Ibrance (Palbociclib)
Comments
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Thanks Cowgal & BevJen. I see my MO on Tuesday and hopefully this testing will be set in motion. I would guess a biopsy could be done on at least one of my liver mets if the test uses tumor cells.
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Rosie, I'm so sorry. Hoping foundation one or something equivalent will give a clue whats going/whats changed/the cancer's nature in order to make your next move. I did genetic testing in the beginning of my cancer crapfest and it didn't show any of the usual mutations (braca1, 2, chek2, etc) either. Foundation One at Stage IV diagnosis did end up showing something, not actionable, BUT gave a clue as to possible nature of what I'm dealing with. Hoping a deeper dive genetic test will help with decision making. Remember, once a dancer always a dancer
Pocket duty for Tuesday, let us know what MO says. 0 -
Rosie- I posted to you on Mel's Thread. I had Foundation One at diagnosis in 2017 and Tempus this year on my progression (but I go to a different cancer center now compared to 2017). But with a biopsy tissue sample they can also look at ER/PR/HER2 to see if that has changed, not just PIK3CA or BRCA or etc.
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Rabbit and Candy, Thx for the info. It’s good to get a refresher on things I’ve read in the past and filed away in my head. I appreciate the help.
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Rosie, I am also sorry about your news. Keep us posted on what the MO has planned. I am sure your MO has a plan to knock this cancer back asap.
ParakeetsRule, when was dx stage IV they checked for P13K mutation before I started tx, too. I guess it's good to know about the P13K but I'm sorry you were all ready to start Ibrance and this is discovered....keep us posted on your treatment plan.
GoKale - how's your shortness of breath/cough?
Scans - long day yesterday with the Pet and CT scan. I see my MO on Monday for blood work/faslodex and the appt for reviewing the scans. I received the scan results in MyChart last night and they were both "no evidence of active disease" and a lot of 'unremarkable" on the reports. I am relieved that my scans show that the cancer is stable for now but it's always hard when others have scans/ MRI in the same week with different results.
Some days, ok, often I still can't believe that I and so many people are living with advanced breast cancer and share in this surreal experience. I thank you all for your insight and support!
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Rosie: This really saddens me to read about your progression. You were very supportive to me while going through radiation which I appreciated the same. I'm sure your treatment team will have an aggressive plan as they did before when you had surgery to your primary tumor. From what I remember you have a solid team which makes all the difference.
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Rosie, I join others in saying I’m sorry for your progression. I am sending hugs
Aprilgirl1, I’m so happy you’re stable. I know those with progression feel the same. When I thought I progressed, I didn’t think poor me when others were stable. We are here to cheer those on who are stable and virtually hug those who have progression. I’m so happy for you.0 -
Thanks to all who sent good wishes to me. I really appreciate them and will report back what I hear from my MO on Tues.
April Girl, Congrats on NEAD and unremarkable!! Our cancer world means we live from scan to scan and good news is something we all enjoy when we get it, so we celebrate with you! I know the feeling of having good news to share when someone else just posted not so good news. I think it’s just how things go around here.
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Aprilgirl- Woohoo on the stable scans !!!! Always celebrate the good on here.
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oh Rosie , so sorry to hear about the progression. Hopefully your team will have a good plan of attack.
Aprilgirl- yay for NEAD
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AprilGirl - Congrats on the NEAD and unremarkable scan! Oh, to be unremarkable, lol. You give us all hope!
Rosie24- so sorry to hear about your recent scan. A doctor recently told me that sometimes after being on these SERMs, the estrogen receptor changes. She suggested blood test (like others have mentioned), genomic testing through either Foundation or Guardant Health and to look for ESR1 mutation. She also said to test for PI3K mutation.
AprilGirl, thanks for asking. My cough and shortness of breath seem better. I spoke with a nurse at the MO who said that they could move my scans sooner if I wanted. Ideally, I would keep the current date at the end of the month to allow enough time between scans to see if the meds are working. So since I felt like I am not in any true danger, I didn't ask to be scanned sooner. She said I can always call back later if I change my mind. And as crazy as it sounds, it seemed like after that conversation, I did start to feel better. I keep testing out my lungs with brief vigorous walking or climbing stairs, and I seem to be doing better. I changed my allergy medicine to try to stop my runny nose. I cough less. So fingers crossed it was just a temporary fluke. Thanks!
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Aprilgirl, I'm very happy to hear about your unremarkable scan results! As you said before, you've got that yellow light now for the next few months. Enjoy your holidays and take deep breaths, my friend.
