Ibrance (Palbociclib)
Comments
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Hi Ninetwelve! It has been a long time since I've "seen" you but I always remember you as we were dx'd so near the same time. I've been on Ibrance/Fas for over a year with great results and pretty good QOL. Hope the same for you!
My advice would be to go ahead and take it with your noon meal if that is the largest of the day. I don't think you will notice many se's until you get at least 1/2 way through the 1st cycle. If you have any tendency toward heartburn/acid reflux you may find you need to take something more than in the past. If so, try to take it at a different time than your Ibrance.
Best wishes.
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I did not experience first day anything but after about 4 days I got a weird mild sinus like headache and excruciating tooth/jaw pain of all things. It was at the site of a filling I had had done like a month before which was super weird. This was on the 125 mg. My dentist gave me a pain med but it went away on it's own after two days. The headaches subsided after about 1 1/2 weeks. I also got some mild mouth sores but a soft toothbrush and rinse helped and this went away too. All in all the worst was after about 3 weeks I began to get the major fatigue and my liver enzymes went nuts.....So now I am now on 75 mg and feel fine.
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Hi NineTwelve, I just took my first 75mg dose last night, right before bed. I forgot to take it with dinner and didn't have any problems going to sleep. I'm not going to take the chance tonight, but it seemed ok.
I took 100mg back in April/May, but after two weeks, I had so many cognitive problems and flu-like symptoms that I stopped.
I went to MD Anderson and had my solitary tumor removed, but the doctor didn't get good margins on one side. My ONC's conferred and said they want me to try Ibrance again. I'm really hoping it's better than last time.
I'm trying to catch up with everything, but you girls are an active bunch! Yay
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Robin, Congratulations on your wonderful scan results! And thank you for alerting all us Fas girls to your bad experience last time. Very scary! Is the burning and cough improving? Hope so! So glad they knew what to do and hope it was a fluke and never happens again. Wouldn't you like to stick your tongue out at the doc who only gave you 2 years? So happy for you, enjoy Las Vegas!
Hi Dee, Just a thought, have you had your thyroid checked recently? I think we tend to look at any symptom as related to mbc or/and tx and it is easy to overlook other health conditions. Hope you are able to get to the bottom of the dizzy/shaky feeling. Good luck on the trial!
Artist, Glad to hear you are doing well at 75mg after some struggles. And that I am not the only one having trouble finding the right word! I've found if I don't stress and just relax it will often come, though never without that extended awkward pause.
Welcome talpha, Lynne and 50'sGirl Lynne!
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Thanks, artist, luvmyfam, and - jobur - I remember you from when I first started posting here because you had your diagnosis around the same time. I've been stable and almost worry-free for a little over a year on just Tamoxifen. Wake up call when I had a new tumor show up in the same breast, right next to my old tumor, so it couldn't be seen on the PET scan, but I could feel it. So I'm eating tofu scramble and just popped my first Ibrance pill. Washed it down with turmeric coconut milk.
My Ibrance also came in the fancy package with the zippered bag, the pill box and the wellness journal, or whatnot. As long as my insurance is paying for it, they can throw in whatever they want. (maybe not live tarantulas.) I like the idea that someone had about chocolates. Why don't we get something nice with our scary drugs? If anyone deserves it, we do.
Nanita - my mom has dementia. Her cognitive function was much worse when she was taking statin drugs. We had those taken off her regimen and she is better. Not her old self, but definitely more alert and aware. It's true that many things can temporarily make us forgetful. I hope your mom is feeling better soon.
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Jobur, Yes I would love to stick my tongue out at the MO with the doom and gloom forecast. The burning is now gone but the cough hanging on a bit. Thanks for asking!
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hi all!
