Ibrance (Palbociclib)
Comments
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Lynwood, Aurora and rpoole, LOVE seeing your great news!!! Please don't ever feel unsure about sharing it. While we don't all respond to the same meds, hearing that someone is stable or NED is strong motivation and hope we all need!!!
Z, thanks for sharing your supplement regimen. I take several of the same things. I also recently had extensive blood work at my local ND's office and I'm seeing her on Friday to see what it divulges about my overall health. As far as the grapefruit juice, it's my understanding that it increases the effects of Ibrance, so actually can make you quite sick, especially (I'm guessing) if you have a rough time w/Ibrance. Not sure I would experiment with it personally, and I'm even careful to read labels on mixed juices, etc., to be sure I don't inadvertently ingest anything grapefruit. But you are so right about each of us being very different in how we react to things.
Singlemom, as well as being NCI-designated, UCLA is very into integrative medicine. They actually have sizeable departments within their med school dedicated to Integrative Medicine and East-West medicine, which is one of the reasons I felt very comfortable there from the start. When it comes to supplements, my UCLA onc has never told me not to take something I've asked about. Her answers are often something like, there hasn't been adequate research for me to recommend it, but I have other patients who use it (MM, for example). Or, I don't think it's harmful (when asked about curcumin), but there are no studies on how it can interact with Ibrance, so if you don't really need it, maybe you can do without it. In that case (curcumin), I feel I do need it because it makes a huge difference in my joint pain, so I take it. Had she told me absolutely no, I could have looked for an alternative. Oh, and they also have a supplement boutique right at the main medical center, and they encourage you to meet with their integrative doc to guide you. This link shows some of the well-vetted brands they carry. http://www.simmsmanncenter.ucla.edu/index.php/prod...
HLB, I think you should consider yourself fortunate that you haven't had many SEs from Ibrance! And I only get tested once a month too, initially on day 28, but now whenever I get my Faslodex shots, which is out of sync with my Ibrance cycle due to having to wait a few extra days each month to restart. But as long as you don't develop a grade 3 neutropenia, you learn to gauge when to restart.
Cathy, your skin rash sounds like might be due to lowered immunity. Hopefully, once you clear it up, it won't be an ongoing SE. Ibrance is a weird drug in that way. Some SEs pop up during one cycle, then never again.
momatt, I just wrote a lengthy response to your question on the Bone Mets thread.
Hi to everyone else here in Ibranceland! I'm just finishing up round #10 this week and TMs continue to hold stable!
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LovesMaltese - I've order a compression sleeve for my left arm (cancer in left breast and armpit). I have been told it is most important to wear it during exercise. I will do that.
Momallthetime - You understand what is going on better than you let on. The feeling confusion is pretty normal given the emotions associated with this information. But you've totally got a handle on the facts. I'll write back what you are saying in your post.
Dani seems to have multiple types of cancer. Some tumors are responding to treatment but some are not. That suggests she has possible new types of cancer.
Given the complexity of the cancer Dani has and the uncertainty in the imaging, you can't be sure that all the changes in tumor size indicate progression. IMO any changes of less than 5mm are not conclusive. So there is a lot you don't know.
1.5cm lesions in the liver are considered clinically insignificant in the sense that they do not effect her health. I have a bunch of lesions in my liver. All less than 2cm. They don't effect my health. On the one hand, she definitely has new metastasis which suggests that some of the cancer has mutated into a form not response it to her current treatment. That lesion is too big to be a CT blip. That is a clear warning sign that you need to rethink your treatment plan. On the other hand these small lesions are not an immediate health issue.
I would definitely discuss the pros and cons of biopsy with her doctor. Will it give him information that could change his treatment plan?
When things get this crazy, it may be time for one of these tests that analyze the genetics of Dani's current cancer. The word for this is personalized medicine. There are several tests. One of them is Foundation One. I still don't understand which one is best for breast cancer. This is where I would find a doctor that thinks about this and get their advice. This type of testing is currently not generally recommended by ASCO for advanced breast cancer, but with all this mutation going on with Dani, you may be in a unique space. Start asking whether it makes sense to biopsy that liver lesion and send it out for genetic testing?
