Ibrance (Palbociclib)
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Tangandchris - I am so sorry that your DH has Covid, right when you are to start Ibrance and still getting used to this new diagnosis. Hope you are ok and DH can distance etc.
RRabbit - great news on bone scan and I am proud of you for getting your bone scan report - like many of us I dislike how doctors make us wait for THERE time - I also like to read over the scans. Sending you good vibes/prayers for good CT scan results, too.
LSHarvey - sorry you are leaving us but it sounds like your oncologist has a good plan! Keep us posted!
Vaccines: I did get a flu vaccine at my cancer center. I will get the covid vaccine at some point if my oncologist recommends it and like Chicagoan and some others have said, I trust Pfizer. I think my neighbors are working on the Moderna vaccine through Fred Hutch and they are wicked smart Phd Virologists.
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RRabbit- Waiting is the pits.
Thanks for the vaccine responses. I know each has to do what they feel comfortable doing. I took the flu shot and plan on taking the Covid vaccine. I just wondered if your MO's have said anything yet-- for or against. Esp with our cancers and the Ibrance low counts. I read the Pfizer and Moderna ones are not live, the others are. So that would make a difference, right? But I don't know if we would have a choice when it gets distributed. You would think they would use the non-live one for the immunocompromised population. Just have to see.
If you ask your MO's, please post what they say. My MO nurse said they have not discussed it yet in the office so she could not advise me at this time. She did say they do not advise live vaccines of any kind.
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I am also very interested in hearing the opinions of various oncologists on the Covid vaccine. I’ll be asking my oncologist at my next visit on Wednesday. I’ll let y’all know what she says! I got the flu shot and although my counts are low, both my oncologists recommended it.
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I used I/L for two and a half years, had slight progression in bones, not lungs and a biopsy indicated I had the PK3 mutation so I tried Piqray but that was a big disaster (lung inflammation), tried just faslodex and then Xeloda- none of them have worked. Right now my MO told me I’m out of options except for Doxil which sounds miserable. I want to try I/L again, it’s the only thing that has worked for me. I have a telehealth appointment on Monday with another MO at a bigger cancer institute so I’ll ask about trying I/L again. Anyone here go back to a medication with success? Or any other recommendations besides Doxil? It’s getting scary as she says I have a couple months left with no treatment😣. Please help with suggestions
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KatyK,
So sorry for your current situation. Hopefully the visit with the other MO will be helpful. Ask a lot of questions, and especially ask if that MO would recommend a new biopsy to see if your cancer has further morphed. That can help guide with new treatments.
Look back a couple of pages -- PatgMc is one of the folks who has gone back to Ibrance. There are others as well who have posted doing so, but I can't remember who.
I've also seen some studies about Verzenio as a stand alone treatment, or Verzenio after Ibrance. I'd ask about that as well.
I would also ask the new MO about clinical trials. There are lots of drugs in the pipelines and one of them might work for you.
Good luck, and please keep us posted.
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KatyK - Ditto on everything that BevJen said. Good luck and please post an update. Hugs.
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Yes Katyk, PatgMc is the very person for you....I’m also on Faslodex only after progression after 28 months on I/L. Still at the waiting to see if it works stage at the moment.
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KatyK,
Your treatment options are not so limited, but it is a good time to consider a clinical trial. Some of them significantly limit the number of chemos you can have in the metastatic setting, so it'd be good to do it before taking more chemo.
It's definitely a good shot to go back and try what was working, or as BevJen suggests try Verzenio (which is a stronger CDK4,6 inhibitor) and/or find a clinical trial that has a SERD and a CDK4,6 inhibitor. But ask if the lung inflammation you got is an issue, because these can cause pneumonitis?
There are also other treatments- NicoleRod did not respond to Xeloda but did respond to Halaven (but watch out how many chemos you take- they count how many you have had, regardless of whether they did not work!)
In clinical trial you could get Enhertu, if you have some HER2 expression (or Trodelvy if you don't), and other drugs can be tried like PARP inhibitors, BET domain inhibitors, and the Alisertib for AuroraAKinase (AURKA) has a good track record. The immunotherapy plus EP4 trial Kattysmith took is also very attractive, and more of that is coming next year. Good time for a second consult..
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RRabbit- Any results of scans yet? You have a MO visit next week, right?
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CRISPR - Don't forget that name!
