Ibrance (Palbociclib)
Comments
-
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.
0 -
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.
0 -
Ashlyn - Thank you for letting me know that this has happened to you. I am getting another Neupogen shot tomorrow and bloodwork again Monday morning.The timing, as always, is most inconvenient.
Too all the newbies, I am getting ready to start cycle 27and still going strong!
Hugs and prayers,
Claudia
0 -
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
0 -
ThereisHope4us: I am on cycle 14 of Ibrance. Dose reduced to 100 at 3rd cycle due to low platelets. The trend of my monthly Ca15.3 has been stable for last 6 cycles. Not everyone can use tumor markers to monitor dz. MO uses monthly ca15.3, cbc and chem panels, how I feel and quarterly CT and bone scans. I am NEAD for now. Hope this info provides you comfort.
0 -
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.
0 -
Hi gals. I've got good news and bad news. The bad news is, recent PET scan saw continuing progression, confirms what I observe for the infiltration in skin across chest, into the right breast, and more mastitis-type hardness inside right breast, but it also shows continued spread to more lymph nodes, and spread from sacrum into vertebrae etc. This was my first meeting with my new oncologist, who it seems much older and more experienced (also more calm, poised) than my previous. She was also less arrogant, and basically gave me much more confidence. So the good news is she took the immediate initiative to change treatment so I guess that means sadly I will be leaving this charming Ibrance group, now that I feel so close to all you gals, I will obviously need to come here for hellos. -- And we begin a new regime of chemo. Last chemo I had was in 2014. It seems we are going to try something I did not have before during my initial cancer treatment before metastasis - [in 2014 I had Taxotere, FEC, Taxol, Cisplatin combined with radiation] - We are going to try infusions of Halaven ( cycle of on per week for two weeks, then one week off) and I begin taken Xgeva for the bones. Whew. I have never heard of Haleven. I have some reading to do. Also I have a whirlwind of new scans. We have been relying on PET scans for years, here I have a scan scan, which is what ? So I guess I have some reading to do. My lovely husband seemed a bit upset at the meeting (thank goodness he came with me, for my head started really turning after the appointment, felt for a minute there I felt like I would faint). Anyhow there it is. I must say, a part of me feels the discouragement that nothing so far has helped much. Crossing fingers for the chemo. Big hugs to all.
0 -
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
0 -
Anybody else have issues with really low blood pressure? Never had this problem before, have always taken meds for high blood pressure
0 -
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.
0 -
I just came back from an appointment with the oncologist and confirmed to start Ibrance tomorrow.
I know everyone is trying to stay positive and hoping for the best. However, howcome I am getting the sense from the doctor that life expectancy for this disease is roughly 5 years. My daughter is 8, and my doctor expects that I will see be a teenager. Is that it? What’s after Ibrance if it doesn’t work? I have had chemo on 2011 and tamxofin ever since until it failed.
Sorry to bring this up as i am sure it goes against what we need to stay positive. But wondering if you and other oncologists have abetter outlook on this.
0 -
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!
0 -
Amarantha: I'm sorry to hear that you've had progression. How many cycles had you completed? It sounds like you've got a great new oncologist and your spirits are good. Please keep us updated wth how you're doing. Sending you good vibes and love from western Canada. xo
ThereisHopeforUs: I feel you on this girl. It is not what we want to hear. I purposely never asked my MO for a timeframe. I know she doesn't know and no one does. Every body is so different. I do know that there are long term ER+ survivors out there. A handful of them are 7+ years out from this. Some are 2,3 years NEAD on Ibrance. Some have yet to even start IV chemo. We just have to hold on to hope and try to live each day the best we can. I know that's hard though. Big hugs to you lovey. xo
1 -
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.
0 -
there is hope: you don’t have a best before date on your boob or your bum! No one knows how long you will live. There are woman on this site and the Ibrance Facebook group who have been on Ibrance for 50+ cycles. There many other drugs that can be used after Ibrance. Thete are several newer drugs in clinical trials. There are women living long lives with MBC.
Try stay positive. There has never been a better time in human history to have MBC.
Great news about the funding for Ibrance in Canada. Each province will sign on individually. Now is the time to pressure your Minister of Health to find the drug in your province.
Jo
1 -
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!
