Ibrance (Palbociclib)
Comments
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Larkin - in my opinion, Ibrance is chemo. The definition of chemo is simply a systemic treatment intended to directly kill cells or stop them from growing. Ibrance is a targeted chemo in the sense that it only effects cells using a growth pathway that requires CDK 4/6 inhibitors. This pathway is (currently believed to be) mostly triggered in cells trying to get around estrogen inhibition but it is in fact used by cells all over the body including white and red blood cells.
Doctors and pharmaceutical companies created a separate class for Ibrance, "Targeted Therapy", to differentiate it from other chemotherapies, particularly those that can only be used for a short time because their side effects are debilitating. The current thinking is that Ibrance is something you take for the rest of a hopefully long life because the side effects are tolerable. I don't think this word game is a bad idea. The word "chemo" might have scared me off of Ibrance and in fact the side effects are tolerable and it is working.
That said, estrogen suppression is chemo and my lupron box is marked as chemo and the lupron shot billed as chemotherapy. However, they don't call aromatase inhibitors chemo to patients, also to distinguish it from the nasty stuff. There is a real substantive distinction. But I would call both AI's and Ibrance a different class of chemo. And trust me there can be days on this stuff when you will wonder if there is any distinction.
DC197 - congratulations on stable! Wooohooo. Your doctor's lack of experience with Ibrance makes me nervous, however. You might want to find an onc with more experience with Ibrance now, while things are going well, so you have a second opinion doc in your pocket if you are managing complications or contemplating changing regimes. It's a new drug and many good doctors are not familiar with how things go on Ibrance.
Kaption - good to hear from you!
Singlemom1 - I am blowing off my oncologist appointment tomorrow to go mountain biking with my daughter. That is called active denial. I really don't want to deal with cancer right now. You are doing great, and every minute you can (reasonably) not deal with the diagnosis you win.
Good job backing off of Ibrance. Overall wellness comes first, then you fight the cancer. Smart onc. Your health will come back soon.
Ninetwelve - Accelerated aging sums up most of my experience on this protocol. I feel like I aged 10 years in the last 9 months on the letrozol. And I do think it is the letrozol that is causing most of the drama.
You apparently already have a great supplement regime if you are still working (amazing to me). ALA is my current chosen option out of many good options. Alternative options are not unlike the standard medical cancer arsenal ... there are many cancer drugs that work but you don't take them all at once.
>Z<
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Ha, Zarovka, I knew you would offer that definition of chemo. (Smiley face) I wonder, too, if using the word helps get things paid for by insurance. And while we are on the subject, I would like to register my objection to the very common phrasing that describes breast cancer treatment as "surgery, radiation, and chemotherapy" as if endocrine therapy i.e. Anti-estrogen therapy, doesn't really count. We know better! I don't like it that the impact of it on our quality of life or the success of our treatment is minimized. A person is not "done with treatment" when "only" on endocrine therapy.
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ShetlandPony - I do think that they medical/billing community uses the word chemo to describe all this stuff (hormone suppress, ibrance and the taxgevaherceptinasin stuff) because the insurance companies have already accepted the high price tag of The Chemo. What you call it depends on who you are talking to and what point you are trying to make. Targeted Therapy is fine with me. I'd rather not be on chemo, personally.
I have another definition of chemo - really expensive stuff you inject or swallow against your better judgement in order to hopefully ward off something worse. Ibrance falls in that category as well.
>Z<
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NineTwelve, in many ways I feel as you do. The two years have been long but have also gone by fast. And since my first diagnosis I think I have been living more mindfully, grateful for the good times. And accelerated aging is exactly the way I describe my situation, too. I am not on any other drugs, just low-dose aspirin and vitamin D3.
You should tell your cousins that you are so glad they are coming to help, and make a list of duties for them.
Singlemom1, we get that. As Stephanie said, not a day to celebrate, but a significant day. I was disappointed that at my last onc appointment we did not mention that it was my two-year anniversary. We do understand, Kaption and Singlemom, about not wanting to deal with this.Thank goodness we have each other here. One time I called and canceled a scan and would not reschedule. The person asked me why and I said, "Because I'm tired and depressed and I need a break." Silence.
