link, just the graph itself. I will see if I can paste some excerpts here, and then a graphic.
"Traditionally, nurses were trained to inject large volumes in the dorsogluteal site. Caution should be exercised, however, due to close proximity to the sciatic nerve. The ventrogluteal site is evolving as a safer intramuscular injection site, as it is accessed easily and is distant from major nerves and blood vessels. "
Here is another excerpt:
"in clinical practice continue to use and instruct student nurses in the use of the dorsogluteal (the large gluteal muscle in the buttocks) injection site as the site of choice for intramuscular injections, despite abundant evidence regarding the complications associated with using this site. Advancing the use of the ventrogluteal (located in the hip) injection site is a challenge, primarily owing to nurses' lack of familiarity with its anatomical landmarks and the published evidence on its benefits. The authors of this article present the current evidence on the dorsogluteal and ventrogluteal intramuscular injection sites in an attempt to assist nurse decision-making and guarantee the integration of evidence-based knowledge in order to improve patient care."
Nursing journal 2016
This article had the graphic that I will try to paste here: No, didn't work! Trying another way: - Nope.
This is how I got there: I googled ventrogluteal im injection
Best I can do is a link showing ventro vs. dorsogluteal sites:
google.com/search?rlz=1C1CH...
So long!
in reply to TammyCross
Thank you so much for this!!👍👍👍❤️❤️
I’m now dealing with lipohypertrophy on the left side. It’s caused a lot of pain. Please be aware of a lump that doesn’t go away. I always thought it was the medicine not getting absorbed, but just learned that it is really a side effect of getting too many injections in one site. All the things no one tells us...
Many thanks! I’m having my first Faslodex shot today and I was actually concerned about this, due to seeing some women having nerve damage from it done incorrectly. I’m literally going to show this to them. I guess my main concern now is, what if they’re not used to “shooting from the hip”? Thx again~
It may have caused some body aches for a few days a month, about two weeks after the shots.. Nothing major. Mostly at my chest surgical site - a tightness. I was on it April to November with nothing else and pain was manageable and a little hair thinning in August which stopped. It was never noticeable to any one else. I was active in the garden and took long walks and exercised. I am never sure what causes what though! I recently got an Xgeva shot and have had a lot of pain this month like severe body aches, just horrible. Stay in bed horrible. Wonder if Xgeva caused it or Faslodex kicking in more or the Ibrance I just started last month(2nd cycle) or a combo of all of them! It could also be a more sedentary lifestyle due to recent surgeries on my leg , I just can never be sure! I suspect the Xgeva as it is the newest addition. I am looking into marijuana edibles as another pain management option although I never really wanted to. I have an appointment to discuss it this month. I am on fentanyl patch and hydromorphone narcotics because of 2 recent leg surgeries . I am curious as to why you weren't already on Fulvestrant with the Ibrance. I thought they went together. Were you on another hormone treatment or just Ibrance alone? Good luck to you and God bless us all!!!!!!
in reply to hopefulinadks
I was on the Ibrance/Letrozole combination. When ibrance failed my oncologist recommended the Faslodex and wants to add Everolimus once we know how I tolerate Faslodex.I'm so sorry you're going through so much pain, and yes try the edibles! Nothing to lose? Hopefully you'll find something that helps you🙏🙏🙏
hopefulinadks in reply to
Thank you SpiffyCJ. Have a wonderful holiday season. Good luck to you!💪 stay strong!
Sjjohnson52 in reply to
I have been on iBrance/letrozole for couple of years.....however, now my cancer marker is going out the roof so I suspect I will be changing to something else....sounds like Faslodex will be a good choice?
Iwasborntodothis in reply to
Sounds like we are on the same plan. I was super bummed to have to give up Ibrance after 15 rounds but now I feel guilty because this is so easy...is it even working? Blood work and doc appointment tomorrow. Gonna add you to my "follow" list if you don't mind
in reply to Iwasborntodothis
Followed you back!! Yes, please let me know. Mets to lungs for me too. Hoping and praying for good news for you 🙏❤️
Iwasborntodothis in reply to
Doc today - I had an epic jump in my tumor markers (my markers are epic anyway) but they believe it is a "flare" which means the bottom jabs are working. All my other blood work was in the normal range and my counts that were low from Ibrance have bounced back to normal (shhh don't tell my mother-in-law that my immunity is good 
). We are staying the course until my January appointment so Merry Christmas!
in reply to Iwasborntodothis
Allison! That is fantastic to hear. Here's to a merry Christmas and continued success!❤️🙏
That is great news!!
