Ibrance (Palbociclib)
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Cowgal, AnnTop, BlueGirlRedState, Shetland Pony - thank you for your thoughts about Chinese medicine. I did more online research this weekend and found that several of the herbs are specifically listed to avoid when taking an AI like Letrozole. That is disappointing. I also read the same about Reishi mushrooms (which is in the extract I take). Lemons and oranges! I don’t eat a lot of lemons and oranges currently, but I didn’t know to avoid them. Sigh!
I meditate irregularly so I need to work on that. I have heard of qigong so I should look into it. After my next scan, I will see about a second opinion someplace else.
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Good evening ladies! I started my first Ibrance cycle on Friday and so far so good. I’m not noticing any side effects as of yet aside from some headaches. My MO told me those could increase due to the Arimidex if I was prone to them before. The only other thing I’ve noticed is an increase in pain, mostly aching in my ribs. Is this something that happens with Ibrance? Or am I just noticing the pain more because I’m paying more attention? Thanks
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Katyblu I think we all had aching in the ribs. It was explained to me that the medicine is working. My SE’s were minimal in the beginning except for fatigue. I didn’t have the same SE’s from month to month either. What dose did you start on? I’m pretty sure they’ll check your blood after the first 2 weeks to see what’s going on internally. Take it easy and keep doing what you feel comfortable doing.
Tanya
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Pocket duty for Aprilgirl tomorrow, I believe your scans are tomorrow? Hope you've had a good vacation, too!
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SFCakes - thanks for remembering! Yep, scans in the early am. My vacation was really, really fun! With covid restrictions, we have paused traveling to Europe to visit Italy and a couple other countries on my bucket list. We decided to focus our vacations (when we aren't visiting our elderly parents) to visit states I haven't been to, hoping to visit all 50 states. We visited Vermont, New Hampshire and Maine which were all states I have not visited and then met up with friends in Boston for 6 days on Nantucket. It was really fun, we had great weather (sunny and not humid - one day of rain on Nantucket). We were gone for a total of 10 days, which was enough time for me to feel refreshed! My onc was supportive of my travel plans as long as I didn't travel to states with low vaccination rates and high current covid cases. The house we stayed in was built in 1760 and was just beautiful. I have lived most of my life on the west coast so 1760 seems really old to me! We returned home on Monday afternoon so have been busy catching up at work etc.
GoKale - I have thought about chinese medicine but am leary of trying anything new because I have responded well so far to Ibrance/faslodex.
Katyblu - hang in there. I remember my first few weeks on Ibrance lying in bed and waiting to see if I felt side effects. Hoping your rib pain will go away and it's a sign that the meds are working.
I need to read back on this thread and catch up! Hope everyone is doing ok.
I do have scananxiety but my appt is really early, which hopefully will help me not feel as anxious. I am getting scans every 3 months and wow the 3 months go by quickly. I know I have posted about this before and all of you get this - I look forward to getting the scan over with so I have a "flashing yellow" light for the next 3 months....or know I need to pivot treatment.
Que the FooFighters music, my scan music of choice!
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Aprilgirl and Tanya, thank you so much for taking the time to give me a boost! April, I hope your scans go well
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April - In your pocket for your scan! Nice that you enjoyed a nice vacation. I know what you mean about the "caution" light 'til the next one.
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Hello ladies!
Well, for me its been a combination of funkytown and being a total and utter goofball with my beloved. My stomach is sore from being tickled so much. He does it everytime I say something silly, apparently I've said and done a lot of silly things even tho much of the time emotionally lately I've felt lower than the fungus that feeds on pond scum. I snap outta it of course, but still, its pretty awful to feel like fungus, I gotta say.