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That's a good definition, too!
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Larkin, I just got my first bottle of Ibrance in the mail and did a double take and groan when I saw the "Caution - chemo" sticker.
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Jen I know, I was like, This poison should not be on the kitchen counter
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Kaption, you took the words right out of my mouth! People do not realize how exhausting it is to deal with this every single day for the rest of our lives!
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Anyone on this thread get to N.E.D. on ibrance? I'd love to hear about your journey and how long it took.
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"You should tell your cousins that you are so glad they are coming to help, and make a list of duties for them."
lol. You're so right, Shetland, I should!
Forgot to put in my plug for acupuncture - Zarovka - please try it! It is so worth overcoming a needle phobia. Though I understand the feeling.
My first time was a little panicky, because I didn't know what to expect. The practitioner put in the needles and then left me to stare at the ceiling while music played. I started to feel like a pincushion in a land where time had stopped. But she left me with a little bell to ring in case I needed reassurance. After that first time, I knew what to expect and it wasn't scary anymore.
This acupuncturist had an office with two beds, and I used to go with my best friend. We'd make each other laugh while waiting for the needles to do their work.
Now I'm an old pro at it, and it doesn't faze me at all. There are so many reasons to do acu - including lymphedema! For me it took care of pain, and even emotional issues from my childhood (so weird - but I feel so light and airy after a session).
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Thank you for the supportive feedback Stephanie, Kaption, Z and Shetland pony!
Eelder, there is a question of me being NED. Lung node was where the Mets cancer was found upon biopsy. This is down to basically nothing. However, I have a number of nodules in lungs that were originally thought to be cancer as well. Now that is being questioned. Onc said I am NED if nodules are not cancer. It was on my 10th month of ibrance that my onc said I am most likely NED. However, we are not really sure what the deal is with the nodules and a previous onc told me that he was 99 percent sure they were cancer. At the least i am stable, at the best I am NED.
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Nice to "see" you kaption! I get pretty tired of thinking about this all the time too. Had a quick Onc appt today and was thinking about that and how I would give almost anything to go back to normal......all of us right?
Boy, Cathy that is so much to deal with on top of your own crud. But good news too so Happy Dance! Hope your Dad is doing better every day!
Same for you Diane, stable is glorious!
One thing that has helped me lately with my muscle tone and energy is that work bought me a standing station so I am not sitting all day. It has made a difference. But I definitely need to make more effort. Stephanie that all makes sense about the cancer itself sucking up muscle and energy. i still eat very well but have gotten pretty slim in the last year....I am going to look into remedies too!
Thanks Z about the house comments. I am getting very anxious to "get it done" and feel lovingly surrounded by a much smaller place with less work and expense.
Cafe, I am sure we will see you around the boards too. Sorry to hear about your Mom.....May the next Tx work a very long time!
singlemom, I remember my one year as well and just holding it to myself and wondering if anyone else gave it a second thought while I was very quiet and a bit morose. Take care...
Ninetwelve, I want to research ALA too. all of the reasons you listed for still working are mine too. The money yes, until we sell our house. Definitely the benefits. I am so afraid of being driven to bankruptcy without them. Plus just engaging with co-workers and the kids gives me purpose.
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Hello again everyone, I've been reading along but haven't posted much b/c late at night when I'm here it takes more energy than I feel. I'm also tired of thinking about cancer dayand night. I'm thrilled when you post good news of your scans and blood tests and I pray for you when the drugs start to fail or you are just going through a rough day. I was very upset to read here that Ibrance doesn't actually kill the cancer. That sure burst my bubble.
I've been thinking of those who are saying they can't build muscle anymore. I know most of you eat well but wonder if you are getting enough protein. I was surprised at the amount of protein I was told to eat. I'm 5'1" and weigh 125 lbs, so while not skinny, not very big either. I was told to eat 80 grams of protein a day b/c cancer feeds on protein so if you're not eating enough the cancer is taking it from your muscles. It's supposed to be 20% more than normal for you. I confess I have a lot of trouble eating that much so I'm losing muscle too but as I'm much older than most of you, I think it goes along with age and lack of hormones naturally.
