Ibrance (Palbociclib)
Comments
-
Z , Animal crackers and Micmel - I also asked to be reduced to Ibrance 100mg about 6 mos ago to lessen SE's as I am still working full time. So far it's been a little easier, but fatigue is the baddie. I take my Ibrance with dinner which is my largest meal. I still have drippy eyes every morning and hair loss that is covered up by my "hair halo". Nevertheless I drive an hour to work and use Uber if I am tired. I start round #16 on Monday and have planned two cruises; June in St Petersburg (Russian Easter eggs and Palaces!) and July in Paris/Normandy. I used trip insurance for both journeys and upgraded to biz class with my miles. I have lost about 12 pounds since starting Ibrance and just bought new pants this week. I walk everyday unless it's raining, which has been a lot here in So Cal. lol I eat healthy; fresh veggies, avocado, pasta, a little meat and a glass of wine as needed. We need our QOL too! For those of you that are pet lovers, I am very sad that my Best Cat Ever, Mr. Slim who is 17, must be put to sleep this week. His kidneys are failing and he is barely eating. I hope someone takes care of me the same loving way if needed....
Faith/Teri, Steph and Cheryl - thank you for being my BC friends. I am in tears today.
(()) Claire
0 -
I was on the 125mg of Ibrance last year from February - November and dizziness was my largest side effect caused by the reduced red blood cells. This was a huge problem for me because sometimes the anemia was so bad I would feel like I was going to completely pass out. I restarted Ibrance 3 weeks ago at the 100mg dose. My MO suggested it since I was so anemic on the 125mg dose. She told me studies show the 100mg dose works just as well as the 125mg dose. So far I have had no side effects from the Ibrance! Although I have only been on it for 3 weeks and will start my week off on Monday. I get my blood work on Tuesday, so I can see how hard my blood cells are it. I have terrible upper back muscular pain that is either from the Letrozole or from my Latissimus flap procedure.......worst thing I have ever done!! I will give this dose time to work and if I don't see improvement, I will up the dose.
Robin
0 -
Z, very interesting dosing schedule. I had thought you would finish 125mg before changing to 100mg. It will be interesting to see if you notice a difference in how you feel very soon.
Claire, I'm so sorry about Mr. Slim. While we have no animals(allergies), I can certainly relate to losing something or someone you love. I'm sure someone will take care of you in the same loving way as you are a loving person and what goes round comes around.
Robin and anyone else having dizziness, it may not all be your blood counts. I have made an effor to up my sodium intake as my sodium levels were low from a lot of water. Since I've done that, a lot of my dizziness is much better. Just a thought.
Faith (in the future)
0 -
Claire, I am so sorry about Mr. Slim. My dog Freeway passed away in August from kidney failure. He was not eating either and I took him to vet to find out he was in kidney failure. My vet told me to go home and love on him for a few days to accept the fact that I had to put him down. I got him home that day and put him in my bed (where he always slept) and just pet on him for hours crying my eyes out. He passed away a few hours later. I am still devastated and miss him and my other dog Baby who passed away last year from lung cancer. They are like out children and it hurts when they leave us. I will pray for you and Mr. Slim!
Faith, thanks for the suggestion. I have not been dizzy since last November when I stopped the Ibrance. I am hoping the lower dose will not cause this.
Z, I have a feeling your side effects will subside....fingers crossed!
Robin
0 -
Claire, I am so very sorry to hear about poor Mr Slim. Is your nephew still with you so that you can cuddle and live on him while you go through your grieving period of having to let Mr Slim go? my thoughts and prayers are with you in this very sad time. Please try to think about your upcoming cruise to bring some much needed happy thoughts. If you need anything don't hesitate to ask. All my best, Cgery
0 -
((claire)) I hope you have a good few days with Mr slim. 17 years is a good run for a kitty. Hope the path to kitty heaven is as easy as possible for both of you.
Z
0 -
hello. I got my first two loading shots of falsodex last week and still get me ibrance delivered Tues. My Dr has not takes about Gemara in combo with ibrance, I will have to ask about that. What can I expect for se after taking ibrance? Seems a lot of ppl take this at night.
0 -
LvinAZ- In general, you take either faslodex or femara. You take Ibrance with any hormone suppression strategy and there are several. You only need to do one.
>Z<
0 -
Z, my MO started me on 100mg. Blood Levels were a problem and she decreased me to 75 mg on 2nd round. Through my own research (long story) I realized that I was on another medication for depression that interacted and intensified the the effects of the ibrance. I remained on the 75 mg while I slowly tapered from the antidepressant. I have been off the antidepressant for awhile now but MO has kept 75 mg as I have basically achieved NED on this dosage. She stated she has other patients also doing well on 75mg but I do not know of any specific studies. My MO is not the easiest to communicate with but she had specialized in breast cancer for the past 30 years and came highly recommended by medical docs and patients. However, I would be very interested in any studies about decreasing to 75mg and the otcomes.
