Ibrance (Palbociclib)
Comments
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Claire, That must have been pretty scary with your jaw. I'm glad to hear it is feeling better and will be thinking of your with the Rad's Tx.
Z, you always have such a handle on the research and help explain in such clear and simple language. I appreciate the clarification on meals with Ibrance although I do take my right after dinner. You also are an inspiration to stay moving no matter how. good tip Airlinegal, on just walking all over your house. Winter is coming here and when I really tend to slow down. I need to keep moving!!!
The only dental issues I've had on the Ibrance was when I first started the 125 dose last year. I had had a new crown already replaced two MONTHS before and the first week of Ibrance I got an excruciating pain in my jaw and around that tooth. I immediately had to see my dentist who prescribed a pain pill and it lasted about a half a day then disappeared. But definitely strange....
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Hi everyone.
Dropping in. Tomorrow will make 4 weeks that I've been off Ibrance due to low blood counts. I have the next bottle of it, in the 100 mg dose, but I haven't gotten the okay yet to start my second cycle. No idea what this means for me and my cancer. I am trying to believe it's not a big deal.
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NineTwelve.... you're still on a hormone blocker of some sort, right? If so, going off ibrance for a month or so really might not matter too much. Until ibrance came along, people were just on hormone blockers. I am on Femara (Letrozole). What are you on?
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Ninetwelve - A month isn't a big deal as the AI are very effective on their own. ditto eelder.
>Z<
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I'm also on Faslodex and Zoladex. And I see my oncologist in a week, so I can ask him if this is something to be concerned over.
I'm definitely feeling the cold more these days. I changed to my flannel bedsheets the day after summer solstice.
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Hi Z, Artist, Cheryl and all - back from Dr Beron at UCLA, he confirmed a jaw met to left mandible which is very rare. (1%) Next step is to see a specialty dentist for rads clearance, then get my CT/rads run-through, and then start rads. Rads to jaw is tricky as salivary glands may stop producing during treatment which can trigger an onset of cavities. Thank goodness my back molars are already crowned. Unfortunately the UCLA specialty dentists don't bother answering their phones to set appts, instead you leave a message and they call you back 24-48 hours later. Imagine my frustration trying to schedule this urgent appt. on top of getting my lung drained on Monday. I now await a call from the specialty dentist on my cell phone which I may miss as it does not ring in my office. My bloodwork is good, Ibrance round #10 doing fine. I start round #11+ fas on October 13th. Definitely having a glass of white wine with rice and curry tonight - soft foods for awhile. Steph - do you know anyone who had a jaw met? (()) Claire
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Hi Claire,
1% - scary unknown territory! I'm glad you're in LA and good hands.
Only know OF Deb Rags at https://www.bcmets.org/articles/177795
Her email address is there and since she just posted about it last month, I imagine she too is finding her way with them.
Deb's blog is at https://dont-stop-believing.org
btw, I have intense cotton mouth at night and at times, it's less controlled and more devastating than the pain. There are products like Biotene for lubricating the mouth, but I find drinking water at night and good oral hygiene the best I can do for it.
warm hugs, Claire, Stephanie
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Claire - My thoughts are with you as you navigate this unusual met. Very glad that you have the best of care. The jaw feels very ... I don't know ... necessary. Not where I'd like to get a met or radiation. But bone mets are pretty easy to zap, or so I hear. Did you have any theories why your jaw popped?
Please keep us informed.
>Z<
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From the irrepressible Amy Berman re. single dose bone radiation for her symptomatic bone mets:
Adventures in Choosing Wisely
by Amy Berman | October 23, 2014
Posted in category Palliative Care, Uncategorized
Amy Berman prepares for her image guided radiation therapy.
I live with stage IV cancer—cancer that has spread to the far reaches of my body, an incurable disease, a terminal diagnosis. But if you saw me—if our carts randomly bumped into each other in the supermarket—you would never think I live with serious illness.
And let me add that I feel as well as I look, just great.
