Ibrance (Palbociclib)
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Monika, nice to "see" you here and fantastic news about NED! Woo HOO! Same to you Eelder, we all need to hear the good news! Faith, so true about general everyday chores. I get a lot of exercise just cooking and cleaning, shopping ect. Probably still not enough but I do cut myself a little bit of a break. Honestly need to ramp it up though as winter is coming here and it is much harder to find things to do. Although our town just put in an indoor aquatic center with a warm water pool and lazy river! Can't wait!
Z, i got a bruise on my thigh a few months back from bumping into a table corner. It grew to about 4 inches around and took MONTHS to go away. It was soooooo weird and unsettling.
Cathy, Wow your commute wears me out just hearing about it. Lucky you can sometimes work from home. I hope you figure out the best plan of action for choosing which will be your Onc. Shetland's advice sounds pretty good. Last thing we need is something else to stress over....
Sheri, My hair thinned on the Letrozole. for a month or so it was alarming how much came out in my brush. But it slowed down and was not noticeable to anyone but me. Got a LOT of joint aches too but now take curcumin caps. After the advice here I will probably change to adding it to my food with some pepper. Thank Deanna!
Claire, so sorry to hear it is a met to the jaw and that they are keeping you hanging in limbo. Don't they realize what that level of anxiety is like? I sure hope they get you in soon and he is worth the wait. I hope the rads go easy as pie and zap that sucker into oblivion. Let us know how it goes and go have a glass of wine....
Regarding the question "to tell or not to tell" I still am on the fence. I am glad my coworkers and family knoiw. But living in a relatively small town I really wish the word had not spread far and wide. It changed my social life and not for the better in a lot of ways.
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Hi Z, I would be interested in the website you get your shampoo at. Also do you use the renew or revive?
Thanks,
Robin
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Hi, I'm a sometimes lurker and seldom poster. I'm 31 and have been Stage IV for about 6 years. Despite extensive bone mets of its been good to me honestly. A few months ago I had an anaphylactic reaction to my faslodex (after more then 2 years on it) and was taken off it. We decided to re scan and pick a new med but because of issues with my lovely insurance after our company got bought I ended up almost 3 months with no treatment and my bone mets went nuts. I just finished rads to my hip and pelvis for pain and thinning and cyber knife for a met pressing my spinal cord lining. I was also pretty much living off of morphine and norco during this time. Right before rads I started Ibrance and Femara. Im having a hard time distinguishing what might be ibrance/femara symptoms or what's from all the other stuff going on. Ive had some hairloss, lots of fatigue and low counts which I expected. Since starting femara/ibrance I have horrible acid reflux, nausea, and a foul taste in my mouth. I feel like nothing tastes right, even water. Does anyone else here have this issue? Thanks for any help!
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Hi Southernsur - I started round #11 of ibrance + fas - lost much of my hair on cycle 2. I'm part of the "lucky" 28% of ibrance patients with hair loss. There is help with a hair halo http://halocouture.com/ So I wouldn't worry about a picture - the loss is more gradual - not like IV chemo, but mine is gone and so are my eyelashes. Z , Cheryl and Steph - I am starting rads to my left jaw soon (have a very rare met), the UCLA specialty dentist finishes my flouride trays on Monday as rads to jaw can cause issues with salivary glands. Other than a lone jaw met, my sternum is sclerotic (healing). My left lung gets drained every 4 weeks. I am working full time - and exercising which may be the best medicine. Along with talking with you savvy ladies. And going to Germany in December!
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lalady1 - I was just thinking of you. I am glad you are moving forward with treatment. Always best to just get on with it, and then do something great like go to Germany. Rads can be exhausting, so I hope there is some down time and relaxing in the schedule.
Robin - I will PM you.
Cursive - Welcome. The side effects of femara and ibrance are not easy to distinguish, but it's helpful to scan the Femara thread and see what folks who are just on femara are going through. I've come to the conclusion that my remaining side effects are entirely letrozol. But the SE's change with time and I definitely had Ibrance side effects like extreme fatigue early on. Never had any gastric issues, but I believe some ladies will chime in soon on that one. It does happen.
