Ibrance (Palbociclib)
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Oh I believe that, Cure. I've had neuropathy in my left toe for years since that disk prolapse and if I don't exercise it gets worse. Soon as I go for a walk or light body weight exercise or a swim, it calms down.
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Cure-ious-Thanks for sharing the info on neuropathy. I had something like develop during my first six months of treatment but I didn't think Ibrance/Letrozole could cause neuropathy. As I got better, I was able to get more active and the neuropathy disappeared. This year, the surgery to insert a rod and screws into my broken leg has caused nerve damage in the foot and shin-mainly on top. But I've noticed that once I resumed pickleball in September, the nerve damage seems to have diminished. So it's encouraging to know that aerobic exercise can stimulate new nerves in the feet to take over.
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Wow, interesting info on neuropathy, etc.
I, too, started on a 125 dose and dropped pretty quickly to 100 due to low neutrophils. I had a couple of "hold off for a week" while we waited for my ANC to come back up.
Right now, I'm on a two-week break. I was on day 15 of my 21-day cycle and ended up in the hospital with COVID. I stopped the Ibrance and will resume (hopefully) after I see my MO next Monday.
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One more quick question? Did any of you experience hair thinning or hair loss? I just want to know what to expect. Thanks
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Hi believe, I just looked back at my tracking spreadsheet and it looks like I got four months of the 125 dose before switching to 100. My lowest ANC was .44. (I'm kind of an Excel geek and have been tracking my stats since my first diagnosis in 2007.)
Carol
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gigil - I haven’t been sick yet since my dx in early 2020. I get my flu shot and Covid boosters and follow good common sense. Even before cancer I was always leery around the holidays but again, I just practice good hand washing habits, punch elevator buttons with elbow etc. I’m not on Ibrance anymore but my ANC/WBC is still low. I’m out and about every day because that’s how I want to live my life. I take these drugs to live my life, not shelter inside. Anyway, that’s my thinking which I know varies from some others. It’s a personal choice.
My hair started to thin a bit on 125 but I was quickly put on 100 and then 75 and the thinning subsided. I’ve read a few ladies whohave reported substantial thinning over a period of time but that seems to be the exception.
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A last note about neuropathy, the existing nerves in the feet, although irritated or damaged, do have a significant reserve capacity that one can tap into with active exercise. But because the problem is drawn-out, since it can take at least a few months for the nerves to heal or calm down, and is often worse at night, and in the cold, etc., my onc said if becomes too problematic, ask for Gabapentin, which is very effective and also helps with sleep problems from neuropathy, so its good to know there are also medical options.
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Gigli-I've stayed on 125 the whole time. I often am grade 3 neutropenic but do not seem particularly susceptible to illness. I take no particular cautions and instead just live my life and try to have fun. I lost a significant amount of hair the first three months. I started with super-thick hair and it became a little thin. Somewhere down the road I started taking MSM as a supplement and my hair thickened again. It's not like it was but it looks good and people think I have thick hair. I take this supplement on my own and never discussed it with my MO but it doesn't seem to have hurt anything. I think the MSM also helps with joint pain.
Cure-ious-It is my experience that I will notice the nerve damage more at night when I am lying in bed. This current bout doesn't hurt at all-it just feels slightly weird, like my foot is numb and it also felt very strange to shave that leg. But it has been getting a lot better, I guess due to pickleball.
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Thanks everyone for all the good input. It has helped me so much! I would love to wait and start after the holidays, but my doctor wants me to get going as soon as possible. I had my first Faslodex injections on Monday, so here we go. Thanks, GiGi
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Gigi my hair thinned and became a different texture or dry. It stabilized now I’m on 100mg. In the beginning I didn’t notice fatigue or many se’s. The blood numbers did tank and I reduced from 125. I hope this is helpful. Many people also changed diet by adding yogurt vitamins etc.
