Ibrance (Palbociclib)
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Happy Birthday, Aprilgirl! Hope you have a fantastic day and many more years of good health! So glad we got to meet in person this winter.
Ciaci-thank you for chiming in. I too feel guilty/uncomfortable sometimes about talking about how good life can still be with cancer, especially on Ibrance. The first few months were rough but for some of us, the medication really works to beat down the cancer. For me, exercise was critical to regaining my strength and energy. I've had several years of travelling, pickleball, supplying pulpits and have even started a part-time job. Pat did always encourage us to look on the bright side and to embrace life, even with cancer. She found great joy in her painting. While we all can't play pickleball, each of us can probably find some new activity that brings joy. Cancer has taught me to appreciate the blessings that can be found in each day.
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rk2020 - I'm just reading about Ibrance here because it may well be in my future, but I wanted to say how much I agree with your comments above about the need to always have hope, and to stop and be thankful for the good things still in our lives, in spite of the cancer. It does indeed help. Also couldn't agree with you more re how much it helps to get off the couch and out of the house, even if you don't think you can do it. I've been particularly grateful for that notion lately. I've noticed that every time I get out and talk to other people, these new stage 4 pains that I've been having seem to be far less significant. Looking forward to meeting up for lunch with a friend today to treat her to a birthday lunch. Part of me just wants to call her and say I can't do it, but I know that once I get out and walk up to the restaurant, and she and I start chatting, I will feel so much better.
That photo you posted gives me a new "image" of a "stairway to heaven". Most of my life I have always thought of that stream of light that comes down through the clouds and touches the ground after a rain storm, as a "stairway to heaven". (Always think of that Led Zeppelin song along with it.) Good for that Florida couple to have their own version!
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I am sorry to hear about PatMcG. She was such a talented artist and had a way to uplift our thread. I have missed her and am sad to know she passed away. Rest in Peace, dear Pat.
Chicagoan, thank you for the birthday greeting! I had a great birthday, thank you. 59 is fine! I was dx when I was 55....and was not sure I would be here to see 60. I am happy that I feel pretty darn good right now and look forward to being 60 in 1 year! I am so happy that we met in person. You have such a positive outlook and I am so happy to know that you feel good enough to start a p/t job and play pickleball! I also have some guilt that I feel pretty good right now on treatment when others don't. But, I also know that cancer is a fickle b@tch and none of us know when we will have to pivot and change meds.
Chico - great news that your scans show you are stable! Great to see you post.
Simone60 - I've wondered about you and others who don't log in often since the dreadful "upgrade". It is wonderful to see your post and know that you continue to do well on Ibrance. Thank you for letting us know about PatMcG.
SF-Cakes - hope you are doing well on Ibrance and the weather in SF has calmed down!
Spookiesmom - good to see you posting. Hope you are doing well.
Gigil - good to hear that you feel good on Ibrance and are doing fine.
Tanya, how are you doing? You are another long time Ibrancer that gives me hope!
Candy - I always am happy to see you check in and hope you are doing better.
DivineMrsM - I feel like you popped in recently which is always a treat and its great to hear that you are doing fine, too.
Ciaci - thank you for posting. You and Chicagoan, and Chico were all so helpful when I first started. I am so happy to see that you are doing well on Verzenio. Thank you for recapping your adventures, life is good!
RK2020 - thank you for keeping us up to date on how you are doing and your clinical trial. I appreciate that you are participating in clinical trials and am sorry the first one was not working but look forward to hearing about the new PROTAC one you are starting and sending you prayers and fierce energy that this kicks cancer's butt...you are a bright light in this stage IV experience. Your post about the Fort Myers Beach Cottage really does remind us that no matter what, we need to look for hope.
Threetree - keep us posted on what meds they start you on. I read somewhere on here that you are in Seattle and are a patient at Fred Hutch. I am west of Seattle and also a patient at Fred Hutch! I wonder if we have the same oncologist?
Sunshine99 - I find the medicare stuff overwhelming as well. I am 59 and on my husband's medical insurance. Hope you are doing well on Ibrance
Cowgirl - I was happy to "see" you last Tuesday on the MBC zoom:)
Believe60 - hope you are having a good week and your hip is less painful and getting stronger. It has been great to "see" you on the Tuesday zoom.
BagSharon - welcome to the Ibrance group. I am so sorry you got your dx the same week as your birthday. I am also 59, dx stage IV at 55. You will find great support here and I am sorry you have had a lot of side effects with Ibrance. Hopefully, that will settle down.
