Ibrance (Palbociclib)
Comments
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Just a thought, Time-for-a-cure, but I make the mistake all the time of blaming everything on cancer and cancer treatments. And when you go the ER or doctor, they focus on that, too. Maybe it is something totally unrelated. Maybe get your PCP to think in a totally different direction?
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Thank you everyone. I feel very blessed.
time-for-a-cure: I forgot another big one....chills. For years I would have horrible chills the same time every evening...you could set a clock by it. I would get so cold I would have electric blankets, heating pads, blankets from the dryer all on the me at the same time. That would last about an hour followed by a hot flash for a few seconds. I still get cold, but not a severe and Icarry a blanket in my car.
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Well, gee whiz! I was trying to remember all the dancers I wanted to answer and
who pops in but Ms. Lucky4Life with her highest-I-ever-heard Ibrance/Femara total - - - - - 72 cycles - - - - -WOW! And 125mg, no less!
I'm speechless and I hope you can see my scraping bow, Lucky. You are my hero!
We knew there were people out there who were on the trial so let us have a moment of silence to celebrate you.
...................................... (That's what a moment of silence looks like typed out!)
Re: the ANC - I'm grateful to be one of those who hasn't had issues with counts. My ANC hovers at 3.6 so I'm fortunate. I've only had to postpone Ibrance one week during my 34 months and I'm so thankful. I love how my oncologist puffs with pride over that every time. I know that neither he nor I can control that but, hey, you gotta' celebrate what you can! Remember that he started me on 100mg as he does everyone. I took 75mg for several months because I'm hardheaded and had to try. I had mild progression and went back to 100mg. Anyway, so far, so good on the counts!
Re: Side effects - I blow the "thinking makes it so" theory personally because I refused (as I usually do) to read about the side effects. I'm thankful that I haven't had that gosh-awful list reported by Lucky but, remember, I'm on 100mg. The fatigue is annoying but the nausea/indigestion are more so. I do vomit once a day during some cycles, rarely more than that. This cycle I've vomited only twice. I'm 69 and retired so I don't have many demands on my energy and time. I've become somewhat nocturnal, getting plenty of sleep while the rest of the world is awake! (I laugh when some of you speak of sleeping until 11:00 AM when I'm reading that at 3 PM, still all sleep-eyed!)
Re: Scanxiety - Coming my way soon as I have a PET/CT the first week in September. I'm thankful to feel less anxious about results this time since my oncologist and I have a plan in place should there be progression. We've pretty much decided a PARP Inhibitor is a good choice as I'm BRCA1+. I don't know if he can also swing a try at Keytruda along with it but we'll see. That would pretty much make me the Six Million Dollar Woman, I guess! I've been blessed to get Ibrance at little or no cost so far and I don't know if the PARP manufacturers are into providing free drugs. I'm sure my onc's nurse will attempt that and we'll certainly try the Co-Pay Assistance foundations. I love that God already knows how it will turn out.
I also love that He holds all of you and the scary things you face in the palm of His hand. He has sent us Lucky's good news today for the purpose of lifting us. It sure worked for me! (Edit: I just shared it with the Facebook Ibrance group and they're buzzing!)
Love from PatGMc
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Lucky4Life.
Do you have access to any info on participants that were on original Ibrance trial with organ mets?
Just trying to keep positive. You really brightened my spirits. Wish more long tme users would post like you did.
Thank you again. And I deeply bow in your honor like PatMcG.
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Lucky4life. wow!!!! You are my inspiration!!!
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BLMike, if it helps, it seems fairly standard to do scans at 3 month intervals and for the scans to include CTs of chest abdomen and pelvis as well as a bone scan. Some start to stretch these out if they are stable for an amount of time. I’m on the 6 month schedule right now. Hoping for stable results!
Lucky for Life, holy moly! I bow to you and how long you’ve been on this therapy. Just amazing.
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BLMIke, I think you'll find your wife will be receiving full body scans as long as her insurance company doesn't balk. It all can be scary until you settle in and discover that some of this is routine for people with MBC.
