Ibrance (Palbociclib)
Comments
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lalady- Your trip sounds wonderful! Hope you enjoy every moment💃🏻
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Well Carol, we will have to take our Q from some of these perpetually positive women and get on board! I know a lot of the stats are outdated and many things are being developed. I need some books on how to bolster my positive thinking! You ladies help so much.
cling, I did see a liver specialist who did a bunch of tests for Hep, Aids, all that junk, all negative. Pretty sure it is the Ibrance as they started going back down on my week off again. Hoping the 75 mg will hold me steady or at least low enough to take it anyway.
Deanna, As of yet I do not have bone mets just liver. However, I did have a bone scan that showed Osteopenia so when I was on Femara she was going to start me on Xgeva. I would love if you sent me what your tea has in it. Also heard from Longterm that Milk Thistle is a good liver cleanser. I threw out that book today. Didn't even list it on Amazon like I would normally do as I don't want some other poor woman to buy it. I have Radical Remission from when I first was diagnosed and plan to restart it tonight. Yep Deanna, we all just have to keep on keeping on!
eelder, That is pretty interesting about surgery. I can see the rationale there. I think my next opinion is going to be with UCSF as there are supposed to be two outstanding women there that are breast oncologists. My current Onc just suggested this and I sort wish she had recommended that first instead of UCD.....That is awesome that your liver tumors are shrinking!
Iwrite, I totally get the resetting dichotomy! As soon as my eyes open "IT" goes straight to my mind. I then have a choice to spring into action or turn on the TV and wallow. Most days I try and get going. But if there is a good old sappy classic movie on I'm a goner. LOL!
Thanks Claire, Have a fabulous trip and post some pictures when you get back! Wishing the best as you and I and Carol get the scans in Aug!
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Artist... is Hope Rugo one of them? My oncologist works with her at UCSF. I hear amazing things. Pretty cutting edge. I know there's a TIME magazine article about breast cancer and UCSF from last fall. I'll have to dig that out and share.
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Eelder - Thank you for sharing the your oncologists thinking process on surgery. What I heard is that she feels that if the systemic therapy has the metastasis firmly under control, then taking out the primary tumor may close the door on future spread. I certainly understand the rational for surgery in that case. Clearly, she sees you in a very good position. That news is as joyous as your pet scan. Certainly worthy of some more Pinot. I've done a little happy dance on your behalf.
It is extremely interesting to me that she is considering you for immunotherapy trials. Would you consider filling out your diagnosis and treatment history in your profile and making it public? I'd love to have more context for her thinking process.
Any details or specifics you could share about the immunotherapy she has in mind would be of great interest to me. Your oncologist seems very cutting edge. I am very interested in anything you learn from your team about treatment strategies and options.
All - I am middle of the last week of cycle six and here is my SE Update. Fatigue greatly diminished. I do think the loratadine (Claritin) helped. I've taken it through this cycle. I still feel waves of nausea and shakiness, particularly in the afternoon. But it's been easy to exercise daily and keep up with my busy family. I just need to sit back and chill a couple times a day. In any case, this cycle was much better than the last two. I would live this life gladly for a while or as long as I have to. Last cycle was a challenge and had me feeling hopeless.
CT/Bone Scan Tuesday. Off to Seattle on an exploratory mission to the Seattle Cancer Center Alliance the following week. Hope to find myself one of those fantastic, cutting edge oncologists like the ones you all have. Treatment in NM has been good and the Ibrance/letrozol feels right, but I want to have a plan in place if I see progression. The options after Ibrance/Letrozol are not clearly defined yet.
>Z<
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Lalady. Enjoy!!
Babs
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Hi lalady,
Thanks for checking in.
How exciting that you've made it to tour time and that you're fit to travel.
Lalady, you've really done marvelously given all the challenges and I'm happy and excited that it's time to go soon.
Want to say that your engagement with your preparation process has been inspirational - you've truly done the impossible thing.
Now go and enjoy your journey - may all your adventures be engaging and ultimately enhancing.
warmest healing wishes, Stephanie
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Hi, everyone.
New to this protocol. My oncologist is submitting the request to my insurance to get me on Ibrance and Faslodex. Still catching up on the topic by reading every word of some pretty substantial threads (thanks, all of you, for sharing your experiences and research.)
