Ibrance (Palbociclib)
Comments
-
Bruntersmom, I am sorry you have joined us but as RK2020 said, you have found your tribe!
The beginning of MBC is the hardest, especially when you have been fighting for answers for 5-6 weeks or longer. I am also sorry about your knee. I think your plan is a good one if you can wait that long for the knee surgery.
I have been on Ibrance and fulvestrant (injection of hormone blocking/disrupting medication) for 3 years and 3 months. I am 58. I truly thought my life was over, I had to quit my job and get my "affairs in order". My oncologist encouraged me to not make big changes until I could see how I felt on Ibrance/Fulvestrant and also how I responded to the meds. I had two dose reductions of Ibrance due to low white blood counts at the end of the cycle which is very common - I felt fine, but it's not good to have such low counts.
I have had some great trips with my husband and kids (despite covid!) these past 3 years while working full time and really feel pretty good. I was so shocked and devastated when I was dx stage IV. I came here and found great support from women (and some men!) on Ibrance and others who had been on Ibrance for a while and had to move on but are still doing well. It gave me so much hope and really helped me catch my breath. I hope our thread helps you. Let us know if you have questions about the meds or side effects.
0 -
Aprilgirl1. Thank you for the encouragement. It is a whirl wind. I was told in the ER i needed to get my affairs in order. One Dr. made me sign a hospital type of DNR. I go from the gym Monday and working to being told I am dying on Tuesday. Yes, total freak out. My hospital attending put on my discharge papers I probably would not live 30 days past hospitalization. I will cut the ER Dr a break. My wait time at the ER was 9 hours and I am sure he was exhausted. My attending once I was admitted was not very good.
Yesterday I finally started breathing better after a coughing fit that seemed to clear out my lungs. I am breath well for the first time probably in a couple of months looking back. Now I have full breath sounds on both sides. Need to get my blood pressure under better control he didn't want to do too much adjustment until he saw what the oncologist was going to do. I see my internist on Thursday and hope I get clearance to go back to the gym. I have been riding my stationary bike to keep my legs strong. Less pain when the muscles can do the work. I may have to adjust my workouts but I don't plan on stopping. The gym I go to is very big on cleanliness. Covid went through the gym before testing was available. Many of us had bad colds and lost our taste and smell in Nov/Dec 2019. It took me till March to fully recover. The fatigue following was horrible. The group I work out with are rarely sick.
I took a step back last night and read some of my medical reports because I want to ask some questions of my doctors. I am a detail kind of person and this helps me sort things out. It does drive other people crazy though. I realized last night, I have only one small spot where the cancer has metastasized too so far. That one spot wreaked havoc but it has also responded well to the meds. That spot is 3/4 by 1/8th of an inch (2.3 cm by .03 cm). It is information like this that allows me to process what is going on and move forward. I have blood work on Thursday as well. I guess Dr. visits are going to be a new activity to my schedule. If I continue to feel as well as I do today, I will get back to doing the things I like and enjoy being with everyone again
0 -
Brutersmom,
Your hospital experience sounds horrible!!! Being forced to sign a DNR and then classified as having less than 30 days to live. I think doctors who do not regularly treat MBC are way behind the times. I went to the hospital 6 1/2 years ago with extreme pleural effusion and extensive bone mets. The resident attending told me I might soon be paralyzed but at least he got the radiation started right away. My pleural effusion persisted for about 6 months so I think you are ahead of my game and I'm still here! Enjoying life, working out, tomorrow I'm playing in a pickleball tournament. So keep your chin up and let Ibrance/letrozole do its work. Good idea to keep up your strength-I find I have to be very proactive about that. Best wishes.
0 -
Oh, brutersmom, that sounds horrible! Why would any doctor tell you that? I, too, thought I should "get my affairs in order" and then go to Disneyland, but the RO assured me I was not actively dying.
I'm glad you found us here. We're a good group, although our humor may be a bit twisted at times.
Carol
0 -
bruters, I agree with chicagoan that some doctors are woefully behind the times when it comes to an mbc prognosis. If they are not specialists in the field, they should refrain from making such depressing predictions of life expectancy. They take an oath to do no harm yet fail to see how their words can be injurious.
