Ibrance (Palbociclib)
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So I heard from someone today that if you only have mets to your bones that your survival rate is better....how does everyone feel about that? Also has anyone that has been on Ibrance with bone Mets had it stop working and had to switch to something else because of progression? These are just a few things I am curious about.
Jaycee 49- you are correct, she is not one of the fighters lol. It’s mostly my 15 year old daughter and 14 year old son....they are relentless lol
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Did someone mention pajama pants?!! I have found the most comfortable Alfani knit ones WITH POCKETS and have bought multiples! They're always on sale at Macy's....
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I am on Ibrance and Faslodex. My eyebrows have gotten thinner and my bottom eyelashes have disappeared. They are still adjusting the dosage and amount of time I take the Ibrance since my counts have been low. But I understand that this is very normal. I don't feel too many side effects from the Ibrance. However, has anyone experienced an "itchiness" at night? I don't mean like an itch you can scratch but I feel like if I don't get up out of bed, I will jump out of my skin. It only happens for a few nights. I have no idea what causes it?!
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Lauren, I also take mine at night because that is when my food intake is most consistent. I initially started that way so I could sleep through any potential nausea, but that is no longer a problem. I had mets in my bones and my liver, but they have all resolved. Your thoughts are interesting about longevity as I am beyond the 2 year mark now...
CrazeeJane, I applaud your stamina although I know you don't have a choice. Your daughter is beautiful. I struggle to keep up with my three year old granddaughter who lives with us. I cannot watch her all day although I would love to. Her momma puts her in daycare and I pick up and feed her dinner before her momma gets home. That much I can do other than an occasional day when she is sick.
Went sailing today with my DH. The bay is right around the corner from where we live so it is close. We rent the boat so we step on and step off with no upkeep or work. We can go for an hour or two just to relax and get away, and one time a month is included in our monthly sailing club fees--cheap. That is all I can handle before my back starts hurting, but it is something we can do together. We learned to sail together before my dx so it takes us back to better times. It was actually 80* today -- he wears a sweatshirt to keep the sun off.
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CrazeeJane - regarding the rash... yes it was little red bumps / not particularly itchy. One month it was near my shoulder in the clavicle. Another time it was on the other side on my arm. I think I had it 3 or 4 times but I haven’t had it since.
Keepmewell - I don’t get the itchy feeling you describe but I know I’ve read here or elsewhere that others do. Ibrance has the craziest side effects ever. None are consistent with me and all are very odd. Scalp pain is my personal fav. Just so strange and it moves around me head in different spots. Then it will be gone for 2 cycles and then pop back up. Like right now.
Regarding CrazeeJane’s question on bone mets and longevity, I think there is some evidence of that but I know for sure there are folks on BCO with liver mets who have been NED for 10+ years, similar to IntoLight, who mentioned above she is NED for 2 years on Ibrance with bone and liver. Every cancer is different and stats are unreliable and old so it’s hard to really know!
IntoLight - what a handsome young man you get to go boating with! How cool it would be to be ‘around the bend’ from the bay. Enjoy
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Hello All,
I can't remember who asked about it.. but I too felt worse on my week off the Ibrance also, more emotional, fatigued and my onc was also suprised about it...
PatG- I am feeling inspired by your support group work, thanks to WANDERING, I've been working on getting some free things going so people here that want to connect have a choice about that. My ideal would be a support group that is empowering and has activities or classes that speak to living proactively, making changes that simplify and bring the feeling of control back to our lives BTW (love all the clothes stories and so excited about the Macy jammies) WANDERING's group has a great calendar with everything from restorative yoga, swimming, estate and legacy planning. I was thinking about journaling/sharing (writers workshop type thing) or a book study, but these are just things that caught my eye and I am personally interested in.
Crazee... love love your picture with your daughter, I have 4 daughters all grown and married
IntoLight- I help my daughter with her 4 year old and it's exhausting.. I get it... but love that we can help what we can.. sounds like fixing her dinner would be a huge help
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CrazeeJane.....a simple answer to your question re feeling emotional and in tears a lot of the time during the break from Ibrance. Yes. I turn into a mess almost overnight. I cry over everything and anything and nothing and I become paranoid and think no one cares when, clearly, they do. That's why I referred to mood changes in an earlier post.
