Ibrance (Palbociclib)
Comments
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Congrats Ciaci!
This is the first I've heard of stopping Ibrance after 5 years. I will be there, Lord willing, in October. I have hoped to be able to stay on it longer if possible. The benefit I could see would be that if one stopped Ibrance at 5 years and just stayed on an AI, one could pick Ibrance up again in the future if there's progression. Food for thought. But I would be kind of scared to go off of it. Hmmm. I'm not NED so it probably wouldn't apply to me.
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congrats Ciaci! I signed on just to check your scan result as we have both been on Ibrance for about 4 years now (3.5 years for me). So happy to hear you good news.
I am anxiously waiting for my test results as well. MO is on vacation and the appointment is scheduled for next Tuesday. Usually she calls or emails me with good scan results, but I haven’t heard from her. Of course that makes me anxious but then again she is on vacation. I’m trying not to read into it.
During this uncomfortable time of waiting it seems like my head hurts, I am coughing, feeling tingling sensation on my hands and feet, my eyelid is twitching…feeling like I should expect the worst. Sigh….
I have friend with stage 4 was on Ibrance and now letrozole only for the past 4 years. She’s a 8+ year survivor and doing amazing! There is hope for us…..
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congrats Ciaci! I signed on just to check your scan result as we have both been on Ibrance for about 4 years now (3.5 years for me). So happy to hear you good news.
I am anxiously waiting for my test results as well. MO is on vacation and the appointment is scheduled for next Tuesday. Usually she calls or emails me with good scan results, but I haven't heard from her. Of course that makes me anxious but then again she is on vacation. I'm trying not to read into it.
During this uncomfortable time of waiting it seems like my head hurts, I am coughing, feeling tingling sensation on my hands and feet, my eyelid is twitching…feeling like I should expect the worst. Sigh….
I have friend with stage 4 was on Ibrance and now letrozole only for the past 4 years. She's a 8+ year survivor and doing amazing! There is hope for us…..
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Ciaci - wonderfuil news on the clear scans!!
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Ciaci - wonderful news! So happy for you!!!
Thereishopeforus, in your pocket while you wait for results. We all understand those feelings
RRabbit - your pets are adorable! Snugglebugs.
SFCakes - good to hear you dug out that shrub, I do understand your feelings....hugs to you!
Tanya, thanks for the update on Candy. She is such a caring person and I hope her sister is doing better.
Jsniffs, my advice is late but I agree with the rest, start the Ibrance 125 and you can always go down to 100 next month. Hope you are feeling ok- keep us posted!
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Ciaci fantastic news!
Tany
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Ciaci,
Good news! I’m so happy for you!
Have a nice summer.
Lili
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Ciaci- love this news! Congratulations and happy dance!
Thereishope4us- thank you for posting about your friend’s success with Ibrance and Letrozole. That is very encouraging! Hoping you hear great news next week.
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Ciaci, congratulations!!!
This weekend beloved and I will be celebrating 19th wedding anniversary early since he needs to work on the 3rd. Hitting these milestones is wonderful even tho the days surrounding them are still kinda scary with the uncertainty. I'm feeling stronger a bit today, it sorta waxes and wanes sometimes, hope it holds up for anniversary festivities including a nice dinner out
Jsniffs, I was at 125mg for 12 cycles and then I went down to 100mg at my request due to SE, I'm on my 9th cycle at 100mg. Many women have done well at 75mg too, so start at the top and work your way down if you need to. Long runs for many at each dose.
Tomorrow is supposed to be beautiful so i'm soaking in maximum Vit. D.
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I am back. Thanks for your concerns for me.
I am still in limbo with my situation. I had an appointment with RO and liver surgeon this last Tuesday to discuss my options. But I had to cancel--- my sisters situation and still waiting on insurance approval for the consults. I got approval on Thursday and rescheduled for mid August. My sisters situation is not good. I will be busy caring for her too. I don't know if I can do all this.
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Candy, my heart goes out to you and to your sister. It's so hard. I care for my husband who has stage 4 mesothelioma, and it can be truly discouraging some days, like how did we both end up with cancer, wtf? Hope you can get to your rescheduled appt in August and that your cancer just plain stops growing in the meantime.
Rabbit, have a happy anniversary! May you have lots of energy to have a great dinner with your sweetie.
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Candy - hoping August brings good news for you and your sister. Sorry to hear that insurance is hindering things.