Hi, to artistatheart, and I really hope your 1 year Cancerversary has you feeling better, stronger and more hopeful than you were, twelve months ago!
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Hi Z! I don't have too much information regarding the immunotherapy trials, but she mentioned the one at UCSF using Keytruda. I did not catch what other drugs were being paired with it. She wants me continuing with ibrance/letrozole. We'll scan in 3-4 months. We might need to stay on treatment longer, but at some point I will have a lumpectomy and then radiation. If the liver mets are still there we can do liver ablation. Whenever I stop responding to ibrance is when she'd move me to the trial at UCSF. Of course, who knows how long this would be. Years? There are people on this for 6 years so it's hard to know. She also mentioned that if I do respond to this for a long time there's a high likelihood that there'd be another treatment in existence that would be better.
Her feeling on immunotherapy is that if we can get a metastatic patient to NED (or even close to it), then immunotherapy holds the POTENTIAL to completely eradicate the cancer. As we ALL unfortunately know, we are not curable.... yet. She feels immunotherapy could be the ticket for this, but she acknowledges we don't know enough yet, but they're working at it! I spoke to another oncologist who is a friend at my swim club and she too believes heavily in the potential power of immunotherapy. She also agrees there's more in the pipe treatment-wise so either way.... OPTIONS.
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eelder- thank you for your post. It was exactly what I needed to read today. I've been fairly upbeat since dx in March, just hoping everything was going to be under control soon. Since my first rounds of scans since starting on my meds showed such progression and my doc changed the drugs, I've been slowly going down the darker path, just thinking my current meds won't work either. I've had some new aches, not pain, with the addition of Faslodex and Herceptin, part of my thinking is the cancer is getting angry before it dies, but a larger part fears it's further progression. The knowledge of more options and hearing such positive talk from oncologists gives me hope.
Deb
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Deb.... keep the hope. Keep the optimism. 3 oncologists I've spoken to liken this to a chronic disease. Everyone's path will be different with uncertainty along the way, but there's a lot out there. We have VERY good reason to believe we can redefine what Stage IV BC is and means. I don't have the drug names on me at the moment, but Eli Lilly and Novartis both have drugs similar to ibrance coming out sometime in the next couple of years, perhaps sooner. Who knows? Maybe one of those drugs will be the "next best thing." Sending love to all.
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Deb - we have options, but you should make sure that you have some connection with a major cancer center if you finding yourself burning through the first two lines of treatments for your cancer. My local NM oncs are very smart and good clinicians but after I get through the NCI standard of care, I am going to need more. The kind of treatment options eelder is being offered are very cutting edge and not being discussed here in NM. I am headed to Seattle to check out the Seattle Cancer Center Alliance for this purpose. If I don't find the expertise in Seattle, I may just head to San Francisco ...
It's hard to be optimistic when you don't what your options are if your current treatment fails. It may elevate your mood to work on figuring out what happens next. It won't come from an NCI manual at this point, but don't get discouraged. An oncologist working in a major center at the leading edge of cancer treatment may have some good options. In any case, anything you can do to take action on your behalf, from a walk in the park and a big plate of cruciferous vegetables to organizing a second opinion, can help one's mood.
eelder - that is such an interesting immunotherapy strategy. Most of the current trials seem to be on people who are late stage rather than people who are doing well. But from what I have read, I really thought it would make more sense to use some of the immunotherapy drugs on people who are doing well. I do think you have a great doctor. I am interested in everything you learn from her. We'd all feel much better if it was clear what happened if and when our cancer develops resistance to Ibrance. Unfortunately it is not yet clear.
Welcome to Tribe Ibrance Ninetwelve. Dealing with the insurance and the specialty pharmacy is one of the worst side effects of this drug. Every time I get a new cycle, I get grilled by a telephone nurse about my side effects. Why? I have no idea. They seem to know nothing. And, every three or four cycles, the drug has to be re-approved by insurance. Somehow this takes everyone by surprise.
Once you actually get the drug, we want to know how you are doing.
>Z<
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hi all!