Anywho, in other news. Beloved got hit by a car last week. He's ok, just some nasty gashes on his forearms and knees. Some young kid wasn't watching as Beloved had his flashers on his truck going and was doing something to secure something along side his rig with proper barriers in place and next thing Beloved knew he was thrown forward. Cop said the young kid got a very big lesson in learning to watch what he was doing and lucky for him Beloved only walked away with minor injuries. Still shook me up tho. Beloved said something I think only you ladies would understand. He said it happened so fast he hadn't even realized he was hit and it was surreal. He said to me, I don't want you going anytime soon. But I hope that whenever this damn disease takes you it is quick and instantaneous like that. I agreed and we hugged and then I told him I will Instantaneously kicked his butt if he scares me like that again!
I think I've mentioned this before but as far as navigating the Ibrance bowel odyssey. One of 2 things will happen. Either you will have found nostalgia recalling the Dippin' Dot's mall kiosk of ice cream that looks like a bunch of mini frosty frozen rocks and feel inside like an overstuffed vacuum cleaner bag. OR you will flashback to willy wonka and the chocolate factory and the chocolate waterfall as you have a nervous breakdown inside a techno tunnel screaming "And there certainly isn't any sign that it is slowingggggg!!" as the volley's lift your feet off the floor. Sometimes it alternates between the two. They don't call it the Ibrance dance for nothing when your in a store and doing the electric slide down aisles to get to the bathroom with the cheeks not on your face clenched because your bowels decided to pull a fast one on you. They say keeping regular can prevent this but alas, I am not the greatest these days with remembering those minor details.
In lighter news (aren't we all lighter after reading the above paragraph). I got to watch a momma squirrel move her 3 babies to a new nest. They looked like little gremlin balls in her mouth with tails. Moved each one to the new nest one at a time. She didn't seem to mind me watching her doing it. Her biggest obstacle is that she was doing this in the rain. A pretty good downpour too. She took a mini bath in between each one. Was a treasure to watch. Babies looked to be about 4 weeks old.
MO appt was today. My vampire has sucked (eh) in terms of Phlebotomy technique and charm the last 3 times. 2 different vampires. Why can't I have a hot Phlebotomist *channeling Snow Drop*? Why do I end up sometimes with the pissy one who's first words are in essence "Do you have crappy veins?". Ugh. I'm not very patient with nurses these days. Tired of getting my blood pressure taken, temperature taken, pulse/oxygen level taken along with 4 to 5 vials of blood. Every dang month. I emoted to Beloved today during the appt, "Can't we skip all this and I just talk to the Dr?". When I get home I feel bad I was ornery with the nurse, I'm just tired of all this, you know? Even find myself saying a prayer a night. "Please God, bless that nurse having to deal with me, I just hate having to do this all time, it wears on me"
Katy, I noticed an increase in pain when first starting Ibrance. I have extensive mets in the bones like you and prior to starting Ibrance I was on the fast decline with my ability to walk as my gait was being effected. It took about 2 to 3 months (cycles 2 and 3) but that started getting better, by month 6 (cycle 6) the pain had dropped dramatically and my walking improved. The timing of when improvement can be seen varies but try to hang in there, you will feel a difference soon. Symptoms really became visible for me by end of week 2 with the Ibrance. But promise, still much much milder than chemo.You'll be through your first cycle in no time!
And last but not least. Tomorrow is Aprilgirl's scans. Now I have been thinking, how can I mark April's scans...How can I immoralize myself on her scans like I did Cakes...Aprilgirl, behold the undiscovered truth that not only are deer prancing through woods and forrests and lapping up water as they put their little deer lips to a nearby pond. They have a very hidden talent. Deer are in fact secretly taking Ibrance and blowing it up all around them as evidenced by this video. Pocket duty for you tomorrow!
Your vacation sounded wonderful! :)Yep, understand completely. Here's for another 3 month flashing yellow light. Cakes, RK, KBL, et all - thank you
You all understand. I've discovered so many of us carry different things. Things we've grown up with, things that surface when cancer does. Amazingly some of those things don't get better when you think they should. Its there we kinda have to learn to wrestle with those things too, on top of cancer. It's alot sometimes, but I feel better I can come on here and vent. Between you guys, Beloved and my God, I'm hanging in there. Will get woken up either Friday or Monday morning with TM numbers. If TMs are stable wait til Nov. to scan. If not will be pushed up to Oct.Deep breaths - free from the MO for another month. Finishing up Cycle 22 at 100mg. Can't believe I'll be saying Cycle 23 soon.
