Good morning all!
I’m taking Letrozole and my doc wants me to add a CDK4/6 inhibitor. Trying to decide whether to go with iBrance or Kisqali. If anyone has had experience with both of these drugs could you give me some input on side effects? It looks like Kisqali has a bit better outcomes but there is not as much feedback how it affects your everyday life.
Thanks, Cathey
hello , I have been taking Letrozole and Ibrance for 2 years , I have MBC in lungs , I am stable , I had a bit of joint pain for the firs couple of weeks , but ti be honest , I have been fine , I take 2 probiotic drinks every morning before I take meds , my hair has thinned quite a lot , but other than that , it hasn’t been too bad , I do have my down days , but that comes with the illness , Holl pop e you keep well, if you need any advice I am always here fore you ❤️
Thanks for the input Liessie!
You are very welcome
I’ve been on Ibrance for 20 months and other than some hair loss early on, no real side effects.
Hello, I have taken both. Started with Kisqali as my first line of medication/treatment together with Zoladex implant, Zometa IV infusion ( both given once a month) and also daily Femara tablet and Caltrate (calcium tablet with vit D).Kisqali was stopped after a few months as my liver enzymes rocketed....then had a few months with no meds to allow the enzymes to lower....before restarting the other medications and replacing Kisqali with Ibrance.
So far there have been no issues with liver enzymes while taking Ibrance.
I've been on this combination for about a year now...scans show shrinkage of primary and stability everywhere else.
Minimal side effects, I'm active and coherent.
CDK 4/6 inhibitors seem to be commonly prescribed as first treatments nowadays....the choice is often down to the best availability and price agreed by the local health organisation/insurance that you are attached to....
Good luck
hi Zoe. nice to see you😊. and great to hear you doing so well with your current treatment plan.....good for you! best wishes for continued success.
carole💛
Hi Carole....thanks, haven't been posting for sometime, but I still check in and comment if applicable.Hope your OK..and sending you warm holiday wishes.
XXX ZOE
my doctor preferred Ibrance as it’s only taken daily. I was on it for 2 1/2 years. Tolerated it ok, but tired at times. Also Letrozole and Xgeva. Ceased when it stopped working.
sorry to butt in here, but what happened when it stopped working for you? And what have you been put on to replace it please? I’ve been on the same as yours, (above) for 4 years now. My markers went up last few months and they thought I’d have to change treatments. But not markers have stabilised again. So I’m staying on the treatment for now. I’m very interested as to what will come next.
I had a solitary bone met in my neck of femur diagnosed in 2018. Treated with radiation, Letrozole, palbociclib and Xgeva successfully but grew again in 2021. I had a total hip replacement to remove it followed by another one off radiation. Now on exemestane and in remission thankfully.
You need to ask the Dr what's next. Because everyone is different and and affects us all different.
I have been on Ibrance and Letrozole for over 2 years. I was diagnosed with MBC to two bones. I am currently stable. I have some joint pain when I first wake up but it goes away once I start moving. My hair has thinned a lot, but it Is not noticeable to most people as I had a lot of hair to start with. My understanding is that both medications can cause low white blood counts and neutrophils but I have not really experienced that. I don't know if Kisqali can cause diarrhea but I have not had that on Ibrance. Also, everyone reacts differently to medications and may or may not have side effects. I think you should talk more to your doctor or perhaps their nurse practitioner (as sometimes they are more forthcoming) and ask about the pros and cons of each. Whatever you decide, I send you best wishes for a good outcome. Sending hugs
I've been on Ibrance 100 and Letrozol for 3 years. All the negative side effects my doctor attributes to the Letrozol. The only ones I had on Ibrance was low white blood cell count, fatty liver and dry hair and skin. I was stable for 3 years and my last scan in Oct showed "negative for Mets"in my 3 hip bones. I believe that was God. ❤
Our ONC also uses another CDK4/6 called Verzenio (abemaciclib) along with Ibrance (palbociclib) and Kisqali (ribociclib) (I put the drug name because that is how our ONC refers to these medications instead of the manufacturer's name) . My wife was on Ibrance/Letrozol starting with 125mg (Ibrance) but eventually ended up with 75gm. She did have same hair thinning initially but it seemed to thicken back after a month or so. She was also tired more often until she got down to 75gm per dose. Course her WBC was too high on 125mg and 100mg which would have something to do with her being tired most of the time. Once her proper dosage was determined she claims to have very little side effects.
my situation is similar to Discocats in that I started with kisqali and three months in, my ALT liver counts elevated and I was taken off the medication. My white counts were also affected. I stayed on letrozole though.
It took 5 months for my ALT to come down into normal range and then I was started on Ibrance in September.
My white counts are on the cusp but just enough to continue. I just started my 4th cycle this past weekend.
In addition to the low counts, I also get a slight rash/hives on the insides of my wrists about two weeks into each cycle but it clears on my week off.
I’ve noticed some slight hair thinning.
I have a CT scan scheduled in mid-January and that will be the first since starting Ibrance and I’m feeling hopeful that it’s doing it’s job.
I wish you all the best in finding the one that works best for you.