Brutersmom - hope you are doing ok, the fatigue was significant for me in the beginning when I started Ibrance. It did lesson as my onc. lowered my Ibrance dose.
I know there are others out there that I missed..GailMary, MaleBC, Dancemom, and others - hope you are all hanging in there and doing ok on treatment.
We are here for anyone that has upcoming scans- will be in your pocket while you wait for results, so let us know.
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Welcome Sharon. I think you will find the support here very helpful. When I started Ibrance in November of 2022, I was petrified. I wasn’t sure what to expect. Except for some fatigue at first, it has been tolerable, I am just getting my dose lowered to 75 mg, My ANC tanks on the higher dose by the end of my cycle. If it weren’t for the lab results I would even know it. I feel pretty well except for the first couple of days after my Fulvestersnt injections when I will have a random spasm in a back and rib muscle. It always improves with some TLC. Thank all of you for being so welcoming and so helpful. I am 73 and have homes in both Florida and Minnesota. This winter I am really enjoying the warmth in Florida. Minnesota is still snow covered. I feel fortunate to be able to visit Disney World whenever I want to. I have my daughter and grandson visiting this week, and on the weekend my husband returns. He goes to Minnesota for two weeks at s time to work at his semi-retirement job. I agree with the others in saying life is good most of the time and I will take it and I appreciate it very much.
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Aprilgirl1 - Interesting that you go to Fred Hutch too. Not sure that we would have the same oncologist, because I don't go to the Lake Union site, where most people do, but to a small satellite at the old NW Hospital (now all UW). I just couldn't bear the thought of driving to and having to park down at Lake Union. I think they have another site too over on the eastside like at Evergreen or something.
Treated one of my old "besties" to lunch last Saturday for her April 1 birthday - another "Fool"
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Aprilgirl
It is always so nice to read your detailed posts, you are so caring. Yes I am hanging in with my 18tb cycle of Ibrance and Fulvestrant, no complaints except the sore spots from the monthly Fulvestrant injections. Any suggestions or remedy for the soreness is welcome.
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Hi aprilgirl. The MO dropped my dosage to 100mg this cycle. I also switch the time that I take letrozole and Ibrance. I was having some stomach issues and discovered that for me taking letrozole with a meal was not working. I take everything about an hour before going to bed. Feeling my better. Less fatigue and stomach issues. Hoping my neutrophils stay a little higher this month.
For anyone who gets mouth sores. My dentist gave me Xlear nasal rinse packets and told me to rinse my mouth with it the last week of taking Ibrance. It is a saline solution with xylitol a sweetener found in diet foods. I used it and my mouth sores were minor compared to the first month. Had them for 3 days but very mild. My MO thought that was interesting. He had never heard of doing that. He thought it was magic mouthwash. Xylitol apparently reduces bacteria in the mouth which is why the sores did not get very painful. She also recommended some lozenges, but i can't eat or drink foods with xylitol. It upset my stomach but the rinse worked.
Spring is in the air and my allergies are kicking my butt this year. Developed a cough. MO said try Claritin and see if it helps the cough. It did. He said if it didn't they would look into it further but he suspected allergies. Also having some shortness of breath with when walking up hills. Since the mets are in the pleura of the lung and there were new ground glass and interstitial markings within the right lung in my January cat scan I guess some shortness of breath with exertion is to be expected. Pleural effusion is gone and my oxygen levels are 98 compared to 93-95 in January. I am still lifting waits and moderate exercise without issue.
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brutersmom,
Thank you for sharing the tip from your dentist about Xclear nasal rinse packets. Xylitol is a five carbon sugar that bacteria can't use for energy so they die off. Like you, xylitol upsets my stomach, so can't swallow it, but always looking for easy ways to help keep the mouth and teeth healthy. I recently learned that Xclear nasal spray is recommended to reduce viral load of the nasal mucosal membranes in the event of covid or other respiratory infection. Covid of course is a viral infection not bacterial, as many respiratory infections are, so not sure how effective it would be.
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weninwi.
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Be sure your pets can’t access that stuff. Itstoxic to them.
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MaleBC - great to hear you continue to do well, except for the injection site/occasional sore spot. I have no fix for that and experience the same thing once in a while. I think we have all been hoping for oral serds to replace these injections in 2023 but the first oral serd was only approved for patients with an ErSO mutation. I am happy that there are drugs that work better for those with that mutation. So, I will just sit tight and wait for an oral serd to replace fulvestrant. As I have been "stable" on fulvestrant I have the thought to not change anything, as if it's not broke etc etc but the shots are a pain in the butt, literally.