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hi everyone. Question. Does anyone on here get low hemoglobin, Ive had 3 blood transfusions, will have my 4th during the week. My labs show low hemoglobin, my fr thinks it’s because of Ibrance. I recently started Ibrance a month ago. So now I’m off of it for a month. Then MO once he puts me back on next month will probably lower my sosag
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Hopefull2, my hemoglobin was low for monthsbefore going on Ibrance, not low enough for transfusion, but it’s stayed relatively the same number the whole time. I’m on 75 mg. That means the Ibrance has not really affected it and made it go even lower than it was. I don’t know if that helps you.
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candy- still in middle of scanxiety no CT report yet in my mailbox. MO appointment, blood, zometa on the 3rd of Dec. I have a feeling I'm going to have to go straight to medical records before my appointment, get a copy of my CT read it while heading up to MO appointment. Not how I want things, but I just have to read it before I see her. No ifs, ands or buts, I have to read it. I wont hear from her before the 3rd so I'm in limbo unless I get a surprise in mailbox. Wont/Doesnt update my portal with this stuff, and recently bloodwork too. Signed release day of scan, center is 30 mins from me, not sure what the hold up is. I'm most concerned about my CT (bone came back stable) and that's the one I'm having to wait and ruminate on. Ugh.
On another note, I've pushed myself too hard trying to keep busy due to scanxiety and have almost been crawling around the house because I did too much. I've almost organized my entire house and my back and pelvic bones are singing. I'm half tempted to just drag myself along and keep going to keep the mind busy. I've prepared myself either way, it's the not knowing which way that's the agonizing part.
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Rabbit I understand the agonizing wait. I’m sending you a nice distraction and a big hug.
Tnya0 -
RRabbit- I totally get it. Sounds like you will have to go to Medical Records before your appt. Give yourself some extra time that day to get the report and read it before you walk into office to see MO. Not great that you cannot read and absorb it and formulate questions (and for me it would be to look up unknown medical jargon to fully understand report). I have my next scans AND see MO on Dec 21. So I am going to think of questions for 1. in the event of no progression and 2. for the event of progression. I had MRI in Oct that showed possible new lesions in liver. MRI in Dec is to monitor those and if increase in size or number, then considered progression. Wish I had a couple of days to review scan results and formulate a possible plan to submit to MO for discussion, but that is not going to happen. I travel 2 hours to new cancer facility, so would be an extra trip to schedule scan different day from appt. I am feeling the scanxiety now-- 1 month before. Fun Fun.
Hugs to you.
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It's a long story, but I stopped taking Ibrance after six months because I had a really bad reaction and developed pneumonitis, diagnosed recently by a radiologist and a pulmonologist.
Yes, I was one of those unlucky people who got really sick on Ibrance, with lots of coughing, serious shortness of breath, and fatigue so profound that some days I was sleeping 19-plus hours. I had to stop three times climbing the stairs from my basement to the first floor, and sink into the first available chair when I got there.
(If you haven't read the package insert or the FDA warning, do so now and stay alert for symptoms.)
I was also very stupid, not realizing what the problem might be and that I was gradually getting sicker. I thought I could tough it out until I got to my doctor. At my visit, I told him what had happened in detail, said I could not deal with the 125 mg., then went to a lower dose. A month later, when scans showed a lot of new activity in my lungs, I went off I brance completely and back to Faslodex only.
That said, two months later, I feel like myself again. And, although my lungs took a beating, they seem to be on the mend
But my hair! It's still thinning just as much as when I was on Ibrance. I am finding hair here, there and everywhere. I started taking Biotin. Any suggestions?
Tina
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Candy, yep not ideal for sure and I look up the medical jargon too I dont understand. I notice depending on who does it the more flowery with the words they get. Sometimes I just want to say, "Ok, your just showing off there with that word". Bummed it looks like I wont be able to play word search beforehand. Where I am has a "no waiting room policy", which means I have to wait in my car, wait to be called when MO is ready for me by a nurse, and given a password to enter the building. Its overkill and stressful and even if I get there early, cant go in early. Sucks. I've got your scans and appointment written down, hoping no progression in liver mets for you. Scanxiety sucks, and I think sometimes it's made worse when information about them dont freely flow from MO to patient and/or we aren't given much time to digest things. Thinking of you
Hugs Hugs Tanya!
