Ibrance (Palbociclib)
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Dear all,
I tried to find answers in this thread to my (small) worries of the day.
I'm somewhat lost. I'm due to start Ibrance today (just got it from the oncologist) and got my Fulvestrant shots this morning. However, I feel somewhat afraid of starting this on friday evening. Especially when reading the possible side effects and hearing the doctor telling me to rush to emergency if I get any fever.
I already got Fulvestrant since half november, but I was waiting for the approval of Ibrance. I'm not sure a delay of 2 more days would make a difference.
As some of you are on the same combo, I wanted to know whether I'm right to be afraid of possible reactions or whether I should start straight away.
Thank you :-)
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I'm betting that many of you read this back in September on the Inspire website, but I'm just seeing it and just learning about this individual, who seems a knowledgeable source. Author is Constantine Kaniklidis, Director, Medical Research, No Surrender Breast Cancer Foundation (NSBCF).
Any thoughts??
Comments on Inspire about Verzenio
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we all experience anxiety at starting Ibrance, but most women find the side effects to be mild, relative to other treatments. Yes there is the risk of infection due to low neutrophils, but few women here experience major infections and fewer still have required hospitalization. Many have achieved very good outcomes with Ibrance. I have been on Ibrance for six months, and require two dose reductions to 75 msg. My MO thinks that my bone marrow doesn’t produce a lot of neutrophils because I have had extensive radiation to bone (skull, spine, pelvis, and left femur). My three month CT scan showed a significant decrease in the liver Mets and no activity in bone. I feel good. I wash my hands often, use iso-gel when I can’t wash my hands. I live a full life, I attend group events, go to the gym 2x/wk, paddle with a breast cancer dragon boat team, walk my dogs, etc. I feel better than I did when diagnosed with Stage 4, 2 1/2 years ago. I lost strength and endurance during the radiation but have gained it all back. At the gym I cannot do everything that I could do whenever I was first diagnosed.
It is important to know what to do if you run a fever because febrile neutropenia can progress quickly and be very serious, but the experience of this group suggests that serious infections are rare.
Jo
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Yaelle, I agree with Jo (Hobbes12). I am on my 11th month of Ibrance/Faslodex and have experienced almost no side effects, with the exception of being a bit more tired than I used to be. But, I'm also getting older (71)! I'm generally an energetic person. Good luck with your treatment. Try not to be fearful...we're lucky to have access to this new drug combination, and it appears that more are in the wings.
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Yaelle, In my opinion, after 27 cycles, you will be fine taking the first dose. Ibrance builds slowly in your system over the first few days. My doctor said to watch for fevers as well, but I believe that was in connection with other illnesses or infections we pick up, not the Ibrance itself. (I understand that seeing the packaging and knowing why we must take it is an emotional jolt.)
Sending you wishes for a long successful time on this treatment. I have found it to be very doable and I feel good. All the best!
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Yaelle...I started the same combo on 12/5. I was also really hesitant. But, so far, so good. I had a lot of funky muscle spasms before I started that seem to have gone away. I don't know that that's a direct benefit of the combo, but something worked. I haven't had side effects, maybe it's too early, but something tells me I'll tolerate it well. I agree with JoynerL...look at the Ibrance as a blessing that didn't exist a couple of years ago and has helped many.
You got this
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Constantine Kaniklidis is awesome. Very thorough. It's exciting to hear he is enthusiastic about abemaciclib.
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Yaelle, two days won't make any difference either way. If you start today, there will not be enough time for an infection to get started and go crazy. If you start in two days, that's not enough time to make a difference in the tx working. If waiting is better for your peace of mind, I would go that way. Peace of mind is so important to our well-being. Take a breath. This treatment has been very easy for me and a lot of us here. I've said this before and will say it again: this is NOT like the chemo you had before. It may be called chemo but I have trouble thinking of it as that.
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Txgatarat,
What area are they looking to get with the rads? Are they going for your lung area?
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Joyner-Thank you for posting the link- I haven't been looking at aspire lately. I found it very encouraging-esp his comments about ILC in light of the palbo studies showing that it was less robust for ILC, I had suspected that the numbers in the palbo study were too small to actually know- and that is what Constantine seemed to say also.
Very happy to know that Abemaciclib is there should any of us need it-and that more "2nd generation" CDK inhibitors are in the pipeline.
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Thank you all for all your replies and encouragements. I feel much better, reading all your messages.
Hobbes12, JoynerL, Iwrite ... reading your words and knowing you've been on that drug for so long gives me
azs40, you're right, I feel blessed Ibrance exists and is now available here too.
Jaycee49 thank you. Indeed, the term "chemo" inevitably reminds me of the chemo's (dose dense) I got previously.