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PatgMcR.....I'm currently reading the LeShan book you recommended, "Cancer as a Turning Point". I think he wrote that book about me! And I've only read a few pages. I can learn a lot from that book. Thank you so much for recommending it.
This week is my two year anniversary post diagnosis. To mark the occasion I turned to my Facebook page because I've drawn a lot of strength from my friends, who nearly all communicate through Facebook, and I wrote:
I am now two years post diagnosis without progression. Just three more Progression Free Survival years to go and I will be in the 25% who are still living after five years.... this is how it's termed in the studies. Personally I think it should be expressed in a more positive and celebratory way. For me these two years have been the most emotional, most educational, most profoundly influential years of my life. I have learned more about human nature than ever before. I have discovered loving kindness and the warm nurturing instincts that dwell in the hearts of the people I am privileged to call friends. Any time that the events of the past two years have threatened to overwhelm me (and there have been events other than cancer), I have only had to pop in to Messenger and I would find at least one friend willing to lend a hand or a heart. If I had never found myself in this position I would never have known such kindness existed. Not to the degree that I have. While I wouldn't recommend my experience or wish it on anyone, these two years have brought me to tears many, many times. But as many times as they have been tears of pain, they have been tears of gratitude.
That's where that post ends but I'd also like to add that I'm grateful to many of the ladies on this forum for their support and wisdom. I fully intend to join PatgMcR and dance the Ibrance dance until I'm 80 and that's many, many years from now.
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IntoLight, love the boat photo of your DH and the fact that you're out SAILING! It looks blissful! Pat, those jammies look terrific. I found some by Soma online, too, that are crazy comfortable. Thanks to all-
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Crazeejane....I was on Ibrance/Letrozole for 4 months for bone mets. It failed me. My hemoglobin kept falling. My onco did a bone marrow biopsy and found mets in my bone marrow. I was then put on Taxol infusions...15 infusions. The Taxol took care of the bone marrow mets. I have been back on Ibrance/Letrozole for 7 months. My 6 month scans showed stability and even some regression of the bone mets. My hemoglobin has been normal. Hoping to be able to stay on this Ibrance train for a long time.
Hope
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Fog on the creek this morning early.....so peaceful and soothing-
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Crazeejane, I was on Ibrance/Femera for 30 cycles before it progressed to my liver. I am now going on another trial with Alpelisib and Fulvestrant, starting on Tuesday.
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IntoLight: My husband and I have been sailing for over 45 years each. We no longer live in a sailing area but if we make it to San Diego, would love to join you guys for a brief trip. We would be more than happy to pick up the cost. I met him through mutual sailing friends so we have lots of joyful memories.
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Leapfrog, that was a beautiful post. I am just two weeks behind you. I couldn't have said what this journey has been like any more beautifully than that. :-)
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Wandering, we would love to hook up with you, or anyone else on this thread. We sail very simple--usually a bare 22' boat we sail in the bay rather than the ocean as it is easier on my back with no swells. PM me anytime.
Leapfrog, well said.
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Joyner, that is a truly beautiful photograph. Thank you for sharing. :-)
GG27, it looks like you're almost 4 1/2 years out from your MBC diagnosis? If you don't mind my asking, did you start with anastrole as a single agent and then move onto the I/L combo after a failure with that?
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Leapfrog, loved your post and the (mostly) positive journey you've been on these past two years of treatment.
Nonahope, great to hear from you and expect that you'll be on this thread for many moons to come!
Keepmewell, both my top and bottom lashes are so thin and stubby as to be essentially gone. On the plus side, there's nothing for mascara to stick too so I don't bother anymore. I have taken to using false lashes on special occasions. Once you get the hang of them, they're actually fun.
Wishing everyone a great weekend.