I pray for your peace. I have a dear husband named Mike (50 years!) who walks by my side through this and it's a beautiful thing to be able to share the distress and the joys.
Love from PatGMc
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time for a cure - I like Jaycee’s idea about looking in a different direction about your chills and fever situation. But I also know that infections are a side effect of Ibrance and it sounds like you are showing the signs of having some type of infection somewhere in your body. It sounds like you are doing all the right things, getting yourself to the ER as soon as you are feeling “that feeling” coming on. I’m sorry this has happened to you a few times and hopefully it won’t happen again.
Sometimes the infections hide out in places that imaging just can’t pick up or reach. We have so many layers of tissues and the tiniest pocket of an internal infection can make a person feel awful.0 -
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BLMike, yes, full scans are the norm (at least from the neck to mid-thigh). I get my 3-month scan tomorrow and have been doing this for 3 years. I did move to 6 months, but showed a slight progression so we are back to 3 months. I only get CT/PET scan--no bone scan, although my MO discussed this as a possibility if I have pain sometime. You will find this varies depending on insurance and MO preference. Unfortunately it becomes a new normal for us here. I have no problems at all when I get a scan and I have learned how to live with the "scanxiety" it causes. Still doesn't make life easy. Your wife is fortunate to have you so active in her care.
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Lucky4Life- Huzzah!!!! How wonderful to meet someone from the trials!! Do you still take the Lyrica? How many total years of AI have you had, altogether? Many thanks for posting!
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Re: Scans
It was a good while before I discovered this so I thought I'd mention it for you new folks.
For the longest the folks in radiology who did my PET/CT said I couldn't receive the "stuff" (technical term!) through my port and they had to stick me for an IV every time. I have pathetic Adriamyacin-ruined veins so that was a painful adventure with, sometimes, multiple techs involved. They sometimes even had to search out Cynthia, the magician for bad veins. (Yes, I wondered why we didn't get Cynthia first but I digress....)
Anyway, when a little office with a new tech was set up, I mentioned how much I wished she could use my port. The tech/angel asked if it was a Power Port and I didn't know as no one had mentioned that in SIX years! She pressed her fingertip around on it and said the bumps indicated that it was.
Confetti fell! My life was changed! I don't dread the sticking experience at all now (but I worry about Cynthia's job security).
; > )
Love from PatGMc
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Thanks so much for the clarity on the scans ladies.
PatgMc -- You're absolutely right about getting used to the MBC routine. Of course, for us newbies (we're still only 2 months in), nothing is yet routine. Unfortunately, it will eventually become our new normal.
It really is SOOOO helpful to have you experienced folks help us newbies as we settle in though. Thanks so much.
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Hi Ladies, i have a question: Will CVS specialty pharmacy nurse keep doing follow up call as long as i stay on Ibrance? It's been seven months for me & they still do. I did not answer the calls & they keep leaving messages. I talked to them first couple of months, but felt not neccessary after that because i found most helps & answers from this thread. Just wonder if they will stop follow up at some point? Thanks
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42young...I do not use CVS but I would say they probably will because the pharmacy that fills mine does call every month and mine is not a chain pharmacy.
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Looks like another way to combat CDK4/6 resistance.
https://www.ajmc.com/newsroom/palbociclib-and-crizotinib-more-effective-when-paired-together
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42 Young- I get my Ibrance from a chain specialty pharmacy, not CVS though. When they call each month to set up my delivery they ask the million questions. You can tell they are filling out a form. "Are you having side effects, have you missed any doses, has your allergies changed, has your med list changed, how many pills do you have left, do I have questions for the pharmacist". Kind of tiring to review all the same things each month. But it is what it is. What are they asking you? Mine is a pharmacy tech, not a nurse.
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42Young & Nicole; I order my meds from my hospital pharmacy and they ask no questions. My onc said I could sign up with a specialty pharmacist but this way I don't have to go through any special hoops or answer any questions. I do have to request it each month (online) and then my onc has to approve it. This has never been a problem. They will not mail the meds, however, and I have to go pick them up, but I do it the same trip as my labs. If there is ever a problem with my labs my onc will contact me to wait to start my meds. My lab results are posted online after just a couple of hours. I appreciate my onc keeping things as easy as possible.