I haven't replied in detail like I wanted to to everybody with this post, but will post again soon to wrap up. 0 -
Follow up! I got too chatty and missed people.KBL - I know you've been going through some challenges/concerns with progression etc. Forgive me that I haven't been able to digest all that's going on, but I sincerely hope that you get some answers soon and that your fears aren't realized. I recognize you have the added burden of imaging not exactly telling you the full picture and so I just wanted you to know your in my thoughts.
Candy - I'm hoping your new dancing partner 'Lindy' is treating you better side effect wise. Maybe it just takes a bit to work out in agreeing with your body. I know some on Piqray had to go through a couple rough cycles before things got better. HOWEVER never be afraid to let your MO know if the new dance partner isn't working for you QOL wise. Is Lynparza adjustable? It's pills right? I've been thinking of you as you settle/adjust to all you've been through this past month or so. You lady, deserve mad props for keeping it together through it all.
RK - I'm thinking of you, laying under that giant standing mixer (Tho I only got as far as planning, I got to see the machine, I remarked to the techs I thought it looked like a giant kitchen appliance). Can't wait for you to say your on the other side.
Ann - welcome welcome! You read all 800+ pages?! Wow! Thank you for the shout out *blush*
Lemon - our other newbie, how's it going?
Cakes - what an awful thing to say to you Cakes. What do they say? You can't pick your family, but you CAN pick your friends? Consider me your adopted lil sis
Snowdrop - what you were describing sounded a bit like cellulitis to me. Red, hot, under the skin. Definitely if that isn't going away tell your MO or get to ER. I giggled at the hot doc comment.
Sunshine, BevJen, Ciaci, Holly, Lee, Spookie, Sondra, Karen, Bluegirl, Cure-ious etc. Hope your doing well. Trying to remember some of the others who don't post as often and want to encourage both them and lurkers to say hi
Jack5ie, hoping your doing okay, been quiet a long time. Your missed.
I truthfully wouldn't mind seeing some new Pat artwork, just saying
I'm guessing we've all been in funkytown as of late, threads been quieter than normal - lets be funky together - its been rough on the boards lately and I do not deny I've internalized it - I'm sure you all have too.
PS: I was pretty resistant to the new packaging - new tablets instead of capsules etc. But I've embraced it because I can look on the tab to see if I took my pill that day. Helps keep the days of the week straight too. Eek, that's bad. Sometimes getting through a day looks like this, but you manage
Aprilgirl, pocket duty for you today!!
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Rabbit, thank you so much. I appreciate that so much.
I am changing meds, so hopefully I'm making the right decision. I've been off meds for almost two weeks, and my poor husband has been dealing with one cranky person. I don't know if it's because I don't feel great or because my body is trying to adjust. I'm supposed to start Xeloda and Faslodex on Monday. Very nervous, but think I've made the right choice. Just waiting on insurance approval.
I know there are a lot of us who don't feel well right now. I hope things start improving for everyone.
I am thinking of you as well. It is quite hard to keep up with what's happening with everyone. I'm trying to keep my head in the game.
Hugs, and thank you, again.
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Thanks Rabbit for thinking of me. I am still trying to adjust to Lynparza. Been almost 2 weeks so far. Nausea and fatigue are the biggies. I tried Zofran once-- not much help. Tried Queezy Drops-- hard candy for cancer patients, uses essential oils. Not much help. More just using lemon lime soda, crackers, soups, cereal-- mild foods and multiple snacking versus a big meal. I see my MO on Monday for labs, Xgeva, and check in. I hope my labs are ok. Lynparza can effect white counts (which I dealt with with Ibrance), but it can effect red counts and platelets too. Yes, they are pills. And we can lower the dose if needed. They start you on the highest dose of 600mg per day, like with starting Ibrance at 125mg. So I may have to go down on the mg.