I've just started rd. #9 and felt fairly good through #8 even at the end and my week off was very good. Now, 2 days in and I've got mouth sores and a sore throat. What the heck? Meds, allergies or a cold? Hope it's not the latter, I've got to go back to the dentist on Monday to have the crown patched that was drilled through for the root canal.
Thank you everyone for sharing your knowledge and research. Knowledge is power!
Sending healing thoughts and prayers to all. A special hug to Stephanie LTS for being so helpful and supportive to us even in the midst of your losing battle with this terrible disease. I pray you are pain free and at peace all the time.
Faith (in the future)
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Faith - Something is killing off the cancer cells in my tumors, eelders tumors and many other people on this protocol. The stated "theory of Ibrance" doesn't explain why that happens. All that points to is that they really don't know what these drugs do. The protocol obviously can wipe out tumors.
Also, I have a whole rant with supporting references about how women stable tumors and women who are NED don't have different survival outcomes, statistically. The point is that it may not matter much whether Ibrance keeps you stable or gets you to NED. However, it would be hypocritical of me to go there. After 6 cycles I had no visible metastatic tumors, just a tiny shrinking primary (<2.5cm) and a couple slight enlarged lymph nodes (<.6cm, down from 1.8cm). I seem to be headed for NED. I really want to be NED. Scans in November.
Really interesting comments regarding protein. I need to look into that ...
Ninetwelve - I am so freaking desperate for some QOL at this point that I made appointments with TWO acupuncturists next week after assiduously avoiding the whole concept for weeks. That said, I had a lymphatic drainage session on Wednesday and I feel the fog/fatigue lifting.
Tomorrow is a Denial Day. Actually, it is Homecoming Day. I pulled my daughter out of school and left town to avoid the silliness. We're going biking all day.
Sleep well everyone. We're doing pretty well, ladies!
>Z<
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Faith, This is a little off topic, but I was laughing to myself when you mentioned going to the dentist to have your crown patched. Many years ago, I had a crown on a molar which was quite far back in my mouth. When the dentist drilled through the crown, it came off, but he said "no worry, it can be put back on when the root canal work is done." Now, I must admit that when having any work done in my mouth, I have a tendency to gag, as much as I try to control it. So, that's exactly what happened when I went to have the crown put back on, except when I did, the dentist quickly pulled his hands out of my mouth, and I swallowed! The dentist looked shocked, as did his assistant. It was only then that I realized that he wasn't holding the crown! That was the most expensive meal that I have ever had !!
Diane
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Good morning Zarovka,
You wrote: "Also, I have a whole rant with supporting references about how women stable tumors and women who are NED don't have different survival outcomes, statistically. The point is that it may not matter much whether Ibrance keeps you stable or gets you to NED."
Would you be willing to post your well-researched and well-reasoned report (it's not a rant) in a new, separate topic here in forum 8?
Also, do you have references to what I used to know and have links for, but no longer remember?
The difference between PFS and OS (progression free survival and overall survival)?
My friend Musa Mayer explained this so well at bcmets.org, that I checked her references and came to believe it myself.
Partial response or even NED do not = improved OS. This is, in part, because cost of treatment toxicities can offset benefits of disease response. But there is more to the story!
Other counterintuitive research findings are:
The actually complicated truth of breast and prostate cancer screening not providing any OS benefit to large groups...only to a statistically insignificant # of individuals. They go on to swear that early detection saved their lives and everyone must get screened for a few to possibly benefit.
BC advocacy groups' promotion of mammograms for all beginning at younger than ages recommended by experts who juggle data & numbers.
The risks of over treatment for both early stage BC and MBC.
The question of Waiting for symptoms before restarting chemo? in MBC.
And any other counterintuitive findings you care to comment on?
We do such good jobs of deconstructing:
MBC is an instant death sentence (we know that outdated statistics are only part of the picture).
The promotion of BC awareness in the USA rather than focus on the cure (thank you, Metavivor and MBCN).
Ignorance about breast cancer in men and also LGBT folks - the transgender people are especially hard hit.