Threetree, after I had clear scans for a few quarters my onc. allows me to only go to the big SCCA/Fred Hutch to see her when I have scans. The other months I can complete blood work and get my fulvestrant in Poulsbo which is closer to me. I follow up with a NP over the phone or video call. This has really been a big help for me since I work full-time and spending all day at a big cancer center for a shot and blood draw was wearing me out (on those days).
Brutersmom - good to hear you have less fatigue and less stomach issues. It's great that you are still lifting weights!
Spookiesmom - great point! I had a lab that would eat the darnedest things off the counter. We did need to have emergency vet care a couple of times for her ingesting meds and dark chocolate (2 different events).
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spookiesmom, I had a funny image of "lab that ate things off the counter." I pictured the lab where you get your blood drawn! I pictured the staff eating things that were sitting on the counter - LOL We had three Airedales. The first one was the worst at getting into stuff. Chocolate and then there was the time where he ate a bunch of balloons. Caught him within 15 minutes. Hauled his butt to the vet where they pumped his stomach. They were the heavy balloons that you use with helium. 25 green and 12 white. Little stinker had a thing for latex. The vet clinic never forgot that one. He was fine, but sheesh...
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Sunshine, that is a funny play on words! Our Labrador Retriever Bella was such a food hound, she was relentless in trying to snitch food...or just get anything that must have had a scent? Once it was a bag from rite-aid on the bar height counter (higher than the kitchen counter) of my son's acne medicine! She could chew through most packaging.....but she was an amazing dog, despite this one personality trait.
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My Australian Shepherd can top that. When 7 months old and teething he knocked the Christmas tree down. Off to vet. Who took out a bunch of broken glass ornaments, 11 straight pins, and a jingle bell. 3 nights at vet. Geeze I miss him. My minature poodle ate a LOT of chocolate. 7 times she told me how lousy she felt. She was one to get into anything she could.
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Hello friends, I'm loving the dog pictures and things-that-our-dogs-ate conversation.
Happy belated birthday Aprilgirl! It was great reading your long and lovely post.
I've been having more back pain, so MO agreed to do a sooner CT scan, and the mild compression fracture in my T9 (where we originally found the cancer) has gotten slightly worse. No new cancer seen, which is nice, but we're going to talk about the bone cement options - vertebroplasty or kyphoplasty - on Friday. I'm hoping this procedure goes well, works, etc... and doesn't interfere with my travel plans with my Mum next month, please!
Starting cycle 27 of Ibrance next week, grateful that it's still keeping the cancer at bay. I know it will progress at some point, and I won't be sad to join my husband at some point so our souls can dance together for eternity... but happy to be with the rest of the people I love here on earth in the meantime.
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SF cakes I had the khyphoplasty at L1 I believe. I’m sure it was to strengthen the fracture vetebrae. I have traveled and had fun afterwards. It was sore but I was still able to be active.
I had kyphoplasty April 2017 and another one in 2019. A month should be plenty of time just be a bit gentle with yourself. I had physical therapy too.
Congrats on no new cancer!!!! Im looking forward to hearing about your travels next month.
Tanya
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Taking Ibrance and letrozole. This month the mo dropped me to 100 mg. I am not as tired as I was which is good and bad. It seems the letrozole is causing me to have night sweats and also I am find my brain will not shut down so I am not sleeping. I will be calling the MO office on Monday. Want to be a little educated. Lack of sleep was the reason I stopped in 2016. The MO offered no help back then. My current MO just retired. I have a new one I have never met. Besides benadryl which makes me hyper and stopping caffeine which so far hasn't helped. What things have worked for this issue.
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I take Trazodone for sleep. It's an antidepressant that doesn't work well for depression but is often prescribed for sleep. Not habit forming and cheap. You might ask about it. Benadryl hypes me up too.
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brutersmom - I take melotonin to help with sleep. It definitely helps me fall asleep quickly but it doesn’t always keep me sleeping the entire night.
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Brutersmom - I have used Melatonin when I have sleeping issues too. I can kind of tell if I am not going to fall asleep in a reasonable amount of time and take a liquid melatonin in those cases so I don't take it every night. My MO told me to be careful because you should not be taking naps if you are using Melatonin.
Everyone - I love the dog pictures! Honestly, I love pictures of all pets!
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thanks all I take melatonin and have for years. It doesn't do anything for this issue. My mind just won't slow down and relax.