Six or seven years after I was dx with mbc, a disability cancer doctor told me I probably just had arthritis because women with mbc didn’t live longer than 3 to 5 years. “That’s it,” he said, making a slashing motion with his hand. He denied my disability claim but I got a lawyer and won the case.
For ten years I had an oncologist and her nurse who had the wonderful skill of not being alarming. I mean, they could deliver the worst news and practically make you feel like you were going on a picnic! It wasn’t that they gave any false information, they simply did not add a gloom and doom forecast to the mix. They weren’t perky positive but there was always an air of hope about them. Both retired at the same time and I have another good onc, but she is younger and her staff is a bit more hyper. It’s an adjustment for me.
0 -
Lets just say that I felt like the right hand and the left hand did not know or understand what each department did in the hospital. I did learn a lot during my ER and hospital stay. I think that my oncologist and internist are much more positive Physicians. I know when I ask my internist about the 30 day comment he just rolled his eyes up in his head and said ignore it. Lets deal with the problems at hand and I am sure you will feel better after talking to the oncologist. I don't think I am dying any longer. I still work part time. I told the office manger today that I feel so much better then when I first talked to her and she is stuck with me for a while. I will be finalizing getting my Will, DNR, and POA finalized this week. My husband has always been uncooperative but I issued an ultimatum to him and he finally agreed. Vacation is planned for the summer. My hobby is sewing. Yesterday I started working on my spring clothing to freshen up my closet. I have also this time told several people friends and people at work (carefully selected of course what is going on) Having that hug and support has been helpful. Next step is back to the gym, I need a good workout. Just want to get some guidance from the docs on what I should or should not do. I think I am on the right track. I look forward to some twisted humor and helpful information.
0 -
bruters, good for you for issuing the ultimatum to your husband about drawing up those papers. You will both feel relief to have those things in place and get on with the process of living. It is a mature action to tie up loose ends so loved ones aren’t left in the lurch at a difficult time. Glad your internist and oncologist are more level headed and sterring you in the right direction!
0 -
I have been fortunate or unfortunate to have the same doctor for 9 years. Had her after the second time of having cancer and now MBC as of Oct '22. I like her approach and I also like she gives it to me straight but doesn't sugar coat anything nor is she an alarmist. I think our personalities fit well together and most of all I trust her. It is important to have a doctor you can trust and one who you think is looking out for your whole well being.
I was very active in my care in 2013 but I have to say alot has changed since then in treatments ect. I would agree with the other ladies that some doctors/offices are behind the times and do not know. I think, and I could be wrong, unless someone is actively in the stage of dying and all meds have been exhausted a doctor can not make the statement you have X amount of years left and be accurate. IMHO
0 -
Hi, I tend to mostly follow along (post a bit) on these boards, not sure where I fit in, a lurker I guess! Diagnosed MBC in September, I started ibrance and fulvestrant October 25; a scan for hip pain on 12/12 showed a good amount of progression. But a scan mid January showed “grossly stable” and a lot of “flare phenomenon”. So a mixed bag and staying the course. I’m having hip surgery tomorrow for a fracture through the acetabulum caused by a met; having to take a break from ibrance has me quite nervous. Started as bone Mets, but 12/12 and January scans showed liver lesions. I guess I should be on the liver Mets thread? At this point I have no symptoms, no liver enlargement, or out of range liver readings and my heart just aches for what some of the people on the liver thread are going through. So I would feel bad complaining about my anxiety (and tears)over the new liver involvement. Anyway, I guess my short term goal is to get through hip surgery! (Also I think my MO must think I’m a pain in the butt as I question everything, haha. I’ve gotten 2 second opinions. So far.)
Reading these boards and all your discussions has overall helped me so much. Although reading about all the recent losses has been heartbreaking. Brutersmom, I too went to a gym quite frequently, but now on crutches for that hip. Looking forward to just plain walking again!
0 -
Believe
You are certainly welcome on this thread. You will find that many of those here participate in several topics. They are all so caring and great for moral support. I am here mostly as a lurker too. So much is posted and it's hard to keep up and respond to everyone.
Don't worry about taking a break from ibrance for a little while. The faslodex will be enough for a while.
