Ibrance (Palbociclib)
Comments
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Lindalou, thanks so much for your reply. That helps. I'm imagining the worst, of course.
Sadie, I think that Micmel gives great advice. I tend to err on the side of caution. Don't wait too long to call your onc to be sure that you're okay.
And Sadie, do you have a collie? There's a gorgeous one near me, named Sadie! She's what I think may be called a blue merle(sp??). She's so prissy and feminine: makes me think of a movie star whenever I see her prancing along.
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Sadie- will the swollen ankles go away eventually or is this something you just have to live with? Mine are really swollen today and ache
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I will be starting Ibrance/faslodex for the first time next week.
I was diagnosed with STAGE IV LBC de novo with mets to bone and lymph nodes above and below the diaphragm at the age of 39 in September 2012. I recently found out I had recurrence in the lining of my stomach in January 2017 (at the age of 43). I just underwent 4 cycles of dose dense weekly carbo/taxol. However, TM continues to rise and that is why MO is changing the treatment plan.
I am hoping that the fatigue can't be much worse than what I am already feeling after 4 months of chemo. I just pray that this combo works for me as well as it has worked for so many of you! You are all an inspiration and seem so supportive to one another. It is nice to find a forum where others truly understand what you are going through.
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Dianarose,
I visited my onc today and she was not overly concerned with my swollen ankles. She said if they are uneven, where one is much larger than the other, and/or it affects the calves, or if they are hot and/or red, then that could be a sign of blood clot and is an emergency. Otherwise, drink plenty of water and elevate them as often as possible. She said it is a normal se of Ibrance.0 -
Dear DesireMiracles, I can make you a promise today. You will feel much better on Ibrance than you ever did on Taxol/Carbo! I had six of those babies and it was tough! The side effects of the T/C will start to diminish after a month and each day you'll get a bit better.
I'll make you another promise. I'll start praying for your miracle right now and will not miss a day. From my metastatic bones and lymph node to yours...let's do this!!
And I want you to keep my friend in your mind. She was diagnosed with mets to the stomach and nodes about a year ago and started Ibrance. Each scan showed the cancer diminishing.....last time it was down 63%. Her oncologist tells her he expects her to get in remission. I have another friend with bone mets who has been on Faslodex alone for 7 years. She has had no evidence of disease for years. Her hair has thinned but she still works full time. If it can happen to these women, it can happen to you!!
Keep coming here and connecting with these strong women. Some days you won't feel so strong and they can hold you up. Other days you can do the same for them. It's God's plan.
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Joyner, I understand your concern as I think our brains have become somewhat trained lately to expect bad news. It sounds like your scan results are what was classified as Progression Free Survival during the Ibrance trials. All those people with PFS added up to be the biggest breakthrough in Er+ breast cancer treatment ever. You are part of that breakthrough now!
It's lovely when scans show cancer shrinking and I'm hoping that happens for all of us. But I do know this: cancer that isn't growing can't kill us, right? And even cancer that grows slowly won't get us for a long time. During that time, even bigger breakthroughs will surely happen as research is moving much faster these days.
My prayer is that your oncologist reassures you that the Ibrance is working and that your spirits are lifted once again. I'm sending a hug your way!
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Micmel, Thank you so much for your kind and detailed response. My family is going through a terrible time right now as my sister's husband also has a very rare stage iv cancer. I am torn between living my life by taking my dream job or staying here to help everyone. I don't think there's ever an easy answer with any of this. My mother isn't very good at talking about feelings, she's very stoic, so I think I will have to figure these things out on my own. I'm grateful for Ibrance and all of the incredibly brave women on this forum. Thank you all.
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Thanks Micmel and Joyner.
I feel like a bit of a nitwit going back given that I only saw my oncologist last week but will likely contact the nurse line just to be sure.
My swelling is not too bad but it has been present ever since I went on Arimidex.