I'm cross posting from the bone mets thread. I'm feeling horrible, this started last night, the immense bone pain & a migraine headache. I almost passed out this morning coming upstairs. Had a fever of 100.7 this morning. I don't know if I picked up an infection from the hospital yesterday or if it's somehow the combo of Ibrance/Femera & my pamidronate infusion. I took a tylenol/ibuprofen combo & my temp has dropped somewhat, but I still feel very wobbly. Could it be a reaction? or do you think I picked something up? I don't want to go to emerg if I don't have to, it involves ferry trips etc... thx, dee
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i am not a doctor, however ... if you can't get the medical advice you would like in a timely manner, I would go off any drug you suspect (ibrance/femara) at least until you can talk to your doctor and make a decision together.
also, there was a period when i had an undiagnosed UTI while taking Ibrance. the combination of the effects of the UTI and the ibrance was really too much and i had a very bad week. In hindsight, my doctor would have taken me off the ibrance if we had understood what is going on. my guess is that you simply have an infection or something else going on. i don't recall if you were having ibrance side effects, but if you suspect that the ibrance is contributing, then you might consider taking a break until monday when you can talk to your oncologist.
Ibrance/letrozol is hopefully a 5+ year marathon not a sprint. these adjustments will happen.
I would want to make these decisions with my oncologist, but going into the weekend you may not have that option. My onc has given me permission to make these adjustments when I can't reach her. at a minimum you should get a plan in place with your onc for these situations next time you talk. what kind of decisions can you make yourself about dosing?
hang in there. you are in my thoughts.
>Z<
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Dee, has the palmidronate affected you this way in the past? It does some, especially if run too fast. Otherwise, it could just be the combo this time, or a virus. I agree w/Z -- skip the Ibrance until things settle down -- unless that might knock you out of the trial. If so, definitely get input from your onc before risking that.
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Hi Dee,
Sounds to me like the pamidronate infusion is the culprit. It is a bisphosphonate like Zometa. Did you just receive the infusion within the last 2 days and was it your first time getting that infusion? I got very ill after my first Zometa infusion. It can be a common reaction to the first infusion. Fever, chills, vomitting - classic flu like symptoms. You can also feel bone pain from it too (but the letrozole can cause that as well).
Here are a list of side effects for intravenous pamidronate: Flu-like symptoms (such as mild fever, chills, fatigue, muscle/joint aches) may occur after treatment. Most of these effects are mild and can last up to 48 hours. Bone pain, redness/swelling/pain at the infusion site, headache, dizziness, loss of appetite, nausea, vomiting, diarrhea, drowsiness or trouble sleeping may also occur.
I would call your doctor though just to be sure.Feel better!
Cathy
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hi again,
feeling somewhat better, I've gotten my fever down to normal with Tylenol, though I'm still shaky & weak.
Deanna, the only time pamidronate has affected me this way was the very first time, I do sometimes have a reaction but not like this & certainly not with the fever. I don't really want to stop taking Ibrance but I will see how I feel tonight before I take my next dose.
I had my pamidronate yesterday afternoon. It's the first one after starting Ibrance, but I've been on pamid for over 2 years. Cathy, do you think it's the combo? It is the same feeling that I had the first time I ever had pamidronate. Bad headache, fever, chills, extreme bone pain & nausea.
I know if I call the Trial Dr & RN, they will want me to come over to Vancouver & I just can't handle a 6-8 hour trip each way just to do it all over again on Tuesday.
I'm going to just take it easy today but if my fever goes up again, I will call the local hospital which is just a short ferry ride away & see what they have to say, I just thought too, I can call our local ambulance, they are really good here because we are isolated by the ferry, they will come & check me out if need be.
edited to add.... thanks Z, I will definitely be talking to them to find out what they want me to do if this ever happens again.
thanks you guys for the help, dee0 -
Hi Dee - I just responded in the bone mets thread.
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eelder, Yes! Hope is one and the other is Michelle. I hope to get a appt. there in the next few months afters things settle down. I have heard so many great things about UCSF including how compassionate and involved the Dr.s there are. I just had another meeting with the lady at UCD a month ago which did not really produce any new suggestions. I felt it was a little bit of wasted time and resources, like maybe I went too soon. I know the Onc I see there, as well as here, are very smart and capable. I just can't put my finger on why they seem a bit disconnected and question whether it is just my needy paranoid fear or are they truly as aloof as they seem? I am going to try and dig up that article!
