I've followed your posts and have found so much valuable information from you. I hope you can help me with some more of your experiences and guidance.
Bone mets since Dec 2018. On Arimidex and Ibrance combo for 16 months. August scans showed no lesions. Great! Ibrance is woking! However scans from this week show "numerous new hypermetabolic bony lesions as well as increase uptake within the manubrium." Onc said on to new treatments. At first she wanted to take me off of Ibrance but she listened to me as I said I want to stay on bc I've had little side effects, plus its the devil that I know, etc.
So my onc will allow me to stay on ibrance but will swap out Arimidex with Fulvestrant. But she also gave me a few other options. See below.
Can you tell me what your experience has been if you have had any of the below drugs or combo? We will do scans in 8 weeks. If progression, its off of Ibrance completely.
PS. i'm upset I have to take Fulvestrant as I really hate needles and feel every pinch. So much so that that my nurses use the 'baby needle' for me. Please don't tell me how large the needles will be as I'm already guessing they're not small.
Option3 - Fulvestrant + alpelisib (depending on results from my next gen sequencing)
Option 4 - Fulvestrant + Everolimus
Option 5 - Exemestrane + Everolimus
For options 1-4, I will do two weeks cycle on Fulvestrant for the first 8 weeks, then scans, then 1 month Fulvestrant thereafter.
PS - I told my onc I'm going to seek a second opinion on the scans but will choose one of the above options in case the second opinion doesn't change anything.
Thank you so much in advance.
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Jonesburger
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I was on Ibrance and Letrozole for 18 months. I am now on Fulvestrant, I wanted to continue with Ibrance but both my oncologists in VT and Boston advised against it. I am awaiting results from my liquid biopsy as my doctor may add Piqray. In terms of the injections, they really aren’t that bad. My nurses warm them up and I get them both at the same time. After the injection I usually take a walk and that helps tremendously!
Jade, thxs for your reply and tip of walking. I work in NY so will time my shots later in the day so I can walk to the subway and stand in the train (I can never get a seat anyway) for the commute home. I don’t think I can handle two shots at once but see the benefit.
Hi...you will find this forum to be full of knowledge and support! I was diagnosed in December 2018 as well. I began taking Ibrance/Letrozole in March 2019. Unfortunately after 7 months it stopped working. In October 2019 my doctor recommended your option 2 (Faslodex and Kisqali). I had a scan in December and it was somewhat stable. I think my next scan will really show if this treatment is working.
The shots are not so bad. I agree with Jade don’t look at the needle size. My nurses warm up the shots before it’s administered. They tell you to shift your body weight from left to right. After the shots they give me heat packs to go home. Once I’m home I lay on my infrared heating pad and it helps. You will feel sore and probably develop a bump from the shots. It’s manageable. Don’t let it scare you. As for the pills I get them from my doctor every month because it’s part of the trial. The side effects are minimal except for feeling tired at times. I always felt terrible when I was on Ibrance/Letrozole. I had aches all the time and felt like I couldn’t get out of bed. I don’t miss it. I also work in NYC but I mostly work from home now.
Good luck and keep us posted. Reach out if you have any other questions.
Hi Maria, thanks for your note and your tips. I have a heating pad that a friend lent me so will have that at the ready. Thanks also for sharing your side affects with the Faslodex / Kisqali combo. It sounds like it's the same side affects I have with ibrance/armidex combo...minimum and only feeling occasional tiredness. Thanks again.
I’ve been on Ibrance and fulvestrant since May of 2019. I’m not a needle person either - you have to get your mind off it. I play music while getting the shots and it really works. ❤️🙏❤️🙏❤️
Good idea. Maybe starting the music while the nurse is getting everything ready. I don't like needles either and I found the shots not bad at all. Lots of flesh on the butt. Easier than on the arm.
I’ve been on Ibrance/Fulvestrant for 6 rounds now. At first after the shots I tried heat pack but found for me anyway that immediately icing is better to reduce swelling. I bring 2 gel filled ice packs and sit on it for 20 minutes while I drive home. Since you walk/subway, maybe have nurse tape it to you and wear a baggy top/coat to hide😜 ps my last scan showed this combo is working and shrinking my lung nodules
Hi AuntyJane. Thanks so much for sharing your experience with the Ibrance/Fulvestrant combo. So happy to hear the combo is working for you. That helps me a lot. Also, thanks for the tip on the ice packs. You reminded me that that my nurses have bandaids with built in mini cold packs. I'll ask them to apply them to my bum post shots.