0 -
GracieM, I have low blood pressure (average 96/58). I just assumed it was either Ibrance or Letrozole. I do make sure I am hydrated and take my time going up steps. Also careful with cardio. Everyone is different. Listen to your body and your MO. It is a whole new world, isn't it?
After seeing the dog photos, I want a dog. Will settle for cat.
0 -
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
0 -
Well my tm’s were up. Over 100 for the first time ever. The other two were up too. Kind of thought they might be from everything I’ve heard from you all. Onc is not concerned..he mirrored what I’ve been told about Ibrance working veery slowly. He’ll do a scan in three months and see what it shows.
0 -
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.
0 -
Hello Ladies,
Quite a while since I wrote a few words, but this didn't prevent me from reading you. I'm still lost in all nicknames, and mix up who's who. But your posts are my little sunshine day by day. Not only for the usufull information, but also for the support and love I feel through the lines.
Amarantha I loved your posts ... and especially appreciated your revue in French ( much more easy for me to read ;-) ). I really hope your new treatment will work and give soon marvellous results.
Nettager concerning the difference Lettrozole/Fulvestran I don't know what it is exactly. Not the same molecule my Onc would say. I had to quit Femara as I didn't respond to it. As far as SE are concerned, I must say it was worse for me with Letrozole (lots of muscles/joints pain) which I don't have with Fulvestran.
Small update on my side : I started cycle 2 of Ibrance/Fulvestran. Not much change so far, only the skin mets seem not to develop as quickly as previously (I would say they stop growing).
Sending you all as much support and love as needed.
0 -
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......
0 -
amarantha I'm sorry to hear your news. I know that now the treatment and technology is advanced and constantly changing, hopefully for the better. I pray that your onc matches you with a treatment that works quickly.
For all of the newbies I started Ibrance with Faslodex injections in June 2017. 13 years prior I had taxol taxotere and arithromycin and then the five year pill arimidex. The Ibrance is definitely not as harsh a regimen as the chmo was but after a few months the fatigue, weight gain, taste bud changes become more apparent. I am taking 125mg and am hopeful for the best results and quite frankly a bit afraid to reduce it at this point. I had one PET scan so far, after 4 months, which showed the cancer lesions in my spine, rib and abdomen gone. There was still a met in my hip bone and the size had shrunk.
I am not as tough as some of the other survivors and sometimes eat chocolate and cheeseburgers with fries for comfort. I feel sorry for myself but try to limit that pity party to about 5 minutes. I exercise with lethargy but try force myself to get it done. I try to be productive daily and also plan short trips outings with my husband and family ongoing. I also help my grand kids with their homework a few times a week and socialize with friends. Best to stay busy and positive.
Best outcomes for all
Tanya
0 -
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
0 -
Welcome to the 75 mg club, Pat. I'm in my 21st cycle, all but the first on 75 mg. The se are NOTHING. A big fat zero. The data show the efficacy as the same, as far as I hear. Yes, I hear what I want to hear. I hope 75 mg works for you for a long time with no se. I get my quota of se from Letrozole. No free rides here.
0 -
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.
0 -
Pat great news. You will be on Ibrance Keytruda regimen. I pray for the best results!!!!
Jaycee I hope that there will be some strong evidence that 75mg is good enough. I'd love to drop some of these SE's from the 125mg with the same results.
Great News for all of our Canadian MBC friends. Ibrance it is. In comparison to the chemo regimen I had 14 years ago it is a big boost in QOL.
Tanya
0 -
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.
0 -
Jaycee, thank you again for your response. Yes, I am trying to decide which is the best product I can use to help stop these UTIs, and appreciate all of the advice I can get. For now, I am increasing my water intake, drinking lots of cranberry juice (although some research says it doesn't help) and keeping mega-clean. I know it is minor compared to what so many of you are going through, but I feel that everything that degrades our QOL is worth addressing. Today I have felt better than I have since Christmas even though it is my week off. Maybe my body is finally healing from all the flu, pneumonia, and UTI crap. I am thankful for these days.
Tanya, I don't look at eating comfort food as being weak. I want to live my days celebrating every joy I can find, and that sometimes means Bar B Queing hamburgers with my family. Don't beat yourself up over it--embrace the fact you can eat and enjoy your cake.
0 -
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:
0
