Ibrance (Palbociclib)
Comments
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Faith and Intolight, never underestimate the power of a grandmother! I'm encouraged by your Ibrance success but even more by your determination to keep loving your families and making memories.
FYI: I've been writing in a journal called "Reflections From a Mother's Heart" off and on for some time. There are so many things I wish I had asked my mother so I'm trying to write what I can for my daughter.
https://www.amazon.com/Reflections-Mothers-Heart-Jack-Countryman/dp/0849952158
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Oh, Cure-ious, we ER+ PR- HER2- types are certainly destined for Ibrance driven PFS greatness. Thanks so much for mentioning our shared hormonal status and suggesting that it helps, again. It does lift my spirits. But best of all you have good scans in your pocket. Great way to start the summer. Look at it as a sign that you are will be kicking butt on all fronts long into the future.
This reminds me that I went to renew my drivers license today. She asked me if I wanted a 4 year license or an 8 year license ... which should really be about whether paying $50 now is better than paying $35 now and then standing in line to pay $35 in the future... but I of course have MBC. My mind briefly exploded with mortality risk calculations before I settled down and ... got the 8 year license. You betcha.
The ad is Ibrance feeling threatened by Kisquali, which makes sense since Kisquali sounds like another name for Sasquatch to me. Ibrance urgently needs to expand market share in advance of a full Kisquali roll out by creating demand ... and it won't help them to present the truth.
The truth is that Ibrance doesn't work for many of us and, knowing that, the ad makes me ill.
Today I am not feeling like crap, but not quite at Julie-level peppiness. Distracted from my exercise routine by some fun stuff, but the drug side effects do increase.
Saddie - I am so glad you are feeling so well ... imagine yourself feeling even better.
>Z<
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Zarovka and Cure-ious,
I am also Er+ and Pr-. I have been on ibrance for 13 months and am in remission. I had extensive bone, liver, and pleural mets. I wonder if there have been any studies on how long NED can last on ibrance.
Joellen
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Hi Everyone. It's been a while so I thought I would check in. I started Ibrance/Faslodex in August of 2015 and I'm still here to tell my story (initial mets were from 2001 and responded well to letrozole)
I decided on surgery for my liver met about a year later 6/2016, after starting Ibrance; my CA15-3 (tumor marker) kept going down and the tumor was shrinking. I thought I would just try and rid myself of the tumor surgically. Well, after surgery and being off of the Ibrance for 5 months my markers started rising with nothing showing on the scans. My doctor and I decided to start Ibrance again (100 mg) since my markers were moving up fast and my markers immediately went on a downward trend. I guess I will stay on this drug for as long as my markers are stable and no signs of returning tumors.
Side effects vary each month as people have been saying. The hardest for me was the indigestion at night, almost felt like a heart attack. Now I take Ibrance earlier in the day with lunch (always with food!), and take 20 mg of Pepcid every day, even on my off days. For those of you that might have some anal discomfort (I believe there is irritation due to the release of ibrance chemicals in the bowel movement), I found that something called "Boudreaux's Butt Paste" works very well with healing (super product for baby's rash too). As for the "other" drug, Faslodex, I find myself allergic to it, I have a rash several days later so I try and take a few allergy pills to prevent it. It's also sore for a while but I can't seem to find something that consistently makes it feel better.
Now that I've hit 70 I do feel more tired but make sure I walk the dog twice a day to get in those "steps". It feels good to be alive even though I know I feel slightly "drugged" in the morning. Take Care ALL
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Hi Nina - Nice to meet you. I am fascinated that you did surgery and then actually went off Ibrance ... monitored ... and then decided to go back on based on diagnostics. It's in the back of my mind to that if I get to what I feel might be a long period of stability. Not the usual approach, but it makes sense to me.
Thanks for dropping in. Keep us posted. I love people who are pushing the envelope on how to do this ...
>Z<
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Fight4two- after not even completing one cycle MO took me off the 125's to the 100's due to low platelets. Been doing ok since. Before Ibrance when I had low platelets (got down to 34) they had me take folic acid.
