Ibrance (Palbociclib)
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SF-Cakes…I love love love the statues. Just perfect. Thank you for sharing.
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SF-Cakes, they are so precious. I wish Rabbit’s husband could see the one with the two together. I love them.
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SF-Cakes - So very very sweet. 🐰💕
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Thank you for info about Ibrance storage.
WeninWI, I think RK has good advice on the fulvestrant. I've only had two rounds but the nurse brought it out to me in a warm towel to try and help me be more comfortable. I am a little sore from the shots. I'm looking forward to only getting them once a month after having them every two weeks initially!
SF, those rabbits (and your garden!) are lovely and I know Rabbit would be so touched.
Bless you all.
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sweet rabbits
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SF-Cakes - The rabbits are a great addition to your lovely garden. ❤️
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SF-Cakes, I LOVE the rabbits! Such a wonderful addition to your garden and I know Rabbit is honored to be there!
WeninWI - RK gave you great advice on Fulvestrant. I have been pretty fortunate, 2 years and 2 months on it and only once did I have discomfort on one side - seemed like the nurse hit a nerve or something? That was early on and I haven't had that experience again, thankfully.
Hope all are doing well - any scans for pocket duty, let us know!
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SF-Cakes - Love the rabbits!
Checka - like April... I had no real issues if the fulvestrant was warmed but there was one time the nurse hit a nerve... ouch! and I flinched moving my whole body. Um, that was not good.
Hi everyone... I lurk.
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SF-Cakes, thanks so much for sharing the photos. They're a lovely tribute to Rabbit. I'll be on the lookout for something similar for my own garden.
Just started my Ibrance off week -- Cycle 5 starts next Tuesday. How fast the time flies!
Ann
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SFCakes the Rabbits definitely touched a chord. I changed my avatar on here to irises because that was her favorite flower. I will look for flower statue for my garden too. I love keeping her memory alive. So many forgotten warriors.
Checka the shot initially were kept refrigerated and were thick and painful. Once they were warmed they were much better and now they don't have to be refrigerated anymore. If you do one cheek at a time the cheek that's getting the injection; stand on tiptoe for balance and take the weight off that way the muscle can relax. I don't get pain anymore but I am sore for a day or two afterward only to the touch or when I lay down.
Tanya
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Tanya, what a beautiful tribute to Rabbit with the irises.
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Tanya, I love your avatar, that is so beautiful. Keeping her memory alive, and yes, all of those who've gone before us. 🌷
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Anyone with scans, results of scans, doctor appointments, etc coming up? I'm here to support you!
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I'm going to keep posting here, I know some folks wanted to take a break from the bco site for a while as it was feeling heavy emotionally with our recent losses. I feel that, too, and also want to stay connected. I love you all!
Weather seems crazypants all over the country, it's forecast to be in the 70s here next week, so I got out in the yard for three hours today, trimming and weeding. Talked to my rabbit statues (last count I have 12), in particular, of course, the one for our dear Rabbit/Samantha.
Since my last scans were stable, my MO said we could wait 6 months before the next one. Which sounds great, but also took me aback slightly. I think I'll talk with her about it at our next appointment, and I'm curious if anyone is waiting that long between scans? It kind of freaks me out slightly to wait that long.
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Waving hello to all
I went to the store (homegoods) and looked at rabbit statues, so funny bc there are an abundance of them right now for Easter. I didn't buy one bc there are a few other stores I'd like to check out.
Not so sunny in FL today kinda damp and dreary. It was nice to get out. I haven't been to home goods since the pandemic.
Take care all.
Tanya
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Cold, snowy weather in Chicago-I enjoy it as long as it doesn't last too long.
SF Cakes-I had scans recently-for the past few years I've gone every 4 months. My MO said we could stretch them out a bit further-I said 6 months? She said how about 5 so that's what we are moving to. I think others on this thread do every 6 months. Maybe they will chime in.
