Ibrance (Palbociclib)
Comments
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checka, work is scary. I work with over 100 different 2-7 year olds a week. Knowing my area is very highly vaccinated, and masks are normal for everyone helps. (kids here are masked, even the 3 year olds have no problem with it if the parents fit them properly) But add DH manages a restaurant, a college kid & a young adult in and out, plus 11yr old, and public transit. Even though we "don't do anything", just living feels risky!
Katyblu thanks!!! Once the drains were out, recovery sped up! Still can't do any housework, lol.
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I'm back from vacation, happy to tell you I had a wonderful time ! Went to Maui with 3 friends (no husbands ) and laughed, snorkeled, ate at great restaurants and just had fun. Hawaii is pretty strict with Covid proof of vaccines or negative test prior to arriving and I felt safe while I was there as far as Covid was concerned. I've been "off line" here for a bit and need to catch up !
SF-Cakes - awesome news on your stable Mabel scans !
B-A-P- wonderful news on your scans and I am so happy they your doctors were so happily surprised they triple checked the results. I know you have concerns about the pseudocirrhosis and I'm hoping you get reassurance about that.RK2020- keep us posted on your next meeting and the plan. I know you have a good team and caught whatever changes are there early.
Bailey5- I have a 22 year old son and a 24 year old daughter. I'm not in Calif but happy to pm or chat . Sounds like you have been on Ibrance since 2017, so that is good! I can imagine it's challenging to be new and make new friends while in this "living with stage IV" reality.
Maaki- thanks for posting . Great to know that you are doing well on kisquali after verzenio . I appreciate hearing about this !AnnTop - congrats on your good scans !
Spookiesmom - in your pocket for scans and cataract surgery !
Chico and Ciaci- I am always so happy to see your posts, 4 plus years on Ibrance ! Awesome !!
Dance mom - fantastic news that you had surgery and it showed that Ibrance was working.
Checka, I'm sorry you have joined us but as you have seen this is a fabulous group of women who understand the realities of stage IV and living with it . I have been on Ibrance for 2 years and 3 months. I have been on 75 mg for over a year - two dose reductions due to low white blood cell counts . I have minimal side effects from Ibrance and am also on fulvestrant. I am still working full time by choice. I had a lot of worry about working and how I would feel on these meds (plus the entire stage iv reality gut punch). Once i saw the scan results that the meds were working I felt better. Let us know when you have questions. Learning to LIVE with Stage IV disease is a real humdinger (or mind f@#k to be honest, but I don't want to shock y'all).
Yellow danger chemotherapy bags: for some weird reason I am keeping all of mine....might have to make some kind of art with them ! Have at least 26 now
Hope everyone is doing ok . We all miss Rabbit fiercely. SF-Cakes, please post a photo of your rabbit when you get it ! I think I will look for one. Here's a photo of a Maui sunset that made me think of Samantha aka RRabbit.
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Nice pic!!
I’ve been taking the B12 about a week now. I think it’s helping with the fatigue. I never was sleepy, just tired. cataract surgery was ok. I really was scared with this. You don’t need boobs, but messing around with my eyes, ewwww
I didn’t take this, is from my town, looking over St Joesph Sound towards Clearwater Beach.0 -
Beautiful, Spookiesmom. I don’t live far from Clearwater. Only see the sunset a few times a year. Just don’t go to the beach unless I’m in a boat. Glad surgery was okay. My B12 is normal. I took some once, and my B12 was too high.
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Thanks for sharing the. Beautiful pictures. It’s rainy and chilly here but nice to feel the cool weather for a change.
Tany
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Checka, best wishes as you start your Ibrance today. I'm in cycle 4 -- started mid-October 2021 at the 100mg dose. It's impacted my white blood cell counts, but not enough to cause a concern about the dosage, and I too have seen a gassy side effect, plus I have the opposite problem to constipation. But otherwise, I've had little trouble, certainly not enough to interfere with my normal activities and routine.