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Hi again everyone, since some of you seem to play around with dosing schedules, I'm wondering how strict you are about the daily timing of your Ibrance dose? I always take mine after breakfast with lots of water as they tell you to, but that's a bit of a problem when traveling. Tomorrow we are leaving fairly early and if I take it then and drink lots of water, we will be making a LOT Of potty stops which is a big pain. So do some of you take it after breakfast and then the next day after dinner or any other big time differences? If it was just one day, I would skip it ( I have skipped a day in the past) but then the same thing happens on our return on Sunday? I know, I'm probably just overthinking this. I tend to do that. :-).
As always, thanks for being here to share this "adventure ". I've learned so much from all of you. I truly don't know how I would get through this alone.
Faith
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Faith~ i never miss a doseage or the time I take it which is after a big dinner And lots of water. I would just call my onc nurse and run it by them just to be safe. I am sure a dose or two isn't major. But changing the levels in your blood and taking it at different times, i would just ask them what they recommend. Don't take any chances. Last time I saw my onc he said whatever you're doing keep doing it. So I listen!!!! Just wouldn't want any issues for you or any additional crazy side effects that break through. Your body is used to the timing and schedule you're on. Just a thought. Hopefully others will chime in! Have safe travels. Hugs ~M~
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sadiesservant:
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Faith, I never mess around with my Ibrance dose. The only thing I ever changed was the time but I waited until I started a new round. I also have been told whatever I'm doing is working so keep it up.
I will say however, that alittle over a year ago, my ca's started to rise. We were shocked because they have been normal since initial dx and never been an indicator of disease. Late last year and early this year I started complaining of left hip pain. MO said not in bone area. Finally Pet scan in Dec showed metabolic activity in left hip. again in early April rise in metabolic activity. A bone met. We decided to immediately radiate that area because it is the only active sight. I had to stop Ibrance because both affect your white count. I had 10 rounds and had to take additional time off due to radiation induced colitis. Finally back on I brance and in final week and I had forgotten about the tired. Woke up this morning and it took all my willpower to get out of bed. Ugh. Oh, forgot to mention ca's are back to normal range. Yay! This is the end of my 19th round. We are trying to buy me as much time on Ibrance as possible as I am not willing to go the chemo route.
On Monday we rode our horses for the 1st time since Feb. and it was wonderful! I rode BigB my new/old horse who I had not ridden in 7 years. Absolutely exhilerating!! No pain afterwards!! I am back in the saddle again, where other than dgs's, i am happiest!
I am so happy for those who have had good news! And I continue to pray for us all!
Hugs everyone
C
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Faith, I also keep my Ibrance/Letrozole dose consistent. Take at 9 am everyday with food and my coffee. I drink lots of water throughout the day. The only situation where I have to adjust is when I have CT/Bone scans and I stay within a 3+- hour time period.
Sandibeach
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Faith, I, too, am very consistent on my dosage times. I happen to take mine at 7:30 or so in the AM, after I eat breakfast. The nurse from the Specialty Pharmacy told me to take it at the same time every day. I must admit that I'm a pretty regimented person, so it would make me antsy anyway were I not to stick to the recommended schedule. On the other hand, I am one of those fortunate people for whom there have been no side effects so far (midway through round 4 now). Is that in any way related to being on a schedule? Have no idea. The one time I varied was on the morning when I was having scans/CT. I took it at 6 AM that day so that I could eat before taking the pill.
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Faith, I will throw my two cents into the discussion here...I never miss a dose and take mine with dinner every evening about 6:00. I also drink plenty of water throughout the day and before retiring for the night. Breakfast for me is not consistent as I sometimes struggle to fall asleep at night so I sleep in. I retired from work in March so I do have that luxury. My ses are minimal so the time works for me. I do take a prescription prilosec each morning 30 minutes before I eat. That seems to keep the stomach issues at a minimum.