Z and eelder, Also on the immunotherapy subject, I've heard that any successes so far have been with Triple negative only and we are a long way from developments for any other MBC. I can see her thinking that if you are NED then it may jump in there and "clean up" any lurking cancer. Hopefully someone makes a new unexpected discovery that we can all utilize! Also, on the ablation subject, I would be interested in this too as I was under the impression that this procedure is very risky and for only a very select group of people who have only one smaller liver tumor. I hope they are discovering this to be more promising as well! Z, I hope your trip to Seattle is very worthwhile and you round up a great new team member. I have to say my insurance on the Ibrance so far has been very efficient and quick, no hassles.
GG, Boy I can sympathize with you on the effort it takes for you to get to your resources. Especially when you are having serious concerns like you are. All I can say is I think Deana might be right that just the combo of all these things. Maybe the Ibrance in lowering your WBC just opened the doors for either worse SE's or a virus....Hope you figure that out before the next time and are feeling better very soon.
Thanks NineTwelve, Most days I do feel more hopeful than twelve months ago. But then some days I think "The longer I go, the more likely I am to develop bad problems".....Then I go BACK to the thought that the longer I go the more options we will have, try to remain super optimistic like eelder! That is why we call it a roller coaster I guess.
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Hi Artist! Yes, liver ablation (from what I've been told) is usually ONLY done for one met. I have two remaining mets. My oncologist said that IF one of them remains and is acting "stubborn" then we'd consider ablation. I suppose they'd do ablation on 2 mets if they were both VERY tiny.
As for immunotherapy, I heard the same thing.... they started trials on triple negative and my understanding is it's working well so far, but they have a ways to go. I do know that Stanford has an immunotherapy trial for ER/PR+, Her2-, Luminal B (which is me) and they presented it to me as a "BTW, if ibrance doesn't work we could try this.... so far the results are promising." The one at UCSF I was unaware of until my oncologist mentioned it to me this week. It's probably pretty early to know what success, if any, they will find, but she seems to think there's promise there. She's mentioned it more than once to me.
I just need to buy time on ibrance while they figure it all out!
Sending love to all.
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Dee, Checking in on you!! Hope all is resolved!
Hugs, Carol
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hi all, last night was horrible, had such a fever, was so cold that I had to wrap myself with a blanket to get up in the night! Had bad heartburn as well. But as the day is wearing on I am feeling much better, still not great, but compared to yesterday and last night.... I am not going to take ib/fem tonight either. I'm just too scared that I will have another night like last night. My trial nurse should get my email tomorrow and we'll discuss it. Thanks for everything... I'll post what she has to say. cheers, dee
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Guys thank you so much for your support. I wonder if she went off Ibrance too early now?
I don't even know how to address what's going on. Pet/Ct done. Onco EMAILED me late pm (after I emailed her that PET is done, so she should know) so she wrote that it shows higher SUV everywhere. AND progression. She could have called. I don't understand these ppl. What's wrong with them. Yes, it takes time, BUT when after a 4wk period PET/CT shows such ugly differences I THINK they should take 5 mins and call the person.I can't even…. Anyway she told her to come in for in for BT (which she said it could be next wk, and I am like NO, we will be there early tomorrow!) anywayto make sure about the therapy. Off she went on Friday.
Then we had a meet with Rad Onco for the lesion on the skull that has a life of it's own. They really wanna do Rads, but there will definitely be loss of hair and no regrowth. And it's right at the front close to the forehead. So how do you fix this? So major problem. Dani is really not happy about it. Downright angry. Onco ordered an MRI of the Brain for this week, and THEN if it's still going crazy she might not have a choice, if it's not, Rad Onco is willing to give it a chance with systemic, hopefully. (D is already working on a wig with bangs, she sent me a picture, I guess it's her way of saying she knows she might have to go that way)
Liver: innumerable lesions from 2 discrete ones! And physiologic uptake in the spleen, gastro tract, renal and urinary bladder. What does that mean? The monster is in these areas? I did not get detailed explanation. Could someone explain it to me.And all the bones the SUV is higher by almost double. And the mesenteric left quadrant that I keep telling them it gets bigger all the time. And uptake on the right Hilum. Are we talking lung here?? And nothing much on the node that doc felt! Something there but they are not sure what.
Seriously, should I go bonkers now?? What is she thinking, this so well renowned new Onco, I have to call her tomorrow and she will run the BT results with me and that's it? I really hope when I call like 9AM and tell secr that I wanna come in, that she will welcome me. It's hard to get all that through the phone!!! So now I worry about this stupidity.