I also just wanted to state that I have noticed a significant change in cognitive functioning. I can no longer multitask. I become very easily overwhelmed if there are too many demands on me.My memory is also horrible and I am worried about dementia on top of all of this. I too, used to handle a demanding and high stress job. One significant reason I had to leave was due to my cognitive decline.
0 -
Claire~ I am sorry about Mr. Slim. I am a dog person, but can completely understand how hey quickly become family and another child so to speak!
Z~. Here is hoping your side effects will be a thing of the past.
Have a nice day. Supposed to get a nor'easter, this week, which means a foot of snow or more possibly. Yuck! Did I say yuck? I want to get walking!! Oh well I guess my walking today will be Costco and spending money in bulk. Lol.
~M~
0 -
what was the medication you were taking for depression?
0 -
Lvin I'm wishing you and all the others starting IBrance the best! It's a wonderful drug and I've been so happy to see many people doing well for a long time. I'm thinking you may mean XGeva as another drug to add. This one pulls calcium from your body into the bones and helps eliminate bone incidents (cracking, breaking) in people with bone mets. The only side effect I have from it is a couple of days of enhanced fatigue and brain fuzz. Good luck to you!
0 -
M - Cosco is always good for a hike. Make sure you forget something you need that is on the other side of the store!
>Z<
0 -
When I startedthis round about a week and a half ago, I decided to take my meds in the morning. I've noticed a significant improvement in my ability to sleep through the night and a reduction in the gassy, bloated feeling. Getting up in the morning is a little easier too in terms of my foggy brain. I had been taking it after dinner previously.
I join the early April scanxiety crowd. It will be my second set since starting Ibrance and Letrozole. My TMs have started falling so I'm hoping for good scans too.
Big hugs to all
0 -
Jen - You scans will be awesome. My scan meltdown is scheduled for late april but like you my TM's are dropping so I actually feeling pretty good, scanxiety wise.
>Z<
0 -
Alicia, the antidepressant was serzone.
0 -
Hi. I take Ibrance (125) and Letrozole in the morning, always with food. I make this great concoction by mixing Greek plain yogurt with walnuts, cherry juice concentrate and bananas. I do not get sick and I sleep well. So far, none of my joints ache and I am super "regular" in the bathroom department (that's a first).
I do realize that I now operate about 30% of what I used to be (was a runner and could multi-task without tiring). But walking is always good- up to 3.5 miles.
I drink homemade Kefir and also lemon water mixed with garlic and ginger. My husband found these recipes. I also try to drink 1/2 gallon of water everyday. In the evenings, I take D3, Citracal, B complex and Celexa.
Since starting on Ibrance/Letrozole, my first scans will be on March 22. I decided if they show improvement (or even no improvement), I am having a big glass of red wine and chocolate.
I am making the most of the new me.
0 -
Welcome Sandi beach! Love, love, love your plan for a nice glass of red wine and chocolate on the day of your results whether there is improvement or not. That is the way to do it! Celebrate you!
0 -
Z~ I believe alot of people went to Costco today lol so cold and windy. I walked my little heart out, was good to get out, but I am ready for spring. I have been trying to walk around my downstairs in my house to keep moving. By the time I get around the fifth lap I have both dogs following behind me wondering wha I am doing. But I figure. It's a work out for them also! Hope you're feeling well today. Started my fifth cycle last night. Gonna take Valium and go to bed. I need to relax tonight. Once in a while doesn't hurt. It helps my mind. Now I have the count down to begin the scanxiety.
In may. First scan since sixth months. Didn't miss them one bit. CT scan this time. Not PET. I get to drink the fun tasting hand lotion for the testing! Sleep well ladies. ~M~
0 -
SandiBeach - You have a great strategy. I have been studying probiotics and gut health and the more I learn, the more attention I pay to this area of nutrition. Keep going and let us know how you are doing.
>Z<
0 -
Just read an article from Cure Magazine that ribociclib has been approved by the FDA. It has a weird name, Kisqali. That's the drug in the Monaleese trial, another cdk 4/6 inhibitor. I wonder if it is an easier option for those of us on Ibrance and having lots of issues with SE's or will we not be eligible for it if we've been on Ibrance?
Faith (in the future)
0 -
My doctor already offered to switch me to ribociclib, since i have been complaining (okay bitchin an moanin) about side effects. There should be no problem switching since the drugs are interchangeable but I'll need to see the data.