However, since my MBC diagnosis in July 2021, I've been working hard on boosting my immune system (diet, exercise, stress management, social support, etc.), which likely has limited my side effects. My gynecological oncologist, who is into integrative medicine, steered me to a book, "Anti-Cancer Living," which I recommend. It's by Dr. Lorenzo Cohen at MD Anderson and draws from the institute's research into how lifestyle can affect breast cancer. I highly recommend it. Way back on an earlier page, someone in this group recommended a book, "Radical Remission," by another PhD who works with cancer patients, I read it shortly after my diagnosis, and it gave me lots of hope. It too has suggestions on lifestyle actions that can boost the effectiveness of conventional treatment.
Ciaci, in your pocket for your February 7 scans. And thinking of everyone else as well.
Ann
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Fabulous pictures ladies.
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yellow hazmat bags for Ibrance? Mine comes in a hige box with gel packs and foam insulation in summer and a little tiny envelope/ bag in winter.
Wow, those sunsets are gorgeous!
Aprilgirl I'm impressed you could go back and acknowledge so many! Actually, everytime I see similar on a thread, I hope people don't think I am ignoring them. If I try and look back to remind myself who said what, my comments disappear. And no way can I remember🤣
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Spookiesmom, glad your cataract surgery went okay, and that photo, Wow! It's so gorgeous it almost looks fake, like how can it be so colorful. Would love to see that in person, you live in a beautiful part of the world.
Aprilgirl, I'm so glad you had a wonderful time in Hawaii with friends! And your photo, stunningly beautiful, too. You know I love the Stable Mable comment. ❤
Thinking of everyone with upcoming scans and/or MO appointments, possible treatment changes. Here for pocket duty for you all.
My ANC was too low to start next cycle, interesting timing after getting good scan results, so am waiting an extra few days. Glad the oncology pharmacists are on top of this and communicate quickly with me, this MBC seems to take a village, with all the doctors, technicians, marijuana dispensaries (lol), etc.
My Auntie stopped by for a "layover" overnight visit on her way to my Mum's house, and we had a good time eating sandwiches and playing Upwords. So great to visit, gave me such an emotional boost. Oh, if we could all hang out together and eat, laugh, cry, play games, look at fabulous sunsets...I would love that!
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spookiesmom - that is such a gorgeous photo ! Wow ! Happy to hear the cataract surgery went well.
Dancemom, I posted on my phone but had the thread open on my laptop . I'm sure I missed someone but you are all so important to me ! No one understands what we are going through as much as those on here . My biggest struggles besides losing members we love like Rabbit is the reality of living with stage IV and the unknowns. It is not an experience anyone can relate to unless they are in it. Here's a photo of the bags my meds come in :
I have 26 of these and think I should make some kind of skirt or poncho ? We have a "Trashion " fashion show in my community - could be a prize winner:) Edited to add: SF-Cakes, so happy you were able to see your Auntie! Time with family is so precious! I, too wish we could all hang out and laugh, cry and play games (perhaps drink some wine?!). I would love that, too!
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Ibrance on hold....I got my second round of Faslodex today, but holding off on the Ibrance because my DH and younger son both have Covid ;/ (I'm pretty sure they're gonna be fine, just isolating, resting, riding it out) so I asked to wait to start the Ibrance until we're in the clear and that seemed fine with my Onc.
Thanks again for welcoming me so warmly- I appreciate that some of you reply to each and every person and some of you don't or can't.
Dancemom, no housework until you're good and ready! Some of my treatments/procedures have really helped me get time for myself and allowed me to step back and let people do for me, which I find is a silver lining.
Aprilgirl1, I LOVE the idea of making a poncho for the trashion show. it's hilarious, revealing, raw, and maybe even functional being in the great PNW! I'm planning a trip to Maui in March with my husband and teenage boys. REALLY looking forward to it, such a treat. Plan on snorkling- lots off the beaches but did you take a boat to go snorkel? Any other inside tips are welcome! Good Sushi places? Must sees?
It helps to have something to look forward to doesn't it?