Rosie, I am thinking of you and hoping you can get a biopsy of one of those spots in your liver, and also hoping that may give more direction about what treatment is next. I've heard many people mention radiation as a possible option. I will also be in your pocket for your MO visit.
It seems this is just the reality of this MBC, we don't know when we'll get progression, and it's scary when we do, because then what next? Like I'm used to my ibrance side effects, I can plan for things and work, but what about the next treatment? Will that one lay me low and I'll have to give up stuff? It really does help me to hear what others are doing and how they're feeling, so at least I have some idea of what the options might be and what I can expect.
I received a lovely sterling silver pendant of St. Agatha today, very beautifully made and solid. I find that it helps me to have a literal touchstone to help keep me grounded these days.
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Rosie sorry these about your progression. Sending hugs your way. You’ve always been so supportive of us all.
April congrats on your great scans.
Tana
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Rosie - I am so sorry for the progression. I hope that you have a productive appointment with your MO on Tuesday and really get a solid way forward. I wish you the best with your next treatment line.
April - Congrats on the NEAD! That’s so wonderful for you! I hope this leads to a less stressful holiday period.
GoKale - I’m glad you’re feeling a bit better! I hope the cough and shortness of breath continue to diminish.
Happy Friday to all you wonderful ladies! I hope you have an enjoyable weekend
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Rosie, sending you hugs and best wishes. Please check this great thread that Moth created: Genomic testing for stage IV, you can find many good information.
Gokale, I had shortness of breath for several months, and my lips and big toes turned blue, those related to se of ibrance plus combination of different things eg radiation, being physically inactive, low rbc etc I must say once I reduce to lower dose shortness of breath gradually got better but still is there when I climb up the stairs/ talk fast.
April, congratulations on the NEAD 🍾 thanks for sharing your great news with us, believe me it gives me a lot hope as well as happy for you.
I’ve got a cold again... so annoying 3 times in a row, sorry if I missed some posts. I think of all of you. Have a nice and warm weekend.
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Cure-ious - It's so good to hear you chiming in. I always love to read your contributions. I hope you are doing well.
Parakeets - Remember that a second opinion has nothing to do with your trust in your current MO. Each doctor has different patient experience, different knowledge and therefore different perspective. Your life is worth getting a different perspective even if it only solidifies that your first MO's opinion. Good luck.
BAP - I think an out of province opinion is a good idea. My words to Parakeet are true for you too. We have to advocate for ourselves. I'm toasting you right now (with my water glass) that your ANC cooperates and nasty infections stay at bay. Hugs.
Rosie - Yoyr scan results are disheartening but I know several who didn't find the key to NEADdom until their 3rd or 4th line of treatment. Hang in there. Your day just hasn't come yet. In your pocket.
GoKale - it sounds like you're moving in the right direction. Bravo!
SnowDrop - what the heck? Three colds? That sucks
Rabbit - This story is for you. Can you do a little courtesy? So I never had gas on Ibrance but Verzenio is a completely different animal. So last night I had a little gas as I climbed into bed. We have a drapery installer coming first thing this morning. My husband popped out of bed this morning and threw open the windows and said he needs to air out the room because there is no doubt the room reeks of farts.😳 He said I had such bad gas last night that it woke him up. 😛🤢 Who me? I swear they were just a few silent puffs as I drifted off to sleep….
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RK2020, you gave me a good laugh this morning re airing out the room. When I was on Ibrance, I occasionally banished myself to another room at night after waking DH (who can sleep through almost anything). I love your window treatment and the view is gorgeous!0
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Snowdrop, Thanks for suggesting Moth's thread on genomic testing. Moth is such a great resourceon many topics!
RK, Your airing out the room story was great! These drugs certainly take away all modesty with farting. And thanks for the encouraging words.
I really feel so appreciative of the kind words from you all. 💕. It's been a little strange to keep taking my I/L once I knew about havingnew mets, but I figure a few more days till I get direction from MO is ok.
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Rosie your response to April was amazing. I talk about you ladies all the time to my beloved. I tell him how amazing you all are, how supportive you are of each other and me, how strong you all are. I don't mean strong like people outside our particular cancer world say it. I mean it in the way that as the months go on and scans happen there is support all around no matter how the chips end up falling - its a 50/50 gamble every 3-4 months - we never know which way it will go. To me there is a special courage to accept outcomes good or bad and still be celebratory for others, there is something to be said for it, its an trait I see so often amongst you all. It makes me smile and it makes me cry. Smile because I feel I've grown so much watching you all and how you all handle things and cry because its not fair to watch amazing people suffer such things physically and agonize about such things mentally. You all astound me
I think we all watch ourselves and our own feelings/fears/hopes play out in each others struggles/celebrations perhaps that's why everything effects us so much when it comes to each other. Aprilgirl - totally celebrating your NEAD
I'm dancin', I'm Do Re Mi So Fa La Ti Do-ing - just everything - happy for you Kale - Glad your feeling better! I'm glad too you have the option of moving things up if you want to. Maybe it was a mixture of some early scanxiety - Ibrance does cause me to have SOB on occasion and it gets worse around scantime of if something is bothering me. Feels like we're on high alert all the time eh? Sucks.