They took her off Ibrance already, she is onlyon Letrozole and Herceptin. Soo nervous. I asked again about biopsy, and Onco was not keen about it. She doesn't think it's gonna show something new. Hmm I don't know, that was before when we only knew of 2 lesions in the liver.
I am stunned really, HOW could this be? And D does not know yet, I could not bring myself to tell her b4 the weekend. Docs, Onco and Rad Onco agreed that thereis no need to tell her at this point, about the enormity of the status. She knows it's not good. She did not even ask me if I got the report. We'll make a plan and then if it makes a difference for her we'll tell her, if not then we would try to push it till next scans. She is busy. Today is outing with the kids. There is not time for this nonsense!!!
I am really shaking, and it's been 3 days already. No one would know. I went about my business, doing what I gotta do. Did not tell my other girls, trying to go easy on this.
AND, wait, you know it's always interesting with us. On the way back, after literally a whole day in the city, we had a cab, and someone rear ended his car, twice, I kid you not, we are ok, the guy had to wait for the police, we left and had to take 3 trains home!!! That was actually funny!!
Everyone thank you.
P.S – Warning, I am posting the same info in the threads I belong to, so be prepared for doubles.0 -
Hi Artist,
A trip to UCSF is like a trip to one center of the MBC world - you'll be close to the brains that are thinking up emerging therapies and also to many clinical trials. Hope Rugo is considered tops in the field, runs many trials, reports at many conferences. Several of my friends have seen her - somet for many years. They credit her with being as alive and well as they are.
Two frequent concerns are -
1 - Because she's in high demand and often at conferences, she's hard to get in to see, there are long wait times when you do get there and the follow-up ball is sometimes dropped. I hear she is better for consults and that it's best to have a day-to-day oncologist to deal with daily issues.
2 - She often treats without thinking things through - remembering every single detail of every single patient's treatment history (who could?). She's also a big believer in conventional allopathic treatment and newer is better. She'll try to get patients enrolled in her trials, even if they don't want to or can't afford the time, effort, risk, etc.
Yet, I've often heard of her working long hours, strange angles, far-fetched therapies for her hard-to-treat patients. I've heard of her holding hands, crying and comforting my friends. I've heard of her brilliance and devotion in supporting her patients.
I wasn't able to see her, in spite of being a patient of her partner, Laura Esserman since '98.
I did see Michelle Melisko in 2012 to ask about options for lung/pleural mets. She didn't have much to offer me, except some clinical trials that would have required travel to frequent treatments, medical follow-up and frequent PET/CCT scans. That's just not a way I want to live, so I declined.
Our visit wasn't a waste of time, because it confirmed my course of action - a VATS pleuradesis procedure that sealed my lung linings to prevent repeated draining of pleural effusion.
Artist, hope this is helpful to you. I'm glad you're working on traveling to UCSF. May you find what you seek there!
Healing wishes for all, Stephanie
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Momallthetime hung in there, prayers for you, Dani and all your family.
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Ooy. What a night for MomAllTheTime and Dee. Sending prayers that the coming week will bring answers and peace of mind. You just have to get through this long night. One breathe, than another. Tomorrow should bring some answers, tools and options once you are back in contact with the doctors. You are both in my thoughts.
Elder, Artist - I've heard leading research saying that immunotherapy will work better on the tougher cancer like TNBC because they are more different than normal cells and therefore more visible to the immune system. I've also heard that immunotherapy worked better on late stage, heavily treated cancer, also because these cancer cells are more obviously foreign. There are some trials where they beat up the cancer with chemo before the immunotherapy in order to make it more visible to the immune system.
However, there are also very early immunotherapy trials for ERPR+ cancer and I've seen clinical trials starting for early stage MBC. I've seen posts from people on those trials who are doing well. I don't feel that they know exactly how these drugs work. For this reasons the theories don't always translate into treatment outcomes as they expect. Sometimes things work better than they expect. Ibrance for example should not kill cancer cells if it is just inhibiting a growth factor, but it does. Xgeva is a drug that turned out to prevent and kill cancer when it was really just supposed to be protecting bones.