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Checka, I agree completely that a poncho would be hilarious, revealing and raw up here in the North Kingdom (old game of thrones reference). I have tons to share about Maui. I was on vacation with 3 good friends who live in Portland! I lived in Portland from 1993-2006 and although I am happy up here in the Seattle area, I left my heart in Pdx. We snorkeled every day in Kapalua Bay just steps from the resort. I will send you a PM with some great restaurants that my friend reserved a month in advance. My Portland friends had their flight canceled a few days prior to departure (Alaska Airlines) and ended up rebooking with Alaska through Seatac on the way out and Alaska airlines booked them on a Hawaiian Airline flight for the return. I am a big fan of Alaska Airlines and am not sure why Pdx flights were canceled (both directions). I felt really safe with the covid protocol on Maui and Hawaii in general. I agree, it really helps me to have a trip or something to look forward to and plan.
I am sorry your husband and kids have covid - hopefully you will be fine. I know quite a few people who didn't get it when spouses got it.
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AnnTop (my nickname all growing up was Carrot Top so that's what your name reminds me of
- I'm glad you brought up lifestyle, diet, exercise, immune boosting, and integrative care. I believe those are somethings I can do to help myself and it takes work but it's empowering too. I feel blessed that I have a naturopath on my care team who specializes in Oncology. She's my neighbor and friend, but a professional who does her research to help guide me safely and lovingly. One supplement I've been taking is mushroom (turkey tail or a blend) powder for immune support- make it into a tea. The medicines our oncologists provide are truly amazing, but then also hard on us. I'll check out Anti-Cancer living! I listened to Radical Remission on audio book- very inspiring for sure, even if the cases are rare. It's good to find hope when we also can feel hopeless at times. aprilgirl1, thanks for the Maui tips! How fun for you to take a girls trip and with fellow Portlanders! I've been in Portland since 2000- love it but also kinda ready for a change... Spring break will be a welcome change! So on Maui we're staying down in Kihei but I hear there's snorkling everywhere. It's on my list, making it happen.
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aprilgirl, I see a big Cinderella dress!
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Aprilsgirl - My Ibrance doesn't come in a hazard bag like yours but those are great and would have so many uses! I can see someone who works in an office where others steal food from the refrigerator might pass up the sandwich and brownies bagged in these!
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Cowgirl - that would be perfect for an office refrigerator! haha. My husband thinks it's funny that I am saving them but I know I will have a use for them at some point.
Dancemom - I would LOVE to stay on Ibrance for years and collect enough for a big Cinderella dress! My daughter has a BFA in dance so I love your choice for a name on here:)
I get my Ibrance from Accredo (required by our insurance). It is fedexed and I have never had it sent with gel packs in the summer but it doesn't get really hot in Seattle (except for last year we had some crazy hot weather).
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aprilgirl1, mine used to come from Acreedo too. I never got it in those bags. I get my Xeloda now in those bags.
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I get mine from Accredo too. Maybe the bags are a Washington state law. I live in Oklahoma and never have received one of those bags. They never put gel packs in my shipments either and it does get hot here in the summer
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So Funny about how your Ibrance is delivered. I pick mine up from the pharmacy and it's just in a box with blister packs. No yellow Hazard bags or anything lol .
Checka- Hope you escape covid but definitely a good Idea to hold off until you're in the clear. I would have done the same thing. I've been doing a 3/2 schedule which has been working for me , just so I can avoid super super Low ANC and getting an infection again, thus having to expose myself in the hospital. No thanks. Just had my bloodwork done to see if I'm a go for tmr, but it was fine to start last week so I imagine it's only better now. With having an extra week I was able to get my covid booster while I had neutrophils. Finally coming around from that. What a rough go. Better than having covid I imagine.
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I just about choked when I read cowgal's comment about putting your lunch in the hazard bags. Too funny. My Ibrance comes from Ingenio Rx. I usually have it shipped to the local CVS pharmacy. It's too much of a pain having it shipped here to the house. I've tried it twice. The first time, UPS tossed it on the front porch without ringing the doorbell. It was a hot day and it was sitting in the sun.
The second time, my DH wanted to take me to lunch, but I didn't want to go because I was waiting for the UPS. It's just easier to use the drive-through CVS pick up. Sometimes it comes in the bigger box with three 1-week supply packets, and sometimes it's just the 3 packages. Whatever. As long as I get it, right?