Thank you Tina! There you are! I am so so sorry about the pneumonitis. Yep, I know they warn of lung inflammation with this stuff (they warn in the commercials now too), so sorry you got it, but so glad to hear your okay and doing much better on just the Faslodex. Hoping your lungs continue to heal. I'm glad your alright. I heard Biotin really helps with hair (and nails, my nails have been a bit wonky on Ibrance particularly the toenails so might give it a whirl). Thank you for checking in
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Tina2,
Wow, that's some story. And interesting that it didn't resolve even when you went on a lower dose? I wonder if that's because things had already deteriorated in your lungs from the drug?
I recently switched from 125 to 100 mg for some of the same reasons. I had fatigue, but now like you are describing. But the climbing of the steps and being totally out of breath describes what was going on with me to a "T." I started complaining a couple of cycles ago, but my MO stood steadfast that I should continue on the 125mg. Lo and behold, this past month, I had my appointment instead with the NP. She was surprised that I was still on the 125, stating that they don't really have a lot of people who stay on that dosage for that long. And then she wrote a prescription for the 100 mg tablets. I'm just starting on the 3d week with them and I feel much better. Sometimes I still have to pause when I'm going up stairs, and sit, as you described, but it seems a whole lot better.
I guess this makes me wonder what the heck the docs are thinking with the higher dosages and also what the drug manufacturer is thinking? They don't make more $$ on the higher dosage with Ibrance, so what's in it for them? The NP told me that there is no loss of efficacy with the lower dosage.
I hope you feel better soon and that you can figure out what is a good drug for you, or that you are able to stay on the faslodex alone again.
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BevJen,
I went to the lower dose only after I'd been on the higher for five months, so yes, the damage was doubtless done by then. In the third and fourth months I told my doctor I was increasingly fatigued and miserable, but he did not offer to reduce the dosage. He then asked me to start keeping notes on my symptoms. I did during the fifth cycle and they are frightening to read now.
I think one of the reasons I was reluctant to call my doctor during that fifth cycle was that I was too proud, which was stupid, stupid, stupid. Now that I can see more clearly, I realize I allowed myself to be intimidated to the point where I could have been seriously harmed, which makes me angry with my doctor for not listening to me at the outset, and with myself for not having the gumption to speak up more forcefully and persistently.
Tina, still learning after all these years
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BevJen,
I went to the lower dose only after I'd been on the higher for five months, so yes, the damage was doubtless done by then. In the third and fourth months I told my doctor I was increasingly fatigued and miserable, but he did not offer to reduce the dosage. He then asked me to start keeping notes on my symptoms. I did during the fifth cycle and they are frightening to read now.
I think one of the reasons I was reluctant to call my doctor during that fifth cycle was that I was too proud, which was stupid, stupid, stupid. Now that I can see more clearly, I realize I allowed myself to be intimidated to the point where I could have been seriously harmed, which makes me angry with my doctor for not listening to me at the outset, and with myself for not having the gumption to speak up more forcefully and persistently.
Tina, still learning after all these years
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I also have the problem of thinning hair. It was thin before Ibrance from my chemo in 2011 and now I have resorted to wearing a wig.
I sure would like to look at my scan report before talking to the MO too. It is never released until after he talks to me about it. Then I can print it and try to muddle my way through it. It would be so much better to be able to ask questions and have a discussion with him after I read it. My next scan is in Dec. and a new lung nodule showed up on the last one so I really am anxious about it. Right before Xmas; what lousy timing. I wish I would have asked if I could wait til Jan.
Hello to all.
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Hey all - I just had my monthly appointment at Moffitt. I was not able to see my oncologist but I spoke with the NP. I asked her thoughts on the Covid vaccine. She said that the doctors at Moffitt have not yet been given access to the study data. Once they have the data, a group will get together and come to a consensus on their recommendations for patients. My next appointment is Dec 23. Maybe they will know more by then. Maybe.
Happy Thanksgiving everyone! It sucked being dx with MBC this year but I still have SO much to be grateful for.
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Tina2 - My oncologist suggested that it was Arimidex causing hair loss/thinning and not the Ibrance. After a year, I think it is slowing down a little, but still losing quite a bit. Biotin definitely seems to promote nail strength/growth for me, but does not seems to do much for hair. One person posted a shampoo she likes, but before I start using it, I want to talk to my Oncologist about it, because it claims to suppress testosterone, so souonds like a drug? My bookmarks are a mess, but I think it was one of these 2 shampoos. Other links discuss the dht blocking
https://www.ovationhair.com/About-Ovation-Hair-Cell-Therapy https://purador.com/pages/solutions
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RK2020- Thanks for sharing. If you hear more Dec 23, let us know. I will be looking for your post. I messaged my MO nurse last Friday with my question if I should take the Covid vaccine when it is available. Nurse said they have not discussed the vaccine yet. Nurse then messaged me back on Monday that my MO is ok with me taking the vaccine. So... did the MO just say "Yes, Yes tell her it is ok". Are they doing studies on the data? Discussing with other MO's in the practice?