Yes, I have a collie.. that would be Sadie. She's a sable but it must be something about the breed. She's a total princess! I always joke that she could never go feral. First time she had a leaf caught in her feathering she would lose her mind. And yet... she hates being groomed. Go figure.
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bowoky~cancer has a funny way of changing things And people just always be honest and follow your heart. You're obviously a good daughter and I will continue to pray you find the answers you need. Hugs and hang in there. Remember people can live many many years with this stage. ~M ~
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into light- both are swollen and feel heavy and uncomfortable. This was my week off and they were still swollen. Do yours swell during your week off.
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Dianarose, this is the first time for me and it has only been 1 week, so I can't help you there. It did happen during my week off. If you are concerned, call your Dr or nurse. They should be able to ask you the right questions and put your mind at ease. I was thankful I already had an appointment scheduled so soon. I am able to email my Dr and either she or her nurse answers within 24 hours. It does put my mind at ease. It is worth the call.
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Into light- we are on vacation in Pennsylvania. I have an appointment when we get home next week. I am going to put my feet on the dash on the ride home.
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Ha ha...glad you are able to go on vacation. I was told to get up and walk often and drink plenty of water. Enjoy!
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I wanted to share some good news. At the end of my first cycle's off week my WBC was low at 3.9 and ANC low at 1.6. I know some of you ladies have struggled with numbers even lower, so I counted my blessings. Today at the end of cycle 2's rest week, my WBC was 4.9 and ANC was 2.5. both in the normal range! Praise Jesus!! I even had a stomach virus in the middle of this cycle for 3 days. The only thing I did different;y this cycle was to add a probiotic and a dose of spirulina each day. I also stopped having to take naps after I switched off Paxil to Effexor only 25 mg twice a day. I can't begin to express how grateful I am for this drug combo and having been dxd.now instead of just a few years ago! Gentle hugs to all who need one.
Carol
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Dianarose, did your feet start to swell or get more swollen after a car ride to get to your vacation? Mine swell a lot on long car rides. They used to only swell on plane rides but now they are swelling every night. I found that wearing compression stockings on those car rides helps a lot. Maybe you could find some before your ride home. Lots of dept. stores have them but I found some on Amazon with zippers this past summer when we were taking a two day car trip on vacation. That really came in handy as I was wearing sandals in the heat and I could take them off and get out of the car to walk a bit without feeling dorky. :-)
I see my MO tomorrow and I'm going to ask him about the swelling but I don't expect he will have much to say. It's just one more SE to deal with. If he has any helpful hints I'll let you know. The normal thing is to reduce your salt intake but my sodium is always low anyway so that's no good for me. If my sodium gets too low, I have dizziness to deal with.
As has been said, we are just tired of all this and tired of being tired. And we plod along, hang in there.
Sleep well everyone, you are all in my prayers always.
Hugs, Faith
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Nextmoondance, congratulations!! I like good news. Praise God.
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nextmoondance, YahOO
I wish.