I hope Ibrance will help all of us for a very very long time :-)
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I hate to sound sappy (and also to be taking up too much "airtime")..... and maybe it's Christmas....... but we're also all lucky to have each other. This is an enormous support system, and it is one for which I am so very grateful. Thanks to all of you! Off to a Christmas party now.....:)
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Hi ladies,
Been catching up lately it's been quite hectic since I had a surgery last week to remove my ovaries and tubes and I got a port put in yay. Been resting a lot been busy with fiancé's birthday, my niece's birthday, two wedding anniversaries, and gearing up for xmas.
Not much to report here still tired from the ibrance but I think it might be coming off pain meds too. I go next wed to find out if I start round three. I did do the horrible burp of smoke today and man that was terrible. Other than that I am doing well.They did send path over on my ovaries and they also found some scar tissue on an instestine which came back negative. So yay.
Nice to meet all the new ladies and these ladies are fabulous I have been in here for a month maybe. They are all great! Okay off for now!
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yaelle. I see you've gotten lots of support here already. I'm on my eleventh month but i still remember how scared I was to take that first pill. I decided it couldnt be as bad as all the harsh IV chemo I've had off and on for 25 years, so I took it. In most ways it hasnt been as bad, but best of all, it's working!!! My lung and chest mets showed a third to half as much uptake in August PET. My liver mets were treated with y90, too, and showed no uptake. My next scan is Jan 9, and hopefully will be as good or better.
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Hello all. Initially diagnosed in 2005, at Stage IIIC. Mastectomy, chemotherapy, radiation, reconstruction. Diagnosed with Metastatic Breast Cancer on November 13, 2015. Took Ibrance with Letrozole; switched to Ibrance and Faslodex several months ago. I'm just looking for friends and interesting chats.
Not sure how to enter diagnoses, treatments, and so forth. I'm brand new to blogging -- my daughter suggested it might help me deal with fear and loneliness. If I'm doing something wrong, please tell me!
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SGB...welcome to this group of supportive ladies. I too am new to metasticized but recently on treatment and experiences here are so helpful. We are here with anything we can do to ease our journeys for each other
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Thank you. I'm new to blogging -- hoping to read other people's experiences and suggestions and learning from those.
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Hello all! Welcome to the newbies. We are happy to listen and share here. I got my Pet scan results this week, and I am still stable! Starting cycle 27 next week! YAY!! Re scan in 4 months. I was so happy! The hip met that showed up in the MRI, is too small to show up on the Pet! Mo says stay the course. He has started 3 patients on ab...whatever, and will let me know what he thinks of the se's. He is very concerned because the drug company gave 72 free doses of immodium. I told him that I did not see that as a problem since Ibrance causes concrete rocks, after being so stopped up, I get desperate for relief. So diarrhea does not sound so bad.
Hugs and prayers,
Claudia
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I hear you about the concrete rocks. I was put on Relistor. It works, but I am not good with needles, so injecting myself is always something of an ordeal. My physician thinks that one of the reasons for my severe weight loss is because I simply stopped eating so that I wouldn't be so constipated all the time. The jury's still out on that one.
I was on Ibrance and Letrozole, but am now on Ibrance and Faslodex. Are you experiencing side effects besides that which you mentioned?
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I also want to welcome the newbies. You have found a safe place to chat.
Bigbhome, so glad to hear you are stable. Yay! I am on cycle 19 and you give me hope!!! And for the record, I have diarrhea on Ibrance, so I guess it works differently for different people. Only a couple times a month, but that is my se. I drink a lot of water and make sure to take magnesium which both help prevent constipation.
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Into, I have diarrhea on my off week. I swear it is my bowels cleaning themselves out from being so full! S-B-G, I have fatigue, like everyone else, and low neutrophils. That's pretty much it for me. Oh, sore joints from letrozole and hot flashes!
Claudia
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Singlemom, yeah it’s the lung lymph nodes that wrap all around. Have several places there. Guess they think since the systematic treatment is working, I can take the time to zap these once and for all.
Joyner, not sappy at all. I feel the same way and am blessed to have an outlet for good firsthand info. Hope I can help others with my experience and support
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Hello, brave and beautiful friends! I've been in the land of the big, bad flu for weeks where I thought I would have to get better to die! I pray none of you get it (yes, I had the flu shot) as it was the sickest I've ever been in my life. My dear husband tried to convince me to let an ambulance come for me but I couldn't imagine moving enough to do that. I won't go into all the gory details because you've got your own stuff to deal with but, man, that cough! If it should happen to you, I highly recommend Benzonatrate (Tessalon Perles...sp?) to relieve the cough. Once that prescription was started I had my first real relief. I did take antibiotics over 5 days and that helped turn things around. The best thing was to finally go in and get IV fluids.