In general, exercise has been the single most important factor in reducing side effects for me, but it can be very hard. I believe it moves the toxic metabolites through your system. It's important to do frequent, but short and limited sessions, like two 15 minute walks a day, rather than do too much when you under stress from a lot of side effects.
>Z<
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Hi CursiveStars, Welcome to this thread! I don't post often, either, but thought I could answer a couple of your questions. I am on cycle #9 of this combo. When I started at the 125 dose, I had all the symptoms you describe. I am now on a 75 dose, and I still have fatigue, some low counts, and continuing hair loss. The other symptoms have subsided. If you can't tolerate the high dose, ask your onc about lowering the dose. Good luck.
Diane
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Hi CursiveStar - I am on my 11th round of Faslodex/Ibrance. I did experience the gastric issues and it got to the point that I had severe stomach pain and couldn't eat even crackers & water, even with Zofran. Had to go to E.R. and they put me back on a stomach acid (omeprazole) med. and I then could tolerate the Ibrance. I also experience the fatigue, low counts and hair thinning. My MO's office called the other day to ask if I could stop using the Omeprazole because there has been research showing that these types of drugs can cause kidney problems. But, I told them I could not continue the Ibrance without the Omeprazole. So when I see her on the 27th of this month I'll see what she tells me then.
I guess that doesn't really answer your original question, but I wanted to share my experience so you know you are not alone on the SE front.
I was originally DX'd with BC at 31 and MBC at 54, but your DX at 25, I am sorry you've had to deal with all you have at such a young age.
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Thank you ladies for sharing. My eyes tear up when I read your posts and how positive you all stay. Thank you Z for your constant updates and questions I have. May all of us stay strong and our hurts and pain be minimal. God bless you all.0
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Tips for the bloated feeing I've had since starting this combo? Sorry for the TMI but I need some help....my bowels are moving daily but definetly slower than before. Pre-Ibrance it was pretty usual that I would have two to three easy comfortable movements a day and now I'm down to one. I eat loads of veggies so I don't think it's a need more fiber situation and I'm drinking water. Ive been taking my Ibrance after dinner - does anyone find taking it easier in the day helps? I'm gassy and this bloat is much too uncomfortable. I'm not wanting to add another medication to deal with this if possible.
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HI Claire,
Thanks for keeping me in your loop.
I so appreciate you, your spirit, spunk and perseverance in caring for yourself and choosing a life that matters to YOU!
I have trouble with salivation and dry mouth due to daily draining of a liter of ascites fluid. There are plenty of times I wake in the night with cotton mouth that is more severe than pain, nausea, cramps or needing to pee. It's hard for people to wrap their minds around - they believe me, but not how discomforting it is.
Some things I tried are: glycerine (natural products are available), Biotene mouth moisturizer from dentist, not eating after 4 PM, avoiding salty food after noon and just getting up to rinse, spit and even swallow water at night. Oh, always have water handy day and night!
Claire, so glad you found a specialist dentist you trust and feel you can move ahead with confidence.
Hope your medical insurance covers it. Many don't do dental coverage, but surely this is a medical issue, more than a dental issue.
You please educate me - what on earth is a flouride tray?
warmest wishes from rainy SF Bay Area, Stephanie
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Jen, after trying Gas-X, Phazyme, No Bloat, Bloat Away, a couple of probiotics, and probably a few things I'm forgetting, I have found the best help for my gas and bloating is fresh sauerkraut. Sounds crazy, I know, but it's a natural probiotic, and it works great. I just have a little dish of it each day, and what a difference! I also do some Fage yogurt, but the sauerkraut is the best. I get the one by Sonoma Brinery -- in the refrigerated case at a large nutrition supermarket (Clark's) out here in the desert. Not sure if Whole Foods carries it, but I'll bet they do. I also sprinkle just a tad bit of natural or coconut sugar on it to make it more palatable. I had DIEP recon in 2008, and it truly makes the gas issue miserable. It's like my tummy can't expand enough now, so I know how bad it can be!