Started round 2 yesterday, now at 100mg - 21/28 day protocol. My WBC are at 1.56 which the trial Dr is happy with. We shall see how it goes, fingers crossed for a better time this time around. Jobur, I had my thyroid checked 2 months ago, it was borderline. The MO thinks that it's low blood sugar & advised that I make sure I always have a snack with me & said if that didn't help she would take another look next month when I see her again. cheers, dee
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Artist, your tooth story reminded me of something. My sister has a tooth that once every few months will hurt excruciatingly and the dentist told her based on xray that it was due to sinus problems. It goes away on its own. He said there's nothing at all wrong with the tooth but due to the location it hurts when sinus trouble flares up. She has the urge to push on it which he said she would not want to do if the tooth was bad. She gets very frustrated and wants the tooth pulled out. I gave her celebrex and it took the pain away completely when nothing else would.
I got the ridiculous huge pill box too lol. I like the purple zipper case though and will think of something to use that for.
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Haha! You guys are so funny! I guess I could use the zipper case for a cosmetics bag or something. And yes Ninetwelve, why not send a little treat along? We DO deserve it! So my TM's went down a little and the enzymes were borderline acceptable, but now on the lower 75 mg dose my neutrophils have tanked! WTH?? She wanted to pull me off but then we decide to try two weeks on two off and see how that goes. It's always something it seems...Yes HLB the tooth thing was super weird and my Onc and dentist were stumped. But it subsided a day later and never came back.....
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Is Ibrance an oral "chemo" or is it also an AI like Femara, Aromasin, etc?
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smiley, it's neither one. It's technically in a new class of drugs called targeted therapy. Unlike chemo or an A/I, it works by inhibiting CDK 4/6. Here's an explanation. http://www.ncbi.nlm.nih.gov/pubmed/26896604
Some patients and their oncs refer to it as chemo, which is very confusing. Also pharmacies put a yellow "Warning CHEMO" sticker on it so that people realize it needs to be stored away from children, etc., as well as properly disposed of if any pills go unused. That label's a good thing, but it causes a lot of confusion re. whether or not it's chemo.
That said, I don't think it's unreasonable to refer to it as a chemo-like med -- since that's something everyone understands re. a med being extremely powerful against cancer cells and probably having some SEs. But technically, it's not chemo.
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Ninetwelve, Are you doing Ibrance with Tamox now? There may be others on this combo, but it is news to me! Any talk of removing the tumors? I know this is controversial at stage IV. Glad to hear you are doing pretty well 2 years in.
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Ibrance interferes with a class of enzymes (CDK 4/6 kinases) that enables a metabolic pathway in hormone receptor positive breast cancer that can get around aromatase inhibitors. This is a dysregulation or abnormality in the metabolic process is (sorta) specific to cancer cells. A CDK 4/6 inhibitor (palbociclib) will block that end run on A/Is and therefore (mostly) target cancer cells.
The definitions of chemotherapy, like this one from the National Cancer Institute, are pretty broad and would cover any systemic cancer treatment including Pablociclib.
Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing.
However, this definition would also include aromatase inhibitors, like letrozol which are normally not lumped in with chemo.
Many chemotherapies take advantage of the fact that the cancer is dividing a lot faster than other cells in the body. The idea is to stop all cell division and mostly get the cancer. Many of these drugs you take for just a short period to deal a debilitating blow to the cancer.
Palbociclib lacks the carpet bombing aspect of previous chemotherapies, you take it a long time, the side effects are much less. I have heard palbociclib referred to as targeted therapy or a kinase inhibitor to distinguish it from previous chemotherapies.
However, when you look at the definitions, chemotherapy really just means treating cancer systemically (everywhere in the body) with a drug rather than with surgery or radiation treatment of a specific tumor or area.
Kinase inhibitors seem to me to be new class of chemotherapy. On days like today, when I am feeling pretty wiped out, avoiding the word "chemo" downplays the side effects of the drug. It's a systemic treatment that effects way more than just a few rogue cells. But I wouldn't want to use words that would discourage people from trying palbociclib. It seems to work pretty well for many women and except for a few bad days, I've done well.
I'm fine with kinase inhibitor or targeted therapy.
Cancer pushes us to the limits of language once again.