There are many interesting clinical trials going on. The question is whether they are good for Dani. I would get your doctors opinion and second and third opinions at this time. There is so much going on that you will be sure to get very different opinions on what to do. It's important to get those opinions and consider them. Use your god given and obviously powerful intellect to understand them. And then pray. The solution will come.
Find some time and ways to process the powerful and emotions so you can get back in the drivers seat. Could be as simple as a walk.
>Z<
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Well, as you guys must have noticed, I did NOT go in today. Impossible.
Z you made me cry and laugh!. Pray for sure, although Dani is passed that. But I know better than to pressure her, can't force that on someone. She knows I do. Love this writing back to s/o. Powerful, girl! I do and I don't know what's going on. I stretch my imagination. And I have this site. Re: F1, she actually had that done Jan.15, when the aggressive progression was in motion (actually it started a few mos b4, but exOnco took a bit to believe). That's when it showed a change in HER2 status, from neg. to + .
And then in the beginning of this yr, new Onco sent a blood sample to Guardant360 (actually I think Deanna mentioned it to me), and it showed it was still the same. It's been just bones 3 yrs, but now...I mentioned it to Onco, he is not running with it. To be fair, he is waiting for Rad Onco to tell him what he sees. Well, it's 2 lesions not one. And I do understand that right now she is good with that, but first it was a shocker bcs we really thought this combo of 4 txs is gonna do some knocking, and also it's a new beast! Still have the mesenteric in the left side, that is slllloooowly growing, and they have no idea what to make of it. And the progression on the skull, so...crazy stuff. But some less SUV on many areas, even a 2gm Onco is happy.
Z so glad you are getting some relief. Surgery, you did not wanna do it? And btw since I found you, I am supporting D to exercise, she is going hiking this weekend! (x worry nothing crazy) I used to be scared with all the bone mets, she will break something.
Deanna thx, yes I read it. And took it all in!
Still don't know how to tell her. Aghhhh
Aurora, rpoole lynwood, terrific!!! much hope to all of us!
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momeallthetime -
You got a great response on the Bone Mets Thread. . The recommendation to go to Dana Farber really resonated with me. Dani's situation has gotten complicated. That's when the big medical centers prove their worth.
>Z<
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Momallthetime, it is so heartbreaking to read this news. As a mom of three daughters and a son, I'm not sure I could handle what you are going through. I think it is so much harder to be the caretaker rather the patient. I really have no wisdom to offer other than to say my gut feeling is that the small spot in the liver is probably not a monster. I will be keeping you and your daughters in my prayers and praying that God gives you all the strength you need to deal with this and find healing and that you sleep well tonight. Things are usually easier to face after a good nights sleep. Please keep us posted. There are so many here who care about you.
Faith (in the future )0 -
I am so happy for all of you that are getting a great response from Ibrance! Good to hear you are cruising along Deanna! I get my scans on Friday and am praying that Faslodex is still working and I can also start back on Ibrance. I am pretty worried as I have had some new pains in my side that make me nervous. But as some say, it could be the tumors dying! I am anxious to get an extra boost. I am pretty excited to get the summer off of work and get back to some serious exercise myself. I have been an office chair SLUG and can feel the results for sure. Thanks for the inspiration Z! Momall the time, I too feel like I am just riding a huge wave and don't have the time to research and read. But plan to "catch up" as well. You do have a tough time going on.....Hummingbird, How are you and your Mom doing?
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Can you sometimes feel pain or discomfort if/when your tumors are dying?
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I am starting cycle 11 of ibrance and letrozole my tumor markers dropped 7 points this month.I am beginning to have considerable pain in my fingers which I think is from the ibrance, tired all the time. I'm off someday to get some dental work done, crowns and root canals failing that are 8_10 years old, waiting to be scheduled to have 4 teeth extracted and then implants. Dentist said a bridge would be a lot more complicated with many hours in the chair which causes me extreme back pain from where I had fractured t8 in the past.