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SF Cakes, you are right the weather has been nuts across the country ! I would be pretty happy with 70 degrees
We have had some sunny days in Seattle but it's been in the high 40's so still pretty cold .I go on Tuesday for my blood work and fulvestrant shot, once again at the small clinic closer to me so I won't see my oncologist or her NP.I will have scans on March 3rd at the large cancer center in Seattle . A few days after the scan I will go in and see my oncologist to review it and have my blood draw / fulvestrant injection. My oncologist still wants me to have quarterly pet/ct scans so every 3 months . I'm ok with that for now but hopefully she can spread them out a bit if I continue to have clear/ stable scans .
Tanya, I love Home Goods! I'll have to look for a rabbit statue next time I'm there.
Hope all are doing well
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Hi KBL
Saw in one of your posts that your spine Mets were undiagonised for 7 years ? how did you know it was 7 years ? how are you doing on Ibrance and Fulvestrant ? I am on the same recently
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MaleBreastC, I was going to tell you about the Ibrance thread, but I see you've found it. Welcome.
Your first question: I was in a car accident in 2013. After having an MRI, the results came back that I had lesions in my spine bone and bone marrow that was suspected metastatic disease. They suggested it was Multiple Myeloma. I had all the tests, and they all came back negative. I went on about my life. I had another MRI in 2015 with the same results. They told me unless bloodwork shows MM, I couldn't start any treatment. Had another MRI in 2016. It had more lesions. Had a bone marrow biopsy. They didn't do it CT guided and happened to pick a piece that was negative. I started having trouble eating and losing a lot of weight in October of 2018. Had an endoscopy in April if 2019. It came back that I had cancer in three parts of my stomach that with testing, came back as breast cancer. It had spread since I hadn't had treatment. It's never been found in my breasts. I am de novo occult. ILC can be very sneaky.
I was on Ibrance and Letrozole. I had reason to believe I was progressing because I started losing weight again and not being able to eat. I asked to switch to Xeloda, and my doc said to do Xeloda and Fulvestrant. That's what I've been on since September. I'm doing well on both. I did pretty well on Ibrance and Letrozole. I do like the fulvestrant much better than the Letrozole.
I know there are others on your combination. I'm sure they'll chime in.
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i just started on Fulvestrant + Ibrance, did your mets reduce ? any suggestions on side effects
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After achieving the median time on palbo through the pandemic, I will be moving on to the Lynparza Lindy after L4 showed more take up. Going to radiate that and the breast next few weeks and will start the new drug in about three weeks.
Disappointing to have a second scan in a row show changes and small growth in different areas. But I feel confident in the plan and I think a little part of me knew my palbo days were done.
I'll continue to check in here to keep up with everyone, though it seems like more action is coming to the Lynparza thread!
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Quite unfortunate that your spine lesions went undiagnosed, I see here that most of the people moved to Ibrance+Fulvestrant as second line therapy after Fulvestrant+Letrozole as first line, while my first line itself is Ibrance+Fulvestrant. I hope I am not missing out on crucial first linetherapy…
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malebreastc, I started with ibrance/ letrozole/ xgeva as my first treatment. Im on a break from the ibrance right now due to surgery and radiation, but I hope to stay on that combo. It makes me tired, but other than that I tolerate it well and scans a couple months were stable.
SondrarF I start radiation soon too! We can be treatment buddies, lol. Sorry to hear about your L4.
Wishing you all well
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MaleBC - I’ve moved on from I + F but I spent 19 cycles on it and I still like to “hang out with these ladies”. I had all kinds of side effects pretty quickly after starting 125 mg and only lasted 14 days before my MO reduced me to 100 mg due to low ANC (neutropenia). 100 mg treated me better but my ANC couldn’t have it so after trying 4 rounds of 100 and never making it past 14 days, I reduced to 75 where I stayed for the duration. I tolerated Fulvestrant well. When taking more then one drug it can be difficult to determine which drug is causing the SE but I feel confident that F was causing my joint pain. It came on slowly but by my 5th month was already receding until it went away entirely. The drug side effects (of all these cancer drugs) is really a crapshoot. Even for the most common SE, you just have to wait and see how your body will react. We may all have the same cancer but I’ve come to realize how each of us is a bit different whether it is our co-morbidities, our God given body chemistry, the damage that our bodies have already endured, the aggressiveness of our cancer, previous treatments, the level of QOL we are willing to accept and so many other factors. All these factors play a role in how well we tolerate these meds. Some start off feeling terrible and their body adjust as time goes on and others start off great but the toxicity builds and hence the SE as time goes on. Like I said, it’s a crapshoot. But there is one constant, we are all here to support one another and share our personal experiences. And more likely then not, there are others who had a similar experience. Good luck.