Ladies thanks for sharing how active you are. It’s extremely encouraging. I do sometimes stay inside for fear of catching something and boy is that depr
Tanya
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My MO is starting me on 100 because she said she ends up knocking everyone down to that dose anyway. This has been very helpful, thanks. I do a yogurt smoothie every morning. I would love to continue taking turmeric, but I am getting mixed messages on that. I need to get more regular with my vitamins again. I too was encouraged to hear other opinions about getting out and socializing. Covid has been a real bummer the past two years, and the idea of being shut in even more has me depressed as well. I will mask, but I am really sick of beingshut in and missing out on everything.
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Hi everyone,
This is my first post and I'm hoping to gain insight from this supportive community regarding liver lab results while on Ibrance. Specifically, has anyone experienced an elevation in ALT, AST, or bilirubin? If so, did it resolve on its own or how was it handled?
I was diagnosed with bone mets a year ago. My initial treatment of Kisqali (600mg), letrozole, and Xgeva did not go well. I ended up hospitalized after 3 cycles of Kisqali and placed on extremely high dose prednisone due to a liver injury from the Kisqali. I tapered off the prednisone (I can't put into words how awful that experience was) and lab results returned to normal. However, the prednisone caused avascular necrosis in my distal femur, and I'm still trying to recover from that.
I've now switched to Ibrance (75mg) and my recent labs showed slightly elevated ALT. I've had a few short, interrupted cycles of Ibrance due to issues with the avascular necrosis and just completed 2 weeks on when these lab results occurred. I'm trying not to panic, but can't imagine dealing with this again. I'm hoping that it's not the beginning of trouble. It seems that most people are able to tolerate this medication.
Thank you for reading. Wishing you all well.
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Hi Ibrancers, I am catching up on our thread!
Ciaci - I will be on the lookout for your posts re Verzenio. You sure had a nice long run with Ibrance and your oncology team seems top-notch! Please come back and let us know how you are doing.
Chico and Chicagoan- gald to hear you are both doing well on Ibrance since 2016! Gives me a lot of hope.
Cure-ious - thank you for the info on B12! Wow. I will ask to have my levels checked next week when I go in to see my oncologist/get fulvestrant.
SondraF - good to see your post, but I am sorry you are also low on B12 and vitamin D.
RK2020 - I hope you are doing well on the trial and send you good energy and prayers for a great response. I also hope you had a nice 2 week visit with your son and his significant other!
Sunshine99 - so sorry you were in the hospital with Covid! No fun. Hope you are feeling better every day, I am sure the 2 week break from Ibrance was much needed for your body to rest up a bit.
Believe60, hope you are doing ok on your second cycle of Ibrance.
Gigil - I have tolerated both Fulvestrant and Ibrance pretty well. I have had 2 dose reductions on Ibrance, have been on 75 MG for almost 2 years. Started out at 125, dropped down to 100 after 5 months of low ANC, 7 months of hit and miss ANC on 100mg and 75 mg seems to be fine. I take mine in the am as it is easiest for me to remember with my vitamins (I already take vitamin D since I live in the PNW ). Hair - my hair thinned by about 25%. I have thick hair so it was not noticeable to many (except my family!) but if I pull it back in to a ponytail it is significantly different! It did start to grow back a bit once I was on Ibrance for 18 months and seems to have leveled off. RE: holidays/covid/socializing. I have traveled by plane quite a bit (with an N95 mask) and still work. I am fully vaccinated and boosted, have not had Covid yet. I am selectively careful (chose to not attend an indoor basketball game at our high school as they have high rates of RSV/COVID). I will attend some small parties. I live in a somewhat cold area (Seattle) so we can't really gather outdoors comfortably right now. I used to host a large holiday party. We skipped it in 2019 when I was dx with stage IV and then Covid happened so we no longer host this event....I am more comfortable hosting summer, outdoor gatherings at my home. My oncologist is not super happy about indoor exercise classes (people breathing heavy in a small space) so I gave up working out at a gym, switched to fast paced, long dog walks with my husband. Our chocolate lab needs 2-4 mile walks daily so that has kept us busy. I also work full time and find that I am tired by 8pm and try to take it easier than my former "normal".