Have you tried letrozole? I've read that it's the most potent of the aromatase inhibitors. I am only a year in but have seen great results with letrozole alone; I took Ibrance for 4 mos. and had to stop due to chest pains ... got scared basically. I'd write more but I am exhausted as I had a very busy day. Did you know stage 4 automatically qualifies you for disability? please don't be offended but I can't imagine working with this illness, and just wanted to be sure you knew that. God bless you and guide you in your next steps! xo
Hi Godbeforme, thanks for your note. I haven't been prescribed Letrozole yet but I'll ask my onc about it. As for disability, yes, I found out recently that MBC qualifies us for social security disability. I'm going to keep that in my back pocket for now since working full time hasn't been too bad for me. My manager lets me work from home or take time off for doc visits whenever I need to so I really feel like I can go at my own pace most of the time. I hope you got some rest . All the best, Jones.
oh good, then in your case it's best to keep working; sometimes I wish I had a job like that to keep my mind off everything else. one of the ladies here, anne loeser, wrote a book, "Insiders Guide to Metastatic Breast Cancer". You can get it online and it's very informative. I had messaged her on here about a year ago and asked her what she takes and she told me she is on Letrozole only. That's another reason I like letrozole. It is NOT a gentle drug, it causes your joints to ache and it feels like arthritis, but it WORKS! It doesn't bother some ladies very much at all! GBY and have a blessed week! xo
Re the Fulvestrant , lean across the medical bed with your weight, take all the weight off the leg/hip that is getting the injection with only your toe touching the floor, make sure the nurse has warmed the solution, have the nurse use a numbing spray on the area, ask your onc who is the most experienced nurse that gives this particular injection, ask her to inject the fluid very slowly, and apologize ahead even if it hurts their fingers. Then, if you're finished and had no problems be sure to request her again and make sure she's working when you come back. Also, if she realizes you requested and will go with no one but her, she'll be even more careful. I don't know how you can get two shots at once unless you have two nurses, and I personally would not want that, It would make me nervous.
My Ibrance stopped working after 18 months so I’m now taking everolimus and exemastane....don’t see the point of continuing with Ibrance if it’s not working as that gives the cancer a free rein to spread more...I know how you feel as I didn’t want to stop either as I was afraid of new meds as I functioned well on Ibrance/letrazole combo
Had a month on these new meds and not tolerating the 10 mg dose of everolimus....will ask my oncologist to lower the dose...if she won’t then I’ll cut the tablets in half myself!!!...I think it’s ridiculous to start someone on the maximum dose when it can make you really poorly....my muscles are weak....feel like my legs will collapse which makes me wary of going out for a walk....I did ride my horse yesterday (!!) and will go for a swim this morning but it’s not easy....I’ve lost my zest for life and my skin is like sandpaper....for the first time people are asking me if I’m ok etc.... whereas on Ibrance I looked the same.....I would prefer a shorter life than a long life feeling crap
Sorry ladies I’m in a bad mood as was pouring with sweat all night so had to change sheets again....then managed to drop a litre of milk all over the kitchen...then cried
Sure you’ve all been there!
Meeting up with my old dental nurses later so they’ll cheer me up
Glad you're getting with the girls ... repeat with me "this too shall pass" ... if your body is telling you not to take it, listen! just looked it up and it is not to be cut in half. It also comes in 4 different doses starting at 2.5. I would stop taking it until the doctor gives you the lowest dose and see if that's effective. Why don't they start at the LOWEST dose effective? You still have the letrozole, right? that's all I'm taking and I cut it in half even though you're not supposed to; it was literally crippling my hands and I had no choice because it works for me and don't want to switch. Sending prayers for you to feel better, my friend, you can't go anywhere, we NEED YOU and your beautiful stories and pictures of your horses! I got rid of my extra soft mattress by the way, turns out it was causing my lower back pain to be much worse, but I needed it right after my femur break because of the screws and hardware they put in my leg and I'm a side sleeper. Father, I ask in Jesus name, that you touch Barb with Your healing hands and take away the pain as she reads this. We love you, Jesus, and we believe You are the same yesterday, today and forever, and by Your stripes we ARE healed, amen! <3 xo
Barb, thanks for sharing your experience with your current treatment. I'm sorry you had a bad day today. We've all been there. I hope meeting up with your old dental nurses cheered you up. Take care.