SondraF - I’m sorry to hear about your progression but like you said, there are others dancing the Lynparza Lindy so you are in good company.
SF-Cakes - I have read of others going 6 months after stable or NEAD scans but I don’t know when it makes sense to make that call. I’ve had 8 PET scans to date and only 1 showed stable/diminishing mets so clearly I have no personal experience to share. Gosh, putting that in writing really made me sad. But I’ll get over it. I always do. If you are not ready for 6 months scans yet, ask your doctor if you can start off with 4 or 5 months. And yes, I want to stay connected. I NEED to stay connected.
What a winter. It looks like Naples is going to have some uncharacteristic gloomy weather today and once the cold front blows through highs will only get to 70. You may laugh but that feels very cold to me. I have no desire to swim or boat unless the weather is warmer. On the upside, we turned off our pool heater for 10 days now and it’s felt great to dip my Xeloda battered feet in the cold water. It really helped to stunt the sizzle.
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MalebreastC, Did you take letrozole during your adjuvant therapy? If so, how long were you off it before you had recurrence? My MO told me they wanted 5 years between being off letrozole and recurrence in order take it for MBC.
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MaleBC- My experience was that I took Tamoxifen as adjuvant therapy for .5 years before I progressed to MBC. Was post menopausal by that time, skipped Letrozole and went straight to I+F.
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MaleBreastC, no, my cancer has never been no evidence of disease, just sort of stable since June of 2019. As RK2020 said, your neutrophils will most likely take a hit. I dropped from 125mg to 75mg after one month. I always struggled to stay above 1.0. I'm not sure about the difference between Letrozole and fulvestrant in first line. I'm sorry, I can't help there. Maybe someone else will let you know.
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Sondra-Sorry to hear about your progression but it sounds like you will be able to nip it in the bud with radiation. Hope that Lynparza works well for you with minimal side effects.
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SF-Cakes - My MO switched me from quarterly to every 6 months after I had reached and stayed NEAD for about a year. My first set of 6 month scans was right before last Thanksgiving and yes I still had scanxiety but all went well and I am still NEAD. My MO said that since I am NEAD and he considers me in remission that this way, we can reduce some of the additional exposure of radiation, etc. to my body. I think there are some people on here that have even gone to just once a year scans.
MaleBreastC - Welcome though I am sorry you find yourself here! We also have a Faslodex thread on here if you have not already found it. I had stage 2B BC back in 2010 and diagnosed with recurrence in September 2019 as stage 4 with the cancer in a lymph node and an over 7 cm collarbone. I have been on XGEVA about 2 1/4 years and Faslodex and Ibrance 2 years. The Ibrance I am on 125 mg. I have noticed that what I think are Ibrance side effects seem to vary some each cycle. For example, one cycle I might have a lot of gas or occasional mild nausea and other times I don't have either one. I am tired a lot but all three of my drugs have that as a listed side effect so not sure which one causes it and/or if there might be a cumulative effect. I feel like Faslodex has caused the worst of my side effects with back pain and hip issues as I think with the suppression of hormones the drug makes areas with arthritis magnified as far as how they feel. I am still managing to work full time and my husband and I farm and ranch but honestly, my husband does most of the work on the farm and ranch. Also, I would recommend that you look up Bestbird's link to her book. Her book is updated periodically and she explains a lot about the different treatment options. There is wonderful support on this site and I am amazed at how informative and knowledgeable some of the people in our stage 4 group are.
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Yes I took Tamoxifen for 14 years, and was Disease free for another 3 years, had recurrence after 17 years..
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