Tanya, I know what you mean. It does get depressing to just stay inside. Hope you find a happy medium.
WeninWi, Wrenn, SF-Cake, Candy, and any past or current Ibrancers - hope you are all doing well.
MC22 - I am sorry that you had a liver injury from Kisquali and then prednisone caused necrosis in your femur...HOLY COW. .as we know these meds are serious but to experience that back to back is awful. All things considered, you sound great. Hopefully, Ibrance will be easier to tolerate and the slightly elevated ALT is not an issue and will settle down. I have not had significant elevations in ALT/AST or Bili but in my case ALT has some variations: one month it is 25 and the next 32, then the next 27. These numbers are within what my oncology office considers "normal" or in the green area. Hopefully, you will ease into Ibrance and these will not be an issue. Let us know what your oncologist has to say about this.
I just had my quarterly Pet/CT Scan with contrast yesterday. Results are "unremarkable" and " no evidence of residual or recurrent metastatic disease". Which is a relief. I don't take it for granted, for sure. I will see my oncologist next week (she is at the San Antonio Meeting with all of y'alls doctors!) and will start cycle 37. Onward!
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MC22 - I’m sorry your experience with Kisqali was so harrowing. I was on Ibrance for 19 cycles and my ALT/AST/bili never ventured out of the normal range. Once my mets invaded my liver, my ALT/AST have been known to slightly elevate but nothing too far out of the normal range. My MOs are not concerned. I hope Ibrance is much kinder to you.
Aprilgirl - 37 cycles…I’m jelly. Here’s to many more “unremarkable” scans. 🥂I’m thinking of posting a synopsis of my CDK2 clinical trial experience on the trial thread but not sure anyone would really care since I don’t get scans until Jan 23. My 2 week visit was interrupted a bit by my son contracting Covid and then me starting the trial but we still had plenty of good moments.
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rk, I think your trial synopsis is something that would be of interest to anyone reading the clinical trial thread!
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Welcome MC22 you’ve had a harrowing experience with kisqali let’s hope that the ibrance is better. 75 mg is a mild dosage.
Rk2020 I would be interested in hearing about your trial. We do want to know what the se’s are before the results are in too. Pocket duty for those January scans.
April girl just going grocery shopping is a gamble. I did go to 1 basketball game to see my grandson. It wasn’t very crowded bc you have to pay to get in so the students aren’t there en masse. I left before the end bc the bleachers are super uncomfortable for my back. I didn’t invest in one of those seat attachments bc I really shouldn’t be going that often.
Take care all
Tany
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RK2020 - I read your recap of the trial start and really appreciate you posting it. I am sorry it was a rough start, your care team sounds excellent. I have always wondered how closely they monitor patients. We all really appreciate you and everyone who have participated in breast cancer tx trials and I have high hopes for this CDK2 drug. Pocket duty for your scans in January! I am so sorry to hear your son came down with Covid during his visit. If it's not one thing, it's another. So happy you had a good visit, despite covid.
Tanya, I agree that a trip to the grocery store is a risk, we just don't know! My younger son is working at our local grocery store and still wears an N95 mask every shift. I went with him to HobbyLobby a couple of weeks ago which was pretty crowded. He wore a mask and got on my case about not wearing one so I started wearing one again while shopping indoors.
Chicagoan, I am visiting Chicago in mid February. Would you be interested in meeting for coffee? No pressure;)
Pocket duty for anyone who is facing scans in the next few weeks!
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Aprilgirl-I'd love to meet you when you are in Chicago. Once you know your schedule, pm me here and we can figure things out. I was once at the same music fest as another person here but it didn't work out to meet. I hope it will work out for us!
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I had 64 months on Ibrance, and am now on Verzenio due to "probable" progression. No one wants to say for certain, but after 5+ years on the Ibrance, we all thought a switch would be a good idea. I just wanted to weigh in on the "live your life" angle.