I’m thinking of you & you are a brave & beautiful lady. I hope they sort out your meds dosage & you begin to feel better soon. I so want you to do well as I’m always thinking what are my options once palbociclib & letrozole stop working ...
Just getting through the months of January & February in the Uk are challenging for most people.
I’m up & down - dealing with the loss of my mum & still suffering with what I think is a trapped nerve in my back. I’m actually using some ice cool blue gel with arnica, tea tree and witch hazel that is used on horses & it’s helping a little 👍🤣
I’ve got bloods today & see the Onc tomorrow so will mention the pain to them and see what they suggest.
Most of all take care Barb and I hope you feel better soon. Sending you a hug 🤗
I hope you’re not too sad today as its hard losing a parent...my mum died when I was on holiday in Portugal so I never said goodbye and feel guilty although it wasn’t my fault I was away and she’d had so many ‘scares’ re her bad heart I took little notice that she wasn’t well before we went away
The cool gel should help your painful back and at least will smell nice?
I’m seeing my oncologist on Wednesday and having an iron infusion to see if that’ll give me a boost...maybe I’m blaming the new drugs and the fatigue is more from the anaemia...I suspect she’ll want to keep me on the high dose to see if that’s the case
I know we want to stay with the same medication that we’re familiar with but Ibrance isn’t the holy grail of treatments....many ladies did well on the old faithful drugs for years...i.e on letrazole, tamoxifen etc and Ibrance and Afinitor etc only prolong progression free survival ....so if side effects are horrendous (for some people this is true) then personally I would prefer quality of life over everything else...that’s just me!
There aren’t many UK ladies on here...I live in Nottingham but originally from the North East...I see you’re in Windsor
Barb xx
I am overweight and have a meaty butt (LOL). I barely feel them. It's just a pinch for me on each butt. They put a small bandage on afterwards. I am immediately fine. I feel no pain and I can immediately sit down and walk and feel nothing. Sometimes I feel a bit lumpy there, but just massage and it's gone in a two or day. To me it's the easiest part of the treatment. The day I had to get my first two injections ever, I was feeling embarrassed and a bit weird about it. When I had to pull down my pants, the technician said "Finally, I have something to work with." That made me laugh which I needed. I said in other words I have a big butt. She said it's easier if you have a little meat on the back (I have more than a little). Your imagination will make you feel or think it is going to be worse than it actually is. For me, now, it's the last part of my monthly visit to cancer center so I am like just let's get it done so I can get out of here. But needles never bothered me to begin with.
Aamkearns, thanks for your note. You're right about my imagination making it worse. I have to try to find something else to think about then that needle. I really hope it won't hurt as much as I fear it will.
I have been on Ibrance for over 3 1/2 years (May 2016). I was also taking Exemestane until August. I had been working with minimal progression but then my August PET scan had begun to show some sizeable progression(Mets in multiple bones) so my onc switched to letrozole and Ibrance. I only stayed on that for 2 months as the progression got even worse.. Then I was put on Faslodex along with the Ibrance. As the nurses tell me I have a "tiny butt" so the shots can be rough-- mainly the first month when you have them every 2 weeks. Now that they are once a month it is a bit better. From what I hear, and what I do , the two shots are always given at once. Definitely make sure they warm them up and take their time doing the injections. Once I had two nurses who were in a hurry and I had way more pain-- I will never have a late day appt again !!!! Also lean over the bed(raised up a bit) and pointing your feet pigeon-toed seems to help. Also plan on walking for a while- that seems to help. No sitting for me for at least a couple of hours. Good luck and I hope this combo works for you. I have been on it since October and the change has been remarkable. I don't know how long it will last but for now it is definitely working !!!! Yay !!
I am on Ibrance and Letrozole. The Fulvestrant only worked for a few months then I had to stop. I had them put Lidocaine numbing cream, on my butt for a half hour before the shots. Then ice to reduce the swelling. And a walk.
My CA27-29 is up and I see my oncologist tomorrow.
Hi Reenie, thanks for the tip on Lidocaine. I think my onc mentioned a cream they could give me prior to the shot. If it's Lidocaine, I'll make sure I get to the center ahead of time to apply it 30 mins before the shots.