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I see my MO on Monday and will be asking about taking the vaccine too. It will be interesting to compare our answers!
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So there aren't many interesting abstracts at SABCS so far (haven't read them all, plus the newsworthy ones are being embargoed till early Dec, so hope there are some good headlines this year)
However abstract 490 is interesting. They did a survey of how patients in the real world did on different secondline treatments, and here is bottom line:
Results: A total of 1,210 pts with HR+/Her2- mBC received CDK4/6i with ET in the frontline setting, including 29.1% with de novo metastatic disease. Average age at diagnosis of metastatic disease was 64.4 years (range 28-84). A majority of pts received palbociclib in the frontline setting (88.2%), and 68.8% received an aromatase inhibitor (AI) as the frontline ET partner. 839 pts subsequently received second-line therapy. CDK4/6i was continued as part of second-line treatment in 308 (36.7%) pts. 249 (29.7%) pts received Chemotherapy (CT) as second-line treatment. The proportion of pts who continued CDK4/6i increased from years 2015-2020 (p=0.035), and the proportion who received CT decreased over time (p<0.001). Of the 308 pts who received a CKD4/6i in the second-line setting, most received the same CDK4/6i in both lines;however, pts treated with abemaciclib or ribociclib in the first-line setting were more likely to receive a different CDK4/6i than those who started withpalbociclib (54.2% and 39.1%, respectively, vs. 22.3%).
Among 160 pts who received CDK4/6i with fulvestrant in the second-line setting, 81.2% had previously received an AI in the frontline setting. Unadjusted real world (rw) PFS appears to favor those pts who continued the CDK4/6i (rwPFS 11.27 months, 95%CI [8.87, 13.31]), compared to CT (rwPFS 4.73 months, 95% CI [3.88, 5.59]), fulvestrant (rwPFS 3.68 months, 95% CI [2.99, 5.22]),or mammalian target of rapamycin (mTOR) inhibitor-based therapy (rwPFS 4.27 months, 95% CI [3.23, 6.14]) (p<0.001).
Conclusion: The use of CDK4/6i continuation after frontline progression has increased over time, while the use of CT has decreased. Continuation of CDK4/6i in the second-line setting appears to be the strategy with the greatest PFS benefit.
So, it seems promising to move from AI to fulvestrant while keeping the CDK4,6 inhibitor as secondlineto get a PFS of 11.27 months (half will do better than that), and potentially those numbers might be higher for a SERD with CDK4,6 inhibitor, certainly would be for those with ESR1 mutations. Chemo or Piqray were similar in secondline, and barely better than Fulvestrant alone, and so again even a SERD alone might be comparable or better than chemo.
The ADC Enhertu or Trodelvy have a longer PFS than chemo, so they would fit in there somewhere in-between; might be a longer PFS than fulvestrant with CDK4,6 inhibitor, but still being chemo you'd probably want to be endocrine-resistant before moving to those
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Happy Thanksgiving to all of you, I am thankful for each and every one of you. November 2019 is when I was dx with stage IV. Like all of us, the unknown about treatment side effects and how, if or my body would respond to treatment created significant fear, sorrow and apprehension. I started Ibrance on Thanksgiving Day, 2019. Learning and sharing with all of you this past 12 months has made it so much easier to handle. Yes - I still have fear about "how long" but I have more hope.
I see my oncologist on 12/3 and will ask about the Covid Vaccine and report back!
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Cure-ious,
I am thankful for you sharing your knowledge and research skills with us. So it sounds like my second line could be Ibrance/Faslodex?
Wishing all my US sisters a happy thanksgiving. I am cooking just for myself this year but it is peaceful. Enjoyed not having to deep clean!
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Hello everyone! I still lurk following everyone's journeys. I wanted to say Happy Thanksgiving to those in the USA. Everyone else, happy Thursday!
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Cure-ios,
As always, I deeply appreciate you pouring over the latest data and providing highlights. To help me better understand the findings, I have a question. When the statistic is something like 95% CI [3.88, 5.59] what exactly does that mean (in simple English term)?
Happy Thanksgiving everyone!
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