Congratulations to all with good results.
Marilyn
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Eelder, I have only read speculation about pain and dying tumors. When I was first diagnosed I started to feel rib pain but my scans came out improved. Now it seems I have new pains, nothing terrible but slightly elevated. Tomorrow I have a PET so I guess we'll see.....513 can you get extensive dental work while on Ibrance?
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Marilyn I've had a sore tooth off/on for the last month or so. Nothing shows on X-ray. Dentist thinks root canal but I'm leaning towards just pulling it and be done. It's a back molar. MO said to watch counts. Looking forward to hearing how you fare.
Mom. My liver popped up with multiple small lesions. Mo said he would be happy if they stayed small. Couldn't see them on last scan after ibrance. Wish the same for Dani. Sorry it's so complicated.
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Hi Marilyn and Zills,
Just a note - if you've been on bone strengthening drugs for bone mets, be really sure to clear any major dental work with your oncologist as well as your dental team.
I don't know if it's only the bisphosonates that lead to ONJ (osteonecrosis of the jaw), but I've heard enough first-hand reports from those diagnosed with ONJ during/after dental work. Google it, if you want to learn more or check the bco archives.
It's not just our immune systems affected by treatment.
healing wishes for all, Stephanie
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artist, wishing you the best with your PET scan. Keeping my fingers crossed for you to get great results! Thanks for asking -I'm doing ok. My Mom has to lower her Ibrance to 100mg and wait another week before restarting due to low counts, stomach cramps, and mouth and nose sores. Hopefully she will do better with the lowered dose.
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Thanks Hummingbird! Just OK? I think about you a lot and hope you feel better than OK soon......Got the scan over with today, always a stressful day. Will get results Monday, an even more stressful day.....Hoping for good news too. If it is I will start 100 mg Ibrance too and see how that goes. Tell your Mom I got nose and mouth sores too on the higher dose. My mouth cleared up pretty quick but my nose was a constant irritation. Hope the lower dose does the trick...
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Artistathea. Hoping you get good scan results on Monday!!!!!
Babs
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Hi~
I'm new to the message boards and in need of information and support. My 72 yr old mother in law (MIL) is newly diagnosed Stage IV ER+/PR- HER-2- (recurrent from 1993) with mets to bones ("destructive lesions of the sternum and manubrium" and metastatic deposit in T8 vertebral) and lungs (pulmonary nodules, as well as both hila and the mediastinum).
She lives a few states away from my family (we are her ONLY) family, and we are trying to get clear answers about care and prognosis. We have rented an apartment for her a block from our home and met with a local oncologist. We are trying to cover all basis to give her the best care, emotionally and medically.
She started Letrozole this week and is waiting to start Palbociclib and Xgeva soon. She is slated for a brain scan this Tuesday (she was supposed to do it two weeks ago but she refused to go). She has a difficult time accepting the diagnosis. She won't ask questions and would like us (my husband or me) to communicate with the doctors. We are happy to support her way of dealing with her disease.
The metastasis to the lung is the part of the diagnosis that scares us the most. I attended her oncologist appt. Thursday and he was clearly concerned about the lungs. She was originally diagnosed with lung cancer and the second bronchoscopy revealed breast, not lung as the primary. (Bottom line, the doc say the scans look like primary lung, it's spread like primary lung, but the path revealed breast). There is still some question about the lung cancer and a chance we're facing two cancers.
Lastly, she has what the doc called Thursday as possible metastasis coming off her rib cage. PET Scan showed a possible "healing fracture" but now (in recent days) it's protruding and causing her pain. Should we be worried? Can a metastasis grow that quickly (in a month?)?
If anyone facing a similar diagnosis, has advice or feedback to my questions, I'd be so appreciative. Thank you so very much.
