Ibrance (Palbociclib)
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I am not sure where to ask this so I will start here and you can redirect if necessary. I am staying with my grandchildren for a few days and noticed bumps on his arm which i am told is Molluscum contagiosum a virus that affects children 1 -12, cancer patients, low immune systems etc. Arghh from what I read it is highly contagious, but harmless to the small child, just persistent and stays around and spreads from 1 location to another. I will be avoiding contact with him other than a farewell hug in a couple of days - anything else I can do apart from super, continually my hands? thanks for any suggestions or redirection. Janky
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janky- i run a daycare and have seen what adults go through when they catch. It's horrible. If you help them change their clothes use gloves and still wash your hands all the way up to your elbow. It is highly conta
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Janky;
I'm sorry, I love love my grandchild so I know this is hard but perhaps it's time for you to leave before you get horribly sick.
Cathy
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Maybe call your oncologist's office tomorrow and see what they think?
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Thank you everyone - I will be insanely cautious!!! I am just hoping to start cycle 4 of Ibrance at the end of week, so do not need anything to hinder that!! I will definitely call my MO in the morning. I am in Florida and my flight back to Alberta is Wednesday so hopefully this won't be an issue.
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Good morning all,
I haven't posted in awhile but am an avid reader. Thank everyone for all the hope and information that you share. Cureious you are amazing and I am grateful for all of your diligence with upcoming treatment options.
My next Ibrance cycle will be number 12 for me. I started at 125mg and now am down to 100. I made the decision to reduce dosage based on information and links provided here which gave me the courage to ask about a change so that I wouldn't be so tired all the time.
Since taking Ibrance I have traveled quite a bit, sometimes just weekend getaways. I went camping at Lake Louisa FL, Atlanta twice, New York, Mecca, Medina and Dubai (all one trip). God willing I have plans for another camping trip in June and Morocco in July. I couldn't even plan for these travels without the sustained low side effects of Ibrance. Of course anything can change but for right now I try to stay active, positive and hopeful.
Take Care All
Tanya
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Hi ladies. A quick question . After three cycles IBRANCE failed me and found new liver Mets. ER +PR-HER2-. Is it possible after chemotherapy to return to IBRANCE/FASLODEX combination and stay in remission or should I continue chemo forever?
Thank you
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Tanya- your travels sound wonderful! Many here continue to live life fervently while we can. Then we enjoy the travels through our virtual BCO friends. It’s great seeing your posts and pictures!
Lena- Three months is a very short time on Ibrance. Check out the Liver Mets thread to see good information on current treatment approaches. It seems that folks may change to something besides Ibrance for a while and later go back to that or a similar drug.
There are many options!
Get Bestbirds guide if you haven’t already. She explains treatments for many situations. It will give you questions to discuss with your doctor. You can find it In the stage IV forum near the top.
Some of our liver friends will have more ideas for you
Thanking of you,
Kathryn
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Thank you Kathryn
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Lena: it is the question whether Ibrance failed or if it just did not have enough time to work. Unfortunately, it is not easy to answer. If you are able to get rid of the liver mets, there might be a chance to get back to Ibrance. However, this is something to be answered by your MO taking into account your specific situation and cancer.
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My first post! I've been following you brave, funny, wonderful women – and learning so much from you – over the last few months on this board. A few days ago, I saw a request for our stories, so I thought I'd finally post and pitch in.
So my story is -- on November 8, 2016, I collapsed in excruciating pain and was rushed to the emergency room. (That was a very big day here in America – I remember it well from the ER and still wonder if I'm dreaming it all:) Anyway, it seemed like a slam dunk -- kidney stones. But the MRI showed that my little kidney stones were not the culprit at all but lesions on my spine – and one of those lesions had just hit my spinal cord. After 10 days in hell, the scans, tests, and finally the stains told them my story – I had MBC to my spine. De novo. No primary ever found. No nodes. After a clean mammo just a few months earlier. (I'm apparently one for the textbooks – but this is not the book I wanted to be in!) All the more terrifying for me because I'd lost both my mother and sister to this beast, and had spent two years as a caregiver ...
So much to tell about these last 18 months but you all get it. The pain. The shock. The sadness. The despair. Then starting treament and living for, with, and with the amazing support of my DH. Living for my two beautiful kids -- young teenagers – every waking moment.