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Been off for awhile on vacation (really nice....able to do a lot of walking/light hiking, put treatment issues out of my mind for a week).
So happy or Ciaci's great results. Sorry you didn't find an alternative to pain with letrozole, KBL, and hope the exercises help.
Candy, sorry to hear about your sister, in the midst of your own treatment uncertainties. Prayers for both of you.
I'm going to post this next a couple of places because I'm preparing with somewhat increasing anxiety to talk to Onc about next treatment steps monday. ANC and WBC tanked (below .50 or heading there) on all doses of Ibrance so that seems over. If he's still considering the options he wanted me to choose from before my trip, when I preferred to give the lowest dose of Ibrance a try, they are probably letrozole with Verzenio or letrozole with fulvestrant. I've been researching and have the following concerns, which of course I'll discuss with Onc but wondering if anyone here has knowledge/experience
Letrozole/Verzenio: has advantage of continuing AI/CDK4/6 inhibitor combo which seemed to be working at least from data from TM tests. A bit worried about GI SEs with Verzenio because I already have IBS, but willing to try if this is the best potential option for a treatment that will work for awhile without the on again/off again schedule I've had with Ibrance due to neutropenia
Letrozole/Fulvestrant: I had never heard of this combo before Onc mentioned it, though noticed it's in Bestbird's list of first line treatments for mbc. Seems odd to mix two drugs that target estrogen uptake even if different ways. But there are a few studies--some using Anastrozole rather than Letrozole--that seem to show better PFS than on an AI alone. Not sure how it would compare to the AI/CDK 4/6 inhibitor combo. Also one, a 2011 study, suggested that ER+/PR- status was not favorable for a significant PFS on this treatment, and that is my current diagnosis, so.... However, perhaps there would be an advantage to doing this now and saving Verzenio which can be used as a monotherapy if hormonal therapies fail??
That's my thinking so far. Other option would be to try Ibrance again on a 5 day on/2 day off dosing schedule. But, given my lousy experience with neutropenia on Ibrance I'm not sure I want to risk another several weeks having to go off to rebuild wbc. I have extensive bone mets and want the best chance of getting cancer there under control for a time.....thoughts?
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Thank you, prairiesea. I hope you get good treatment that works, whatever it may be.
Candy, I’m really sorry about your sister. My heart goes out to you. Hugs from here.
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Thanks KBL.
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Anyone get nauseous on Ibrance? This past week, my 3rd week, my stomach is nauseous all the time. I tried to go into the office today and I only lasted 15 minutes in my chair before feeling like I was going to get sick. I took Pepto before I left the house and when I came home I took Zofran. Not much relief.
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J just read in Steam Room we have lost Jaycee. RIP sweet lady.
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Rosie Meeeeeee I get nausea all the time. Not sure now if ibrance or stress. Been off 3-4 months, stress is finally letting up, do feel better. OTC stuff simply doesn’t work for me, zofran, well, I couldn’t poop for what seemed forever. Compazine is my friend.
I had to bail out of a dentist appointment last month thought I’d loose stomach in the chair. The thought of food could be nauseating much less eating it.
My family is going to one of the best, nicest restaurants around here next week and I better be able to eat!!
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RIP jaycee ❤️
I learned so much from her on this thread.
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So sad to lose Jaycee. She worked tirelessly for New Mexico to have right-to-die laws. I’m so glad she got to see it pass. RIP, Jaycee.
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So sorry to hear about Jaycee. She made a difference.
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Shocked and sorry to hear about Jaycee, it seems so soon after she said goodbye..
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Hi Ladies - I haven't posted in awhile. I just began Cycle 33 of Ibrance and then had my PET scan and they found some mild progression. There are no new lesions, but existing ones have become active again, increasing in both SUV values and size and degree of sclerosis.
MO is recommending moving to Piqray, but since I am about to put my house on the market and move to Florida, she recommends I remain on Ibrance until after I move, since the side effects of Piqray can be unpleasant, so I would need to settle in first. We agreed to stay on Ibrance and repeat PET in 3 months before changing to Piqray. Has anyone ever had mild progression like that on Ibrance, but had it settle down and was able to remain on Ibrance, or is it pretty much a given that it is time to move on?0 -
Meg, I had what was deemed "minor progression" at 3.5 years which consisted of a large area of existing mets one hip that was getting hotter with each scan, as well as a new sharp met mid-spine. My MO suggested wait and watch, but I consulted an RO who said he would radiate it, so we did that (SBRT) and it killed the areas of concern and that was good for another 2 years. progression at that time was more widespread, so I moved to Faslodex-Ibrance...