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It has been quiet here lately. Scary about your DH rabbit. Mine got T-Boned a few years ago. The seatbelt held him from going out the other side, but really messed with the thoracic spine.
As for the new pills and packaging, I didn’t like having that out on the counter. And now, with my kitten who counter surfs, I just pop all out and put in my weekly pill keeper.
I’m ready for some cooler, dryer weather. Another month.
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Rabbit, I just read back. I’m so sorry about your beloved. Goodness. That’s the last thing you needed. I hope you can pull out of your funk soon. I totally feel you on that.
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Rabbit, I'm happy your DH got off with just scrapes. That's very scary. He sounds like a good man.
April, I hope your scans turn out well.
As I mentioned in my first post, I'm that overachiever that managed to get breast and ovarian cancer, even though BRCA-. I saw my OVC oncologist last week, and I'm glad to report that my numbers looked good (CA-125 measurement as well as inflammation markers.) He's also an integrative oncologist, and we had an encouraging chat about the benefits of diet, exercise, and mindfulness changes I implemented about a month ago -- it showed up in the blood work.
This Monday, I went to my BC MO, and it was a bit like "my dog ate my homework." He'd been on vacation, then got breakthrough COVID, so he had an excuse. But thanks to you dancers, I was prepared with a list of questions. He had not communicated to me earlier that my genomic test hadn't worked because there was calcium in the needle biopsy tissue from my sternum met. "So we need to do a new test," I said. "Yes, we can do a liquid biopsy," says he. "Guardant 360?" to which he replied "yes." So we drew blood on Monday and I'll look forward to the results. Since it captures cancer cells in the blood stream, I hope it will give us more info on the OVC as well as the BC. We then discussed the PARPi (Zejula) and Ibrance. Thanks in part to you, I knew that both affect WBC counts and that I can't take both at the same time -- so it was a decision whether to prophylactically work on preventing an OVC recurrence or getting after the BC recurrence that I know I have. Of course, Ibrance won. So I'm stopping the Zejula for a month and will start dancing in mid-October. Meanwhile, I hope that the anastrazole I started in August is doing me good. It makes me nervous that I've gone 3 months since diagnosis without any treatment beyond an AI.
Candy-678, when I had my issues with platelets upon first starting niraparib/Zejula, I took papaya leaf extract -- it seems to have helped, along with moving to a lower dosage of the PARP. My OVC/integrative MO also recommended RealBuild, a Beljanski product, which also helped. My counts bounced back fairly quickly.
Re Traditional Chinese medicine, I have my first medical qigong session tomorrow. Another step to decreasing inflammation and strengthening the immune system. I'm pretty rational minded, but I'm curious about the therapy.
Prayers for good outcomes for all,
Ann
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Thank you all for pocket duty, it means so much to mean that I have people in my life that understand the scananxiety and nerves associated with these events. Scan results are in and the news is good, no evidence of active disease and "unremarkable" across the board. I am relieved and feel like I have the flashing yellow light to make some plans for the next 3 months.
Catchin' up from my 12 days absence: Plenty of room at the HOTEL CALIFORNIA - oh my, Rabbit - that is a great comparison (Ibrance to Hotel California)
Rabbit - as many have offered, I am happy to be a bonus mom or big sister with all on here who cherish you. You are funny, thoughtful and so kind and I appreciate you sharing the good things along with the painful. I can NOT believe that your beloved was hit by a car last week. I'm sure you were shook up. I sure hope the driver learned a lesson and will be more careful. UGH. This is the last thing we need, right? I LOVE the deer fart video as well as the Auntie Mame clip - you are a riot! I am sorry about your blood draw and the how fast the monthly appts come up. It is a lot to deal with. I don't mind the blood draw but the wait for the doctor appt and then the fulvestrant injection really drags out the day. My scheduler tries to book them all lined up but sometimes that injection appt is out a couple of hours and it drives me bonkers - my cancer center is not close to anything fun and I have a bit of a commute so have to sit there. Last month I did the blood draw and injection and then drove home and had a zoom appt with the doctor later in the day, was a nice break from having to sit there for so long.