>Z<
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Jobur.... yes, surgery seems quite controversial when you're Stage IV. Seems many/most feel it's moot. That said, my oncologist (affiliated with UCSF) and breast surgeon are recommending it for me, as is my "second opinion" doc at Stanford. I presented with 3 lesions on my liver. After 3 months on ibrance/letrozole, one lesion is gone and the other two have shrunk by almost 40%. I also presented with 2 breast tumors. One was an affected node and that has completely resolved. The other one was a little over 2 cm and has shrunk almost 40%. I am now entering my 5th cycle and will be scanned again after my 7th cycle (doc said I could wait 4 months, not 3 months for another PET.... she believes there is no risk of progression which is why we're okay waiting an additional month). Hopefully my next PET shows more good results.
My oncologist feels a lumpectomy is not just warranted, but necessary. She and my surgeon talked to me at length about the risks of keeping the primary tumor. It can cause a LOT of problems for us down the road. They suspect my prognosis is very good (as is ALL OF YOURS) and since they expect me "to live a long life" (their words), surgery not only makes sense but is the smart thing to do. Keeping that tumor, even if ibrance wipes it mostly away, will cause problems in the future. In addition to surgery, one month after that I will undergo a short course set of radiation. The radiation doc I will be using here in the Bay Area is top notch and I have complete confidence in the upsides outweighing any downsides significantly. Through all of this the plan is to keep me on ibrance/letrozole.
For a while I too thought surgery was pointless, dare I say even foolish. And in some cases I see that reasoning. However, prognosis is improving for metastatic patients (ER+ HER- particularly) and so removing the primary tumor really is something to consider. Maybe it's the circle of docs I use here in the Bay Area, but everyone seems to agree.
My two cents...
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Hi jobur. No, I was switched off Tamoxifen to Faslodex. Still walking funny, three days after my first two shots.
I would be so thrilled if my onc thought surgery was a good plan for me. So far, both of the MO's I've seen have said no. Just: No. Which is hard for me to accept, because now my primary tumor has grown into my chest wall. (I tell myself, there's no proof that a surgery would have prevented that from happening anyway.)
I wonder if they don't want me to get surgery because of the tumor on my lung. (Even though that one disappeared on Tamoxifen, and it hasn't come back yet.)
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eelder - i am very interested in the opinions of the forward thinking oncologists in the bay area. i plan to visit for an opinion in the winter or early spring. in the meantime i will ply you with questions.
did your oncologists talk specifically about what problems you would have if you do not remove the primary tumor? is there any reason not to wait and see if the systemic treatment removes the tumors in the breast entirely. i am surprised at their plan for surgery since you may be on track to get rid of the primary tumor with ibrance.
most oncologists refer to the very few clinical studies that examine removing the primary tumor in the metastatic setting. there was a study done in turkey that showed a slight clinical benefit to removing the tumor. there are others that show a negative effect. the studies have every kind of weaknesses because you can't randomize women into breast surgery and no breast surgery classes. the studies end up selecting people who were likely to do well anyway. also you can't control for the placebo effect because the people who didn't get breast surgery know it. the average oncologist has no idea what to make of the studies. the folks in san francisco seem to have more information.
when surgery is recommended, it is generally for people who had very limited metastasis. eelder had very limited mets to liver only and is probably headed to having no mets. i started out 3 months earlier with more mets to the liver and a met to the bone but now i have no mets visible in CT. i am hoping i fall in the same basket as eelder, but i may not. i think metastasis to two organs (liver and bone in my case) is very different from metastasis to the liver only.
I am going to wait and see if this protocol removes all tumors primary and metastatic before i start pulling the thread on surgery. however, i am really curious why they seem to expect eelder to have a tumor to remove ...
eelder thank you for the summary. i live out in the boondock. hanging on your ever word.