Today, I started my 19th Ibrance cycle. FYI my side effects have been pretty mild. Fatigue for sure, a little barely noticable hair thinning, and some other funny little things that crop up now and again. But I'm back to work at my half-time job, and grateful for every moment of every day.
Today I got my scan results. (I had a scare two scans ago with growths in my liver -- they did indeed ultimately turn out to be cysts but the scans are even more frightening to me now.) So I'm happy to quote my MO from a few hours ago -- "Everyhting looks great and couldn't be better."
So I "dance" with all of you. And every day I'm grateful for the power of prayer, and modern medicine! And I thank you for the amazing support!
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Penny, great story--one that is a snapshot from where we were to where we are now. I am sorry you have to be here but am thankful for modern medicine and people like you who can share and be positive. The dance is improving!
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Penny. Great post. I am one cycle behind you..starting #19 next week.
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Penny we ,too, will learn from you..TY and prayers to all.
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Penny, I'm so very thankful for your good results as an Ibrance Pioneer and I welcome you to our happy circle! We've been needing to hear your inspiring story. I say special prayers for everyone still raising children and am extremely impressed that many of you continue to work outside the home. Warriors, indeed!! I started Ibrance on October 2, 2016, so I'm not too far ahead of you. So far, so good! I had something show up on my liver in 2012. It turned out to be FAT...something my doctor blamed on "one too many Whopper Burgers"! I also had a place on my spine that caused some pain. The doctor who did the biopsy said he was pretty sure he got all of it and, lo and behold, it was benign! No more pain.
Regarding the Ibrance rash: I had a really itchy rash on my lower legs for several months in 2017 and it has returned now and then. Not terrible. Some weeks ago I had a big red itchy spot with blisters come up on my shin and its twin popped up on my hip. It itched like crazy and hurt a bit. I got concerned that it might be Shingles and promised my husband I'd call the doctor today if it didn't get better. I really, really don't like to go to the doctor aside from my routine monthly visits so I treated those places with a whole lot of Cortisone 10 (sp?). I'm happy to report that it's all remarkably better and I ate a Magnum Chocolate Covered Ice Cream Bar w/ Caramel to celebrate instead of seeing the doctor! Here's to cortisone cream and ice cream!!
I'm so happy to hear how many of you have lowered your doses of Ibrance and done well. In two weeks I'll have my first PET/CT after taking that break and then reducing to 75mg. I'm expecting all to be well and I'd love to have your prayers. I'm seriously thinking about taking a few months off no matter the results. I've been less fatigued but have had a good bit of nausea this month, even on my week off. I don't like taking anti-nausea meds so I just deal with it and hang close to home. Anyway, I may change my mind about the break but we'll see! I have an art show in early July and another in August and need to get ready.
I love hearing about the trips you guys are taking and hope you'll post more pictures!
Love to all of you from PatG
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LNF & Lenagreece-- I'm sorry to hear about your current situations, but am sending you much light and wish for the best for you!
Penny78 - Great story! Thank you for sharing! And congrats for your scan!
Weighing in on the FedEx of Ibrance. My pharmacy said I can request no signature required. I have an enclosed porch and the FedEx guy places the package inside the porch. The pharmacy never told me that if it were lost, I would have pay to have it replaced! Also, from the posts above from Joyner and Seaway, it looks like there's a big difference in price ($6,625 - $11,000). Wow!
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Ladies--
So today I got the blood test results for the Cancer Marker, CA 27-29. It had not changed, up or down--just stable. I was tested in January, but didn't start Ibrance until March. I've been on Ibrance for 2 cycles when they tested again. So not sure if went up in the 2 months before Ibrance or not, but it's at the same level as before. Has anyone else experienced this? Where after a couple months on Ibrance, there's no change? I've read here that Ibrance can be slow. When did you all notice markers dropping? Or do they often just stabilize?
I won't have a CT scan for another few months -- 6 months after starting Ibrance. ONC did mention that 3 months was too soon for a scan.
Thoughts are much appreciated!
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Tanya, so glad the 100mg is allowing you to make wonderful travel plans. I just got approved for cycle 11 on 125mg, but I'm bouncing around the bottom of the tolerable limits, and feel pretty crunchy at day 21. I've got a big trip planned in August and we've decided to reduce to 100mg in July and August. MO wants me to pop back to 125mg after that, we'll see...