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wow this is an old post! I'm sure you've found out by now...it's 2017! But just to let anyone know, yes, I lost about half the thickness of my hair- I was blessed with thick hair so it wasn't too too bad. I was just always so tired, my WBC was always so low. I.took IIbrance along with monthly fluvesent injection-- here's how I feel about it:
IT GAVE ME AN ENTIRE YEAR WITHOUT ANY NEW TUMORS OR GROWTH!!!)* I feel so blessed. It did stop working after 12 mos. & now has spread to lung. So it's in my lymph nodes, liver, bones, & now lung. They're trying Xeloda on me....anyone taken that???? I'm on my 3 rd week of it. So far, very little side affects(thank you Jesus) but the catch is it only works on about half the people....😞
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survivor~ you sure did earn that name. I hope this new direction of medicine knocks the heck out of those mets!! Prayers for you and all of the MBC & BC sisters out there. Stay strong ladies. We have no choice. Hugs ~M~
I have not had Xeloda, and have had surgery to remove all of my cancer except what remains in my bones, I wasn't set to have surgery, but because of my age they wanted to get aggressive, I had all of the nodes removed, my breast and a small spot on my liver. I still can't believe all this has even happened. During all of that and theterribleness of chemo, those little suckers took up residency in my pelvic, back, areas. Thanks a lot ! I got rid of a ton of cancer but still there it was. Chemo or not, lost my hair and boob, got mild lymphodeama in the terrible process. It's a monster this cancer is and it's a professional robber, it robs us of who we are inside and outside. It's just not ok to have to sit by and play the cancer game, worry worry scan scan then its wait wait! Pray pray,is anyone's listening up there? Cry some more, then cry again! I hate this new life I have been thrusted into without even asking me if I even wanted cancer. None of us were ever asked, but yet here we are. We have to stay strong. Have to fight. For our families. God bless,everyone! ~M~
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My wife will probably be starting palbo in June. Her oncologist would like to give her a rest from xeloda, which she has been on for a year. As mentioned by me in an earlier post, the eligibility to get it on a compassionate basis, here in Canada, ends at the end of this month. So, if she is ever going to get it outside of a trial, at least for the foreseeable future while the Provinces and drug company try to hammer out a deal on pricing, she needs to start it soon. She can always switch back to xeloda if she doesn't like palbo, or if it doesn't work for her.
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Timothy - that sounds like a plan. Welcome. It's nice to know she can go back to Xeloda, but palbo can be very easy.
>Z<
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OK- I know we've discussed the new CDK4.6 inhibitors quite a bit already, but wanted to post here part of a nice synopsis of Abemacyclib from Cancer Commons:
A third inhibitor, abemaciclib, entered the race late but is now quickly advancing to the forefront. It received a Breakthrough Therapy designation from the FDA in October 2016. This was based on results of the MONARCH 1 trial, in which abemacicilb showed promising activity when given on its own (as a single agent). In the MONARCH 1 trial, 42% of women experienced a clinical benefit (either tumor burden reduction or stable disease). The important point about this trial is that many women in the study had already received multiple lines of endocrine treatment, developed resistance to all of these treatments, and progressed. These women had exhausted all options for endocrine treatments, and many had already received chemotherapy. Abemaciclib therefore presents an entirely new treatment option as a single agent for patients who have preciously few—if any—options left. The potential benefit of chemotherapy in this heavily pretreated population is historically only 10 to 20 percent, and responses to it have a short duration, which compares unfavorably to abemaciclib. The results of MONARCH 1 are therefore really very exciting. Abemaciclib is now in trials with endocrine drugs as well (letrozole in MONARCH 2 and fulvestrant in MONARCH 3), with results forthcoming hopefully this year.
The major problem with CDK4/6 inhibitors is their side effects, the most common one being neutropenia (loss of white blood cells). Palbociclib induces neutropenia in more than half of women who receive this drug, necessitating dose interruptions and sometimes reductions. Ribociclib is not much better regarding neutropenia, at least according to the results available so far.
Abemaciclib, however, appears to be more promising in this regard. It is apparently more specific in inhibiting CDK4, and most likely because of that, the incidence of neutropenia is much lower. It does induce diarrhea initially, but this is quite manageable. There is much to look forward to with this new treatment option for ER+ breast cancer. Further development also includes combining abemacilcib with the immune checkpoint inhibitor pembrolizumab in a clinical trial (NCT02779751). This presents a glimmer of hope to extend the option of immunotherapy interventions to ER+ breast cancer, a type so far not know to be responsive to immune checkpoint drugs.
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Thanks, Cure, for more hopeful news! We can never get enough!
Timothy, I pray that your wife is able to get Ibrance. She's blessed to have you in her corner!
Micmel, I know you feel you've lost a lot with this cancer but you sure did retain a lot of spunk and a bunch of compassion. I've known perfectly healthy people who lack both and I choose you!