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My wife gets her Ibrance through a specialty pharmacy: Briova Rx (which I assume is a result of her insurance company). Briova coordinates with her MO (and vice-a-versa), and call to confirm delivery directly to our house. The Ibrance comes the next day. It's very convenient.
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Hi everyone - just catching up after a busy week. I wanted to share that I have experienced some memory loss and talked to my MO about it. He referred me to a psychologist at my cancer center who is doing research in this area. I met with him and he put me through his 12 week adaptive training program, where you first work to understand whats happening and why (and how that relates to normal memory loss associated with aging) and then he provided a series of techniques to apply to help overcome it. Most of it is typical memory therapy but I did find it useful. Here is a link to an article that explains his approach.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5285475/
Perhaps you can ask at your cancer center if similar programs are offered?
Love to all,
Lauren
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Thanks all for the replies. I order Ibrance online & i do have to answer few questions about any new SE's....The follow up calls are separate from the oncology nurse at the pharmacy. I believe that want to keep track of all the possible SE's of the drug. However, i'm tired of answering the same questions every month, so I ignored the calls lately. It's good to know that each pharmacy handles things differently.
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Hi everyone,
I just wanted to drop a short note that I am still doing fine. I am currently in cycle 26 and still on 125 mg dose (and had only 3 prolonged off-weeks during the last 2 yrs, always caused by normal infections, e.g. cough and cold, during my time off). I am approaching my next staging in early September, however I am hopefull, that I will still be stable (knock on wood). My docs are rather suprised about the fact that (after my de novo stage 4 dx) my whole primary tumour disappeared and so have the enlarged nodes. My last bone scan in July showed no active mets in my spine (although they can still be seen in my CTs, but I understood that they cannot fully disappear). It basically could not be any better. My docs are somewhat unsure how to proceed with me, they even offered me to go from quarterly scans to bi-yearly scans after my 2-yr-staging. I declined, because I am scared to miss the right point of time to switch treatment after progression. But it gives me a bit hope that my docs are sonewhat confident that I might be able to stay on I/L for quite some more time.
Meanwhile, I have more life that I can handle. I take care of my 2 kids (now 6 and 8 yrs), working again part-time since 1 yr and do whatever I like (meet friends, sports, vacation). I take my medication every day and cope with the side effects. What is bothering me most are the joint pains in all pre-damaged parts of my body. But I can handle that quite well.
After my original dx, I said that I need 15 yrs to see my youngest one graduate ... I am still determined to manage that.
Sorry for not posting so often.
Best regards,
Netta (from Germany)
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Oh, and I forgot about my tumor markers: CA 15-3 and CEA are both within the normal rangd again (CA 15-3 just barely, however, at 38).
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Pharmacy issue- We have Ibrance stocked at my local regular pharmacy, but my insurance will only pay for going thru the specialty pharmacy (2 states away and comes by Fed Ex). Go figure.
Lauren- good to hear from ya. I envy you having access to a psychologist with your cancer center. I do forget things at times too. LOL. But I would LOVE to take advantage of the center's psychologist just to talk (depression at times and of course the stress). Our rural center doesn't have such services.
NettaGER- Good to hear from you. Been a while. WOOHOO to the good report. I agree that moving scans out would be anxiety provoking. Better to keep a watch on things. Pop in anytime you have the chance.
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42, I go thru CVS specialty pharmacy and a male nurse called Chris has called me numerous times since I began Ibrance in March. I don't mind the calls or questions at all and spoke with him on a regular basis those first few months, but the funny thing is, all summer long whenever he's called, I haven't been home to answer. He leaves a message for me to return the call but I don't. It's been quite a few weeks now since the last phone message he left, and I wonder if he's done calling, if maybe when they get an answering machine response X number of times, they cross the number off the call list.
For some reason, I picture Chris as looking like Anthony, Carrie Bradshaw’s gay friend on Sex and The City.
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Good to hear from you Netta and that you are doing ok.