Carol
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Can't wait to see the Hazard Bag Dress!! I pick up my Ibrance at the pharmacy, too, it comes in that sealed box with the three weekly blister packs inside. I'm going to ask for a hazard bag next time...I posted this in another thread, sharing here, too: I think we really need a better, more accurate name for the side effect of fatigue, which at times can feel unreal, like where did my energy go. Perhaps exhaustimented? Fatigosaurus?
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a very old screen shot.0 -
haha what about Fatigumania? Love the hazard dress idea. My 3 month supply of Ibrance comes in three bottles inside a plain ziplock bag which is very boring. I’m on a trial so I pick it up at Dana Farber. I would save the hazard bags to contribute to the Cinderella dress if I got them. Love the pictures of Hawaii and Florida. It’s been below zero for several days here. Im ready for warm weather! I hope everyone is doing well. You’re all in my thoughts
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Mine are delivered via Accredo too, also in the yellow hazmat bag. quite a shocker to open that for the first time. I am happy to wait to begin-probably in two weeks; so far Covid free! I had a PCR test done Wednesday when I had my faslodex and blood work, negatory. So that's cool, one less thing to go through! I love the term exhaustipated. Just the term, not the actual experience of it.
Friday!!!!
(in terms of gel packs and such, ibrance doesn't need to be refrigerated does it? I don't think so but it is in my drawer waiting for me so....thought I'd ask!)
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Checka, I never had mine in the fridge. I think they are supposed to be room temp. Yay on the negative test.
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re fridge: NO. Too cold is worse than too warm. I called asking for very specific info as our apt get HOT in summer. The first month I left the meds in the smallest room with the ac running all hours. A huge waste when I was out of the house for 10 hours!
For transport in hot locations my insurance pharmacy ships it as a perishable item, hence the gell packs. But it shouldn't get too cold, and definitely not for an extended time. I was told too cold (fridge) destabilizes it. It was tested and is stable up to at least 104F, but not for extended periods of time. In summer, I keep it in the coolest room. When I go out, I put it into an insulated bag I keep prepped in the freezer and put that bag in the coolest spot.
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Hello Checka and All,
I start cycle 4 of Ibrance tomorrow at new dose of 100mg. Started at 125mg, but dose was lowered d/t low ANC. I was on Verzenio for 2 yrs 3 mo with stable scans, but my MO urged the switch to Ibrance d/t consistenly low albumin/protein, and persistent GI symptoms. Ibrance has been much easier to tolerate for me, but last scans early January showed one new liver lesion and one liver lesion slightly bigger. My MO did not think treatment change was called for yet, but I will have next scans sooner in 2 months. I asked about possible treatment change options and fulvestrant was mentioned. What is it like to get this injection? Is it given in the arm or buttocks? Is it thick like penicillin? Is it a large volume of fluid? Does it hurt much? Any side effects? WenInWI
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WenInWI - I felt that Fulvestrant was a very effective drug for me. Yes, it hurts more then a typical flu shot pin prick but it’s really not that bad. There are two injections. I warmed them by holding them or one time my nurse put them in a warm towel. The injections are given high on the buttocks. Some women like getting both shots simultaneously but I preferred one at a time so that I can completely relax the side being injected. I would face the chair, put my hands on each arm and put all my weight on the side not being injected. The slower the nurse goes, the better and each shot takes over a minute to inject. I would talk during the shot - about anything - just to get my mind off the shot. Immediately after, I gently massaged the injection site to help disburse the liquid. Then I used the seat heaters on my way home. Many women say it’s good to walk afterwards but I had a 2.5 hr car ride after so I never got to try that. I honestly would not fret. I hate being poked and I got through it no problem. Good luck.
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Thinking of this wonderful group of people, sending you positive thoughts and love. Here are some photos of the new rabbits statues I bought for my yard, to honor our dear Rabbit. Couldn't resist the two sitting on the bench together, for Rabbit and her DH. The solo rabbit is called "Looking At The Moon", which I so love. ❤
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SF-Cakes, that is precious and lovely and brought tears to my eyes.. Thank you for sharing this with us.
Carol
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