Penny, welcome, I'm joining in your conga line! Please continue to post and let us know how you're doing.
OK, Miss PatgMc, you've got me a little concerned. You are not a complainer, so the fact that you're thinking of taking a break is a thing. Prayers to you, done and done.
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PatgMc - I'm so glad to hear your rash improved! My hip rash has shrunk in size, but still there. Hoping it continues to shrink. Good luck with your art shows! Keep up all posted.
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Jaylea, thanks for your concern and especially for your prayers but I'm totally okay. I'm just going to wait until I see what the scans say to decide. If they are the same with just that one spot of 2.3 uptake, I want to see if I can get the same results with less treatment. (I'll just be my own little clinical trial!) And if I have new spots I'll want to take some time off before trying the "next thing". I stopped treatment for two years back in 2014 and the world didn't come to a screeching halt. In fact, I think Ibrance was approved during that time period! All that being said, I might just stay in treatment and not miss a beat. It's all good. Tomorrow I get to have lunch to celebrate the end of Eighth Grade with my granddaughter and daughter. When they told me I had widespread mets in 2016, I wasn't altogether sure things would be this good by 2018. I'm so thankful to God and to all you encouraging friends.
Love from PatG
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MountainLady, are you treating with Cortisone? Try it and see what happens. I hope it disappears soon.
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PatgMc- I had been treating with Cortisone and nothing seemed to change. I've been using something called Bio Oil, used for skin conditions and scars. Seems to be helping. Maybe I'll switch on and off. Thanks!
Was more concerned with my tumor marker blood test (see above). Though I have heard that the tests are unreliable due many other things affecting there outcome.
Take Care!
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MountainLady, people are probably tired of reading this from me but I have declined tumor marker tests all these 24+ years because of the many friends who fretted over their rise and fall. For some people they seemed to be reliable but not for most. If people get regular scans, I don't understand why blood markers would give any advantage. Just my thoughts!
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Welcome a penny and thanks for sharing your own roller coaster ride story! Your scan results give me so much hope, as I just started cycle 4 of Ibrance, dx with MBC in feb 2018. So happy for you!
Pat - praying for your scan results and that it helps you to make a treatment break decision that you can feel good about. also I love your posts. i feel like I can hear your voice as I read them. Like you are sitting right next to me. It’s comforting and I appreciate that.
Mountain Lady - I get the rash, but on my chest. Oddly - it’s all around my bra strap areas. It comes and then goes and then before I know it, it’s back. I’ve tried cortisone but it doesn’t help much. It seems to run its course regardless of what i do. It doesn’t itch too badly and it really doesn’t hurt either. I may try bio oil. I have used it for other purposes and I am pretty sure i have some. Thanks for that tip!
Hope all are well!
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hello everyone! Wanted to run something by you, on Saturday I was helping set up for my 6 yo granddaughters birthday party, when all of a sudden I felt chilled. I went inside to warm up, but just could not get warm and began to shiver and teeth chatter. I monitored my temp over 90 minutes or so, when it went past 101.5 i called my MO. Of course I was in a different city so i ended up at a local ER. By the time I got to the ER it was over 102. They were quite nice and did the normal septic workup and gave me fluids. After a few hours of fluids, observation and Tylenol, i was feeling better and they let me go home. My temp returned to normal and after a good nights rest, I was pretty much back to normal. All cultures, , X-rays etc were negative. This is the 2nd time this has happened to me. Has anyone experienced anything similar? I am on cycle 36 of Ibrance/letrozole.
RE. Ibrance delivery. Since I live in Milwaukee Wisconsin, in the city. I don’t want it delivered to my house for several reasons - i dont want i exposed to extreme te tempatures from below zero Winters’s to 90 degree summers, and I certainly dont want it snatched off my porch. I have it delivered to local UPS store that ison my way home from work, and they sign for it and I pay them $5. Works very well and I dont need to worry about it. Might be an option for some of you!
Praying for good scans for everyone and a wonderful Memorial Day weekend.
Kitty
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Welcome, Penny...we're so glad to have you among us but sorry that you need to be here. Thanks for posting your story, and hooray for your good news!
PatgMc, as you may recall, I'm the big rule follower, and I, too, have concerns, with Jaylea, about a break. Enough said and not my business. We love you.
Hugs to all...