Cheers!
Kim
I developed shortness of breathe when on Ibrance for just a few cycles. It was diagnosed as Interstitial Lung Disease (pulmonologist described it as like gunk between the air sacs.) That was in 2016 and the lung damage is permanent. Humid weather really sets the shhortness of breathe off! I don't know how common this side effect is.
I developed Pneumonitis after three cycles of Ibrance. We just stopped it and I’m taking prednisone to treat the inflammation. What drug did you get after Ibrance caused the side effect?
I have taken Letrozole 2.5 mg + Ibrance 125 mg for over three months for MBC into my lungs. The nodules are few and small. I took the Letrozole previous to Ibrance for about 8 months after the nodules were enlarging slightly, however, the combination of Letrozole & Ibrance seemed to stabilize the nodules. Side effects from the Letrozole were very minor. Side effects from the combo were not significant. Lack of energy at times and reduced appetite to some degree. I did loose some weight but that seems to have stabilized probably due to my stomach getting smaller. I did chemo infusions years back for the breast cancer but had to stop because it was killing me. The Ibrance, being a chemo drug, seems to be significantly less toxic to my system than the infusions. Please respond with any questions. Hoping the best for you.
glad to hear Ibrance is more tolerant for you. Please know Ibrance is Not a chemo drug, it is targeted therapy a CDK4/6 inhibitor. So that’s probably why you’re feeling limited side effects vs chemo. All the CDK 4/6 drugs are comparable but they have said Kisquali has really good outcome data. I wish you continued success on the meds. I’m also on Ibrance and it has resolved most everything for me. All the best for 2023.
Thanks for setting me straight on the Ibrance not being a chemo drug. The lack of typical chemo side effects makes sense now. Wishing you and yours a great 2023 and more.
when I first started Ibrance a year ago the oncologist office referred to Ibrance as a Chemo drug. I thought I was on chemo. I researched it before taking it and discovered it was not Chemo. I was so mad that I was misinformed by that oncology office, that I called them and gave them a piece of my mind. They told me it’s easier to explain to new patients so they thought I wouldn’t understand what it was which was an insult to my intelligence and switched immediately to another practice. The new practice shares everything factually with me. I just didn’t want you thinking it was chemo when it isn’t. As new patients we need to be informed. I’ve come along way in a year and never thought I would know so much about breast cancer and drugs. I wish I didn’t. I do wish you success on the meds. They are good.
hi DDIL1. it is a controversial subject. ibrance is not a 'traditional' chemotherapy. however, it does kill both cancer cells and "healthy" cells which is the loose definition of chemo...and explains why you can lose a lot of hair. if you research a lot...you may come across a few medical articles that do classify ibrance as a chemo drug. I found some back in 2017 when I was making my decision. I was the opposite of you. I was angry that my oncologist did NOT call it chemo as I was holding an article in my hand that said it was. if it looks like sh#t and smells like sh#t, then it must be sh#t....lol. mute point I guess. bottom line....it can be a very effective treatment for many....regardless of it's classification. but it also can have some severe side effects for some. just wanted to throw in my two cents.
best wishes to you....
carole XO
It does come with side effects for sure and is effective. But both of my oncologists at Northwestern and Mayo do not classify it as chemo and calls it for the compound it is, which I do appreciate. I’m just happy the CDK 4/6 drugs have been effective in blocking cancer, being MBC we can’t be cured but it can hold it back for some people for many years praying for all of us.
Hi Cathey
Everyone is different. However, I will share my experience with you just as a FYI.
I was on 125mg Ibrance and 7mg Letrozole for 6½ years. My cell counts were lowered, moderate fatigue, initially had some headaches, dry skin, brittle nails, moderate hair thinning, joint and bone pain, very dry mucous membranes. After about 6 months some of these side effects improved but the fatigue, hair thinning, lowered ANC and joint pain continued. After 5 years my tumor markers started to creep up yet no new lesions were detectable on scans. Then, after 6½ years with no progression I developed a lesion on L1 vertebrae and increased nodules in lungs. The Ibrance/Letrozole were discontinued. Had several Radiation therapy treatments to lumbar lesion and started getting Faslodex injections, then 4 months ago my oncologist added Kisqali. Did not tolerate the Kisquali 600mg dose (heart palpitations, very low WBC/ANC, lowered Hgb, migraine headaches and such fatigue!!!!) The dose was lowered to 400mg day which I have tolerated better. No more heart palpitations or migraines anyway.
I felt better on the Ibrance/Letrozole combination, but like I said, everyone is different. Also, that could be attributed to my disease progression too. I've seen many on here who did not tolerate the Ibrance as well as I did.
Don't know if that helps. Personally, I'd go with what the oncologist thinks would be most effective and just see how you tolerate the side effects. If they develop and are intolerable then you are led to decide with what to do next.
Hope this helps.
Blessings, Namaste and Happy Holiday Season to you! ❤️🌲
That helps a lot.. thank you!