Thank you ❤️ Happy Holidays to you too!
Severe muscular skeletal pain is a possible side effect of Xgeva. It didn't show up in the clinical tests, but after it was approved and was used more widely. So, lucky you - got one of the less common and more difficult side effects. I wonder whether this sensitivity is attributable to your body going through so much at once -- surgeries, starting Ibrance and Xgeva, and whether it will subside once your body has adjusted and you are back on your feet. Exercise does help. Seems so odd, that pain can be ameliorated by moving those painful bones and joints.
I started on Zelodronic Acid, and it knocked me out. Even though it has similar or lesser side effects than Xgeva, I do better on Xgeva. It is individual. Maybe you are the opposite? Of all the meds I am on (Fulvestrant, Ibrance and Xgeva), I have found the one for bone mets affect me the most.
I’ve been on the same combo plus luprin. I’ve considered switching to letrozole only to avoid the fulvavesant i jections.
I just told my onco as of last month I no longer want to take the Xgeva injection because of the rash I developed on my legs. But I had not realized that it is not a real medicine pill like Ibrance or Falsodex that all it was was a bone strengthener. She also had me taking vitamin D supplements in addition. I had holes at the bottom of the spine from my breast cancer so that is why she added that to the mix.
I try never to read about any side effects of any new drug bc then I imagine I have them. I wait and like with the rash on my legs then see if any other women on the same meds as me have had the same issues.
But one or two of the ladies mentioned having a similar rash discoloration of my lower legs and said they were told it was a side effect from that injection so I told my onco no more with that. But I had thought it was "strong medicine" so was surprised that it was just a bone strengthener in injection form.
I got eczema, really bad itchy rash, from Xgeva. Started on my legs. When I was able to go down from monthly to every three months, it is not so bad. Are you on monthly? Can you hold out? I am quite confused about these bone density meds and mets. I refusd to take them when i just had osteopenia after my initial bc treatment, got rid of it with exercise. Now I understand one has to take one of these meds with bone mets. My doc is bad at explaining things. I have read and been told that bisphosphonates grow brittle bones, and that new bone breaks easily. No choice, apparently, with bone mets.
Oh maybe you are one of the two women I read that had the rash like I got. I told my onco, this is going to mentally break me. It was the itchiness. It was non-stop and it would drive me insane. Seriously, it was worse than the cancer. Plus it looked awful and my left leg and ankle were swollen.
I was not sure if I should have went to a dermatologist or vascular surgeon. I went to three different vascular surgeons (I never liked them), and they all gave me rx to get compression stockings. I thought I have enough trouble living alone and I did not want to be in more discomfort.
The last one wrote me an rx for some kind of cream. but told me to put on aquaphor first on my leg and then over that, put the cream she prescribed (with 10 refills) and then wrote me an rx for thigh high compression stockings. I wanted to make sure that Medicaid paid for them bc I was told they are about $115 each (she wrote it for four.)
Twice i made appts. to go to the medical store to get measured first and then you pick them up like three days later. But so far the creams have made such a big difference. Not with the discoloration but no more itching and alot more smooth but are still discolored. I thought you know what. I really do not want to wear compression stockings for several months so as long as the itching is gone (which is what bothered me the most), I am fine with doing just the cream. I was supposed to be wrapping both legs myself with this heavy brown gauze until I went and got measured and go the stockings, but I found it so hard to do myself that I stopped doing that.
But now we are supposed to have some kind of snow storm they are saying (it could be inches) but I wont be able to get my foot into a closed shoe.
But I told my onco I am done with that injection and she just said okay. So for now the creams have made all the difference and I am not scratching so hard that I am bleeding. I do need the swelling to go down (which it is not) so I may go get fitted and see how they feel. I just thought I do not want to deal with an added discomfort on top of everything else.
I was getting that injection monthly at the same time of the falsodex so I told her no more. I wanted to see (this will only be my second month without that injection) if after a few months, the swelling will go down on its own. I may as well get the compression stockings but I heard they are very hard to put on by yourself.