I am four years into one of the most devastating diagnoses and I haven't visited a single hospital. This means that my care is much lower cost than others in my situation. How is this possible?
One answer is that my health care team and I choose wisely.
Choosing Wisely is the name of a national movement led by the ABIM (short for American Board of Internal Medicine) Foundation and funded by the Robert Wood Johnson Foundation that engages more than 60 provider organizations to identify procedures, tests, and treatments that deliver quality care at a lower cost.
The evidence-based recommendations coming out of the provider organizations inform clinicians and the public to improve the quality of care, goals the John A. Hartford Foundation supports. In May, I was a panelist on the Google+ Hangout event Choosing Health Care Wisely, sponsored by the Robert Wood Johnson Foundation. And Hartford Foundation grantee the American Geriatrics Society partnered with the Choosing Wisely campaign to create a list of Five Things Physicians and Patients Should Question.
Recently, I had an adventure in choosing wisely.
I live with stage IV cancer—cancer that has spread to the far reaches of my body, an incurable disease, a terminal diagnosis. But if you saw me—if our carts randomly bumped into each other in the supermarket—you would never think I live with serious illness.
And let me add that I feel as well as I look, just great.
I am four years into one of the most devastating diagnoses and I haven't visited a single hospital. This means that my care is much lower cost than others in my situation. How is this possible?
One answer is that my health care team and I choose wisely.
Choosing Wisely is the name of a national movement led by the ABIM (short for American Board of Internal Medicine) Foundation and funded by the Robert Wood Johnson Foundation that engages more than 60 provider organizations to identify procedures, tests, and treatments that deliver quality care at a lower cost.
The evidence-based recommendations coming out of the provider organizations inform clinicians and the public to improve the quality of care, goals the John A. Hartford Foundation supports. In May, I was a panelist on the Google+ Hangout event Choosing Health Care Wisely, sponsored by the Robert Wood Johnson Foundation. And Hartford Foundation grantee the American Geriatrics Society partnered with the Choosing Wisely campaign to create a list of Five Things Physicians and Patients Should Question.
Recently, I had an adventure in choosing wisely.
I felt a deep pain in my back, one like I had never felt before. It was not helped by changing my position or taking an Advil, and it only got worse over three weeks. I was due for a bone scan, which my health care team uses to track the spread of the cancer in my lower spine to avoid a fracture. But the bone metastasis had never caused me pain. And this deep pain wasn't anywhere near the bone metastasis.
The bone scan showed a new spread of cancer to my fifth rib and a tiny portion of the sixth rib. It was exactly where I felt the gnawing pain. After consulting with my palliative care team, I opted for radiation therapy. Radiation therapy is the standard approach for treating pain due to the spread of cancer in the bones.
But my team and I wanted single fraction radiation therapy—just one dose of radiation—instead of 10 or more doses. That's the recommendation of Choosing Wisely. Single fraction—one bigger dose—means quicker relief, significantly lower cost, and research on more than 16,000 people shows that the health outcomes are just as good.
It's astounding that roughly 96 percent of folks in my situation, here in the United States, get 10 or more doses of radiation. The single fraction alternative offers three significant advantages: Better health. Better care. Lower cost. It is estimated that the average cost for an episode of treatment drops from $7,500 to $5,000 when the Choosing Wisely recommendation is followed, with no change in health outcomes. My radiation oncologist, trained at McGill (the Harvard of the north), said that single fraction radiation therapy for bone metastasis was the gold standard where he was trained.
It was my turn at bat and I was choosing wisely.
Then it happened. A glitch.
It's astounding that roughly 96 percent of folks in my situation, here in the United States, get 10 or more doses of radiation. The single fraction alternative offers three significant advantages: Better health. Better care. Lower cost.
My radiation oncologist, a brilliant, young Andrew Garfield look-alike, told me that he needed to perform image guided radiation therapy and my insurance plan did not want to cover it.
The reason he felt it was necessary to use the image guided method was because the area requiring radiation was next to my spine. If the radiation hit my spine, it could mean temporary or permanent paralysis. I would still receive a higher single dose of radiation, and the difference in reimbursement to him would be nominal. He thought it might be $20.
To be exquisitely clear, my insurance plan would cover the basic single fraction radiation therapy, but would disallow the claim (for a few more dollars) if image guided radiation therapy were used.
So what did the very savvy radiation oncologist, and star of this blog, do?
He told the insurance plan that he would be forced to do the standard treatment course of 10 doses instead of single fraction radiation therapy at a cost of many thousands of dollars more to the plan if they did not approve the paltry few dollars to ensure the safe delivery of single fraction radiation therapy next to my spine.
That did it. The treatment was approved. My health care team and I chose wisely. The one dose worked brilliantly … a walk in the park. I traveled to a meeting the very next day, smiling.
I am a strong supporter of Choosing Wisely. My care team and I have consistently followed the recommendations since 2010—before Choosing Wisely existed. I walk the talk of value in the way my care is structured and have saved roughly $1 million to date while feeling well and working.
Based on my recent adventure in navigating a potential roadblock to Choosing Wisely, I have a recommendation to add: Include payers in the mix of organizations working to forge high-value care. I will be watching to see if my insurance plan is at the table.
xxx
Please follow link in title to the full article that contains many links and related resources!
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Lalady, my neighbor had sinus cancer and before they could do radiation, they had to pull a couple of teeth. Hopefully since you have crowns they won't have to do that. Can you have the radiologist or Glaspy place the call to the dentist for you to speed up the process?0
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Hi Cheryl & Z - Dr. Beron's office can't reach the dentist as they do not answer calls, rather a machine takes your personal info and calls back in 24-48 hours. Just off the line complaining about this unprofessional protocol and that I would like to go somewhere else, except Dr. Beron only uses this UCLA specialty dental team. Beron's assistant, Emil, tried calling and was likewise surprised that they mechanically "pool" patient calls and return them at their discretion/timeframe. No appt yet, plus the dental office called Dr Beron this morning instead of me. Oy I think my crowns are in good shape, finish my #10 rounds of Ibrance tonight. I am seeing Dr Lee for a pain management appt at UCLA Santa Monica office at 2:00pm. Steph - I reached out to Deb in MA, she has not seen her onc yet about her jaw and cheek met. (()) Ladies please check your dental work carefully on Ibrance.
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Hello, Dianarose. I am slowly learning about ILC mets. They can be difficult to image, so you want to make sure you have a radiologist with enough experience. In other words, one who specializes in breast cancer and has seen some ILC. And make sure the referral to radiology says ILC and not simply breast cancer. Was your CT with contrast? If you are having so many symptoms, wouldn't they want to start with chemo, to get faster results? Also, you said something about removing the tumor, but isn't it possible that systemic treatment could help you avoid surgery? I agree with dlb that when things get complicated, make sure you are at the most specialized cancer center you can access. Finally, as far as the liquid diet, I hope you are not trying to get by on those awful canned drinks. Do you have someone who will prepare food for you right now? There are books like The Cancer-Fighting Kitchen by Rebecca Katz. It has recipes listed under categories such as (undesired) weight loss, anemia, etc. There are many liquid options that are real food that is healthy and appealing. Sending lots of good wishes your way!
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Yes, AnimalCrackers, I have noticed yellowing teeth, and I blame it on letrozole and estrogen-deprivation. I got a home bleaching kit with custom-made trays, from the dentist, and use it every few months. I use the lowest strength bleach over three nights, rather than risk a stronger bleach.
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Shetlandpony- I have an appointment with a radiologist here tomorrow but also made one at Lahey for Friday. At Lahey I sent my reports and a nurse navigator matched me up. Whatever is in there is causing a lot of kidney problems as well as small intestine problems. I am having chronic infections on the side with the tube. The goal of removing it is to relief the ureter to be able to take out the tube and clear up the ongoing infections. They are also hoping to relieve what ever is pushing on the small intestine so I might move up to some soft food. I will check out Rebecca's site. Thank you
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Claire, that is crazy and frustrating. Hopefully the wait will be worth it. Which Dr. Lee are you seeing and why do you have to go to Santa Monica? I am surprised they don't have a pain management doctor in Westwood. Maybe they have a UCLA pain mgmt Doctor closer to where you live or where you work. I just switched cardiologists and pulmonologists they are both still UCLA doctors but closer to home and free parking. I see the new Pulmonologist this Friday.0
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Hi Jen! Been on Ibrance/Faslodex 4 months. Initially had sore throat, still have extreme fatigue and low blood counts at end of cycle. I find that as long as I drink lots of water and don't lie down for at least 2 hours after Ibrance, I'm ok. Otherwise reflux can be bad.
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Claire, Dianerose - you are in my thoughts. Please keep the updates coming.
>Z<
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Just finished my first cycle of Ibrance. I think it's a blessing that my WBC counts run on the high side. They dropped from 6.7 when I started to 3.4 at the two week mark. Other than some slow digestion and achiness (which could be letrozole related and is not enough to even begin to complain about) round 1 has been ok. I'm ok if it gets worse and keep reminding myself of the TM flare the first few months. I'll be getting labs drawn Monday. I definetly notice a difference in how when I'm exercising vigorously and getting in bed early. My main menopause issue is waking up at 4:45 most mornings. Now if I can just use that time more productively
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Jen, you do have a high WBC count. I started off with a 4 point something and mine fluctuates from 2.0 - 2.9. Have you tried melatonin to help you sleep?
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I am on a whopper of a dose of melatonin - 9 mgprolonged release. I definetly have some anxiety since its scan week and a dear friend has been given some devastating health news. I wake up though at that early hour feeling good. It's a big change but I'm adjusting and getting in bed before 10pm. I'm curious to see how this proceeds
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Hey Jen, that achiness is almost certainly the letrozole. I had that as well for the first month and then it went away almost completely. I put 1 teaspoon of turmeric in my morning green smoothie (with avocado and coconut oil for fat - better absorption) and I swear the minute I started doing that the achiness disappeared. My oncologist is a big believer in a tsp of turmeric daily, however you ingest it (with fat for sure). I have tolerated ibrance/letrozole well and hopefully you continue to also.
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eelder, you probably know this, but black pepper also significantly improves turmeric absorption. I also swear by and often recommend it for tx induced and other joint pain, and an Indian friend recently reminded me about research done in India that supports this notion -- that without the black pepper, you're only getting about 1/3 of its benefit. Just thought I'd mention this in case others don't know it. If you do turmeric or curcumin in a supplement, as I do, the better ones contain black pepper or a black pepper derivative.
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Popping in to say my MO wants me to join an Ibrance trial following progression to bones. I met the trial team in July but was refused due to some improvement. Well 2 months later the picture has changed. Fas was a possibility in July but they must have recruited other participants be now and not sure it's still available. The other offer was Tamoxifen with Ibrance. Has anyone tried this combo or heard of it?
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longtermsurvivor and others....has anyone checked into alternative cancer fighters. I have been reading a lot about the truth about cancer. Do you think this is a hoax. I am sure you have researched everything out there. I probably need to be taking supplements other than D-3. But not sure where to go for that info. Do not want to take any supplement that would counter the Ibrance/Femara Meds. Also, spoke with SpecialtyPharmacist and asked about hair loss she said there werereally no supplements to take that would help. Has anyone else spoke to someone about what to take?
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Linda - Tamoxifen with Ibrance is not common, but certainly worth trying if that is what is available. Faslodex and Ibrance is tried and true and often works well. Welcome to Tribe Ibance. Let us know how it goes.
Airlinegal - Most of us have some kind of complementary care supervised by a a complementary oncologist or physician. Mine's a little unusual as I have taken massive doses of Alpha Lipoic Acid orally and by IV in addition to Ibrance/letrozol and the usual suspects: curcumin, vitamin D, coQ-10, multivitamins etc. More important than supplements is diet and exercise. My favorite reads are Anti Cancer a New Way of Life and Andrew Weil's books on anti-inflammatory diet. I don't think supplements help much in the absence of major lifestyle changes.
I also don't think supplementation is a good idea without the supervision of a doctor who specializes in complementary medicine for cancer. This website of graduates form Andrew Weil's program in Arizona is an okay place to start looking for doctors who look holistically at cancer. Your medical center may have people who do complementary care associated with the institution.
The complementary care is expensive and not covered by insurance. Ultimately the lifestyle changes - diet and exercise - give the most bang for the buck. But to answer your question, most of the people on this thread have explored complementary care and come up with a path for themselves. There is a lot of diversity as the choices for complementary care are highly individual.
>Z<
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Yes! I have heard about the black pepper and should have mentioned it
I usually put a pinch in my smoothies.... I don't taste it at all. And then some days I forget! My doc doesn't want me taking curcumin tablets which is unfortunate as it would be easier than piling in turmeric into my smoothies. Says jury is out on whether or not it's safe in that form. I don't necessarily agree since MANY take curcumin tablets and are FINE, but I feel I have to listen to my doc. She does encourage turmeric in coffee, smoothies, food, etc so I'll do that.0 -
I would add "stress management" to ANY protocol, no questions asked. If you weren't already stressing hard, you will be once the cancer circus starts up.
Just got the word from my MO: Okay to start my second round of Ibrance. WBC's are above 6.0. Yay. (But also, awww - because I was kind of hoping I would get to stay off Ibrance indefinitely. When I was on Tamoxifen, I could pretend I wasn't dealing with chronic illness. Not on the Fas/Ibr combo, though.)
Also, I finally told my coworkers that I have MBC, in our Monday meeting. It's good to not have this secret anymore (after two years of fronting). If I was expecting a ton of support and sympathy, though, I would be disappointed. Most of 'em are acting like it never happened.
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NineTwelve - Cut your co-workers some slack. It is hard for people to grasp what we go through. That's why I am here on the forums. I don't really want to drag everyone round me through this, so I mostly don't tell people and I put up a front. But it is good that they know. Good not to put up a front. Their kindness will show up in small ways down the road. Awesome WBC. Amen, Amen on the stress management.
>Z<
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I just finished my 3rd cycle of Ibrance. I needed to have scans to prove to my insurance that this drug is worth the cost. I received a call from the nurse that stated that everything was good and they would get the letter off to the insurance. Funny thing, I received my 4th cycle of meds after the scan, but before they could do the letter. Not sure what happened there.
Then late last night, my scan report appeared in my e-Chart. I was reading all the "this is normal" blah blah when I read this:
There continues to be an area of increased attenuation 13 mm in size in the median segment of the left lobe of the liver seen on contrast images. No other liver abnormality is seen. Prior to the 6/20/16 CT study I cannot identify this lesion and therefore it would be suspicious for metastatic lesion to the liver.
Wait, WHAT? I went back to my 6/20 study notes and nothing really about anything with the liver except it being fatty (thanks, Tamoxifen). Why didn't my onc mention it?? I am seriously put out! I have an appointment with him tomorrow and I'd better get a good explanation about this! Am I over reacting?
Amy
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Hi Amy,
The radiologist's concern for metastatic disease in your liver does sound worrisome, but please don't get ahead of yourself, your oncologist or getting a second opinion from another radiologist. You are on the not-so-happy part of scanxiety - continued uncertainty about test results. Ugh!
Can you access your 6/20 scan to see if the same radiologist read it? Their styles of observation vary widely. Some note every little thing, while others yawn and miss something that can be seen on a later review.
IMHO, your work now is to contact your oncologist's office tomorrow and try to set things in motion, but take a deep breath and focus on keeping sane as possible through the weekend and while you sort this out.
Mets to liver and other organ involvement aren't fun, but nor are they necessarily awful and evil. And you've many steps and breaths to take before you even get confirmation of suspicious activity.
Amy, I'm so sorry you're in this situation and will keep an eye on your posts for updates.
You are not alone, we are here beside you.
warmest healing wishes, Stephanie
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