Ibrance (Palbociclib)
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Deb, TMs sometimes go up before they come down w/Ibrance, and the trial results mention patients who didn't see obvious results until 5 or 6 mos. into the regimen, at which point TMs dropped drastically, along with other significant improvements. It's good that your PCP is up on Ibrance and tried to forewarn you a bit about not expecting overnight results. OTOH, it sounds like the way she explained it to you made it sound overly complicated and confusing. The bottom line is, you may not be able to tell what's going on in just a month or two because Ibrance frequently takes more time than that to really kick in and start getting results.
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My oncologist also said that with ibrance sometimes the tumors grow before they shrink. She said the earliest she scans people is 3 months because of this. She does think that USUALLY you'll see results in 3 months, but not to panic if you don't because sometimes it takes 6 months. She also took a tumor marker baseline for me at the end of the 2nd month because she didn't want it compared to the first month when the ibrance could possibly be elevating things. My oncologist thinks highly of the ibrance treatment. My husband's research also agrees with her feeling. Stanford feels very positive about it as well. Everyone will respond differently, but overall, it's somewhat of a game-changer!
Interesting insight about the keytruda trial! I still believe in my heart that immunotherapy will be the ticket.
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DebK, I also decided to keep taking the Letrozole until I was sure the faslodex had kicked in. My first scan on the combination of all three (letrozole, faslodex, and Ibrance) was amazing. So now I am afraid to stop the Letrozole because I think....what if the combo of all three resulted in the results? I think on my next MO visit, I am going to ask her to check my estrogen levels.....then stop the Letrozole for 30 days to see if the level remains the same. If it remains the same...I am thinking about dropping the Letrozole. I have been so nauseated lately and wonder if its the letrozole. My week off Ibrance this week has been a bad one for nausea, so that leads me to believe it is not the Ibrance. Also I don't like taking so many meds!
But to answer your question.....No you are not crazy!!! Just being cautious!!
I pray your results are great with Faslodex!!
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It seems like it makes sense to stick with ibrance and faslodex/letrozol rather than add the keytruda, if you are solidly stable. Why experiment if things are working. I certainly am interested in the outcomes of the trial.
The trial will allow you to join if your tumors have increased, as long as the increase is less than 20%. we have the opportunity to add the keytruda as soon as our stability starts looking a little wonky.
this is an interesting video about fulvestrants mechanism of action. aromatase inhibitors like letrozol eliminate estrogen in your body. fulvestrant interferes with the estrogen receptors themselves and may actually get rid of the receptors. fulvestrant and letrozol have completely different mechanisms of action but they are never prescribed together. it is not obvious to me why not; however perhaps fulvestrant completely shuts down the estrogen receptor activity making the letrozol redundant.
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Z, interesting info. And what I like about this info is if we stop responding to one of these, we can move to the other and not expect immediate resistance because these drugs do different things. It's all about "buying time" and being ER+ allows us these options. Silver lining!
I know I keep harping on it, but I'm REALLY anxious to see/hear about the results of the Keytruda trial. What it's done for other cancers is great. I know two friends whose fathers had Stage IV pancreatic cancer. They were given Keytruda. They are in remission and have remained there for some time. That's pretty incredible stuff. Sure hope it works for BC.
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I have a question - how often is bloodwork done? I also looked up my cost of this on my insurance, and at the most, it will cost me $200 a month. Oh joy.
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Mmerz, I had bloodwork the day before I started the 2nd cycle, and have an appt for one month later where I will get bloodwork, see onc, then get my shots and start the pills. I'm getting the impression that it's once a month. You can get a $10 copay card from the ibrance website. My copay was also $200. All you do is answer 3 questions then print the card.
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Deb,
I find that very interesting as the first scan that showed slight progression on Faslodex, my Onc pulled me off. I still wonder if adding the Ibrance and staying the course a little longer would have been better results?
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Re: bloodwork... for the first month I did it weekly. Since my counts were always good I now go every other week (I'm just now starting my third month). No discussion yet about going less frequently than that.