Going out for me (bc of covid and all) is just going from one doctor to another. It's really the only time I get out of the house and thank God Medicaid pays for car service back and forth bc I do not drive and have nobody near me to help so that is a big blessing for me (on top of the fact that I have dual coverage) now. Medicare and full Medicaid so I do not pay for anything, have no deductibles, etc. I realize how lucky I am. I got a statement a few weeks ago and since I started dual coverage in the period from January 2020 to September 2020 they have paid out over $150,000 for me. Ouch. No wonder people go broke with cancer.
So I just take Vitamin D supplement. First time I am ever taking a vitamin in my life LOL
Yup, I am one of the two. The other was driven so crazy by the itching she forgot her cancer treatments. The stockings are not that hard to put on. They don't do much. The destruction of the veins by the vascular surgeon did the trick. No swelling!! I am happy. It was painful, though. I had to do both legs. Then you have to wear the compression stocking for 10 days after the procedure. I just had one stocking, used it on each leg, had weeks between the two legs. The vascular surgeon sold me that one stocking. It was $20. Maybe, since you get free transport, you want to go to mine? Her name is Bajakian. She is at Columbia Pres.
Thanks, I will check to see if she accepts medicare/medicaid. Some places like Sloan Kettering which I would love to go to accepts medicare but only those people who have a medicare supplemental plan. They would not accept me because I have medicare and medicaid as my secondary. I am going to make a note of that. My legs are not itchy anymore but they are still ugly with dark discoloration and foot and ankle still swollen but the itchiness is gone so I am grateful for that.
I just was not sure bc I am getting a bit depressed that I wanted to add more discomfort to my life right now if the cream has stopped the itchiness. But I think I will check into your recommendation.
After talking with me yesterday, the pain doctor suggested I speak with their psychologist and I said no. I said unless somebody is actually going through it, they do cannot understand. I said I Prefer to go on the forum board where I am not ashamed to show a picture of my leg bc some of the other ladies have had the same thing. I said they get it bc they are also going through it.
Thanks so much.
Can you share the name of your rx cream that helped with your itching? I need some as I have eczema flare ups too!
I was told by the surgeon to use Aquaphor (which can be bought over the counter) and then she added in another cream which she wrote as a prescription with 10 refills (Ammonium Lactate 12%) but apparently that can be bought over the counter but she wrote that as an rx so I do not pay for it but I do not think it is that expensive. I put the aquaphor on first and then the Am. Lactate 12%. I was told not to put loads of it on, just basically enough to put on as a second layer. Pharmacist told me to squeeze about the size of a quarter.
Since using both, it has been a mini-miracle. The itchiness is completely gone. I am to use it twice per day. First, aquaphor and then the second cream over that. They both are very oily but my skin soaks it in in about 20 minutes.
Let me know if it works for you. (It has not helped the swelling or the discoloration) but has completely stopped the itchiness.
Thanks for this - I’m purchasing Aquaphor and will use it under Amlactin lotion which has the ingredients you listed. My issue is mostly my back which has big areas of discoloration now. I’ll circle back later on and let you know if this stops my itching! Fingers crossed!
I am taking Faslodex with Verzenio.. the first 6 sessions were a bit rocky, various side effects came and went. However things have settled down now, I have just had my CT scan and it is working.. so stick with it - and be kind to yourself, take lots of rest while your body adapts. I had to pack the food in, I lost 1/2 stone in weight while my body concentrated on coping. After month 2 my weight came back up to normal.
in reply to queeneee
Thanks Queenie. I don't have much weight to lose. Maybe I'll get some protein powder ahead of time.
I only have discomfort at the injection site. I was having severe itching and burning, but when I switched to paper tape, all that stopped. Just make sure they go slow with the injection.
in reply to kkrouse
So you reacted to the (bandaid?) Tape? I'll pay attention to that too. Thank you!
blms in reply to
I too have latex sensitivity. I get red and itchy
in reply to kkrouse
I'm on bloodthinners and hope thise injections won't cause massive bruising.
Hi. I’m actually on both and have been for over 3 years. The injections are fine. A little discomfort but you get use to it. I have two nurses so they do them at the same time. I have some fatigue but the ibrance does that too. U will be fine. Good luck
in reply to marianne88
Thank you Marianne88. Reassuring to hear ❤️
Wow, two nurses. With me at the cancer center, only one nurse, they have me lean against the door and she will say she is doing the left side first and then I put my weight on the right and then vice-versa. it takes longer to keep them under my armpits to warm them up. I get annoyed and say I was waiting outside to be called for 40 minutes, why not give them to me then to warm up. They used to.