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graciegirl, I'm so sorry about your MIL's dx, but I am so impressed that you've moved her nearby and immediately stepped in the support her.
At the moment, it sounds like she's on an appropriate tx path, assuming her primary is breast. But the fact that there seems to be some question about that makes me feel it would really be beneficial to have at least one appointment at an NCI-designated cancer center, where -- because of the number of specialists under one roof -- they will be in the best position to unravel her situation and find answers to what sounds like a complex situation, or reassure you that what's been done to figure out her dx has been sufficient. Except for the question about lung cancer, so many times "things" seen in lungs turn out to be artifacts from previous illnesses, etc., and not malignancies. But an institution that sees the most cancer is most likely to have seen this scenario before and will know what needs to be done to ensure the best tx plan going forward.
Here's a list of NCI-designated cancer centers. Hopefully there's one not too far from you. You should be able to get an appointment quickly given your MIL's dx and your concerns. After you get some answers, you can decide whether you want to keep her tx there or local or a combination of the two. But this absolutely sounds like something that needs the input of NCI-caliber docs.
http://www.cancer.gov/research/nci-role/cancer-cen...
Hope this helps! Please keep us posted! And don't give up hope! You will be amazed at the turnaround that can happen with proper tx! Deanna
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Deanna~
Mant thanks for your thoughtful response. The good news is the most recent diagnosis came from an NCL center (she lives near one and we live near two). And our docs in the two cities are willing to work together. We want her to be able to stay in her home until she's ready to move close to us more permanently. In the meantime, she will go back and forth at her leisure. But we knew it was imperative we have a doc near us, as I understand close monitoring for low white blood counts are important when taking Ibrance. I was thrilled how willing our local oncologist was to allow her to have her bloodwork or even get scans or Xgeva injections while she was here.
Can you explain what "grade" means and how we learn more about nodes fractions I read under people's profiles?
Thank you again for your kind support!
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graciegirl, bc is graded 1, 2 or 3 to indicate how fast the cells are dividing and how much they've changed from looking like normal cells. The higher the grade, the more potentially aggressive. Here's a link to a more complete explanation. http://pathology.jhu.edu/breast/grade.php
Nodes are noted as # positive / # taken. So if someone had 15 nodes removed and 2 were positive, it would be written 2/15.
Glad your MIL has been going to an NCI facility. I'm not clear then on the question about a possible lung primary. Is that still TBD or ???
And yes, Ibrance requires at least monthly CBCs to be sure the low counts it tends to cause don't go dangerously low and rebound as they should prior to starting a new cycle. Some oncs test bi-weekly or even weekly during the first cycle or two, but as long as she's not having issues with rebounding, monthly testing is what I and I think most of us have.
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Graciegirl - I would just add that it takes time for you and your MIL to process the diagnosis and its consequences and all the possible complications and uncertainties. Cancer turns your life upside down. The key thing is to start some reasonable treatment under the care of a solid oncological team as it buys you time. The good news metastatic ER+ breast cancer has an effective go to first line treatment right now: Ibrance and letrozol.
Whether she responds to Ibrance/letrozol in a 3 to 6 month time frame will answer a lot of questions about what kind of cancer she has. Just keep in mind that the mean time to an objective response with Ibrance is ~4 months. It can take 6 months to do anything.
Keep asking questions as they come up for you on this thread. These ladies have been through everything. And more.
>Z<
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Ladies~
Thank you so much. I'm so thankful. My husband and I are my MIL only family, so it really fails on me to navigate this journey. While I know there's no much I can't control for her, educating ourselves is the least we can do for her. Thank you for helping me that.
We're just so scared about her living alone. She's clearly exhausted (despite her brave and positive attitude) and I fear she's getting small details confused more and more (understandable for anon facing such stress but still a growing concern for us).
We've been promised a phone call Monday morning from her managing oncologist with info about when she'll start Ibrance. And her brain scan is Tuesday. I HOPE by the end of this coming week, she will have a full diagnosis and be able to start her treatment.