Societal ignorance about the realities of living with MBC because of the partial information given by disease advocacy groups like Komen and others.
Pinkwashing, pinktober, Pink Ribbons and the BC industry. See Barbara Ehrenreich's famous article, Welcome to Cancerland: A Mammogram Leads to a Cult of Pink Kitsch
Oh heck, there's a never ending list of research and reality ignored for profit, convenience, wishful thinking and ignorance.
Zarovka, please address what you like and I'll be interested to read what you or anyone else chooses to share about these and related topics.
warmest healing wishes, Stephanie
PS, I came to this community for Ibrance, stay because I care about y'all and am often stimulated to learn something new!
Thank you!
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Eelder, I have been on ibrance for 14 months and every scan at 3 month intervals has shown shrinkage. I was originally diagnosed de novo with 1 met in my hip. I am now nead. My Dr. Won't say ned since I will always have it its just inactive right now. The strange thing is every scan also showed other mets ribs,spine,scapula as healing as well. I did not know they were even there. Doc says I probably have more they just are not showing up. I had an oopherectomy and lumpectomy a few months ago. I needed the breast tumor out for my own mental state. I could feel it every day and it drove me nuts. I wish you and all of us the best of luck on treatment!
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Stephanie -
This is the article I have referred to that summarizes studies where there really was no difference in outcome between stable and NED.
Looking at just one of the studies, the author found:
Patients who had an objective response to chemo had a median survival of 16.1 months, pretty good for an advanced lung cancer trial. The patients who had progressive disease had a median survival of only 5.5 months, which was (obviously) significantly worse. But what was so interesting is that the patients who had only stable disease had a median survival of 15.2 months, which was not statistically different from the responders. The survival at 2 years was 33% in the SD group compared to 30% in the responders, raising the question of just how important it is to have actual tumor shrinkage. At least in this trial, it didn't seem to matter at all.
I see two explanations for this. First, Many tumors become necrotic rather than go away. They still appear in the scans but it's just some kind of microcalicification and a not a live tumor anymore. Second, metastasis is as likely to come from micro metastasis - tiny colonies of cancer cells - as it is from the tumors that show up in scans. Since there is a whole lot more micro metastasis (stuff we can't see) than the dormant tumors that show up in scans, having a few dormant tumors doesn't increase the likelihood of recurrence.
On the other hand, here is a study that hows SIGNIFICANT IMPROVEMENT in survival rates among women who do get to NED. Basically, you can google slightly differently and you get into a series of articles which are trying to carve out that sub-group of people with oligometastatic disease: people with limited metastasis who get to NED one way or another and stay there for a long time.
Basically, you can look at different subsets of MBC - de novo, young/old, limited metastasis, treated with this, treated with that, grade 1 or 3, IDC or ILC - and get to different conclusions depending on the point you are trying to make. However, there are certainly a lot of people with stable metastasis who do well for quite a long time. I like to point this out to ladies when they get their scans back. It really is quite a positive thing to be stable.
The basic theme among the counterintuitive researcher findings you mention is that what we want emotionally doesn't always translate to how things work. Often true in life, but with MBC the emotions are pretty raw and it's even more challenging to live with the facts. In fact denial, to a point, is allowed and helpful in my opinion.
As for pink kitch. I don't tell anyone I have cancer and I hang out on a few threads on BCO that are full of real people dealing with BCO and completely kitch free. It's not my problem if people want to wear pink. I don't blame them, its really not possible to understand MBC unless you have it. This is why I hang out with you guys.
Ally - Bone mets often don't show up in CT/Bone scan until they are healing. I had one bone met in an early PET scan. It did not show up in CT/Bone scans until 6 months into my Ibrance/letrozol treatment when it showed up as healing. Thank you for sharing your story. I had good progress at 6 months but I still have a bit more of the primary tumor to get rid of. It's helpful to me to know you are still improving at 14 months. I'd like to continue improving as well. And I am very glad for you.
>Z<
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Diane, thank you for my laugh of the day. I would have loved to see the look on the dentist face when you swalloed the crown. While I'm sure it wasn't funny at the time, it makes for a good albeit expensive story.