0 -
Believe60, you are always welcome here . I know there are Ibrancers with liver involvement that have done well on Ibrance / femara or fulvestrant. I'm so relieved that you can have your hip surgery and like gailmary said , it's ok to have an Ibrance break to keep your white blood cells up during and after surgery to avoid an infection. Many people follow and post in a few threads. Your recliner scan that showed Stable and "grossly stable" is great news. The fact that you don't have liver pain or high liver enzymes also seems like a good sign . You are so smart to have had second opinions .
I am in your pocket for your surgery . Pls let us know how it goes , ok? I was on the MBC zoom last night but my computer shut down as I left my charging cord at my office . Hang in there , you are not alone❤️0 -
Has anyone gotten mouth sore from ibrance. I am on my week off. They got really bad last night. I went from 1 on Sunday to multiple sores on my tongue and gums last night. I called the Dr's office first thing this morning. Unfortunately I had a meeting and apparently had no cell service and the call went straight to VM. I called them back but they have not responded yet. What can I do to help. I took Tylenol but have not gotten much relief. Doesn't help that I don't sleep on hormone blockers and I have averaged 2 hours a night for the last 2 days and would like to talk to them about that.
0 -
Brutersmom-Mouth sores are very common with Ibrance, especially in the beginning. What works for me and was recommended by PatGMc was Greek yogurt. I eat is a few times a week and it protects my mouth. If I happen to get a mouth sore, I eat some right away. Other people have had success with other methods, but I like the Greek yogurt because it isn't one more medicine to fill and is also very nutritious.
0 -
For me I got the sores when my neutrophils were tanking. I used Colgate Peroxyl mouthwash to help manage them (has 1.5% hydrogen peroxide in the solution) but I think there are similar over the counter mouthwashes (Orajel, etc) available in the US. If yours are so bad they are keeping you awake, you may need to ask for a prescription mouthwash.
0 -
Sondraf. It is the letrozole keeping me awake. The mouth sores just get exaggerated cause i am exhausted. Between night sweats and my racing thoughts I don't sleep. I go for my blood work tomorrow so I guess I will find out.
0 -
Chicago and. I have some Greek yogurt. I will try that and keep some on hand for the future.
0 -
Brutersmom-I initially had insomnia problems on Letrozole too. What helped was cutting out all caffeine. Now I occasionally have a soda with caffeine but no caffeinated coffee or tea. I was a heavy coffee drinker since my teens. It's liberating not to be addicted to caffeine and I've found some great decaf beans-so I still have a cup or two every day. I felt that high quality sleep was really important for my healing so it was worth making this change.
0 -
Chicagoan i do have some caffine but my rule is nothing after 5. I did a total decaf last time and it didnt help. I had issues with hot flashes, mood swings and sleeplessness in menopause and used an anti-depressant to help get through that time period. I was hoping exercise would help this time but it hasn't made much of a change. I am only riding a stationary bike right now because of the lung issue. I am hoping to get the ok to go back to full or modified full work outs tomorrow or very soon. Don't know if they will help, but I have to find a way to make this work. I am not ready to give up and quit living.
0 -
Saw my MD today and he said my lungs sound clear. He doesn't think there is any fluid remaining. I also did my blood work. WBC, RBC, hemoglobin, hematocrit, platelets, eosinoplil, protien and AST are all low. Not sure what it all means but the doctors office should call tomorrow to tell me what is next. On the positive side they must be going up because the mouth sores are much better today.
0 -
Hello Dancers - I’m posting to say hello and ask a question. Usually I’m on the bone mets thread but yesterday was a bad day at the MO office and I’m scared. I’ve been on Xgeva, Ibrance 125 mg and Faslodex since January 2020. Going into my 4th year....yay?! So now I’ve had progression in my sacrum and received SBRT radiation to zap it last month. MO says if I have progression again on Ibrance, the next step is chemotherapy. WHAT?! NO!! I’m not sure I can do that again (had chemo for 8 sessions in 2010 when first diagnosed as stage 2B) and then advance to stage 4 in December 2019. What treatment comes after Ibrance fails? I’d rather take a pill or receive radiation. Thanks for any feedback. Hugs to all....Sharware
0 -
sharware- I did the same as you. I had progression after 11 cycles of I/F, zapped the spot with radiation and got a total of 19 cycles. After more progression I was given a choice of staying on Fulvestrant and switching CDK4/6 inhibitor OR swapping out Fulvestrant and CDK4/6 inhibitor OR aromasin/affinitor (also oral). I chose Verezenio with Anastrozole. It was a quick failure and I wound up with 6 new bone lesions and 5 liver lesions. Prior to this I was bone only. I was then given a choice of Halavan (IV) or Xeloda. I decided on xeloda because it crossed the blood brain barrier and I had lesions in my cervical spine. That was too close to my brain for my comfort. Besides, it’s oral and would allow me to travel easier. I tolerated it well and it worked really well. Three months later, I had almost nothing show up on my PET. When I progressed again, I started another oral med but it’s a clinical trial.