Cakes - I agree - it really helps me alot to see how others are doing. Sometimes its validation for me that its okay to feel how I do etc. Nobody else understands outside us. I'll sugarcoat to extent outside here but here I don't have to at all and thats needed very much.
B-A-P repeat yourself a dozen times if you need to, nobody minds. We're all rooting for you and Ibrance to get in rhythm with each other. Still have everything crossed you'll be good to go for round 3!
Rosie - we are there for pocket duty on tuesday with MO. It must feel strange doing one last dance with Ibrance knowing your likely moving on. You did well on it, I hope your next dance partner treats you just as good or better
Candy - I will always think of you as an Ibrance OG even tho you've moved on. Wishing you continued success on Lynparza
Snowdrop - oh no on cold #3. You know the drill, vitamin c, chicken noodle soup etc. The TV series ER does have some hot docs sans mask so you can get the full experience not just the twinkling eyes part
I watch this series and I think to myself - where the heck are all these docs with sparkling witty personalities at? All I keep running into outside my MO is a bunch of Dr. Romano's. RK - LOL. First of all that is a perfectly framed window (nice curtains!) and the view ain't bad either. Secondly, inwardly I chuckle at nature's built in noisebox. My beloved has managed to wake me out of a sound sleep cross eyed on several occasions, if I do the same to him now its just payback as I never could achieve his thunderous results - the fact that I'm on par now to enact some revenge is sorta like a new form of foreplay since sex isn't possible anymore - how much can I make my beloved gag. "Holy crap!!!" being emoted from across the room as he turns green is kinda like 4th base :)I was watching the movie Ghost the other day - its amazing how many movies reference our 'little' side effect.
I realized looking back over my posts I do tend to get a bit verbose. I'm rotating between watching old in living colors and madtv skits and watching nostalgic movies lately, including Santa Claus the movie with Dudley Moore and John Lithgow. I think I need to scale back a bit on the verbiage so frequent "Uh huh's" aren't necessary
Love to you ladies!! 0 -
Good evening everyone. I hope that this weekend was kind to you. I have the people for the tornado devastation in my thoughts.
We’ll all my visitors are gone and I can finally get back to my schedule. It was both good and bad to have everyone here and I’m both sad and glad that they are gone. It’s just a lot of stress to have people in my house for an extended period of time. But I love them and miss them. Now it’s time to clean the house and do a ton of laundry.
I’ll admit though, I haven’t been feeling well this last week. I’ve had to take a lot more nausea medication and my appetite has been a bit off. And my joints ache a lot. I’ve taken a lot of hot baths and it helps for a bit but then I'm just sore again. Was the nausea worse for any of you after the first 3 months? Is it just accumulating? I need to figure it out I guess. And it looks like my cholesterol is slightly elevated, I guess from the anastrozole. I’ll have to work on that as well. I hate to be to personal, but have any of you ladies felt like you have or have actually had a yeast infection on these meds? I don’t think I actually have one but every month I seem to get the feeling I do. It’s very frustrating.
Anyway, I'm off to bed early. I’ve been exhausted all day and took a 2 hour nap. Again, just feeling run down. I hope everyone is doing as well as can be expected. Thinking of all you ladies
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Katyblu, my experience hasn't been that anything is cumulative, some side effects seem more prevalent than others for me from cycle to cycle. I haven't had much nausea, but I do take my meds at night, so maybe I'm sleeping when it happens? And regarding yeast infection kinds of things, I think my vajayjay has just gone to sleep, there's like nothing going on down there. At all. It has settled down for its long winter's nap.
Rabbit, be as verbose as you want! You've got things to say, say them! I love and appreciate your posts. RK, lolol your window opening story! A few silent puffs, indeed.
Saw first the kisqali and then the ibrance commercials tonight on TV, and they're not bad ads really, but they make me sad, remembering when I wouldn't have paid them the slightest notice. Still super grateful for these meds. But still wish I didn't need them. Ah well. Today was a pretty good day, raining here, and we are cozy and calm at home. Just doing stocking stuffers this year and I feel content to see our stockings hanging from the mantle. Sending out peace from SF.