<Z> I'm glad to hear you say you believe something is killing off the cancer cells, I choose to believe that too. I do think the cells are dying but that there are many micro mets hanging around and we can hope to boast our immune systems enough to kill those off b/4 they become a problem. Of course, some cancers are more aggressive than others but if we can get to NED or SD we've got a better chance at longer life. I just made the appt. for my next PET scan.
Lucky me, (not) it's for the first week in Puketober! A term I read on another thread here on BCO and feel the same way about the whole pink thing. I have a real love/hate relationship with this thing. I hate to be reminded of BC every time I turn around (as if living it, isn't bad enough) but I'm grateful for the awareness and the money it raises. But then again, I think don't spend all that money to raise awareness, just spend it on finding a damn cure for this thing and figure out what's causing it.
Stephanie, the link to the article "welcome to cancer land " was very thought provoking and left me with so many mixed emotions. It's very exhausting sometimes to think about it all.
Ally, thanks for sharing the news of your 14 months on Ibrance, all of us here want to hear of years of stable disease or better yet NED.
<Z> I'm jealous of your biking. I used to bike all the time last year but now I'm too nervous about falling and breaking something at my age, that would be the beginning of the end. It's the unpredictable dizzy spells that keeps me walking but I envy all the bikers wizzing past me. Maybe I'll get the guts to get back on the bike again one of these days, I hate to let cancer take away any more of my QOL.
I'm really grateful to be able to come here and hang out with my virtual friends. Have a good pain free and peaceful night's sleep everyone.
Hugs, Faith (in the future
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Faith,
(I'm butting in again as a former Ibrance user)
I also have mixed feelings about the pink October. I don't like that big companies use it for marketing and don't make real contributions to research. But, I have to say some of the stuff feels like a real hug from the universe. When those big athletes get teary and talk about their moms, sisters or other loved ones- there is a sense of some shared experience. So, yes, some of it makes me cringe- but some feels like common ground.
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Kaption
I tend to agree with you. I find the month of October to be very supporting in many ways and annoying in other ways. The "SURVIVOR" and "AWARENESS" part is hard at times. This is not about awareness for us. This is about life and death. I can't be part of the " survivor" celebration. We need a cure. We need to live. I wish there was more of a focus on MBC and then I think I would really feel the support.
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Thank you Z for posting that pubmed article about NED making a difference for survival. The doctors, mine included, like to discuss NED and stability as being equally good and I definitely agree with this. But, there's something psychologically pressing about the need to get to NED. I hope and pray I'm on my way, but of course, we won't know unless it happens. It sounds like NED or an increased period of stability will definitely impact long-term survival.
Z, you referenced oligometastic + NED.... what does the research say there? Is there a difference? Or is it simply anyone who has MBC and gets to NED has an improved survival outcome?
Maybe I'm living in a state of delusion, but for every year we buy ourselves, we're THAT much closer to another drug.... another treatment.... another combination of something that could then give us a few more years.... and some more after that. I pray daily for a cure. That's what we need. Less pink ribbons.... less pink t-shirts.... more research leading us to cure this beast. But if we can't cure this anytime soon, then AT LEAST we have options with certainly more to come. Many lines of treatment that hopefully give us more time and more years as we inch towards better treatments. I'm hopeful. I'm optimistic. I just don't have a clue what the journey will look like. THAT is hard.
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Just popping in to say my extraction was relatively easy. I felt bad off/on for a week but wasn't good about staying on top of my pain meds. The sx said it was healing as well as "normal" people at my one week check up.
I switched to Advil by the second day to avoid other SEs and took lots of naps. Ate soft food and lots of popsicles. It's still very warm and humid here so that didn't help.
I started my 9th round of Ibrance only a few days before the extraction. I wanted my counts to be at their highest.
It's been two weeks and I feel much better than expected since I'm on my third week of the Ibrance cycle. I'm eating normal food. Even had chips and salsa for lunch. I just make sure I gargle afterwards to dislodge any particles.
I was dreading having this procedure done but it wasn't a big deal and I can move forward with the xgeva soon.
Best wishes to all.