SF-Cakes - I am with Rabbit, we can't pick our family but we can pick our friends and who we share our lives with. I appreciate your humor and kindness as well.
RK2020 - I am so happy that you found a new MO that you like that is reading your scans in a timely manner and feels like a good fit. I hope the radiation works wonders and is easy to tolerate. Please keep posting on here!
KBL - Thankful that you have requested a change of treatment. It is terrifying that ILC is so sneaky and I know it's exhausting to have to be so on top of your doctors. Good for you - I have learned a lot about advocating for myself from you and others on these boards.
Candy - I am sorry that lymparza has started off rough. Hope it gets better or they have some meds or different dosage that will help.
Shetland Pony - I love the term "the new weird" and will keep that one handy. We live in a surreal world, this cancerland.
SondraF - how's it going? Pop in and say hello!
Snowdrop, Rosie24, RosieRed, PatMc, Ciaci, Lee64, SerenityStat, Piper, Cure-ious, Jsniffs, GoKale, LizLemon, Katyblu, Tanya_D, Spookiesmom - hope you are all doing well. It has been quiet around here and I was thinking it was due to the end of summer life is busy but if it is a case of funkytown, know you are not alone and I always feel better once I have been messaging with you all.
AnnTop - welcome. This is a wonderful group of women! I am sorry for all that you have gone through with breast and ovarian cancer. I am impressed that you read through this thread but it is indeed chock full of helpful info. Not all of us have the same side effects but I have learned so much about Ibrance, genomic testing, other treatments etc and feel that all the info I learn on here has helped me with my treatment and with my oncologist.
Hope everyone is having a good day.
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Aprilgirl1, I’m so glad your scan was great. Yayyy!
Thank you for your kind words. It means a lot that we can help others with our experiences. Advocating for ourselves is very important. I will be back to give an update.
I have had pretty low energy lately, so please forgive me if I’m forgetting anyone. I truly care about all of you.
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Great news, Aprilgirl!! 😊
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aprilgirl - Fantastic! Your vacation sounded wonderful. I had 3 months off Ibrance due to a rash. Somehow my TMs remained stable. Just finished cycle 17 and glad I didn't experience mouth sores like the first time.
Hope everyone had a good day today.
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Aprilgirl, I'm dancing the Cuban Pete at your news
I admit to being on edge when one of us ladies goes in for scans, its good to let out a deep breath of relief along side ya'll when things come back 'unremarkable' - onward!!
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Rabbit, thanks for your input, you are correct about diagnosis Dr. Rabbit:) I was told I caught it about in time. But I had to be off ibrance again... I am sorry about your DH accident, these careless kids 😡
April, great news. I am glad you had a great vacation in MA, I had a nice time in MA few months before I diagnosed, I like it there.
Candy, my RBC and platelets as well as other counts already affected by ibrance.
KBL, good luck with your new treatments.
I’ve been in low energy/ mood... dancing with the stars starts next week, I am pretty excited, the show always lifts up my mood!!!!
Hello everyone 👋
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Good for you, Aprilgirl! Here's to many more years of good scans!
Love from PatGMc
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Good for you, Aprilgirl! Here's to many more years of good scans!
Love from PatGMc
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Aprilgirl- Woohoo on the scan results !!!
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Aprilgirl, hurrah! Wonderful news. And you, unlike your scan results, are QUITE remarkable.
Rabbit, holy crap, your DH getting hit by a car, so glad he is okay. Whew, how scary. Also hoping your TMs stay stable for you. Thank you for sharing the beauty of nature with us all, it does my heart good to know that I have something in common with lovely deer.