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On a different topic. I have 10 says left of letrozole. I live 20 minutes from the pharmacy. My blood pressure meds refill about 14 days before I run out. I tried to refill letrozole because I don't knownwhen I will get back to the store. I was told it is a controlled drug and I cannot get it refilled until three days before I am scheduled to run out. When I got my prescription they didn't have it in stock and I had to wait 2 days. The is nuts.
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I wake up between 2-4 am sweating. I use 10 mg melatonin. I’ve noticed if I have a sweet snack before bed, I sweat. Don’t if I have popcorn or such. Caffeine is not a problem for me.
Something I’m trying now, is to clear the tension as best I can, then just keep repeating DONT THINK. Sounds crazy but does seem to be working.
The more you worry about it the worse it gets.
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Brutersmom,
I use a low dose melatonin 1.5mg IR/XR Immediate Release/Extended Release by Life Extension that I get from Amazon. I do wonder about the safety of long term, regular use. I heard an Integrative Medicine doctor recommend taking a break from nightly use. I have found Dr. Roger Seheult's MedCram lectures on YouTube re light exposure interesting and useful. He's an internist and sleep specialist and has posted several lectures about light and sleep. Here's the title of one, posted January 21, 2022: "Sunlight: Optimize Health and Immunity (Light Therapy and Melatonin)" in which he gives practical ways to naturally increase melatonin and reset circadian rhythm, plus more.
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I'm not on Ibrance, so in that is what's causing people's sleep issues, I can't help, but if it's just general sleep problems, I eat a lot of food with melatonin and I don't really have trouble sleeping. I have to get up several times at night to go to the bathroom unfortunately, but go right back to sleep with no trouble.
I tried a low dose of a melatonin supplement a couple of years ago and it made me feel really weird even throughout the next day, so I bagged that idea. For years now, I have been having a bowl of Greek yogurt with fruit and nuts in it every late afternoon. (I do intermittent fasting, so don't eat after about 4 or 5 pm.) The nuts I put in are walnuts and they are chock full of melatonin, and I think they really help. Other foods that have a lot of melatonin are tomatoes and cherries. I do a lot of those too. If concerned about taking too many supplements or drugs, or taking them for too long, you might want to look to food that has natural melatonin in it.
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weninwi and three-reel. Thanks for the suggestions. This issue is beyond melatonin which I already use, caffeine meditation, breathing, and sugar. My mind just won't shut down it feels like it is on overdrive. I can't explain it but the last time I was on arimedex I eventually could not function anymore and just wanted to stop living. My MO told me there was nothing he could offer so I quit Arimedex.
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hi all, been lurking. (For new ones, I've been on and off Ibrance since de novo diagnosis in March 2021. Off for 2 surgeries and 7 weeks radiation and recovery time for those. Plus rests between cycles. Within first few months I was down to 75mg.) Last few cycles I took I did 18 days on 10 days off. But my body can't do it anymore. Got a rash in Feb, and been off it since and my ANC is still not recovered completely. (1.6 after nearly 2 months off)
Anyway, on to Verzenio. I should receive it by the end of the week. I'll start on a low dose at the outset. The hope is that with a more even dosing drug, my body will handle it better. Onc says if I'm "allergic" to that, that's it for this class.
In mostly terrified of the diarrhea! We are heading into recital season. I can't leave a bunch of little kids alone in the studio while I suddenly run off to the toilet!!!
Now I've got to find that new thread. I've learned so much on this one from everyone's experiences,, Thank you!
Happy Passover/Easter!
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I use a tincture of THC/CBD/CBN, a small amount (50ml) about two hours before bed, it calms that anxious mind symptom, doesn't produce any kind of high, and while I still get up to pee and drink water, I'm more relaxed and better able to get back to sleep.
Also, letrozole is not a controlled drug, that pharmacy/doctor is lying to you, brutersmom!
Happy Easter and Spring to everyone.
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sf-cakes. I will check with my MO if they allow that combo. I still work and drive so I need to keep that in mind. I did look on the RX website. It looks like it is an insurance issue not a pharmacy issue. I talked to my daughter last night who sells health insurance and she said that is what the do when there is a shortage of a drug. I get 90 days so that is why they flagged it.
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ugh re drug shortages! My DD is severely adhd among other things. She is able to work with the magic of modern medicine. Suddenly she can't her meds anywhere- Dr is trying to change her scrip to something available that she can semi-tolerste. (She tried 4 originally before they settled on Adderall a few years ago, having fewest side affects.) She is currently in withdrawal and on a medical leave because of insurance companies.
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