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Deanna mentioned inflammation and TMs. Do you (or anyone here) happen to have any references to a source that explains a relationship between inflammation and TMs? Or was this something your onc mentioned? Do you mean systemic inflammation and/or inflammation from a localized injury? I'm still trying to understand why my TMs are slowly rising now. Last three scans have been somewhat ambiguous. My TMs were accurate in the past.
Eelder, yay! Cheering! What great news. Mdillard, I'm so glad you checked in. Seven months NED and counting is wonderful!
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SP, I can't find specific research that addresses it inflammation affecting TMs, but I have heard that it can be a factor. And while it doesn't specifically answer your question, this study discusses the interesting link between inflammation and cancer.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC27177...
And this chart from Oncolink lists a multitude of non-cancerous reasons for elevated levels for the various TM tests, as well as an interesting note on both the CA27-29 and CA15-3 regarding tx causing TMs to rise initially and advising that the test(s) not be done for 2 to 3 months following the start of a new tx.
https://www.oncolink.org/cancer-treatment/procedur...
And here's another article (not sure of the source) that lists a bunch of inflammatory conditions that can affect the CEA especially.
http://www.kantrowitz.com/cancerpoints/tumormarker...
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Thank you Deanna!
>Z<
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longtermsurvivor, My dentist recommended GC Dry Mouth Gel which seems to help me. I purchased it in the pharmacy dept. of my local supermarket.
Diane
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Thank you, Deanna. The last two links you gave led to nice charts that list non-cancer reasons for an above-normal score on various TMs. But darn, I don't see any reason there to account for my rising CA 27.29. In my case, my markers were normal three months into taxol, and only in the past few months have they been bumping out of normal range. The only thing I can come up with, other than something bad brewing, is maybe dead tumor cleanup, since there would be a lot of that to be done and maybe it takes a while. Let's face it, I am having pre-appointment anxiety!
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Thanks for the sauerkraut tip Deanna. At this point I'm willing to try anything and am happy to first try something natural like this. I wonder whether Kimchi would have a similar effect. Hoping trying sauerkraut for the first time in 30 years goes well...
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Let me know, Jen. I have a jar of sauerkraut here and haven't had the courage to open it yet. I believe it is a pre-biotic, recommended to help with intestinal immune health. My notes say fermented vegetables, so maybe kimchi qualifies too.
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I eat live sauerkraut and drink the juice for my guts, but also muscle cramps and nausea
I live in a region where probiotic, fermented foods from grapes to hops to tea leaves to local dairy products (live yogurt, kefir & cheeses) to cabbage, carrots and beets to wood-fired naturally leavened breads are well-made and well-prized.
Here's the website of fermentation guru, Sandor Katz:
http://www.wildfermentation.com/which-book/
And more on the topic from the Weston A. Price folks, who espouse yet another heal-all dietary approach:
http://www.westonaprice.org/health-topics/lacto-fe...
A 3-year-old newspaper article on my local farm to fermentation festival & books on fermenting by local authors:
http://www.pressdemocrat.com/news/2214278-181/ferm...
Hope this tickles your fancy and you can make, find and enjoy these foods closer to your home.
Best, Stephanie
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Hi All,
I started on Ibrance /Letrozole in February this year and have not had any noticeable side-effects. I don't have a ton of stamina, but I am also a 64 year old who doesn't get enough (understatement...) exercize and lies around on the couch reading too much, so THAT doesn't help!
I had lost my hair during AC chemo, but it grew back on this protocol. I do have persistent low WBC, so I went from 125mgs of Ibrance to 100mg. My onc says we will fiddle some more with either dosage or lengthen the interval, if necessary. I am happy to say that my scans have been good (last one was in September) and that my tumor markers continue to decline. YAY!Best wishes to all!
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Nice to meet you Katty. I started in February as well. Some people tweak the dosage, others tweak the interval. We really don't know what is better. Glad you are doing well. Exercise is really important, but it takes surprisingly little to make a huge difference. My favorite book for couch potatoes is The First Twenty Minutes. I personally exercise a lot, but on the days that I can't it helps to remember that the difference between no exercise and 20 minutes of exercise is huge.
It helps to add your diagnosis and treatment history to your signature line. You modify your profile AND make your information public. This gives everyone context when they respond to your comments. It raises the level of the discussion on BCO quite a bit relative to other sites in my opinion. Now if everyone would keep it up to date!