I'm a big believer in Silver Linings and there was one with this. At my lowest point when I was so sick and deep in prayer, I asked God to just go ahead and take me home to him. I asked that my husband be comforted when he found me and that my family find joy again. It was an incredibly peaceful moment and I am now finding great comfort that when and if that day comes with this cancer, I and all my people will be at peace.
I've been trying to catch up so forgive me if I don't call all your names. I'm thrilled to hear of the great scan results some of you got in my absence. Ibrance keeps on rockin'! I can't remember if I reported my last results here as I got them right before the Black Plague hit! Anyway, all good after 15 cycles! (I was too sick to chat about the specifics of my PET/CT with my oncologist so I'm looking forward to learning whether he considers me NEAD. He was sure tickled though!) We agreed that we'll meet and talk about future treatments in mid-January. I'm thinking I'll shift to 75mg Ibrance but he's talking about possibly using one of the new similar drugs. We will also discuss the PARP Inhibitor since I'm BRCA1 Positive. It's lovely that there are choices, isn't it?
Welcome to all of you who are new to our little healing circle! You will find such love and prayerful support here. To our friend who had the disappointment about having a baby, I must tell you of my friend, LS, who once was where you are. She thought her MBC bone mets meant the end of her dreams for a child and was devastated. To make a long story short, she adopted a newborn girl who is now a beautiful Sophomore in high school. It has been a joyous life and my friend has not been in treatment for 16-18 years (I forget which.) God has all of this in His hands and you have every reason to be hopeful.
Love and Merry Christmas, my friends.
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I too was very excited to read all of the positive comments by Constantine about abemacilcib. It was approved 2 days after I started xeloda so I'm hoping that will be my next treatment. I was excited to see that it works as mono therapy for heavily treated patients!
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Txgatarat- that is interesting as I had an enlarged right hilar node in lung that was positive for BC but they did not want to radiate it. I thought it was due to the location. Fortunately the Letrazole and Ibrance got this down to normal. I hope Ibrance does the same for you.
I do find it concerning that there can be such a difference in recommendations between different MOs. Just confirms the need for 2nd or 3rd opinions at times.
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I guess all are situations and scans and dx are different enough to look at a variety of treatments that we are so fortunate to have available. I do agree second opinions are so stress relieving so pursued my MDA consult here in Houston when my oncologist set up my plan. Love him and he said he was open to any ideas. Turns out treatments were identical...Ibrance, Faslodex, Xgeva, spinal rads...so happy for confirmation. We all need to feel secure in moving forward. Feeling so much better.
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Schoolmom, how did you determine to whom you should go for a second opinion? I love my onc, but if there is progression, I'd like to meet with an NIH breast cancer specialist (mine is head of a cancer institute but is also a generalist). I'm not at all sure how best to identify that person in advance. Z counsels that you should have the person identified BEFORE you need to make the appointment, as mental frenzy can set in with progression (I'm paraphrasing Z...sorry Z!!).
Any thoughts or experiences in identifying that person from others? I'm in central VA but would surely travel to see the right person.
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Hi everyone. I just checked in to see how the Ibrance sisters are doing. Pat, so sorry you had the flu. This one sounds awful. I had a short stomach bug aggravated by low wbc. It does make think. Glad you are feeling better.
I just wanted to say I’ve started the Herceptin after stopping Ibrance. It went well.
Joyner , I think second opinions are vital. Are you close to Johns Hopkins. Just a thought. If it wasn’t for the 2nd opinion I got in 2005 I wonder if I’d be here today. Told me to skip the reconstruction and go straight to treatment. So many complications including breaking the chest wall. He was right
Also Joyner. You are far from sappy. You are the first person who pm’d me when I started posting. I am so grateful for your welcoming concern. Thank you for that . Thank you all. The last 6 months have been doable because of this place. Blessings to everyone. Maire.
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Yuck I got the flu!!! Congested and clear running nose as of now! I think I got it from Sue in my office she is retiring after 44 years on 12/22/17. She is so devoted and wouldn’t take a day off when she went to see her PCP. Now half the office is sick and I will star my 2d cycle of I &F on Monday, if my fever remains in 99
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Looking for advice/reassurance. In July I was disgnosed with mets to my left sacrum and coccyx. I had a stress fracture on the left sacrum caused by a lesion, which turned out to be a blessing because it led to my diagnosis. I had my ovaries out in August and started letrezole and Ibrance in September - my only side effects have been mouth sores. For about a month now I've noticed a "sensation" on my right side. It doesn't hurt at all, and comes and goes. It doesn't feel anything like the last time. i don't need anything for pain like last time and it's super inconsistent. I'm going to Dana Farber for my monthly check up so I'll mention it to my MO but my questions are: has anyone felt this before and it was not progression? I was so hopeful Ibrance would work! Also, if it's not working, what would be next? Does Ibrance take a while to start working?Ive been so anxious about it the past week
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