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Hi,
I have been on ibrance femera since January 2016. This last week I had an MRI done on my right shoulder due to increasing pain and limited ROM. Unfortunately the radiologist found a lesion on my right clavicle. Now i am to have a pet scan on tuesday and see the oncologist on Wednesday for results. Needless to say I'm in panic mode. I am wondering what treatment will be next? Is there organ involvement? So many of you here are stronger than me. A few words of encouragement would be a great help to me. I hope everyone has a great weekend. I have a feeling mine will be very long.
Melissa
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Melissa, If the PET shows FDG uptake, ask your oncologist to refer you to a radiologist. You may be able to get that spot on your clavicle (if it's anything at all) zapped into oblivion! There are often differing opinions among the various specialties as to the best way to handle a particular spot. You won't be out anything by getting a radiologist's opinion. There is no reason to expect that this means you have organ involvement and even if you did, that is not a death sentence.
I'll be praying for you, especially for peace during the unknown. It's always the hardest spot. Remember that you found the strength to get through your first MBC diagnosis and you can draw from that strength for everything else.
Much love from PatGMc
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Aw lissalou I can only say that I have had so many terrifying false alarms on this journey and false readings that I wish my brain could take control of my heart. I don’t want to get be you false hope but the bones are SO hard to measure and assess accurately. And I’m sure you’ve read about all of the second line treatments that are effective. Successful treatment for nearly three years bodes well for future success on other treatments.
Love,
Penny
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Lissalou, I'm in full agreement with Pat and Penny and couldn't have said any of it better. Hang in there, girl....
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More news coming out of the ESMO2018 conferenc
We know that including Ibrance with Femara/Faslodex/AI improves PFS, compared to taking the AI alone, but until now it was not clear if patients lived longer overall.
Now at a followup of 44.8 months the numbers from Paloma-3 (which combined Ibrance with Faslodex) are showing for the first time that taking Ibrance confers an overall survival benefit, which thus far is nearly 7 months, and 11 months for bone-only (ie, no visceral) disease:
https://www.esmo.org/Press-Office/Press-Releases/P...
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Cure-ious that is HUGE! I have been so hoping we would see that soon. I can’t tell you how grateful I am that you keep us up to date!
What would we do without you?!?!
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Penny,
I am 4 1/2 years out, just changing from first line due to a small progression with a liver lesion. My first line was arimidex and we changed over to Ibrance/Femera because I was accepted into a trial not because I had progression.
I am heading into the BYLIEVE trial on Tuesday which is alpelisib and fulvestrant. You must have the P1KCA3 mutation to be in the trial.
cheers, dee
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Melissa, the waiting and the not-knowing is the hardest part, but we're right here waiting with you. Once you get the results, whatever they are, you will be able to make a plan and move forward. Until then, remember that you are strong - your strength has seen you through these past 3 years and will not fail you now.
Dee, you're the 2nd person that mentioned the Bylieve study on BCO today. The other is having great success with minimal SE's. I bylieve you will see the same!
Cure-ious, thanks for sharing that great news.
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Hi... I just started Ibrance this week, and the pharmacist told me I could take it with food or not. My choice. I thought that I had read you need food with it, so I asked my ONC and she said the same. Makes no difference. So far, I've taken my 6 pills this week with my lunch and have had no issues.
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Cure-ious, thanks for the great news!
Snooky, Pfizer, developer of Ibrance, says to take it with food because it "works better". Good luck, and welcome! We're happy to have you among us though sorry that you need to be.
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Snooky-
Welcome. I take my Ibrance with breakfast because that is a meal that I have everyday at home regularly. Many have said on this thread that it is recommended with food to work better. And also I want something on my stomach to prevent upset. Keep the questions coming, nothing is off limits. This group is wonderful.
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GG27 thanks for the information! I wish you great success with your new protocal. I hope you keep is all posted!
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Ibrance is fat soluble so it needs fatty food in your gut to be absorbed into the bloodstream, I take mine in the morning with hot oatmeal made with milk instead of water.
Hobbes
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