>Z<
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Z please answer a question for me and anyone else that has an opinion. The "Truth About Cancer" is on again and I am confused about what they are saying and what traditional medicine is saying. In their info they are saying cancer can be cured by building up your immune system and letting your body heal you. They seem to have all these medical experts that advocate the alternative way. I think I just want to know if some of you have researched any of this info and what you think. If you have an opinion please let me know. Thank You0
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Airlinegal - I come from a research background and I see a lot of alternative medicine is frightening and self serving quackery. A lot of the stuff in the Truth About Cancer is quackery in my opinion. At the same time, not all effective treatments will make it through the FDA process. I am an investor in startup companies and I would never invest in ta company developing a cancer treatment that is not proprietary. I would never get my money back.
Ibrance, Femara and Xeloda are examples of proprietary compounds that can be legally protected for a period so one company can sell the drug exclusively and set the price for a period of time. Vitamin D and curcumin are examples of non-proprietary compounds that any one can sell, so the price gets set competitively. No individual company can get a sufficient return from selling non-proprietary products to pay for the FDA approval process.
For this reason any cancer treatment that is not a proprietary drug will not become standard of care in our system. I don't see a big pharma conspiracy, just basic market forces at work. I see substantial evidence that mistletoe, curcumin, alpha lipoic acid, cannabis, vitamin D, vitamin C are effective treatments, but these treatments don't have the money behind them to make it through the FDA process. Diet and exercise have been shown to have the same effect as a line of chemo on survival, but your insurance company doesn't pay for you to have a nutrition and exercise coach.
I also don't think alternative treatments are necessarily safer than FDA approved drugs. Alternative treatments are just drugs that didn't make it through the FDA approval process. The fact that they came from a plant doesn't make them safe. The graviola plant, for example, is a common treatment for cancer in Peru. I think it works. I drink graviola tea, but at certain doses it is a potent neurotoxin that causes something like parkinson's disease.
I also don't think that alternative treatments should necessarily be used to the exclusion of the FDA standard of care. There are drugs that are appropriate at certain times. Doctors do overestimate the value of a small statistical improvement in outcomes in a population and underestimate the damage of side effects on QOL and our ability to fight the disease. Again, no conspiracy, doctors want to help and they have nothing else to offer but these drugs. But we have some very strong FDA approved tools against cancer.
So how do we navigate this minefield as a patient? I think you want a competent alternative doctor or naturopathic oncologist as part of your team, alongside the medical oncologist and the radiologist and the surgeon. The best ones are trained as medical doctors, but have training in the alternative treatments. These people tend to think outside the box and outside the treatment guidelines established by the FDA and insurance companies. They provide important balance to the treatment strategy.
In sum, I believe there are effective alternative treatments, but I don't think you can self medicate with alternative treatments any more than you should self medicate with chemotherapy. It is interesting to read online about about alternative cancer therapies, but in the end you want a specialist with appropriate experience and training overseeing this part of your treatment plan. There is some truth in the Truth About Cancer, but that is not where you should get your complementary treatment plan.
That's how I approach it myself, in any case.
>Z<
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Thank you Z0
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Z, that was an excellent response. I totally agree with you.
I watched a few hours of TTAC, and I found some of it contradictory and not sufficiently vetted for my satisfaction. But people all around me were just taken away by it all, and several people urged me to buy the dvd set. SIGH. Since I have always used complementary/integrative modalities for family health issues, some people are surprised that I am not going all out for the kinds of methods featured in TTAC.
I would love to quote what you wrote here on Facebook. I won't because that would not be cool to quote someone here anonymously outside of this private area... but just know that this explanation you gave needs to be heard more widely.
Maybe then, well-meaning and super earnest people would stop suggesting that I do fringey stuff like eat a tablespoon of smashed asparagus every day (no, I am not making this up). LOL. If that cured cancer, we would have enormous asparagus farms everywhere (instead of Monsanto corn and soybean farms).