>Z<
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Ladies, I wish I had exact terms to share (and I will get those), but the primary tumor can eventually cause infections, flares, massive skin rashes, lymphedema.... other things too. I sit in those appointments glassy-eyed and forget to write everything down. Both my oncologist and surgeon said it can "get nasty" and hard to live with. I think they want to remove anything-- calcifications.... tiny remnants after ibrance has done some "damage" etc. Radiation will help "seal the deal" too. My surgeon is close friends with a BC doc at MD Anderson and her studies also show a benefit, but not for everyone in every case.
Z, you are someone who I feel WOULD benefit from surgery (and I say this for you because I feel I understand/know your case better than anyone on this board). If the metastatic control is there then surgery makes sense. A lumpectomy is not hard to recover from..... I know of MANY women who have had them and all say it's fine. Everyone responds to radiation differently, so I'll have to see, but I hear it's easier to tolerate than chemo. My doc wants me on treatment the whole time! My blood counts have been fine/normal and steady. She sees no reason to change anything. She also said I could have surgery "whenever." I found that interesting. I told her I want to scan again after 4 months (which I think would be sometime in October) and THEN we can pick a date. I guess psychologically I want this "creep" beat back as far as we can before having any procedure.
One thing.... all docs didn't want me getting a mastectomy. Said it was so much, too hard, and no benefit over a lumpectomy. There's that risk of not getting clean margins. I think this is partly why I want to wait and have ibrance work longer so we can kill off as much as possible.
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eelder,
Wouldn't they just want the primary tumor out of there because they can get at it and make sure it won't be a possible source of new metastases down the road? A recent ASCO Post suggests it better to get it out of there...
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Yes.
"Our thinking is similar to how you might approach a battle against two enemies," said Dr. Soran. "First you quickly dispatch one army—the primary tumor—leaving you to concentrate all your efforts on battling the second army—any remaining cancer."
Good article. Explains what my docs are trying to tell me (far more eloquently, of course).
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thank you curious. that is the study done in turkey. this is the actual article. i've talked to two oncologists who felt that the study chose people with a better prognosis for surgery and generally did not adequately randomize the population between surgery and no surgery. the study had 276 participants with a wide range of cancer types and prognosis. so they did not have a significant population of any sub-group. they had some weird results where they saw significantly improved survival at 40 months nothing at 36 months ?!? without any really good explanation. the best results were for people with only bone metastasis, who generally have a better outcome anyway and probably skewed the results.
it's a strange study when you read beyond the headline.
the seattle onc said there is a US study that is better structured to give answers but undersubscribed because no one wants to be randomly assigned for surgery (surprise!). it will be a skewed study anyways, because no on will sign up unless surgery is a reasonable option for them.
there is a whole separate set of research that shows neoadjuvant therapy for stage I to III breast cancer has better outcomes. in the us, the normal thing now is to shrink the tumor before surgery with chemo. it seems to me it should apply to stage IV. in eelders case and my case, we seem on track to get rid of the tumors with systemic therapy and that is not addressed anywhere in this discussion.
radiation of the breast makes some intuitive sense even if the tumor is gone. much like they do after surgery to sterilize the area.
all that said, i have more confidence in the gut instincts of the oncs in san francisco than all this data. it's not possible to boil it down to studies and statistics. they have experience and good intuition. but i always have questions ...
of course, we could just blow their minds and show up NED in October.
>Z<
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Oh, I see the problem, and so agree its unlikely there will be any clear answer from these small studies. So why take it out? Despite NED there must be plenty of metastatic cells floating around there, but same is true at other metastatic sites.
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"Of course, we could just blow their minds and show up NED in October."
I love your thinking Z! That's my plan! If not in October then sometime after that. I WILL GET TO NED. I will keep putting it out there. My oncologist also told me of another patient who has been Stage IV since 1998. Doing FINE. Just this year had to go on another line of treatment, but as my doc said, "is sooo far from anything serious." Not in all cases, but it really is becoming more of a chronic disease. Definitely a disease I'd hand over tomorrow if I could, but my doc feels I will live a long time. I am choosing to believe her.
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I want what your drinking eelder! LOL! Great inspiring attitude!
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Cure-i-ous - exactly.
Eelder - exactly.