Caw517, thanks so much for sharing your experience. I was very interested in reading that your doc kept the Ibrance as part of the combo even after you showed progression with two different combos. My onc says if progression does show after Ibrance/Faslodex combo, then she would take me off of Ibrance and do Fulvestrant + Ribouclib combo. I'm really glad that you're doing well on the Ibrance/Faslodex combo. I hope this combo works for me too. And I'm not sure if my bum is considered tiny like yours but it doesn't have a lot of flesh on it (I'm 5'2 and 122 lbs) so I'm definitely dreading this.
I have been on Fulvestrant since March 2019. The shots are not bad. Two nurses give me the shots. They have me lean over and rest my elbows on a counter. Try to relax and not stiffen up. I walk after I have the shots. This seems to help. Every month is different with side effects. You may have a bruise and some hardness under the skin. I think this depends on the nurse who is giving it to you. Massage the hardness. I sometimes have itching a few days after the shots and sometimes it hurts to lay on each side for a few days. Good luck.
I took Ibrance for 19 months with little or no side effects, expect dry hair and skin, and some diarrhea! I had Fulvestrant injections monthly. However my January PET scan showed activity in my lung tumor and liver, and bone mets! The consensus between my onc here in Syracuse and Dana Faber in Boston where I had my second opinion, was that we were going in the wrong direction and we needed to change the treatment plan to another hormonal treatment of Verzenio along with Tamoxifen. I’m waiting to get that medication today and hopefully it with do the trick! It’s a roller coast ride, to say the least! Trial and error is what it’s all about with this ugly disease! Good luck to you! Kathy
Interesting you were changed from Ibrance to Verzenio - thought they are pretty much the same in the CDk inhibitor group? And curious it’s paired with tamoxifan and not letrozole? Have you ever taken letrozole or tamoxifen in the past? Also wondering did doctors decide new activity was due to Ibrance or Faslodex no longer working...or both? Thank you and wish you well on this new combo.
My onc consulted with the docs at Dana Farber and be I had already taken 3 other agents ( extramase, (sp), aromasin, and used the Fulvestrant injections, I was unable to go on them again. I had not used Tamoxifen in the past soo they are using that in combination with Verzenio. It seems Dana Farber’s experience is that while Ibrance and Verzenio are similar, he felt Verenzio was stronger and wanted Me to have another chance on the hormonal treatment before going into the chemo drug! They don’t feel at this point, and because of the way I present that it necessary to use chemo. If after 3 months and a PET scan that is no improvement, they will move to chemo, but we might just lucky! A school of thought from two very excellent physicians! I hope and pray this works, but if not then onward and upward! It’s a crap shoot at best and we are all in it to win it! God is fighting this war with us! Thx for your reply. I’ll keep you posted going forward! God bless❤️
Thanks Kathy...I know Dana Farber is one of the top cancer centers. I’m in So Calif so I would consult with City of Hope where I had a stem cell transplant years ago when I had my first occurance. After that I took Tamoxifen for 10 years. Then I had a 2nd reoccurrence- did 5 weeks of radiation then took Letrozole for 9 years before my 3rd/current reoccurrence. Now metastatic-mets to lungs. I’m having very low WBC/neutrophils with Ibrance and have to stop after 14 days and need 2-3 weeks off before I can start again. But based on latest scan it is working so I’m happy but always open to possible alternatives. Started following you so I can stay posted on how you are doing. God bless and wish you well!
Thanks so much for your early reply! You have certainly been through a lot and are quite a warrior! I just got my meds delivered (Verzenio). Had a hell of a time, because my insurance wouldn’t approve with the “cocktail” that was being used with it ...outside of their box! So we applied directly to the Lilly Pharm Co. and I was able to get on their patient assistance program. Thank God. I’m 77 at this point and just want to continue to feel as good as I have, but as my onc says, if I was presently with big growth and pain and weakness, they would have to go forward with the regular chemo treatment. This is only a chance that I might get lucky! I CONTINUE TO BELIEVE and it keeps me and my family going strong! Loved hearing from you, please stay in touch. I live in Syracuse, New York. My best to you with your treatment. God bless! P.S. I also continued to have very low white cells too, and have had an extra week off now and again on Ibrance. So we will see how this Verzenio goes! Kathy
I’ve been on Faslodex (Fulvestrant) and Ibrance for 3 months after being on Letrozole and Ibrance for 18 months. I had the same kind of results you had, going NED and then having more activity again. Since going on Faslodex I have been very tired so my oncologist decided to do my CAT scan a month earlier than usual. I just got results and it looks improved So I guess it is working. I don’t love the shots, and some nurses are better than others. It still doesn’t explain my extreme tiredness so we will talk about that when I get home after a vacation in Maui. Maybe I just need the sunshine...Oregon is pretty gray at this time of the year! Elaine
Hi Elaine, thanks for your experience so far with Faslodex and Ibrance. I am going to follow you so I can see how you continue to do with it what you end up doing with your fatigue. I went to Hawaii a few years ago and we loved it. Maui was lovely. I think the sun will be so good for you. Enjoy the weather.