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Hi Airline Girl,
Long before I got breast cancer in 1990 (active disease since 1991), I sought out alternative approaches for my rare genetic condition. I worked in a non-profit natural foods store. I not only know about, but engage in a wide variety of healing approaches that many consider "alternative".
My standards for efficacy aren't based on clinical trials or conventional medical knowledge or research, but on what works for what I'm dealing with! I still incorporate innumerable CAM/holistic and integrative approaches in my hospice care.
Along the way, I've had to learn to suss out true hope from hype!
Every encounter with "The Truth About Cancer" makes my skin crawl!
It's full of half-truths, conspiracy theories, specious claims and self-promoters whose interest and caring seems more about their own profits than their "patients'" well-being.
I wouldn't trust these folks with my pocket book or my health!
Of course there's an element of truth to what they share, but the breathless way they deliver THE TRUTH is off-putting. And I think their false assurance, especially to those of us with MBC (metastatic breast cancer) is often irresponsible.
I'm no apologist for conventional cancer treatment, but my discerning body warns me to keep clear of these folks who sound more like hucksters than healers.
Airline Girl, you might ask yourself if your wish to believe them is denial or bargaining because you've received an overwhelming diagnosis and don't want to trust conventional medical approaches. Luckily, you don't face an either-or choice! You can choose a both/and approach that's holistic, integrative and palliative (addressing symptoms as well as disease. I think it makes no sense to kill the patient while killing the cancer).
You might ask about "The Truth About Cancer" at bco's alternative forum, as members may have a different reaction than what I've experienced:
https://community.breastcancer.org/forum/121
best healing regards as you find your way in the MBC jungle, Stephanie
xxx
Sending a patient to do battle with cancer without any training is like parachuting a soldier into the jungle without the benefit of survival training." —Michael Lerner, president, Commonweal http://www.commonweal.org/health-healing/
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Yes yes yes, Stephanie. Thank you. Love that quote at the end, too.
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To put it simply, I believe there are things we can do to help our bodies -- as well as our minds/spirits -- at the same time we are using conventional medicine. This complementary approach makes sense to me. Here are three books:
Anti-Cancer: A New Way of Life by David Servan-Schreiber
Life Over Cancer: The Block Center Program for Integrative Cancer Treatment by Keith Block and Andrew Weil
Integrative Oncology Ed. by Donald I. Abrams and Andrew Weil
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Hi Lulubee,
Seems like you and I come from similar places as we've approached our MBC diagnoses.
And I'm so delighted that others area also trying "whatever works" to feel and function as well as possible with our situations.
Lulubee, you bring up an important part of living with and being public with a diagnosis of MBC - well-wishers who believe in and push treatments (conventional or alternative) that we know we don't want to pursue.
Even though I've been on hospice for nearly a year and been assertive about my choice to take a palliative care approach, rather than an aggressive one, I still get specious advice ranging from new conventional cancer breakthroughs to experimental treatments to clinical trials to aggressive chemotherapies then onto Mexican clinics, Philippino psychic surgery, John of God in Brazil and local and distant ayahuasca ceremonies and TTAC. Dr. Lissa Rankin is a local medical "authority" and Kelly Turner's Radical Remission has become a cancer bible for many.
Ugh!
I'm eternally kind and know others' unsolicited good advice is about their own mix of love and fear...love for me, fear of looking at suffering and death as facts of life that I've accepted.
Yes, I seek out all possible aids for feeling as well as possible, but spending my life fighting isn't the peace I wish for myself.
Others will make other decisions for themselves, but telling me what to do next because they don't want to deal with their feelings around mortality should be "improper and unsupportive advice".
Rant over and back to sleep again, Stephanie
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Thank you for all your input. In analyzing myself, I was diagnosed with MBC in April after having Stage I breast cancer in 2000. Back then we were told if you make it to 10 yrs, your home free. So, when diagnosed with Stage IV to my bone, I was shocked (just like anyone else) and in a state of shock because I thought I was going to die tomorrow. But like some one just said in their post...I too am a lot more at peace with this diagnosis and I have hope for a few more years to live with the medications we have. TTAC series seemed like it was something different that I could do to help myself. I guess I am just gullible sometimes. I am working thru all of this and in some ways growing as a person too.0