Ah, the New Weird... I've also had some recent visits to funkytown, my perception of my life's course has changed so dramatically, it still shocks me at times. I read so much research at first, but now need to back away from all the statistics (which are not heartwarming, to say the least), and try to stay sort of grounded in appreciation for each lovely, quiet day. But I can still burst into tears really fast - hmmm, I would be a great dramatic actress right now. One of my friends wants to know "what's wrong" when I let her know I'm feeling a bit down and, sigh, I don't want to go into it. I genuinely don't want her to have to know what it feels like to carry this weight around. I find it very, very difficult to talk about MBC with anyone other than all of you here. I joined a virtual live MBC support group, and it is so far very practical, advice-giving, but not very emotionally supportive. Perhaps this will change with time.
I agree with the Not Today sentiment. I had a button made, was originally inspired from Game of Thrones, and I wear it to my medical appointments. Love it when the nurses know what it's from! ❤
Thinking of you all, as I'm here at home, drinking delicious tea and waiting for my new books to be delivered in today's mail.
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Thanks all for the cheers - I agree with Rabbit, when any of us have a scan I hold my breath a bit until we get results.....
SerenityStat - so happy to hear your TM stayed stable while you had a 3 month break from Ibrance.
RRabbit - thank you for the Cuban Pete dance, onward indeed!
SFcakes - I love that pin! I really, really try to not read stats but sometimes I am like a moth to a flame. Our "non cancerland" friends don't get it. Lean on us - we are with you! I have thought about finding a local MBC support group but it would be zoom. I did join the BC.org zoom (on Mondays) once - it is not at a great time of day for my job, but it was enjoyable.
Snowdrop - I love to have a good show to look forward to!
Hope all have a good weekend.
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Rabbit - sorry your DH was hit by a car, but glad that he came out with only a few scrapes.
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Lynparza update-----
2 1/2 weeks on Lynparza now. Still trouble with nausea and fatigue. Went to MO office visit and had labs done today. WBC and ANC low, but actually better than with Ibrance. WBC 2.7--- I usually ran between 1.0-2.0 with Ibrance. ANC 1.9 (1900)--- ran 0.8 (800) with Ibrance. Hgb 10,2--- was 10.6 before. No change in platelets. Kidney and liver numbers look good. Discussed the nausea with MO. Can use Zofran more--- I hesitate due to my chronic constipation already. She mentioned can lower dose. I said no, not yet. See if I adjust to it. To do more labs and see MO again in 1 month. The full story will be if the scans look better---- no scan appointment scheduled yet.
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Candy, Good news on the better counts. I don't know much about Lynparza— do the fatigue and nausea tend to settle down for others? I did feel like some initial side effects from Ibrance did, but then other things showed up, for me at least. Your plan to give the starting dosage some time makes sense, and it's good to know there's the option to reduce it. Hoping for your side effects to improve
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Rabbit - seriously? Hit by a car? Oh my. I’m glad it wasn’t worse.
Candy - it sounds like you’ve got a good strategy in place and unfortunately (very unfortunately) you have to just hang tough for a bit and see how it goes. Gosh, I HATE what this disease makes us go through. It’s SO unfair. I’m grateful for all the wonderful medical science and staff but some days, I just want to crawl in a hole and forget this is happening. Just let nature take its course. Of course, I snap out of it and carry on. Sorry but I’m having one of those funked up episodes at the moment.
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Rosie- I read that the nausea can abate after a month or 2. Yes, Ibrance side effects came and went. Mouth sores some months and not other months for example. The "Ibrance Dance". I don't know about Lynparza. But, I did read one person was 6 months in and had a hemoglobin level that dropped to 6.4 and she had to have her first transfusion. Why did it do that after 6 months?? I don't know. So I guess I will wait and see what the "Lynparza Lindy" has in store for me.
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