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I'm so thankful for the difference Jaycee made in our lives. She gave so much food for thought and so much encouragement. May God bless all who loved her.
Love from PatGMc
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Meg - my BC (3rd one) mushroomed and became metstatic after 13 months on Ibrance/Arimdex. It seems like many people who post were already metastatic and Ibrance seems to be controlling it. My DR took me off of it and I am now on Exemestane/Everlimus. I'm wondering if the pharmacy switched from brand to generic when DR lowered dose from 10mg 7.5 . Before the boxes said Afinitor in bold letters, and now say Everlimus. Just finished 18 rounds of radiation, and the RO took me off of Everlimus during treatment because he thought the literature was unclear on the safety of Everlimus during radiation treatment. It is unclear whether I have mutations because the lab screwed up and did not have enough sample to rerun. I questioned the lab about this and eventually told them I was not going to pay. They did pick up ER+ (which was already known), a low AR, and low PDL-1. The DR was unconcerned because she said the ones tested for do not have a good treatment. A blood biopsy did not pick up anything. She mentioned Keytruda, but said while it was very effective for some cancers, its track record with BC was not promising. So, does Piqray target specific mutations?
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Hello dancers! After several weeks off the forum, I got caught up tonight. I'm awful at calling out everyone by name but know that if you had good news, I smiled and if you were suffering from anxiety, I was praying for answers/better days. And Jaycee…there are simply no words. RIP sweet lady
I've been on an oncologist merry go round since my JUNE 21 PET scan in Wisconsin. I finally got confirmation from my WI onc that they received my April Moffitt scan and would do a comparison read. Instead I got radio silence. I didn't hoot and holler because I knew that MO wanted to switch me to Exemestane/Everolimus and said I could start the treatment in whichever state I preferred but I should plan to do the first 3 month in 1 state only. But I wasn't convinced that a switch was necessary.
Then Moffitt said that they received the scan and would do a comparison read. This was the second opinion I wanted! They also scheduled a visit. The last time they did a comparison read, I got a simple phone call saying all was good. Scheduling an appointment made me a bit uneasy but I've been busy moving so I tried to push it to the back of my mind. In the meantime, we were anxiously awaiting a comparison read because we needed to plan when to move my care from one state to the next. The day of my MO consult FINALLY arrived on Aug 3. After waiting 45 minutes on Zoom for my MO to arrive, a nurse calls and asks where I had my previous scan. WHAT? I told her this visit was to go over a comparison read and if they don't have a report, my oncologist visit is unnecessary. Grrrr. 😡
When my MO came on the Zoom, she apologized. Whatever. I'm so tired of feeling like a number at Moffitt. They have great experience and expertise but my experience has been fraught with constant follow up and mistakes. So going completely off a written report from WI that lacked SUV numbers (another one of my gripes) and not looking at the PET scan itself, she said my progression wasn't concerning enough to switch treatment. Although that's what I wanted to hear, I wanted the answer based on facts! I just don't know what to do anymore to get competent, caring and accurate medical care. Is that asking too much?
Now that I vented to all you fine ladies, I'm going to send a follow up message to my team at Moffitt
P.S. I've also moved my care permanently to Florida so if anyone knows of a good facility and/or an MO who specializes in BC in the SW Florida area, let me know! I’m considering Sylvester Comprehensive Cancer Center in Miami. Would love to hear the good, the bad and the ugly.
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I think Florida Cancer Specialist are in Naples. I had them with original dx, was pleased. Humana kicked them out of network or I’d still be with them. I guess Miami would be easier to get to than Tampa. I always planned for Moffitt to be my plan B, if necessary.
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RosieRed - for nausea I had when I first started Ibrance, I wore sea bands on my wrists. It's an accupressure point for nausea. It really helped me, and I currently don't need to wear them. I have posted about sea bands before, but I don't remember which page. So if this is old news, please tell me to "stop with the Sea Bands, Kale!" lol
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RK, I can relate! Big cancer centers are the same, need a lot of following ups and they do mistakes, but they have great experience as you said. Just being proactive and show them you are on top of all procedures. Remembering our sweet Jaycee, encouraged me to speak up/ keep following up. I must say I’d prefer to be known in my clinic as a trouble maker (which I am now!).
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