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Zarovka, I can identify with your driver license story.
At my annual Gyn visits, the receptionist completes a pre-addressed postcard to remind me in a year to make an appointment. This time, I pondered if I should do this..thinking I might not be here and my poor husband would get this reminder postcard. I completed it anyway. I plan to be here. It is a mindset.
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Hi ladies. I wanted to know if you think my issues are from ibrance. Jaw pain on left lower side. Went to my dentist who said its ulcers. I cant chew or even touch the teeth in that area. I also started having burning feeling on my heels and its peeling. I dont know whether to call and leave a message for oncoligist. I had to leave work today because i felt so sick. I mean this could be normal problems and not side effects right. I think i have taken like 20 days worth of ibrance. Any suggestions would be appreciated. Thank yo
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My platelets are holding up this cycle. They were 275 this morning 😎 White count was 4.
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Mel~ I have read that there can be some rashes and skin issues. It can also cause moth sores. Especially in the beginning when you first start. Get biotine oral mouthwash immediately and rinse as much as you can tolerate. It's very mild and helps dissipate the sores. I use it every day. And it's thick and soothing and has elements to prevent dry mouth , which is a part of what causes it. Swish a good amount In your mouth for as long as you can and don't rinse after. Keep using it daily to prevent them, once you get a hold on them. Also I eat one yogurt every morning and that helps keepgood cultures in my mouth to get some good bacteria into my mouth. It has helped tremendously, the rash on your foot sounds like it also could be ibrance. I had one blister on my foot and I just soaked my feet in epsom salt and water and made sure there was no possibility of infection. The burning could be a temporary neuropathy reaction and should resolve in a cycle or two, your body usually adjusts to the medication as you are on it longer and as I have found, seems like the side effects can change. If it gets too bad I would ask onc. I take amitriptyline, for nerves and to help with that problem, because I had severe neuropathy from traditional big guns chemo. So ask about that if it continues. I hope you feel better soon ~M~
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Thank you all for your input, seems like the general consensus is to take at the same time each day. FWIW, i did ask the MO's PA that question about a year ago and she said that when they give meds in the hospital, they are allowed a two hour window on either side of medication time, so I have given myself a little leeway ifneeded on occasion but have never taken an 8 hr. window.
Melmcbee, I would definitely call onc.'s office about your symptoms.
Dianarose, hooray for your platelets holding up. And pretty good WBC too.
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Thanks Micmel. I forgot about the biotine. I used it when I did adriamycin and it helped. Thanks for all the tips.
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I had severe blisters and peeling on my hands and feet from AC+T chemo. I used Udder Cream with 10% Urea in it twice a day, and that resolved the problem. Actually, any cream with 10% Urea should do it. I think Eucerin makes one too. I couldn't find it locally and had to order it through Amazon.
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Thanks Laura.
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Mel, I'm in the middle of cycle 2 and have mouth sores and blisters too. MO gave me a RX called magic mouthwash as recommended by these ladies, and it has helped. I also use baking soda in warm water rinse 3-4 times a day. Hope you get some relief.
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Jojo- Ibrance median PFS is about 2 years, so half do better than that, but then again, half do worse.
Bibbhome- You are five years out? How long on Ibrance? What's it take, mentally, to get through this?!
Joyner- You must have the slowest growing cancer even- really it has hung around since 1990?!
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Faith - I would not have remembered to take Ibrance today if I hadn't read your post. Thank you. I usually take it mid-afternoon with food, but I slammed one back now, at 11pm. It varies.
I usually miss about one day per cycle due to forgetfulness and end up finishing the cycle one day late.
>Z<
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Cure-ious- My BC was identified in 1990 (as you noted), Faith's in 1991, and Pat's in 1994. And now, Olivia Newton-John from 1992, I think? My onc noted, as you did, that this has been a very slow-growing cancer. He said that it has taken this long for it to "do enough damage" to show up on the scans.