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Artist I agree with you. That would be frustrating. Maybe faslodex is not a drug that takes a long time to work like ibrance does. I am having a response after only a month so I'm guessing it's mostly the faslodex since ibrance can take longer.
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When the nurse explained how faslodex works, she told me it destroys the estrogen receptors. That made me wonder if that means I will end up ER-.
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Time to response for faslodex/fulvestrant is 3.1 months in this analysis. The range was from under one month to nearly 3 years. This isn't how long response lasted, but how long it took to find whether it worked in study participants.
~ Stephanie
Clin Breast Cancer. 2006 Aug;7(3):244-7.
Time to response: comparison of fulvestrant and oral endocrine agents.
Dodwell D(1), Pippen J.
Author information:
(1)Cookridge Hospital, Leeds, UK.
BACKGROUND: The different pharmacokinetic profiles of the intramuscularly administered antioestrogen fulvestrant and oral endocrine treatments have led to speculation among some physicians that this could result in a delayed time to response (TTR) with fulvestrant.
PATIENTS AND METHODS: An analysis of TTR was performed on data from 2 phase III trials comparing fulvestrant and anastrozole as second-line treatments for postmenopausal women with advanced-stage, tamoxifen-resistant breast cancer.
RESULTS: In a combined analysis of the data from these trials, median TTR was 3.1 months (range, 0.9-33.1 months) for fulvestrant and 3 months (range, 0.7-20.2 months) for anastrozole, although responses were still being noted after 2-3 years of stable disease in some patients. Data were subsequently analyzed from 3 other randomized phase III trials of fulvestrant, anastrozole, and tamoxifen in postmenopausal women. Time to response was also similar between the 3 treatments in these additional analyses.
CONCLUSION: Time to response is similar between fulvestrant and oral endocrine treatments, despite pharmacokinetic differences.
DOI: 10.3816/CBC.2006.n.036
PMID: 16942641 [PubMed - indexed for MEDLINE]
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How faslodex works from breastcancer.org
http://www.breastcancer.org/treatment/druglist/fas...
Brand name: Faslodex
Chemical name: Fulvestrant
Class: ERD (estrogen receptor downregulator) hormonal therapy. There are no other ERDs used to treat breast cancer.
How it works: ERDs block the effects of estrogen in breast tissue by attaching to the estrogen receptors in breast cells, by reducing the number of estrogen receptors, and by changing the shape of the estrogen receptors so they don't work as well.
And remember the faslodex thread here:
https://community.breastcancer.org/forum/8/topics/...
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Thanks Step-
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Thank you, HLB, for the info! My budget doesn't squeak so much now! Thank you for the blood draw info. I have one good vein left
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Mmerz my veins have been bad since chemo 12 yrs ago. Luckily all of the people who do the blood draws in the onc dept are very good at it. Sometimes they use my hand. It's gotten to where I actually get relaxed when someone draws blood. I get that way when someone is touching or being gentle, and they never hurt me so it's kind of enjoyable. Weird I know.
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Hello All-
I am in a weird place right now because after my Xeloda stopped working I was put back on femara but with affinator. I haven't been able to take Affinator for more than 5 days at 5 mg without my neutraphils dropping dangerously low. This has been going on for a bit over a month. I am waiting to here from MO and I believe he may suggest Ibrance. But I've read that low white counts are big on Ibrance too. Does this make sense? Does anyone get shots of neutrogen or whatever it is called for low white blood count. I don't even have a trend long enough to see if this protocol is working and if it is I would love to stay on it. I'm super frustrated right now.
Thanks,
Renee
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I'm so sorry to learn that Afinitor is giving you problems, Renee. It's always a bit worrisome to have to change, but hopefully whatever is next for you will work great for a very long time, without the complication of low counts. With Ibrance, Neulasta or Neupogen are not recommended. You're correct, Ibrance does lower counts for the majority of us -- especially neutrophils/granulocytes -- but that's part of the way it works, and altering them w/a med is basically counterproductive, or at least that's what my UCLA onc advises. I've heard (read) that Afinitor is a really tough drug. Hopefully Ibrance, which is an entirely different drug (a CDK4/6 inhibitor) will be easier for you, especially since it's 21 days on then 7 off, during which time counts should pretty much rebound.