Deanna, the question about lung as primary still floats bc of some confusing first pathology. The oncologist said they are treating her as "breast" but will know if there are concurrent diseases as soon as treatment has time to take effect. At first, they told us it was definitely Stage IV lung. It's been a roller coaster of emotions over the past six weeks.
Again, I'm so appreciative.
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Gracie girl- You got some great advice from Deanna and Zar- What a great DIL you are! I would like to share with you that I had a recurrence after a very long time as well- Originally diagnosed with ILC in 1997. It returned to my bones and it was found by a suspicious MRI after being screened for degenerate disease of the spine. I had two bone biopsies that both did not carry the er/pr + but I was treated as though it was. Glad to report that I have been stable since October (you can read my signature line)- so tests always do not provide all the information needed.
I am a little confused- Are they suggesting that your MIL could have two different cancers at the same time? A new primary lung and a stage 4 breast cancer from many years ago? Did they mention to you at all that the lung nodules could be inflammation or did they do a biopsy of the lung and found breast cancer cells without revealing a primary new lung cancer cells there?
I would always get a second opinion no matter where I first, even if it was MDA-- if there was any question of what they are not sure of I would do what I could to make sure that someone could give me a definitive answer. Ibrance works slow... and I am doing well on it, but it's not really a walk in the park- fatigue and aching bones slow you down some. I am not complaining and hoping I can stay on this treatment a long time.
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Graciegirl, you have already received some good advice but I would like to give you some positive news. I was diagnosed in 1991 with breast cancer, ER+PR-, stage 3, had a mastectomy, chemo and five years of tamoxifen. In January this year, it was discovered I had breast cancer, metastasized to my lung which one doctor thought looked like lung cancer. For the record, I am 75 now. I was given Ibrance/letrozole just about two weeks after it was discovered. The first PET Scan after three cycles of meds showed a great response and tumor reduction, so I am very hopeful that I can live a long time with this thing. My doctor has said if one treatment doesn't work , that are many others. I too was very depressed by the shock of this thing returning but as time goes on, I am getting used to the side effects (mainly fatigue) and feeling much more hopeful. The forgetfulness is probably stress related and also what I am calling chemo brain caused by the letrozole, but it should be mentioned to her doctors.
Maybe you can tell her all this and it will help her in some way to deal with this. There are many women here living with this Stage 4, MBC for a long time, life is not over for her. I also believe greatly in the power of prayer. I truly can sometimes feel my spirit being lifted up by all the people praying for me. You are a great DIL and she is lucky she has you to do all this research for her. It can get overwhelming especially when you are feeling so sick. Right now, I hope she is not living alone, I think I would have had a much harder time if my DH wasn't here with me. I will keep her and you and her son in my prayers.
Faith (in the future).
P.S. The Ibrance is a very expensive drug but don't get too upset about it because there is financial help available. The Patient Access Network (PAN) foundation is a charitable trust that provides grants to cover the co-pays of women on Medicare with MBC. I believe it's mostly funded by the drug companies and the speciality pharmacy that provides the drugs will be able to help her get this grant.0 -
You all are so supportive and helpful. Faith, thank you for sharing that many are living with MBC for a long time. I think we all need to be reminded of this. Life is not over. And like you said, if ibrance doesn't do the trick, there are other options. Options are truly what give ME hope. It's so scary, but I truly believe a positive attitude, a fighting spirit, and prayer make a big difference. Maybe I'm crazy, but I believe this.
I just read Radical Remission. Wonderful book. Did someone mention a thread going around about this? I have to say, if you haven't read it, I suggest looking into it.... hard not to have a lot of hope after reading it.