This is a table that reflects what we knew about side effects as of July 2016. It comes from this analysis of the CDK 4/6 inhibitors coming on the market.
What I am seeing is that ribociclib is less of a hit to the immune system (neutropenia and thrombocytopenia (slow healing, bruising)) but more of a hit to the gastric system. You get to choose between throwing up and fatigue! Cancer is such a blast.
The side effect profile of ribociclib is closer to abemaciclib which suggest to me that it has a little more activity in the CDK4 inhibition vs the CDK6 inhibition. Abemaciclib is almost entirely CDK 4 inhibiition. My understanding is that the CDK4 inhibition is what really slows down the cancer. If so, ribociclib may be more effective, but the data that they have reported so far is unclear with respect to efficacy.
If anyone has seen more recent data on side effects or any effort to compare the efficacy of ibrance vs ribociclib, please post.
>Z<
0 -
okay so here is the press release.
here is the efficacy statement from the article. not sure how this compares to ibrance which doubled the average progression free survival.
The 18-month PFS was 63 percent with Kisqali versus 42.2 percent for the placebo group. Among patients with measurable disease, the overall response rate was 52.7 percent with letrozole plus Kisqali and 37.1 percent with letrozole and placebo.
not obviously better. i am skeptical this drug is different. Interested in what people are hearing.
>Z<
0 -
Z, I was pretty sure you would have these stats. You're so good at this research. This drug sounds ok but pick your "poison," throw up or be tired. My stomach is already sensitive to lots of things. Other things looked ok except that QT c prolongation problem. I already have abnormal heart rate function thanks to Chemo so that might be a problem for me. Cancer, the gift that keeps on giving! I guess we stay tuned for more info in the coming months.
Faith (in the future)
0 -
Faith -
Yup. You and are doing pretty awesome so we can afford to watch and wait.
>Z<
0 -
I may be wrong but I thought I heard that the median for PFS was a few months longer with this drug over ibrance.
0 -
The stats for ibrance are something like 24 month with ibrance vs 12ish for letrozol alone. I can't map that to the stats I find for ribociclib. Would love to have a reference.
Excuse me, Kisqali. It sounds like a poltergeist from the Amazon. I think the Kisqali is lowering my neutrophils, better find the witch doctor. The Kisqali makes me vomit because I walked across his grave. I am going to have a great time with this drug, regardless of its efficacy.
>Z<
0 -
My mistake, I thought PFS for ibrance was 21/22 months, not 24. www.onclive.com stated new medication was 25.3 for PFS.
0 -
Kisqali. KISS-kuh-LEE. Kiss-KAH-lee. Kiss-KAY-lee (groan, surely not?) I mean-- what the actual heck. Where do these people get their marketing degrees nowadays?
I hate throwing up like the Dickens, but after seven years in this endless parade of fatigue gremlins, I might actually put up with a little barfing just to feel the thrill of ordinary energy.
Heck, if the trade-off gave me back enough zip and zing to travel and hike and throw a dinner party once again, I might be brave enough to build a whole stinkin' disco atop big bad Kisqali's Amazonion grave. (Barf bags and Zofran would be complementary, of course.)
0 -
I just posted my first reply an hour ago on a different thread on the site (Stage IV). Since this subject is specific to Ibrance, and since I started Ibrance and Faslodex very recently, I thought that I'd post here as well. I don't know anything about this format and hope that I am not jumping in inappropriately. You all seem so knowledgeable, and I so appreciate the communal wisdom. Scary times.
Here's my recent post...
Good morning to all. This is my first post (I think, anyway...I don't think that I have written anything before!). I am in Virginia. I was diagnosed with breast cancer in 1991, with mastectomy and chemo and reconstruction. One positive lymph node. Tamoxifen for 15 years or so and then Evista for the remaining time. To my utter astonishment, I "accidentally" discovered mets in the bone (only there so far) in late February of this year (a CT scan of the chest for something else, followed by a bone biopsy, which confirmed the diagnosis). I was immediately put on a shot of Faslodex (loading dose...another shot in 2 weeks, and the third coming up on March 24th). I started Ibrance on March 2nd. I am a total newbie and assumed that breast cancer was behind me. I am 71 (birthday on March 3rd). I'm generally a very healthy, upbeat person and am trying to learn more as I know so little at this point. So far, I have had no side effects at all. I am trying to learn from this site and from all of you. I don't really understand how the site works yet. Can you set it up so that replies appear automatically in your email? How do I know if there are replies to my post?
Thanks for whatever guidance you all might provide. I look forward to getting to know you and to making this journey together.
Hugs to all....
0