Let us know what your onc recommends! Deanna
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Renee - Afinitor is notoriously hard. It's frustrating to take it and have to bail with no clear outcome, but I think that is a problem generally with Afinitor. It's not just you.
Ibrance lowers neutrophils, sometimes. It hasn't for me. Many people's neutrophils are not affected. And I know that many of the people on ibrance with low neutrophils aren't actually getting sick from the low neutrophil count.
Ibrance is no walk in the park. Join us here to complain about any side effects you experience. But compared to other drugs it's easy.
I am on my week off ... and that's been when I get mouth sores. What is with that? But they are mild.
>Z<
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(I'm trying to catch up on this thread, so please forgive some late responses.)
Lynwood, wonderful news that you are NEAD! And it is encouraging to me to know that Ibrance helped make that happen for ILC.
Zills, HLB, Monika, Faith. more good news!
Eelder, thank you for telling us about the woman in your town who has lived 18 years with stable liver mets. More hope. What your onc said about luminal A/B and mets location is very interesting. Do you happen to know of any papers about this? I was stage 1 with higher-end-of-low Oncotype, and got liver mets three years later! Still high ER and high PR too. Luminal B could be expected to have low PR, but the biopsy at the time of the mets diagnosis showed Ki67 15-20%,and I think my onc said that the Ki67 might mean luminal B in my case. And it did respond superbly to taxol. Hmmm. Tamoxifen failure. Was it luminal B from the start? It's really bad that Ki67 wasn't done for my first diagnosis.
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Stefanie, thank you for the additional info about the Keytruda trial.
Rpoole, your plan makes sense to me. You could abandon the letrozole with so much less worry if your hormone levels are nice and low without it. I have also thought of having my E2 checked. Actually, I did ask to have my hormone levels checked, but darn, they only checked FSH. That did confirm that my chemopause looks permanent. Something may be brewing, and I'd like to know if too-high estradiol is to blame. I'll certainly ask for the test before any treatment switch.
HLB, I have the same worry about faslodex. If it destroys the hormone receptors, do we create a TN monster? Probably there is something I don't understand about this. It's on my list of questions.
So here is my update. After over a year of NEAD from taxol, my previous scan showed two liver areas with somewhat higher activity than background. It was too subtle to call. At the same time my TMs went from teens to twenties and I was feeling occasional pains in my liver. Waiting three months for the next scan, TMs went to 30s then 40s--just out of normal range. Then came the next scan, which is still inconclusive! There is a spot that looks somewhat active and somewhat bigger. Perhaps. But the TMs went back to 30s, normal range. Mind you, normal for me is teens. So we are just holding steady with Ibrance and letrozole. It makes me feel like I dare not make a wrong move. It's weird to start from NEAD, because there is nowhere to go but worse. I will end up being very disappointed at something that others would consider not too bad. In any case, if something is going on, it is slow. But I wanted to be in the 4% for whom the cancer does not return after a complete response. Yet I know that was a long shot, and there are those who live a long time without ever being NED. I am rambling. It's a crazy way to live, this stage iv. I am so tired of being tired.