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Katyblu - I never had nausea on Ibrance but my fatigue was definitely cumulative as well as my slowly lowering RBC. When I was on AC+T for stage 2 I had a strange change in my discharge. It was green (sorry if that’s TMI). Didn’t itch or smell. I can’t remember how my Gyn had me treat it but she said it was probably the chemo throwing off my body chemistry.
Rabbit - your little Whoopi clip still has me laughing.
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(Cross posted with Mel’s Living Room thread)
Update on my MO appointment today: I'll be leaving I/L for Fulvestrant and eventually Verzenio. Liver biopsy and Foundation One testing are in the works for after the new year because of travel plans DH and I have for over Christmas and New Year's. MO didn't mind holding the biopsy until then but Fulvestrant will start next week just so I'm back on a hopefully effective treatment sooner. Both drugs are subject to change if the biopsy rules them out.
I'm feeling better now that I know the plan. MO was very empathetic when she came into the room. She said, "We have to talk about your MRI, damn it!" I hope that didn't offend anyone.
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Rosie- Sent you a response on Mel's Thread.
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Rosie24 - I was on Fulvestrant with my Ibrance and now I’m on Verzenio/anestrozole. This is really the only thread I’m active on (maybe an occasional bone mets thread post) so please reach out to me if you have any questions onyour new treatment. I’m only a personal message away. Good luck with your new meds and have a wonderful Christmas. 🎄
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RK, thanks so much! I’m pretty sure I’ll be messaging you. 🌺
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Thanks ladies ❤️
Rosie, seems your MO has a good plan in hand, best of luck.
Rabbit. If I haven’t told you already you know how to lift up low mood to smile then laugh, I enjoy reading your posts girl you are awesome 😂
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SF and RK - Thanks! I hope that the increased nausea is just during this cycle. Don’t think I could deal with it forever. I think we’re all good with TMI here lol! I have an appointment next month with OB/GYN so hopefully I can talk to them about this feeling. And SF, yeah I’m like the Sahara. It sucks.
Rosie - Sounds like your MO has a good plan for the interim. And I’m glad you’re still getting your holiday travels. I wish you all the best and hope you’ll still check in with us here frequently.
Rabbit - I always look forward to your posts. You help me through a variety of emotions. And your verbosity always brings a smile to my face. Keep it up if you want 😊
I feel a bit better today. Only mild nausea and I was able to eat dinner. I went to work out for the first time in a few weeks and realized how much strength I’ve lost so quickly. And how tight all my muscles are. I need to do a lot of stretching and some yoga. And I need to slowly build my strength again
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Rosie24 - that sounds like a great plan and I am so happy you can keep your travel plans. Fulvestrant is easier for me to tolerate compared to femara as far as joint pain. The shots don't bother me except that it just takes longer for the appts. I do appreciate your supportive comments last week.
Snow-drop, SF Cakes and all who posted about RRabbit , Rabbit - keep your posts long and funny! We adore you and your writing:)
Katy-blu, I have not experienced the nausea but hoping you find that it goes away. I felt like in the beginning each month was a little different as far as side effects each month but now on 75 mg I have no side effects (besides slight constipation) from Ibrance. There is the Sahara situation but I give the credit to fulvestrant. Cancer and cancer treatment is NOT a sexy-mood enhancer, in my experience!
RK2020 - your view is beautiful, I love your "airing out the room" story!
SF-Cakes - I feel you, sister. I dislike those commercials and never noticed them until I was dx. Heck, my family /friends who know I am on Ibrance can't BELIEVE how often the commercials run. At least they are featuring younger, active "patients". ALL THE TIME they are on TV or the radio. Even on my Holiday music radio station, no escaping! I am thankful for them every day but don't need the reminders!
Last Wednesday (scan day) was also my office party. We have not had one since 2019 due to Covid. Had to show proof of vaccine at the door. It was a dress up "cocktail" party and in Seattle. Big venue, all vaccinated and I felt safe as far as covid is concerned. I ended up dancing in heels for over an hour! Friday, I woke up with a pulled muscle in my back - I really should know better than to dance in heels since I haven't worn them in at least 2 years. Had my oncologist appt yesterday along with the blood test and fulvestrant. Blood work fine (anc .97) and shot was fine, too.
I am not ready for Christmas, but am getting there. We are having a much smaller scale celebration since we will be traveling. But, it will be fun and I am looking forward to some time off of work and time with family.
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Ibrance commercials -- does anyone else wonder WHY Pfizer is producing ads for something that requires a prescription for a serious condition ? It's not like we see people running through a field of flowers and say "I gotta get me some of that!" And wonder how much of the $14,000 per month goes to the ad budget ?
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