In any case, immunotherapy trials are not for the faint of heart. When they trigger an autoimmune response, it's very dangerous. I'm hoping to remain stable on Ibrance while other brave souls test these new treatments. I send prayers out all the folks who are paving the way for us every day. LongTermSurvivor comes frequently to mind in this respect. All the doctors these people have trained ...
This is the first day of my week off of Ibrance. A little shaky. A little nausea. A bit tired. The side effects definately don't just turn of when I stop taking the drug.
Hang in there everyone. I am so glad for everyone who has a little peace tonight. We need to get everyone there ...
>Z<
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Thanks for the thoughtful insight Stephanie, that was very helpful! A lot of things I just don't know to consider until someone with experience brings it up. I have heard that she is very difficult to get in to see too and your other points make so much sense. I would not be comfortable with one who might push too hard to get me into a trial when I am not sure or ready. That would stress me out too much. Unless a trial sounds like the perfect ticket for me, like Z and eelder I would want to continue with my current line of treatment and wait for results to be more definitive. I could also imagine the traveling for follow up, excessive PETS becoming too much as well. Have to consider QOL for sure. I agree with the idea of keeping my day to day Onc. I just like getting familiar with other Oncs and centers for possible use down the road. Thanks for the information on these ladies!
Z, I have read too that immunotherapy can be quite dangerous. Sorry your week off isn't letting you feel much better. Several times at the end of my cycle, it's taken me more like a week and a half to start feeling much better. I hope to be able to continue on the 75 mg for a long while as well until something better or new comes along.
GG, what a miserable time you had.
I can't blame you at all for skipping the meds for now. I hope they have some answers for you and it gets straightened out. Glad you are feeling a little better and hope tomorrow is way better.Momallthetime, I am beyond words when I hear of all Dani's challenges right now. Why did they take her off Ibrance, low WBC? I'm so sorry you are both going through this nightmare and hope they figure out a plan of action soon. Hang in there Mom...
Best to you all!
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Dee - Hope you get some answers soon and are feeling better quickly.
Mom - I'm so sorry to hear this news that must be overwhelming. Hope you get to talk with the onc soon for more concrete information.
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Artist they took her off Ibrance, because they are starting a different treatment. Thank you for your prayers, also Zar, Mosisy the ZIZ all of you. I know.
So this morning I attempted through email first I asked her for the results of BT, all i got back is tat it's good, (really??) anyway i could follow later on in the portal. But I guess she does not spend time on the phone, we don't know each other yet, and in a way I feel we are at her mercy, so I can't demand a/t. I am trying to play it cool, I got in touch with the secr and I did ask for earlier in the wk to start the tx instead of Thursday due to the progression. But EVERYONE works in a very slow pace, and I will know when I will know if it's possible for her to go in earlier. AND i have to be very nice, if not for sure I won't get anywhere.
Yes, it's frustrating to say the least. But I don't have much of a choice. So I am working w the system. For them it's another work day. BUT the issue is I still would like to go through other options with doc bcs of the quick aggressive progression, but I think I will have to be there the day Dani has the infusion and maybe work it out that way.
Artist Zar of course it makes sense in staying the course and leave the clinical trials for when needed, i think. Best of luck for y'all
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Momallthetime, It can be incredibly aggravating to be at the mercy of all the different entities when you are just trying to get information and make the best decisions you can. We spend so much precious time just trying to make appts, getting there, waiting. It is mentaly very hard. The last 4 days I have spent at least 3 hours on the telephone trying to straighten out my next Ibrance delivery. I just kept getting passed from one transferred call to another. 3 hours doesn't seem like a big deal in the big picture. But I am trying so hard to just enjoy a few days of my summer before it ends, yet it seems all I do is go from appt to appt, wait in line at the pharmarcy. I get your frustration...
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Iwrite/Kathryn, I love your settings. That's just how I feel about it.
Hello, cs0600, nice to meet you. My diagnosis is also ILC, and I am on my 17th cycle of Ibrance + letrozole. I was wondering what kind of scans you had that did not find the ILC mets that surgery revealed.
Eelder, what a great report! Keep on. I am glad your doctors are really thinking about you as an individual with regards to breast surgery. If this is coming from UCSF and they make a good case, I would be inclined to follow their recommendation. My lumpectomy was not difficult. The re-excision without SNB was very easy without much pain at all. Look up the threads on toradol. I would want to know more about the recommendation for radiation is in this setting. That can really knock you down.
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