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I had to stop Ibrance on Monday after 13 days on 75mg .Counts too low again (I started out on 125mg in October and did well for 5 months at the high dose and each month after that I have had to lower due to problems with my counts rebounding) . Had more blood work today to find out that not much has changed since Monday and my neutrophlis- they are even a tad lower from .86 --to .60- More blood work on Monday - I worry I won't be able to stay on this protocol. Onco said we just have to wait and see if we can get some sort of pattern and hopefully stay with stable scans. My bone marrow must really be compromised- more blood work on Monday again---
Carol
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Carol, sorry to read this, I've been keeping up with this thread because I should be starting Ibrance on the 12th. My onc said that blood counts go back up pretty quickly, is this really the case? I guess you don't know for sure. Please continue to post how you're doing, I'm really interested. Are you having many other issues? sorry to ask so many questions... cheers, dee
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Dee, I have been on Ibrance/letrozole (first line of treatment for me for stage 4 ) since end of October 2015- great results so far.. stable and healing of mets- last scan was at end of May- Unfortunately for me, my bone marrow has taken a beating (probably due to rads in Nov-Dec) and I am now on lowest dose and they are tanking a week earlier than what I would like-- but guess what? I feel fine.. a little achy after xgeva shots but if the blood work did not show neutro at .60 today, I would have never known- I walked 1.1 miles today (for me that is awesome) My biggest SE is tender scalp- My ILC is slow growing... took 18 years to come back- I am hoping I can still get this drug figured out so I can stay on it.
Carol
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"I am hoping I can still get this drug figured out so I can stay on it."
I hope so too Carol. thx, dee
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Carol - does it matter if your neutrophils are low when you feel fine and you are not getting infections?
Shetland - i am sorry you are dealing with that ambiguous scan. many people define progression as a 20% increase in size, so in some sense you are stable but of course in some sense you are not. oy. my next scan is now schedule for the last week in july. oy.
do you have any ideas on what your next move would be if you ever do have proven progression. I keep thinking about this trial which adds keytruda to palbociclib. it may only be in los angeles, but i don't quite understand how these trials work.
doublet and triplet therapies have had some interesting successes.
>Z<
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Has anyone had decreased WBC's and hemoglobin when taking Ibrance? Mine have decreased slightly but my oncologist wants to check it again next month and if it decreases to a point of concern, he says he'll have to lower the dose.
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Z, As I understand it the protocol for Ibrance is a requirement per trial that your neutrophils must be close to 1.0 to start next cycle. I had rads to 3 areas at the end of 2015. With that being said, I'm not sure if the MO I have now (Dana Farber) would have done rads to my rib area etc. as maybe now my bone marrow is too compromised and that is to why this is happening. I have fingers crossed that I will be one of the ones that can do well with 14 on 14 off approach. I also will ask about the other two sister drugs that may not cause me to get the neutropenia. I also am one of the ones whose TM were almost normal range before any treatment was started right when mets were at their worst. My scans are stable and healing in area that there was not rads but TM go up each month. Real test will be scans at end of August. May scans were great. The only SE I have is very tender scalp at times and a burning pain that comes and goes.
Judy- Ibrance is designed to lower your white blood cells. I don't know of anyone that does not have lowered white cells that is on this treatment. Now don't quote me on this but when I saw my MO a week ago I was really upset when she said I had to stop after 13 days on. Not her exact words but she said the drug has achieved what it needs to do for you in 2 weeks instead of three. I do go to Dana Farber and she said this is not unusual to see this and still have success with the protocol.
Happy 4th to everyone and happy Canada day to my Canadian sisters.
Hugs Carol
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Carol - It sounds like you are highly sensitive to Ibrance and 14 days is enough. Excellent. Let us know how it goes.
Just finishing my week off of Ibrance and I feel like crud. Fatigue, headache, nausea all week. Saw my oncologist yesterday and she says it's carry over crud from the 3 weeks of ibrance i finished the previous week. I suspect horomone supression is a piece of it.
I don't want to live like this. I am lucky to have this treatment, to be improving. Relative to others I am having an easy time. But this is not the life I had envisioned, being sick like this. Yech, it's going to be a frequent thing for a long time. I'd like to get better. I'd like to get off these drugs. Just sayin'.
>Z<
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Ladies~
You've been so supportive and encouraging. I wanted to pass along a webinar I watched this evening given by Dr. Maura Dickler at Sloan Kettering. It was highly informative and gave clear explanations of the MBC and clinical trials. A lot of attention was given to Pallbociclib and other cell cycle prohibitors.
Here's the link, if interested: http://www.sharecancersupport.org/share-new/learn/...
Take care,
Gracie
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