If you have a PIK3 mutation, Piqray is an oral med. And if you have an ERS1 mutation, Orserdu was just FDA approved.
Although I have yet to receive chemo for MBC, I had dose dense AC+T for stage 2. My oncologist told me that when we are given chemo for MBC, it is at a lower dose than prescribed for early stage.
You may want to discuss the MAINTAIN study with your doctor. https://www.targetedonc.com/view/ribociclib-with-switch-endocrine-therapy-beneficial-even-after-cdk4-6-progression-for-hr-her2-breast-cancer
0 -
Sharware- as RK2020 says- there are lots of oral meds still to try- maybe your doctor considers the Afinitor and Xeloda chemo- which Xeloda is- just oral. I did well on both of those after failed Ibrance. I got some zaps to isolated bone mets while on Xeloda and was able to extend the xeloda by about a year. Oral meds are way easier (I think) I am on Enhertu which is every 3 weeks- but, way more of a hassle than a pill.
I think that you are doing the right thing by educating yourself re your options so you can have a say In what you do next
0 -
I should have shut up. Almost 2 months after sugery I went back on 75mg for my short cycle;18 days on 10 days off. A couple of small mouth sore, the usual fatigue a random rash, plus my usual low ANC (.8) ..so now I am off for at least 2 months...unclear. Onc is away during what would be my next month app, her NP is on maternity, so she said "it's no big deal" and I'll see her in 2 months. "You had a lot of Ibrance". Am I moving on to something else?? Just venting. Keeping it positive at home. Yay! I don't have to take the medicine that makes me tired!
0 -
Ps, I do read about you all, I just get overwhelmed with responding. But my thoughts are with you.
0 -
Sharware - I had local growth so they treated that with surgery and had I not had a single crappy met get its grow on, they would have kept me on Ibrance. But it did so I switched (Lynparza) and frankly it worked out well for me as I dont have the neutrophil issues like I did on Ibrance. So try not to be too apprehensive of a change, it may work out ok!
I havent recently asked what would be next for me as I havent been on this drug long enough to worry yet. But I was offered my choice of: Lynparza/letrozole, Ibrance/fulvestrant, or Xeloda. To caveat that - if you progress with more bone only they may not do a biopsy, but if you have progression somewhere new that could throw all potential options out the window if you have a receptor loss (or gain, but I guess that is kinda rare) or a mutation shift. Short answer: Xeloda seems to be the most common swap after Ibrance.
0 -
dancemom - Your doctor must be confident that Letrozole will keep things under control for awhile so sit back and enjoy the break. When my neutrophils were low on Ibrance, my MO suggested moving to Verzenio. Verzenio has less incidence of neutropenia. For reference, once CDK4/6 inhibitors failed me, I had developed liver lesions so I moved on to Xeloda rather than trying affinitor/aromasin. I do not have PIK3 or BRCA. Good luck and keep us updated.
0 -
Believe - Just checking on you after your surgery. How are you feeling?
0 -
Regarding the mouth sores, Oraljel Mouthsores rinse seems to keep them at bay for me. It's in the toothpaste aisle at my local grocery store.
0 -
thank you sunshine99. I picked some up in my travels today for the next time.
0 -
I had a lengthy talk with the oncology nurse today. I learned that I did not do my labs according to hospital protocol. I went during my off week and to soon. So we set a new start date for Ibrance and established a day I would go for my blood work every 2 weeks for the first few months. This makes me wonder what else wasn't discussed or what I miss understood. I was pretty overwhelmed and not feeling the best and my husband went with me that visit. I am asked my daughter to go this Thursday because she is more like me and likes to ask questions and understand. I guess I am wondering if I miss the blood work frequency although it is not in the notes on my chart what else could I have missed. I am wondering what are questions I should ask and what questions did you find helpfull?
0