Hi, Anna,I was on Ibrance/Letrozole combo for 32 months and was then switched to Faslodex about 4 months ago. Have had increased back and joint pain so just hopeful that will subside. Probably a bit more fatigue as well. God bless you!
Linda 🙏🏻🙏🏻💗💗
Hi. I have been on that combination for couple of years....and now my cancer marker is rapidly rising so I guess I will need to change to something else perhaps faslodex?
in reply to Sjjohnson52
That's what happened to me , also after two years. It seems Faslodex/Everolimus is the next line therapy. Let me know what will be decided next for you. All the best!!
Sjjohnson52 in reply to
I did switch to Faslodex but I am having dizziness, headache, back ache, trouble sleeping. Help. Any one else trouble with Faslodex????
in reply to SeattleMom
Thanks Linda! Blessings to you too🙏
I am sorry and wish you luck with your new meds. How long had you been on Ibrance? I've done eight months and feel good, but I keep wondering how long it will last for.
I know ladies from other boards that were on it for three years. Some even longer who were on it during the trial stage. That is why I guess for most, it is considered the first line of treatment.
in reply to Beryl71
I was on Ibrance for two years. Just hoping the next line will be successful!
I'm on Ibrance and Faslodex. I have not noticed side effects except for fatigue and some soreness from the shots.
I'm on Ibrance and Faslodex. Initially I was only on Lextrozole before being diagnosed Stage 4. Other than getting the shots in the "hips" (ouch) I have had no prominent symptoms other than soreness from the shots and the same ole ' aches that come from Ibrance - some fatigue especially in the morning. I've found taking the Ibrance at night (8 pm) helps .
Thanks for your feedback! I'm off Ibrance and will first start Faslodex by itself, so it'll be great to monitor side effects I guess. I'm so skinny and just hope the muscle pain won't hinder me in sitting 😂You're smart about taking ibrance at night.
Keeping positive thoughts and prayers it'll prove very successful for you🙏
kearnan in reply to
Wow. I didn't know one can be on on or the other. I have been getting the injections from day one. Started with Ibrance, now on Verzenio but always the falsodex injections since I started treatment. That would be great if I could just do the injections.
in reply to kearnan
Isn't it amazing how treatment with same meds can differ from person to person?!
kearnan in reply to
It certainly is. Probably the most important lesson I learned from the beginning. That everybody has totally different reactions. We are all in different stages of health, some of us are on other meds, so many variables. I no longer google if she is going to give me a new med either. Because I do not want to read of POSSIBLE side effects bc then I think I will start to imagine I am getting them. I wait and see and then if I have any, I come on this board to see if any other women are getting the same effects on same drug.
So I come on this board and have stopped googling a while ago.
Yep I’m skinny too! I have zero problems from injections. A bit uncomfortable going in but no residual effects. No swelling, I redness, no pain. I have had two sessions so far and it’s been easy. I do take arnica before and after
in reply to blms
Thanks!! I'll check into arnica🙏
I am NOT skinny. The first time I had to get my injections I was nervous and embarrassed. I had never really ever been sick before and had never spent even a night in a hospital. And I was a bit humiliated at having to pull my pants down in front of some stranger. Until the nurse said after I pulled down my pants "Finally, something I can work with." I let out a loud laugh and said I guess you are telling me I have a big butt. She said No, I do not mean it like that. She just said that some of these skinny women they scream bloody murder when I give them the injections. She said you have meat on your butt. I barely felt a thing but she made me laugh so the nervousness went away and I laughed instead.
They are for two different things. I’m on both. Faslodex is a hormonal shot and Ibrance is chemo pills.
in reply to SunshineBoss
Yes, I am aware of that I didn't phrase my post very well. My onc does want to add Everolimus after seeing how I react to Faslodex shots.
SunshineBoss in reply to
😘❤️
I was told Ibrance is NOT a chemo pill but an inhibitor. It basically slows down the process of the cancer cells which split and divide. On a form for SSDI, my onco had put down that I was not on chemo, but was on inhibitor. (I had no idea what that meant at the time. I have a better understanding now of its purpose.)
"IBRANCE is a targeted therapy known as a CDK 4/6 inhibitor. It is not a traditional chemotherapy. IBRANCE works to put the brakes on cell growth in both healthy and cancer cells. This helps slow the progression of cancer, but it can also cause side effects, some of which are serious."
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