Ibrance used to come in yellow "DANGER - CHEMOTHERAPY" bags (I think some still get those), and that was horrifying. But I was determined not to live like a shut-in. What good was prolonging my life going to be if I couldn't enjoy it? So hubby and I went to Vegas for a week to celebrate my first clear scan (after 6 months). For my one-year-clear anniversary, we took a cruise around the Greek Islands and visited family in Italy. Since then, we've done three more cruises and bought a house in Florida. We spend winters in FL, and I've flown home every month (to NJ - where my daughter still lives in our house). I wore a mask when required to do so, but the minute restrictions were lifted, so was my mask. I'm not afraid of crowds (I think living part-time in Florida makes you more comfortable), but I'm fully vaccinated and boosted. I got COVID on my last cruise, but it was very mild. No more than cold symptoms for less than a week, and nothing lingering.
Going into the Verzenio, I'll live the same way. If side effects happen, I'll deal with them as they come, but I am absolutely enjoying my life these days!! We'll soon start planning our next cruise, on Royal Caribbean's new ship, Icon of the Seas. Oh, and a 10-day trip to visit hubby's family in Italy again will probably be late Spring or early Fall.
I wish peace, happiness, and great health to all this Holiday season!!!
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Aprilgirl thank you so much. Your words give me so much comfort and hope. ciaci I love your spunk and your lifestyle! It is inspiring. We have a house in Florida too - ChampionsGate. With me starting this new regimen, we won’t get down there until the end of January. I crave that sunshine. Do you have a doctor down there, or do you fly hometo get your re-checks and medications? Where is your place in Florida?
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gigl - I used to be a seasonal resident of Florida and had an oncologist up north as well as one at Moffitt. There was some drama with lost scans when I had progression but it saved me from flying back and forth when all I wanted to do was soak up some sun. I’m in Naples and would love to find a BC sister near me but apparently I’m the only woman with MBC in Naples. Lol. I even joined a SWFL MBC group and still everyone was 50-120 miles away. That’s just too far to meet for a cup of coffee. Good luck with your snowbirding.
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rk2020, if you ever get up toward Orlando and WDW be sure to let me know. We could definitely do a meet up. We drove to The Keys for a quick visit last year. I just loved the vibe there so much. I am hoping to find a good place to go to get my Faslodex injections. My oncolog pharmacist here says they cannot send my Ibrance to me, so I might have to fly to Minnesota once a month to get it.
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Aprilgirl1 - thank you so much for responding to me and sharing your experience. I'm just hoping that my labs return to normal when they're rechecked and that I can continue. I was really scared to start this medicine. Also scared not to. Congratulations on your scans! That's wonderful news.
rk2020 - I truly appreciate your kindness in responding to me with everything you have going on. Thank you for the good wishes for Ibrance being an easier treatment for me. Wishing you all the best on the CDK2 trial. I'm glad that you're feeling better with a dose reduction and hope the medication is very effective for you. It certainly puts into perspective what it takes to get these medications approved.
Tanya - thank you for the warm welcome and encouraging words about 75mg being a mild dose. I really hope that's the case and that I'm able to tolerate it.
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Well said Ciaci I too have continued to live my life as normally as possible. Of course Covid had an effect and I too am fully vaxxed and would mask if I felt there is a risk situation but otherwise I live a normal life with just the added trips out for bloods, scans and Onc visits
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Gigi, I'm in Fort Myers (rk, not far from you, so maybe next year we can try a meetup!), but haven't been down yet this year for more than a week because my husband had rotator cuff surgery last week and we were busy with all the pre-op stuff. I don't have a doctor in FL, because I go home every month, and schedule my doc visits to match my home visits. My specialty pharmacy mails my meds to me in Florida if I'm there when they're due to be delivered.
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gigil, my Ibrance comes from a specialty pharmacy. They ship it to me, either to my home or a local CVS via UPS. I started with one specialty pharm, then got switched to another (no idea why) and now I'm told that the pharmacy is switching to another. Probably has something to do with insurance, but as long as I get it, I don't really care.