My doc has directed me to the published studies but is pretty much leaving the decision up to me. I've been on Letrozole alone for about 5 months (unable to afford either iBrance or Kisquali until 2023) which has actually been good as I have been able to separate out the side effects--quite minor for me--of the Letrozole alone. From the responses to my post, and some mild preexisting heart issues I'm going to try iBrance first and keep my fingers crossed.
So thankful for all who take the time to share on this site...
I Rance is a very good drug. Does what it's suppose to do.Do what your Dr tells you to do.
Hello - I was on letrozole and Ibrance for 14 months and my oncologist switched me to Ribociclib (due to better survival data) and Faslodex (due to slight PET only (not CT) progression.) I had very minimal side effects on the letrozole/ibrance combo. I did have a strange liver scan result, which looked like congested liver, in the early months of taking Ibrance; however, that resolved after about 6 months.
Ribociclib was another story. I developed significantly elevated liver enzymes (specifically ALT/AST) that were close to 20x above normal. I am currently on an oral steroid, called prednisolone, to bring them down and am hoping once I discontinue the steroids the enzymes stay down. I also had new measurable disease activity on the Ribociclib/Faslodex combo. It turns out my cancer is HER2+, as well as HR+, so I am now on herceptin and will start other treatments once my liver enzymes stabilize.
In summary, ribociclib seems to cause some issues with liver enzymes, neutrophils, and also requires constant heart monitoring, due to the possibility of QT prolongation. It may make sense to talk with your oncologist about these items and understand the rate these issues are happening with his/her other patients and how they're being managed. I know that for both my oncologists they have seen the liver enzyme issue, as well as chronically low neutrophils. The heart risk hasn't really been an issue; however, it is kind of a pain to do the ekg-lead on a monthly basis.
Thanks!
From the responses to my post, I think I'm going to go with iBrance for now... heart issues with Kisquali do make me nervous. I'll post any side affects (that I didn't experience with Letrozole alone) in 6 months in case anyone is interested!
..the input from those who take the time to share on this site are invaluable
I have found Ibrance to be very tolerable! Not familiar with Kisquali.
Everyone is different. Ibrance made me extremely tired. My brain would not work. I am on a 3rd round of Kisqali and I am doing better. It's not an all day fatigue. I need a late afternoon rest.
Thanks Cowgirl.. not getting a lot of feedback on Kisqali
sorry I'm late. I've just read your reply. I've been on Kisquali for 2 years and a half now. At first I had a lot of side effects: a serious rush all over the body and especially on my arms, which caused lymphedema in my right arm (I've been treating it for two years now and it's back to normal), terrible hair loss (then it stopped and it grew again even if curly and wavy instead of straght, so I have some hir which is still straght, some curly and some wavy), fatigue, bone pain and diarrhea every day. With the passing of time, just fatigue and bone pain are constant, diarrhea is just now and then.
The bright side is that I has worked since the beginning and for two years and a half I have no evidence of disease
Hope it' useful
Wow that's great! Thanks for the feedback..
I’m also on Kisqali and one of side effects it’s also skin rash itchy and also got lymphedema on my left arm , what treatment they recommend to deal with lymphedema ? My doctor decided to do radiation on collarbone lymph nodes but it didn’t resolve the issue.
Hi can I ask you what your dosage on Kisqali ? Just finished my third round started at 600 first month and I’m now on 400 for two months, but still having a lot of side effects.
I am on Kisqali 400. I started on 600 but I would need to take 2 weeks off because of low white blood counts. I am on my 9th round of Kisqali. On the 6th round I started the 5/2 schedule. 5 days on 2 days off. After the 3rd week instead of taking 2 days off I have had to 5 days off. The 2nd day off I do nothing. It's a day that fatigue is bad and I just rest. I am going to try to close the window to 4 days next week. It's tough. I hope your side effects get better.
thank you ♥️
They can lower your dose. Talk to your Dr
I will check on that.
Hello. I was on Ibrance and faslodex for almost 6 years for MBC to the intrathoracic lymph nodes and one large node near my armpit (which completely went away after a few months). I felt good the entire time, minor constipation my only complaint. I exercise almost daily which helped to keep the aches and pains some feel due to the injections at bay. Minor changes in the size and activity of the intrathoracic nodes caused my doctor to switch to Verzenio w/faslodex stating the data has shown better outcomes with Versenio. It was awful; tired, diarrhea and just general blah. After 2.5 months of that I ended up with liver mets and PET suggestive of bone mets. Just started Xeloda and I feel a lot better. Hope it works s well as the Ibrance did! That being said, I hope you do well with whichever drug you chose. My vote is for Ibrance. Good Luck to you.
Like others below have said, Ibrance and Kisqali seem to have different side effects and be better or worse for different people. I took Ibrance for a year, and the brain fog and joint pain were awful for me! My memory was so bad that I could hardly do my job. I also had the other usual side effects: hair loss, headaches, swelling, low white blood cell count, etc.
I'm going on my third month of Kisqali now, and I do not have the brain fog and joint pain that I had with Ibrance. I do have headaches if I don't hydrate well enough. I have hair loss and low white blood cell count. These are absolutely tolerable for me! I 'm hoping Kisqali is as effective for me as it is tolerable!!
Wishing you well!
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