I'm Scanned every 6 months.... they don't want to radiate me more often than necessary. Fortunately I'm currently NED as it stands after 13 cycles of I/L. (75mg on a 3 week on 2 off cycle... my trashed body can’t cope with any more isn’t seems!) I do have multiple SEs though, but lead as normal life as possible.
Big boost today, the local cancer charity, Beatson Cancer Support, who have been extremely supportive, phoned to say a local 4* hotel/ spa/ gym had donated a 10 visit pass to all their facilities valid for a year and would I like to have it.... took me but a nanosecond to accept 😁. Been planning to improve my physical activity now that I'm not working.... PE teacher and all that... which is why they thought of me. Delighted as I can swim, jacuzzi and steam if/when my bloods are OK and use the static bikes when my feet are too sore to walk!
Oh and there's a 20% discount on facials etc. They only thing is the spa staff currently are not trained in oncology massage... but I think I might be able to push that as already working with the Glasgow school of massage and another local 5* spa / hotel staff as a case study.
It's about time we as oncology patients were given equal opportunities ... We should be able to go to a spa and be treated equally, not turned away because we have MBC, for want of a little extra training and spa insurance which recognises us!
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Karen; happy that you’ve now got a spa/gym pass. Enjoy it all!! Let us know all about it. I had a lacunar strike during early treatment and was told I could never have a massage by my neurologist But perhaps it will work out for you.
Lauren; great news for your report and thank you for the info on memory. I had a psychological test done for work a long time ago and was determined to ace it. It took a day and a half of testing at her office. All went very well except one section which I simply couldn’t do. It was very strange to me and to this day I don’t understand this brain hole I have. 😂😂🤣
Netta; I totally understand you feelings for 15 years as I just wanted to live long enough to see my high school kids settled.... but now I have 2 grandchildren and I want to be around as long as possible. And I believe you will be there too. God bless.
Lucky4life; you are my inspiration and hope. Six years and doing well!!! I am so happy you came to this site and I too am bowing to you who took on this clinical trial. Thank you queen!!
Cathy
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I have been so busy helping my daughter and myself with these two darling grandson. Posting as I am so proud and happy.
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PatgMc - thank you for the kind words. I don't know about being a hero, but I do feel everyone fighting this disease should celebrate every day. Being positive no matter the struggle has helped me. I do have, what I call, my melt downs....times when I'm angry and there are tears, but don't let last very long. I take a deep breath and focus on the positive.
Re: the ANC - mine would hover at 1.1ish for the better part of four years. I had a blood draw every two weeks in the beginning. Now it's only once a month. The last few months I'm around 1.5.
Re: Side effects - while my side effects have been trying I never had any vomit episodes (although sometimes I wish I had in hopes the feeling would go away LOL). When I get tired, it is like I've hit a brick wall….it just slams me and that's it for the rest of the day. In the beginning I was tiredall day. I got to a point I had energy until around 3:00P and now it's between 4:00P and 6:00P.
Re: Scanxiety - I still have anxiety with every scan, but try not to let it take over.
SandiBeach57 - Thank you for the kind words. As for trial info, I don't have any information. Frankly, I didn't read any of the stats before I started. I weighed IV versus the trial. IV almost did me in back in 2001, so I didn't want to go that route unless I didn't have any other options.
Stay positive. The approach I took when I was first diagnosed in 2001 was to do the best I could with the cards I've been dealt. I have a strong faith and found reading the Serenity Prayer everyday helps me.
NicoleRod - thank you!
BLMike - I had bone and CT scan every three months until just recently. It's standard protocol where I am.
Jensgotthis - thank you!
Cure-ious - I'm glad to be here, thank you. Yes, I still take Lyrica, 75mg 2x a day. I'm not fully up to speed with all the acronyms. What is AI? I've been on iBrance/Ferama since February 2014.
Cathy - thank you, glad to be here
Bloodwork - I forgot to mention in my original post that my MCV and MCH are always high. My doctor found this was not a documented side effect. Once the FDA approved the drug, his other patients had high readings as well.
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BLMike, Normal is just a setting on your dryer!
PatGMc
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