Jojo- How long did it take on Ibrance before your scans showed no sign of disease? Such wonderful news for you! My new onc says that there simply isn't enough data yet to show who long some of us will be able to stay on Ibrance. He thinks that it may work even better than they think.
All- I have an original implant from my reconstruction (saline) from Jan 1991. It has been fine for all of this time. Now I can feel a tiny bulge (like an inverted dimple). I'm guessing that it's on its last leg. My onc says that no danger is presented and that if it ruptures, it will just drain out and go "flat". Has anyone had this happen? Not nervous about this.....more interested in what you do when that happens.
Thanks, and hugs to and prayers for all, as always-
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JoynerL, I have bilat silicone implants since 2007. Could the "inverted dimples" you feel be fat necrosis? I get these..they always seem to absorb after a while. Since starting Ibrance/Letrozole, I had one appear next to implant and it quickly increased in size within a month and it felt more hard than usual. I blame anything new on I/L! Since it was different and only suspected as fat necrosis, the breast surgeon removed it. It was fat necrosis that had become inflamed. Surgeon said it broke away from blood supply.. whatever that means.
By the way, my silicone implants are due to be removed in 2018. Wonder if that will ever happen since my new mets dx.
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Dianarose:
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Sandi- no one ever mentioned a time frame on my implants. Guess they figured I wouldn't be around long. How long are they good for?
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Cure-ious, great questions. When I was first diagnosed, I had all the usual fears. I thought my life was over. I had radiation to 3 odd the largest tumors and it was really rough as 1was my face and the other many neck. Huge se's! Then we started Faslodax. That worked for me for a little over 3 yrs. I would honestly say after 2yrs was when I realized I was still alive and started planning for things in the future.
My ds and dil moved their timetable up and gave birth to a gorgeous son 4 years ago. Then an 18 mo old son. They are my heart! I can be so ill or having a huge pity party and see them and get an instant grin and start laughing! I also have 2 Dogs and 2 horses that I love. I can't forget my so!
When I first started Ibrance at 100mg, I had a terrible time. I was so tired and weak all the time. My neutrophils tanked every cycle. I was anemic also. I kept thinking my body would adapt, it didn't. After 5 months told mo no more. He asked me to go to lower dose and see what happened. That has worked! I did develop an active metabolic sight in my left hip, but since everything else is quiet we decided to do 10 rounds radiation. According to tumor markers, it worked. Get new scans end of July.
There are lots of se's for Ibrance and they vary monthly. They are all doable. Moth sores, mouthwash. Acid reflux, daily omerprozol, tired, do yoga. These people here will give tons of love and support! Ask any question and I can almost guarantee someone will have an answer! Next thing you know, 5 years will have gone by.
Hugs and prayers!
C
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Bigbhome, I love hearing how you and your oncologist fiddled with the protocol and made it work for you! And I really love hearing what your grandchildren have done for your spirits. I remember being on big chemo and having one of those "can't get out of bed" days. My daughter and granddaughter showed up with a silly book and we all ended up piled in the bed laughing like crazy! Laughter is such a great healer, isn't it?!
melmcbee, I had those ulcers on the first cycle of Ibrance. My oncologist called in Magic Swish but I just couldn't stand to put it in my mouth. I got Stonyfield Greek Yogurt....I like the plain mixed with canned pineapple tidbits....and it completely healed the sores. It also helps with the acid reflux and tummy issues. I wear everyone out talking about it and feel like I should pull a Stonyfield cart around the neighborhood!
Z, I'm so glad you went for the longevity driver's license! When I was first diagnosed in 1994, I thought I would die in 2 months because my mother, the one person I knew with cancer, did. No Internet with hopeful stories. Few books about cancer available. I found the story of Stanford's trial on the value of breast cancer support groups and my takeaway was that the people in support groups lived at least twice as long. I found a group and expected to live 4 months instead of my mother's 2! Here I am 23 and a half YEARS later and I'm determined to make it to at least an even 30 years! Okay, 40!
Here's to years upon years more for all of us!
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