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Pat, good luck with your scans and with your decision regarding taking a break. I hope you feel all of our good energy and love surrounding you. You are a bright star on these boards and a ray of sunshine. Please help yourself to a big laddle of hope and kindness from the communal pot you have always worked so hard to fill.
Penny, welcome and thank you for sharing your story. That is quite an ordeal you have been through and I’m glad Ibrance has done its job and brought you back to a better place. Long may you keep dancing.
Kitty, no experience with unexplained fevers, just hugs. That must be very scary and I hope your doctor figures it out. Fever itself is only the immune system ‘s response to something and is not harmful until it gets very high. Tumors hate it a lot more than healthy cells and fevers have been implicated in “spontaneous remissions” for centuries. The problem of course is not knowing what’s causing it...
Mountain Lady, stable markers are definitely not a bad thing, especially this early in the game. Hopefully by the time of your scan the mets are in full retreat.
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Thank you all for the warm welcome! Knowing all of you as I felt I already did (from my months of following this board
I'm not surprised -- but certainly very touched and appreciative. :-)I know that none of us want to be here, but I also know we're all glad we're not alone! I do see that a few of my new friends here are on very close cycles to me. If anyone out there also has a similar diagnosis -- i.e. de novo with no sign of any primary -- I'd be especially curious to share information.
My DH is constantly online following all of the exciting research (not quite up to cure-ious' level but maybe a close second sometimes) and he has never seen word of an MBC diagnosis where ultimately at least a node wasn't found. He's convinced I should take it as a positive (he read something once that alluded to a the possibilty of a very strong immune system at play) but, well, he's my DH -- and how objective can he be!
Hoping for great scan results for all who are at it this week too!
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Time for a Cure: Don't post much, but wanted to acknowledge your issue re: chills and fever. Yes, I've had this happen to me twice. Once just aches and chills and no fever, but felt icky for a couple of days. Then this past Sunday, got home from eating, got wicked chills and woke up with temperature. Had it all day yesterday and felt lousy. Then by morning my fever had broken and I was in a pool of sweat. I feel a little foggy today, but pretty much back to my normal. I ate sushi Sunday night and was wondering if there could have been something in there that made me sick. I didn't have any GI issues though.
And, I"m on Ibrance, FAslodex and Xygeve for bone mets. 75 mg. dosage of Ibrance.
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time-for-a-cure and Buddhahead- Some strong responders here! 36+ months and six years out?!
I have been following some of the late analyses from Paloma 2 trial on Ibrance, giving more info on time to progression for different subtypes of MBC:
A total of 666 patients (n=444 palbociclib + letrozole; n=222 placebo + letrozole) were enrolled. Arms were well balanced in terms of visceral (48%) and nonvisceral (52%) disease and prior endocrine therapy (56%) and no prior endocrine therapy (44%).
After a median follow-up duration of 38 months with palbociclib + letrozole and 37 months with placebo +letrozole, median progression-free survival was 27.6 and 14.5 months, respectively, in the overall population (hazard ratio 0.56, P <.0001).
All subgroups benefited from the addition of palbociclib to letrozole. Notably, patients with low disease burden (bone only, nonvisceral disease, few disease sites) derived significant benefit in terms of progression-free survival, including those with both nonvisceral disease and no prior endocrine therapy (median progression-free survival 36.2 vs 27.6 months; hazard ratio 0.59, P < .01).
Importantly, median time from randomization to the start of the second subsequent systemic anticancer therapy was 39 vs 29 months for palbociclib + letrozole vs placebo + letrozole (hazard ratio 0.72, P < .005). No new safety signals arose with longer follow-up. Therefore, palbociclib + letrozole delays the time to starting second subsequent anticancer therapies by 10 months.
Dr. Rugo concluded that after the longest follow-up of a phase 3 study of a cyclin-dependent kinase 4/6 inhibitor for advanced breast cancer, palbociclib + letrozole continues to improve progression-free survival vs placebo + letrozole consistently across all subgroups while toxicity has remained manageable.
Patients with low disease burden or sensitivity to endocrine therapy alone experienced progression-free survival >3 years (significant vs placebo +letrozole), demonstrating the clinical benefit of palbociclib + endocrine therapy.
And Hope Rugo said in Feb 2018 she has one patient still on Ibrance-Femara for five years, patient started on it as part of the Paloma-2 trial
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