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Zills - congrats on a successful extraction.
eelder - Basically when they decide that someone is oligometastatic they get them to NED one way or another even if they have to use surgery or radiation.
faith - I am having fun biking. It's good exercise that I can do despite my painful feet. Wish I could run. Will give it a shot tomorrow. My husband is in a 5K and I will try to jog the course.
I had no idea about Puketober. Thanks for the heads up. I am in the group of people who really don't need that particular kind of "support." But I get the good intentions and it shouldn't be too hard to ignore.
I have only been diagnosed for about 9 months and last October I had no cancer awareness whatsoever. Kinda interesting to think about where I was last October. I had cancer but did not know it.
>Z<
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I'd like to see your eloquent words on buttons, shirts, and banners this October.
"This is not about awareness for us. This is about life and death....We need a cure." Singlemom1
"Less pink ribbons.... less pink t-shirts.... more research leading us to cure this beast." Eelder
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Faith, I don't know your whole situation, but would a three-wheeled bike be an option? I'm thinking it would be more stable just in case you felt dizzy.
Z, it feels like I've known you a lot longer than eight months.
Zills, I'm sure you are relieved to have that dental work behind you. Whew.
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Yes I am very glad to had no complications with my extraction.
I have a three wheel bike and I love it.
I have become more aware and less tolerant of the pink stuff. I find the most offensive ad to be from the CDC this year but that's for another thread. Don't want to derail this one.
Happy Sunday.
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eelder, I'm living in that state of delusion too. While my time frame doesn't need to be as long as most of you here, I also believe getting to NED does buy us lots more time for new treatments and that seemed to be what my MO was telling me when I was first diagnosed. I think at first I was really in a state of denial, thinking that if I got to NED I could stop taking the Ibrance but now I realize that the longer I can stay on it,the better off I am. That's been hard for me to accept but I know I'm lucky so far although I'm getting scanxiety about the upcoming scan in Oct.
I have thought about the three wheeled bike especIally on these beautiful fall days we are having. My problem is where to store it. The garage is full with the cars and lots of my DH's wood working stuff which he needs to think about selling. In fact our son actually has started a small business of selling electric bikes and he has an electric three wheeler I can try. Just don't know where to keep it. In fact if anyone here wants to get back to biking but doesn't feel strong enough for hills, etc. send me a PM and I can send a link to his website.
Sleep well and pain free everyone,
Faith (in the future
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I always seem to be popping in with questions. Hopefully, one of these days I can be of help to some one else on this thread!
I'm scheduled tomorrow for my first PET/CT scan after starting Ibrance/letrozole on June 9th of this year. My DH and I are trying to get our thoughts together just in case the results don't turn out as well as we hope. I've had no side effects and feel great, but my TM's have steadily risen since starting Ibrance. BTW, If I hadn't read all of your posts about the fairly common spike in TM's with this combo, I'd have never made it through the summer.
My MO started me off with a 100 mg. dosage of Ibrance, but we just noticed on the Ibrance website that the typical first dosage is 125 mg. I also noticed that some of you started off with 125 mg. and then had to lower the dosage due to neutrepenia or other side effects.
I'm horrible with trying to translate numbers, and what I see on my patient portal regarding blood counts is not in the same form that I see reported here on the thread. White Blood Counts have ranged from 3.3 Thousand/MCL in June to 3.6 last week; Neutrophil Count dropped from 66.7% in June to 53% last week. If any of those numbers make sense to you, does it look as if I might be able to request a higher dosage if there is progression? I couldn't find any kind of mention that anyone has increased their dosage, but it might be worth a try instead of calling it a failure and moving on to Xeloda.
Thanks for your help and suggestions,
Angela
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Hi Angela, I started out on the 125 mg dose and I still take it. I thought all MO's started out on the higher dose and then lowered if there were issues. Your white counts are really good, so I have no doubt that you can handle the higher dose of 125 mg. My WBC ranges from 2.0 up to 2.7 and my neutrophilis (gran) has ranged from 1.2 to 2.0. Check you neutrophils (gran), it should be close to the neutrophils %. If that level fall below 1.0 they will want you to take a few more days off of Ibrance. Hope this helps!!
Hoping for a great scan tmrw!!
Robin
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