I've had only a couple of snafus with the delivery. Once, UPS said they delivered to the CVS, but CVS insisted they never got it. We did get that one figured out without too much of a delay. The other issue was when UPS said my shipment was delayed (it was out for delivery, then suddenly delayed for a week or more). I called UPS and told them this was a chemo drug and then "found" it and I had it that day.
I would think that you would have that option to have it delivered to your home. Good luck with that! One less thing to stress over.
Carol
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ciaci- Reach out to me anytime!
Gigil - My insurance requires me to useAccredo specialty pharmacy and I’ve never had an issue mailing it wherever I was.
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ciaci that would be fun. I may just fly back with my husband when he does his two weeks work shift. He is semi retired and flies back and forth between Florida and Minnesota. I found it odd that my specialty pharmacy said they couldn’t send my meds to Florida. They should be able to, according to all of you.
I took my first dose last evening after dinner. It all went very good. However I woke up at 6 a.m. with the oddest feeling that my body was literally buzzing with power. I felt like super woman. It didn’t feel like a bad feeling. I told myself it was the med zapping those cancer cells. Has anyone else experienced that? I took a half a Xanax and meditated myself back to sleep, so it was all good
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Chicagoan, it will be wonderful to meet you in person! I will send you a PM of our plans when we have them set. I know it's the weekend of 2/17.
Gigil - I also have to use Accredo online pharmacy and they will ship it to me anywhere in the US. My first Ibrance night I was wide awake, waiting for side effects. Second month I started taking it in the morning as I felt like it gave me insomnia but I now believe it was just me. At the time I was devastated by the dx and felt like crap for lack of a better word - enlarged cancerous nodes had paralyzed my vocal cord and had been putting pressure on my windpipe so I hadn't slept well in a few months (while my PCP and Cancer Ctr dismissed my concerns!). Honestly, I read the stats on survival and almost quit my job. My oncologist encouraged me to wait and see how I felt on treatment. I felt better within weeks of the initial 2 doses of Fulvestrant/Ibrance.
I am so happy I didn't quit my job (although as self employed I have tried scaled back my hours) In the 3 years I have been on Ibrance I have traveled to Hawaii twice, a resort in Mexico (award trip for my husband), Southern Calif 4 times a year at least (to see family), Sedona Arizona a couple times a year (to see family), NYC two times, Cape Cod twice and we are now planning a trip to Europe for August/Sept 2023. We did a road trip in 2020 for our 30th anniversary to some Nat'l Parks (including Yellowstone). My oncologist has supported all of these trips and I just work around my monthly oncology appts and quarterly scans plus take basic precautions.
As Ciaci said beautifully, I don't want to spend my remaining time like a shut in while I feel pretty "normal". We aren't retired yet but are trying to take as many trips as possible. None of us know how long any treatment will work or how we will feel in the future. It still stings to have worked hard to save for retirement all these years just to have stage IV at 55. I know you all understand! Carpe Diem, friends!
Scanaxiety is a real thing and I have found that I put off planning trips until I get scan results. Planning a trip to Europe in 8-9 months is the farthest out I have planned. However, it is centered around World Cup Rugby tickets we have with friends so requires some planning.
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aprilgirl I can so relate to how you were feeling back then. I am there now. I suddenly have low back stiffness and pain in the right buttock. I am walking with a crutch. It started a week ago today and then I got my first Faslodex injections on Monday. I wondered it it was muscle tension, and then after the injections it got worse. Usually when I get these things they go away eventually with heat and acetaminophen. I used to also take turmeric, but a NP at my medical facility told me I needed to stop that. I was honestly doing pretty well until my doctor told me I was progressing based on a PET scan. I do think the morning feeling was a result of waking up after my first dose of Ibrance. Sudden realization. Hey I am doing all I can, right? I have even cut sugar out of my diet and red meat! I am determined to get to Florida this winter. I love hearing about your travels. There is still so much that I want to do and see!
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