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Thank you Pat!! That means a lot, some crabbie ass back pain today, yuck. It seems the more I do physically it always leads right to the little suckers in my back area and ouchie they hurt. I can't tell if the darn pain is the cancer or the anastrazole and the other 50 different medicines I have to take. I cleaned two full bathrooms and was up a lot moving around the past few days. I hate how I have lost my stamina, I don't really think it's coming back anytime soon, im starting to think this is just the way it's going to be. Because no matter how much I push and excersise, when I'm done. There is that nagging pain that feels like someone is chewing my bones back there and isn't letting up. Somedays are worse but arghhh. It sucks. Happy Sunday. ~M~0
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Micmel, you just described exactly how I feel! I did some spring cleaning on Thursday and still haven't recovered! My ribs, back, shoulders are killing me. I feel like I go in spurts, and do too much when I feel good and I always pay for it. I guess I'll never learn and I guess it's gonna be this way from now on like you said. We are expecting a rainy week coming up and that always adds to the pain.
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Micmel, two bathrooms?! I can't imagine bending over and doing that scrubbing in just one! Before I had the recurrence in 2012, I had torn out an upstairs bathroom for remodeling. Only the tub and toilet part and the floors got redone so the vanity area sits empty with no sink. I had torn down half the wallpaper in the master bath so it just looks like a storm came through. Sometimes I feel anxious to get it all done and sometimes not so much!
Thinking about your back...have you ever gone to a physical therapist? When the bone mets showed up in September, I thought all my discomfort was coming from them. I got permission from an oncology orthopedist to see a physical therapist. Lo and behold, most of the discomfort/pain in my back, hips and legs was not from the bones but in the soft tissue. The PT did Myofascial Therapy 13 times and the discomfort was gone! Medicare + my supplement paid 100%.....best money they ever spent on me! I still have some discomfort in my right femur which gives me a bit of a limp but nothing I have to take any meds for. I pray that you find some relief, my friend.
I have scans on the 30th so my brain started sliding into the "What Ifs" in the last day or two. If the mets have grown, I'm thinking I could move up to 125mg of Ibrance. I'm not sure I'm willing to do toxic chemo again at this point so I could consider going back to no treatment for a while. No sense borrowing trouble though...better just stick with today! I know God always recommends that!
Have a wonderful Sunday afternoon, all you amazing women!
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Mcmil and Lynnwiid. Im sorry that yall are having pain. I hope they get it in control. Ladies what does everyone take besides the cancer drugs. What can build immunity. Thanks for any advice
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Pat~ I am going to ask about the physical therapy. I just hate adding yet another appointment to my roster, when my onc finally only wants to see me again in three months. I would like to deduct the appointments. Not Add them, but if it I'll give me relief then I guess I better suck it up and dial!! I am tired thinking about remodeling anything no less a bathroom. My back hurts thinking bout it! Will be thinking of you for scans. Imagine me sitting in the chair next to you complaining about my back. Then you wont be thinking about scanning anymore!!
Lynne~ I am the same way. I start to feel a little better and then I'm all over the place, carrying stuff, doing laundry, scrubbing showers. I am not a good pacer. And I can't sit still for any reason. But I need to learn. And I see youre from PA. Its nice to meet you. I hope your back feels better. Hugs of strength!
~M~
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Hi Ladies.
I can't imagine deep cleaning my bathrooms anymore. All I can manage is surface level. I don't feel too bad if I just sit, but that is not who I am. I don't want to waste what little energy I have on cleaning if I don't have to! You are right, I just take each day as it comes. Only God knows what tomorrow may bring.0 -
Micmel, I think you'll be glad you went to the physical therapist. They have steam heating pads called Hydocollators that you lie on for 15 minutes...so soothing. You can also order them from Amazon - just amazing! This is the extra large one.
https://www.amazon.com/Chattanooga-Original-Hydroc...=sr_1_21_a_it?ie=UTF8&qid=1495419961&sr=8-21&keywords=hydrocollator+heat+pack+for+the+backIntolight - Amen!
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