Just a note: I went on vaca to the West Coast last year (I'm from NYC). Since I was on Ibrance and I didn't know if my white blood cells were going to be low, I took extra precaution and used a medical face mask on the plane and covered it up with a scarf that I was wearing around my neck. Even before I got cancer, I would always worry about getting sick from the air in planed so I didn't want to chance it even more now that I was on Ibrance. I never got sick from the plane or on our trip and we spent 2 weeks visiting Grand Canyon, Bryce, seeing a bit of Utah and then final two days in Vegas staying in a large hotel.
I have done well with Ibrance because I've never gotten sick (even a cold) and I take the subways to work and work with a lot of people in my department. Plus I have two kids!
So far I haven’t gotten sick either! We went to Eastern Europe on a Viking River Cruise last October and my husband and our frequent table mates all ended up with bad colds. Other than going to bed early one night because I was exhausted, I didn’t have one problem. I also have 4 grandkids, all local, and although I try to avoid them when they are really sick, it’s impossible to avoid their illnesses completely and I haven’t caught their germs yet either.
Right now I’m feeling better and not so exhausted. Maybe some sunshine and extra naps were what I needed. We will see how it goes!
One of the things I realized very early on was that I was going to be encountering alot of needles and that I really needed to get over my fear of them! I'd had a very bad experience with an IV infiltrating when I was a brand new mother and hospitalized for extensive bleeding. I had kind of a mild PTSD like reaction to needles after that. So I really worked on making friends with needles and have actually gotten pretty relaxed with them. Somebody here mentioned Letrozole. It is very similar to the Arimidex you were on, both being non-steroidal aromatase inhibitors. I've been dealing with MBC for nearly 16 years (diagosed 3/1/2004) and it's my impression that oncs tend to favor one or the other of those meds. I believe that Letrozole is a bit newer than Arimidex is. Drugs like Ibrance were not around when I was initially diagnosed, and I got almost five years from Letrozole. Then on to Faslodex for over 9 years! I found it easy to be on. I agree with those here who suggest getting your weight off the side being injected. Even leaning against the wall worked for me when there was not something else to lean on. Warming it an injecting slowly does help. I saw the "protocol" for giving those shots on a desk at the cancer center and it was for nurses to take at least three minutes for each injection! I was put on Ibrance with the Faslodex for about 9 cycles in 2016 but it damaged my lungs and I am now having to see a pulmonologist as well as all the other doctors, and am on two inhalers but still get out of breath very easily. A good friend of mine died from acute pulmonary collapse from Afinitor, so I am a huge fan of these new drugs that are taken with the older meds. I wouldn't tell people not to use them but to report immediately any breathing issues--immediately like 2 a.m. I have seen a bc specialist onc for a second opinion two times during my years with mbc, once just after initial diagnosis, and again last year after my long time onc retired. The best place to go is one of the Comprehensive Cancer Centers There is a link to a list of them on the home page of this group, at the right of the page under "resources.' There are about 50 of those, scattered across the country (US), though there are more of them on the coasts than in areas in the middle of the county. I live in Michigan and there are two in Michigan, plus one or two in Chicago that would be about the same distance for me. Insurance generally covers those appts.
I'm a little concerned that Ibrance and Faslodex caused damage to your lungs because that's the combo that I'll be switching to starting this Tuesday. Was it your onc that told you it was Ibrance and Faslodex combo that caused it? Or one of the two drugs that caused it..? I will bring this up with my onc when I see her on Tuesday.
My treatment center is the Dubin Breast Center in NY which is part of Mt. Sinai Hospital. My onc specializes in breast cancer and is kind and a straight shooter. I never got a second opinion for my initial diagnosis but I'm probably gonna go to Sloan for a second opinion on the latest scan results and treatments.
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xo
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