Ibrance (Palbociclib)

Claudia: I did not get Grastofil shots, but during my last Ibrance cycle my ANC was 1.2 before the start, 2.7 at day 13, 0.94 at day 28 and 2.9 after a 2nd week off. I got the feeling, that it is completely unpredictable how the ANC will evolve.

Wrt tumor markers, I did not yet experience a decrease of my CA15-3 after my 4 Ibrance cycles (start at 38, 149 after 8 weeks, 162 after 16 weeks), even though my primary lump decreased in size after 10 weeks quite significantly and beginning of sclerotic healing rims could be seen in my bones.

Bigbhome, wow cycle 27! That's great! I am about to start my first cycle today or tomorrow's. Just building up the courage to take the drug. I read a few comments and articles posted by others regarding dosage. Are you on 125 mg or has it been reduced over time? wondering what is the optimum for long term use of the drug.

What have others experienced?

Thanks

thanks Sandibeach....that’s incredible! If I can be NEAD in a year, that’s would be fantastic! For now, I can only dream of relaxing on a sandy beach and hope it will happen once things stabilize for me.

Good morning ladies! I am new to Ibrance, 3 weeks into my first cycle. So far not too bad. I was wondering when you started feeling any side effects? So far just fatigue, but I have been exhausted since this all started 4 years ago. I read everyday and feel like I know you already, a lovely group of women! Continuing for peaceful and pain free days for all.

Mimi

GracieM2007: I have been on Ibrance 125mg since April 1, 2016, with only the one week off each cycle. When I was diagnosed on March 17, 2016, my TMs were 255. On May 6, 2016 they were 55. The lowest they have been is 21 on March 23, 2017. They have been slowly creeping up since then and on December 29, 2017 were 49. In October 2017 my MO took me off of Letrozole because the TMs were moving up. I'm now receiving Faslodex injections. I know TMs are not the whole ballgame but it's kind of my way of keeping tabs on how I'm doing without having to remember the results of each scan.

For Canadians... From Rethink Breast Cancer's Facebook today...

"IBRANCE ANNOUNCEMENT📢📣

Yesterday we received the news that Ibrance is one step closer to being publicly funded in Canada. The negotiations at PCPA were completed and we are waiting for provinces to sign the letter of intent to fund the drug!"

Hope this means everyone who has been waiting will get it fast!

Mimi and thereishope, welcome to the I/F thread. I think and hope you find the treatment quite doable. Most of us here have minimal SE's once you've settled in. The first couple of months can be rough as your body adjusts to the new protocol. Labs are whacked out, you can get weird pains, stomach aches, headaches, etc. The best advice I got here and will share with you is to keep moving. Every day, even just a little bit, even if you really, really don't want to. Good luck and let us know how you're doing.

Amarantha, my heart sank reading your post. But knowing you as I feel I do, I will allow myself to be sad for only a little bit. Then I will dust myself off and say "OK, let's get ready for what's next." I say "let's" because we are here with you and for you. Halaven may just be the treatment you need to knock back the b@stard rogue cells. Sending love and hugs from one bay area gal to another.

amarantha, here's a big word for you today....YET. You haven't found the drugs that work for you yet but I believe you will. Please ask your doctor about Verzenio or Kisqual (sp?). Just because your body didn't respond to Ibrance doesn't mean it won't respond to one of those. My oncologist says we just don't know yet which of these new drugs will work on which person. Whatever you do, please don't separate yourself from this group. It is having MBC that unites us, not Ibrance. You're far too charming for us to let you go so we'll see you here tomorrow, sister, okay?

By the way, I've convinced myself that XGeva is doing me more good than anything else!

Oh my friends, it is such a relief to come here and find your kind words, also to share your tribulations. Thank you Jaylea for sharing my moment of heart-sinking - yes I expected it, and was relieved for the oncologists reaction, but it was still a sinking feeling. And yes, dusting oneself off, that is how it is going to be for sure. There is a certain ‘fcuk it all, I am going to eat as much chocolate as I want today, so there” and “I can have anything the hell I want because poor me”, and that’s fun for a few minutes, like right now in front of a very chocolatey bowl of hot chocolate laced with Grand Marnier (but only fake sugar).

PatgMc, Thank you so much for your kind and encouraging words, sister ! yes indeed, the first thing I asked the new oncologist was whether. Abemaciclib had been approved for use in France yet, the answer was no, or almost and they’re working out the price. I rather hope once I’ve cycled through the chemo a few months that eventually we will come back to Abemaciclib or something else like it. I was interested that she went for Halavan (reminds me of a Jewish desert) rather than a taxane, but I had already pretty much been through the ringer with those types of chemo, and they had not been very effective on me either.

I sure hope the Halavan will be liveable, because I have just confirmed that yes, I am going to Toulouse and Limoges and Bordeaux, and writing reviews, even if my husband has to come along and help.

Ashlyn, I had only just finished the third cycle on Ibrance. Unfortunately the metastasis were moving and rather swiftly during that entire time, so I guess she decided itas time for an entirely new angle.