Send good vibes, peace to everyone. May we all find our way out of this house of frights and mirrors at least long enough to enjoy the last weeks of summer.
>Z<
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This is very interesting. Eelder, if that breast tumor doesn't show up on your next scan, then do you have no surgery? Or would they do a lumpectomy anyway, assuming the spot has a marker? Would they do radiation anyway? Along with the liver mets I had a breast tumor that my onc thinks was also metastatic disease. PET-CT shows that it resolved on taxol, but of course there could be something small left that doesn't show on the scan. I wonder if those UCSF docs would still recommend a lumpectomy for me? (There is a biopsy marker.) I don't think I can have radiation for it since I had whole breast radiation the first time around.
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I started taking Ibrance yesterday. I've been on Letrazole for 2 wks. These post have been tremendously helpful but does anyone know why the Ibrance has to come from a specialty pharmacy? Has anyone had issues with that such as not getting their meds on time or having a mixup on dosages? I have concerns.0
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NineTwelve, Sorry you are still walking funny after 1st Fas shots. Sore butt muscles from shot or increased joint pain? If the former, it should resolve soon. And the experience can be a little different each time. Did you check out the Fas thread? No need to read the whole thing, Pajim summarized what you need to know on page 1, regarding shots being warmed, etc. Hope you are feeling better.
Happy to see I started quite a conversation on surgery/no suregery of primary tumor at stage IV. Still controversial, so good to hear what other oncs are thinking. You are so right Z, the devil is in the details of who was in the study and how it was conducted. I feel it is a decision we should be allowed to make for ourselves once we fully understand the pros and cons. Many women have strong feelings one way or the other and those should be honored. I look to my mo for guidance and information, but in the end it is my body and my life, so I have the final say on tx.
I used to think describing mbc as a "chronic disease" was total bull, but this protocol is making me a believer, at least for the time being, ha ha!
Pooky, Welcome, but sorry you have to be here. I think Ibrance comes from the specialty pharmacy because of it's expense (I hear upwards of $10K a month), but more so because it is not a commonly used drug, so too pricey for regular pharmacies to keep in stock. If your pharmacy doesn't call you doing your week off, be sure to call them. I have only had 2 problems in a year of Ibrance deliveries. One month the pharmacy did not call (so I called them) and last month the Fed Ex guy delivered my Ibrance to someone else with a similar address! I was able to retrieve it, but it was a mess. Best wishes to you on this combo. It has been a winner for many of us.
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Pooky, which pharmacy do you get yours from? I use Cigna Specialty Pharmacy and they're great -- actually much more thorough than my local pharmacy would be re. asking about SEs, etc. I usually have to call them to re-order (I think they called the first time), but I just put Day 1, 21 & 28 on my calendar, and a a reminder to reorder during my week off. I did run into a refill delay once that wasn't an issue, so maybe just be sure each time you order you still have refills, and if not remind your onc's office that you'll need one. Oh, and I don't know where you live, but since it's so hot everywhere this summer, but sure they use cold packs so that it's not riding around in a hot delivery truck all day.
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Shetland.... excellent question. I really don't know. I imagine they'd still go in and clean out whatever still exists. I know I had some calcifications. Not actually sure if those still presented with the PET. I think the breast MRI gives more detailed info for the surgeon and that would be done the morning of the lumpectomy so she knows exactly what she's dealing with.
On another note.... had my "once every 4 months" Lupron injection yesterday. WHOA NELLIE. Not only is my butt/hip SORE, but I am feeling WIPED OUT. I've been on ibrance for 4 months and have never felt this wiped out. I know it's the Lupron shot. We have a family friend with Stage IV prostate cancer and they actually give Lupron shots to HIM as well for treatment. He says that's the hardest part for him. The first shot I got gave me some soreness, but nothing like this. Anyone get Lupron injections? Holy smokes.
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The other thing I learned about Ibrance delivery is that if it ships on Friday for Monday delivery, it will sit on the truck all weekend. Since the trucks are not temperature-controlled, I'd avoid that schedule
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