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I haven't posted in a while, but I am hoping someone here can help. I have been taking Ibrance for the last year. In the past few months I have had a scratchy throat and my O2 Sats have dropped as low as 68%. Just two weeks ago, I was put on Oxygen as needed. I was orginally taking Tamoxifen, they switched that to Aromasin after I had an oophorectomy and just this last month started Faslodex. Anyway, the oncologist and pulmonary doctor are thinking these lung issues are being caused by the Ibrance (possible pneumonitis). Anyway, Tuesday I will be talking with my onc to decide on a new treatment other than Ibrance. Has anyone else had this issue? My tumor markers are only rising like 10 points a month over the last year, so I am scared to switch my treatment. Does anyone know what other chemo meds they might prescribe for lung mets? Thanks in advance. Any advice is welcomed.
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Hi,
I know this is the Ibrance topic/hread and I don't belong, because I'm not taking it...but!
I've many years experience with lung and pleural mets and this might be of help?
Is it a new lung mets primary or unusual presentation of MBC (metastatic breast cancer)?
In 1999 I was diagnosed by x-ray with something at the top of my left lung. Because I had many, more life-threatening health challenges, it wasn't biopsied and I didn't change my treatment approach (anthroposophic medicine and Iscador). My mainstream oncologist and I decided to wait for it to cause trouble before investigating, so I was x-rayed or scanned very infrequently, usually for other things. It didn't change much and I lived well with it.
In 2008 pleural mets and effusion presented, so I had my first PET/CT - the region lit up. Again, we decided to treat the whole system/disease by adding Femara/letrazole to the mix. I had a good time with this drug for 3 years before my lung symptoms increased again.
In 2012 I had another PET/CT and that lesion was not only bright, but bigger, spreading into upper chest, shoulder bone, tissue and muscles. It looked and acted like lung cancer and the thoracic surgeon who planned to seal my lung linings with a VATs Pleuradesis procedure swore that the pattern wasn't like breast cancer, but lung, probably caused by the radiation to a very broad area of my chest wall.
Well, he did the procedure and the tissue wasn't biopsied to determine whether breast or lung...but, since that unusual finding hasn't killed or crippled me yet and breast cancer treatment was mildly effective, we haven't gone digging for another problem.
My approach is unusual, but I made peace with cancer in my body decades ago. I'm on the low end of the scale for imaging, scans, aggressive treatments and even new treatments like Afinitor/everolimus and Ibrance/palbociclib. Those things just don't make sense for my unique situation, since I want to live and die in peace. I only do what is necessary to improve my quality of life...somehow or other, this approach has given me many years of well-lived life.
Just speaking up that doctors don't know all and can't cure all.
They are human beings practicing an ancient art with known tools and new ones whose power isn't fully known. Forgiveness for medical limitations is a big part of my health approach!
healing regards for all, Stephanie
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Radical Remission Book Club by Kelly A. Turner, Ph.D.
https://community.breastcancer.org/forum/79/topics...
Well worth reading and contemplating, if not as a cookbook for a cure, as insight into what others have achieved and what they credit for their success.
well wishes, Stephanie
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Stephanie thanks for sharing your story and book with us.
Ziz
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Hello all!
Just popping in the introduce myself, I recognize many names here from the bone mets thread which is where you will normally find me. I will be starting the Palestra trial of Pablociclib. Everyone will get the drug, but they are trying different dosages, 100mg, 28 of 28 days, or standard 125mg, 21 of 28 days. I will probably be starting in mid July.
I will try to go back & read this thread, however it is 150+ pages, so if you have any tips or tricks for me, I would love for you to share with me. thanks all! cheers, dee
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Has anyone who is ER+ been told you should NOT consume turmeric? The benefits of turmeric seem to be huge, and I'm adding it to my food a lot these days, but is there any concern? I haven't heard of any concern, but I thought I'd ask.
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GG27 I recognize you from the bone mets thread as well. Welcome to this thread which I've joined recently. I am in my third 28/7 cycle of Ibrance/faslodex and doing well. No se's to complain about except for some nausea which is under control with 8 mg Zofran. My TMs are dropping/stable. I hope you have a good experience too.
Aurora
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