Darling husband was rattled by this, and set about mentally organising to have help housecleaning to relieve some of the burden from me, it is tiring, and it would be quite a lift to have some help on that end, (he’s 81 and not so good at himself, LOL)

For those dear “newbies” worrying about side-effects on Ibrance, since I did only do three cycles I am probably not qualified to speak, but yes, some digestive discomfort, some dry eyes, a bit of tongue problems, etc; definitely some major fatigue particularly in the beginning, but nothing, let me repeat, NOTHING like when I was on Afinitor. Afinitor had me aching in every tendon and every bone and every joint, I was on pain killers all the time. Joyfully, thrillingly, on Ibrance it was possible to really live. May it continue to work for you as long as possible

Does anyone know, which are the advantages/disadvantages of Letrozole vs. Fulvestrant? Did anyone perform a switch from Letrozole to Fulvestrant while taking Ibrance? Why? Was it beneficial wrt avoiding progression? I am still somewhat uneasy about the Letrozole because I had the impression of progression in my breast lump and my skin mets during my last 2 weeks off Ibrance. I have now restarted Ibrance and after 1 week already got the feeling the the lump is getting softer again. That is why I would not want to get off the Ibrance, but maybe discuss change to Fulvestrant with my MO at my next appointment.

I'm on my 13 cycle and the first pill for me was sssssso scary ,but other than thinning hair and a few aches all is good......

Hello, friends, I want to thank those of you who have written about your success on 75mg Ibrance. Today I met with my oncologist knowing we would discuss which treatment to begin after the 6 week Ibrance break. My husband and I have been praying about whether I would start Verzenio (sp?) or stick with Ibrance. I thought my oncologist was leaning toward the new drug and I was thinking I wanted to give 75mg Ibrance a try. I'm thankful to say that he started things off by saying he would like for me to go with Ibrance since it had worked so well over these 15 cycles. I've told him about those of you who have been on 75mg for a long stretch and his own inclination is to try that and expect it to work. I have high hopes for less fatigue and heartburn as I join you 75ers!!

Another bit of good news> I asked him again about possibly taking Keytruda one day and he said it has been approved for MBC and he can combine it with whatever drug he decides . Yes, with Ibrance! He's having my last biopsy tested and said it would take about a week to get results on whether I would qualify. It will be nice to know if that is in my pocket for the future. I hope those of you whose MBC is progressing will ask your doctors about this. My onc says this is one of the most exciting new things he's seen.

And even more good news> My port worked perfectly today. Hydration is a beautiful thing!!

I'm so thankful to hear that Ibrance will be available to you Canadian friends. So many lives will be saved.

About tumor Marker tests> I have chosen not to do those as I've known too many people who lived on a roller coaster of fear from them. Only a small number of my friends over the years have found them to be a reliable predictor of cancer growth.

Have a happy rest of the week. We're still experiencing the Ice Age in Memphis as our 3 inches of snow/ice from Monday night won't thaw until tomorrow. Kids have been out of school since last Thursday and it's looking like another day off tomorrow. Remember how exciting that always was?!

Love from PatG

Speaking of Letrozole se, I sent this to joyner first because I thought she was the one who said she had another UTI. Joyner said no, it was not me. Then I scrolled through a bunch of posts and found it was IntoLight so I sent it to her. I decided I should share it with everyone here FYI.

I went to my urologist yesterday. When he walked into the exam room, he handed me literature for something called ellura. (Yes, lower case e to be cool, I guess.) He (or someone) had told me about this product before, maybe ten years ago. It is a very concentrated cranberry extract with lots of those PAC things that are supposed to make bacteria not be able to stick to your urinary tract/bladder. The reviews on Amazon make it sound wonderful. As I discovered before, I can't take it because of my gastritis. Makes it go crazy. But if you don't have that issue, maybe it would help you to prevent getting UTIs. I'm using as much moisturizer down there as I can and heard about something called PreMeno Duo on the UTI thread here. Both of these products were developed in Europe (France, Germany I think) and are VERY expensive. All the reviews say worth the money. I may buy some of the PreMeno Duo soon but Luvena is working well (also expensive though not quite as much) and I'm also using something called Key-e that has coconut oil, palm oil and vitamin E. It is much cheaper so use it on alternate nights. I'd love to get rid of this issue and assume you would, too. Just some ideas if you are looking for any.

I wanted to give you all an update----I just came from the MO.  My ANC is still low-600. Was 400 6 days ago.  Going in the right direction, but not fast enough for me. Still off Ibrance.  Been off for 12 days now-and did not complete the first cycle.  Wow this med ( 125mg ) has really kicked my bone marrow's butt !!  Also I have been having some pain in my right side/rib area and MO wants a repeat CT. Last one not quite 2 months ago, but being off Ibrance and with pain he wants to check things out.  I am still on Lupron ( to suppress my ovaries ) and letrozole. Kind of worried about things.  I want to get back on Ibrance ( 75mg this time ) and hope things are going to be okay on CT.  

As I enjoy one last day of being off our wonderful but fatigue-inducing drug while anticipating the "day after XGeva", I'm sending this little gift your way: