Ibrance (Palbociclib)
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Hi from Hong Kong!
I have been on palbo 100mg for 27 months. This Monday pet scan report shows that some inactive nodes reappear and some other nodes deteriorate. I wonder what else medicine can be used after palbo?
I had two chemos before,
2015 TEC x 6 + tomography
On tamoxifen
2016 Weekly Taxol + E
On ferama
2017 Palbo + ferama
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jaycee oy vey that made me laugh about writing in huge letters about the extreme vaginal dryness and it STILL got ignored. JESUS!! What do we have to do?? A song and dance with a hat and cane??
My cycle 26 Ibrance arrived today. I was running out the door to my see my psychologist and grabbed the package on the way. It was fun and hysterical to show her how this teeny little itty bitty pill bottle was sent in a giant box filled with tons and tons of wrapping, cold packs, a freezer bag, etc. She couldn't believe it! At least they are no longer sending the Ibrance in a bag that reads "BIOHAZARD!! CHEMOTHERAPY DRUG!!" It is a little less inconspicuous.
As I was running to therapy, I did a quick stop in my local coffee shop for an espresso. The barista was very curious about the box I had with me. She said, "That looks important." I told her it was medicine. She said she wanted to ask but didn't want to be rude. So I told her: This is medicine for metastatic breast cancer. She asked a few more questions and I could see the uprising of emotion in her eyes. She also asked the big question that pretty much every one asks: HOW DID YOU FIND OUT??
I think that our society really fears cancer and when we meet someone with it, we want to understand it. I told her that much of process is in my head, and I need to keep my mind as strong as possible.
An interesting start to the day...Now off to work
Love to you all on this holiday weekend,
Philly
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Philly, my Cycle 25 bottle arrived today - in a brown envelope. Barely padded, maybe 1/4" thick? Not even in plastic! It was propped against the front door when I got home from the store. I was shocked at how nonchalant my specialty pharmacy has gotten, LOL. My first Rx fill had the bottle in a yellow biohazard bag wrapped in bubble wrap, in a giant cardboard box, filled with styrofoam peanuts, with a signature required for delivery!!
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I take senocot nightly for constipation and it works a charm. If things start to bung up I simply take two at night for two days and all is fine. It is a natural laxative and I highly recommend it.
My original onc took care of every issue I had outside of cancer and it was wonderful. He's retired and I have a new, but wonderful onc. I now use my md for all issues outside of cancer. She's known me for 20+ years, understands my overall health....even quickly sent me for tests so that my ovarian cancer was found early (stage 1) so I am very happy. I don't have a PCP or others and am not sure if other cancer patients at the hospital do or not. I even get my blood work done once monthly and don't hear from them unless there's an issue or if I call my onc's nurse for assistance. So far so good.
Oh, and my Ibrance comes in a regular pill bottle the same as any other medication. Nothing special at all. I pick it up at the drug store.
Love to you all,
Cathy
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Great discussion all you lovely ladies !!!!! I love you all !!!!! My sisters !!!!!
I have always liked my PCP. But then, I was never REALLY sick. Minor illnesses, but never something like cancer. Not until now.
I have thought "What do I really want from the docs". What I want is to be heard, really heard. My pain to be controlled---whatever the cause of it. To not have to struggle to have a good BM-just "go" every morning and forget it. Not to wear out soooo easily when doing things. And to have my emotions validated and have help through the tough times.
What I really want is not to have cancer. For things to be like before the diagnosis.
Ichangedmyname-- We do not have psychiatrist/psychologists in our cancer center. We do not have social workers. I have never even had a nurse navigator. I reached out once to see a counselor--we did not mesh. Today I called another counseling center and made an appt in 2 weeks to talk with someone there. We will see how that goes, not expecting to be much help.
Also ichangedmyname--- I think it was good you had that opportunity to talk with the barista. I think of those moments as teaching moments. MBC is so misunderstood. When I talk to others about my situation I try to explain it to them in factual terms. "This is the facts, it can happen to anyone, and it happened to me." I try not to scare them. I want to be open to the conversation.
My Ibrance comes in a small brown box--with bubble wrap and in a plain Ziploc bag. It came in the CHEMO bag at first but last few months the CHEMO bag is gone. I do ask for a signature at delivery so they won't just leave it at the door for it to get stolen.
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Hokay, I plan to move on to Faslodex/Ibrance (Palbo) when I progress.
But my medical oncologist knows that I do not want to switch meds too soon. Is it possible to wait and see if the nodes will resolve?. What does your medical onc recommend? Can you follow up with a CT contrast scan to make the PET is not showing inflammation or artifact?
Keep us posted. Please seek out 2nd opinion if you are still unsure what to do. We do not want to go thru our medicines too quickly if possible.
S
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Me again. I haven't figured out how to reread the posts AS I am posting without loosing my post. So I reread all and have more comments to follow:
Moomala- YES !!!! I have other issues but cancer-- rheumatoid arthritis and mechanical issues with disc problems in my back I have had for YEARS. So the pains COULD be from something other than the cancer. Your Paget's reminds me of that. You have other issues too. I think this just complicates the pain issues and the docs REALLY don't know what to say. I want to say " Treat my pain like you would for someone without cancer". What would they say to that.
Jaycee--- Yeah. "My arm just fell off". No comment from the doc. Why ask the questions on the questionnaire if you are not going to address the issues??!!!!! I was thinking the next doc visit (MO or PCP) when they ask about depression I am going to say " Fill in the blank any old way. It doesn't matter how I answer." See what the nurse/doc says about that.
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My wife feels the same way about the questionnaire they have her complete at every visit. Its like they don't even read it. I think its just to meet with some requirement in form, but not in spirit.
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This topic is cracking me up..very entertaining comments by all....I can't believe how many similar experiences we have in common regarding our doctors and cancers centers..I will add my favorite one...
What about when they look at the monthly bloodwork and nothing is said or done to fix all the markers that are out of range..from liver markers to the perennially low hemoglobin....ah?
Ainthat grand??
.
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Just in case no one has posted this. FDA approval granted:
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Now I feel like a real country bumpkin. What is a PCP? Lauren has been in touch but maybe taking a break. CT scan for me today ...best wee nurse ... young and absolutely on it in term of the right thing to say and do. Results next week ...Deep Joy!
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You guys are right about the reason for the survey you're completing during your visits. It's all about accreditation. The cancer centers hate it because all the reporting uses resources that could be better spent on patient care. If you want to bother, this link will show what it's about:
https://www.facs.org/quality-programs/cancer/coc/s...
[Note the psychosocial services "requirement": "Policy or procedure that ensures access to psychosocial services either on-site or by referral, and includes annual monitoring of the referral process." It turns out just having a list of area psychologists was enough.]
In my 20+ years working closely with cancer centers I saw very little the federal government did to enhance the quality of cancer care. I watched one independent oncologist after another give up a nurturing practice to join a hospital because he couldn't buy drugs at the same low prices they did and couldn't compete. Never underestimate the power of private hospital companies and their lobbyists!
This doesn't mean there aren't still good oncologists who care deeply about their patients. (I have one from the old school.) Bureaucracy is just a hindrance to providing the best care. You have to be your own advocate as you would if this were your child.
Love from PatGMc
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Karen, a PCP is a Primary Care Physician. American insurance companies started this category as the "gatekeepers" who make referrals. People in the USA on Medicare can self-refer and this is not required.
I hope your scan made you happy!
Love from PatGMc
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PatgMc---Woohoo for new meds coming out!!!! But this one - PI3K inhibitor- how do we know if it will work in our individual cases?? I still do not understand all of this. But I will keep this for future reference and when I progress I will ask my MO if this could be used for me.
Praying for more meds to be invented to help us all.
Karen- Praying for your scan results. I have been with my PCP- primary doc- for over 20 years. I went to him for annual exams, when I got sick, and for influenza vaccines each year. He knows my history and the type of person I am. But still, I am frustrated that he doesn't seem "there" for me when I am facing this cancer battle. I think I read and study about MBC more than him. Thanks to you all. See, I know about this new drug, PI3K inhibitor, - thanks to PatgMc - and the clinical trial of the "stronger Ibrance" med that has been posted about. Knowledge is Power.
Edited to say..... The clinical trial that Frisky is on for the "stronger Ibrance" med.
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Candy, see paragraph 2. The FDA also approved a test for this one.
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Thanks Pat.
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Frisky--- Oh my goodness!!!! You made me think I was going crazy!!! I was looking back at posts about your trial with the "new Ibrance" med and I couldn't find the posts because I was looking under your screen name Miaomix. You changed your screen name !!!!!! Dang girl, I thought I was losing it !!!!! Here comes the brain mets !!!!
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I love that the brand name for the P13K inhibitor, Piqray, is so appropriate. I'm easily entertained.
PatGMc
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candy,
A genetic test of your cancer will tell you if you have the PI3K mutation.
Theres a thread on the mediciation
https://community.breastcancer.org/forum/8/topics/865451
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Candy you cracked me up! I was a little bored today, so I changed my handle...just for fun...
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Thanks SandiBeach..
I want to continue palbo too as it looks still work (to some extent), hopefully can change to combo with faslodex...
Will see my onc next Wed and i will update my status here.
Btw, i got my little bottle from the hospital pharmacy directly
Hong Kong is such a small place and nobody got their meds by delivery 
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Hey, hey, PIQRAY (aka Alpelisib)!! Finally!!! Took them dang long enough!!
Thanks so much for posting, Pat, that's exciting!!!
I bet they approved it right in advance of ASCO opening up next Friday, so that all the "buzz" can be about how we have a new drug. Hope Rugo is presenting an update on the ByLieve trial, which is what SusaninSF participated in (some others here too!) and there will be updated data from the completed SOLAR-1 trial that was the earlier trial- SOLAR-1 had only about 20 people who had previously been on Ibrance, so ByLieve was done to enroll only people who had to move on from I-F, once they become endocrine resistant,so from that trial we will get to see how the PFS numbers look.
Huzzah, this is real progress. And with the test to tell us if we have PI3K mutation, so that is very clear. What is unclear is how this affects use of Affinitor-Aromasin, which has a somewhat overlapping activity, but some big differences too, and no tests to guide whether you are or are not likely to benefit from it..
PS PFS from SOLAR-1 was 11 months (meaning half of patients went longer than that). Now that its an FDA approved drug, hopefully they will start up some combo trials- in lab studies it works best with Alisertib, big synergy there. The hope would be they could combine with Alisertib and use lower dose of the PIQRAY, which as we all know gives a bad rash and elevates blood sugars..
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Cure-ious, you told us it was coming! I'm so thankful it happened today because I get to announce it at our HopeUp! MBC support group Sunday.
About the side effects, I'm hoping a lower dose will be offered and perhaps the side effects can be lessened (is that a word?!). My oncologist is always up for starting people at a lower dose.
Here's to progress, friends!
Love from PatGMc
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Ibrance does contain lactose.
I am lactose intolerant and I take lactaid with my Ibrance in the morning with my coffee and some type of food.
Just wanted to let others know in case you have severe gas or bloating issues when taking Ibrance.
I wished I had bookmarked the article that addressed this. It did encourage those with lactose intolerance to speak with their MO if taking Ibrance.
Edited to add article, see section #9.
https://www.breastcancercare.org.uk/information-su...
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Does anyone remember ever hearing about the theory of alternating treatment/drugs back and forth frequently so as to confuse the cells so they can't figure out a way around any one therapy too soon? Maybe I was dreaming cause I can't find anything about it now.
I don't see my oncologist till july - just PA so I wont ask till then.
Wishing you all the best.
GAILMARY
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Oh, no, gailmary! I hope that isn't you remembering me espousing one of my crazy theories. I take cycles off of Ibrance about twice a year for various reasons, mostly continuous UTI's. I was probably trying to justify that with the theory that when I take a cycle off, the cancer doesn't have the Ibrance on board to figure out how to get around it. Of course, it is crazy but who knows? I just finished cycle 36 and that's not counting the cycles I took off. That would make six more. Hmmm.
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I can think of a couple possibilities you might be remembering, GailMary-
one was the story about a new strategy for cycling people on and off drugs, before resistance sets in:
https://www.wired.com/story/cancer-treatment-darwi...
another was using metronomic low-dose chemotherapy:
https://journals.lww.com/md-journal/Fulltext/2019/...
Triple-negative cancers need a DNA repair protein that is not needed in normal cells, so this may be a future targeted therapy:
https://www.scripps.edu/news-and-events/press-room...
PS I just realized the top two links are the same group and same approach- their recent report (2nd link) was of a woman with TNBC treated now for 14 years, using the strategy outlined in the top link..
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Gailmary ,I think I remember a report where experiments on mice suggested a 7 week break from Ibrance allowed for cells to recover and not become resistant, but that was an early stage of research, I don't remember reading anymore about it.
Cure-ious thank you for another ray of hope.
Hurrah for PIQRAY
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As we make note of yet another new treatment approval for MBC let's stop for a minute to celebrate
another success story. This is Judy Perkins who is now years out after having used up all available
treatments for MBC before bravely signing on for an experimental immunotherapy. Google her and learn about her
journey but first look at this picture just taken today of her on a kayaking journey to Canada. I'm thinking
Judy's about 4 years out now, give or take a little.
This could be you one day.
It could be me (except for that afraid-of-water thing).
Keep praying. Keep hoping. Keep finding joy in what you can do!
Love from PatGMc
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A little encouragement for any newbies (and everyone else!). I'm just finishing up cycle 24, and just returned from a 9-day cruise from Rome to the Greek Isles. My husband and I used to gain an average of a pound a day on cruises (all that wonderful food available practically round-the-clock!), but this time I actually lost three pounds - because of all the walking. One day, we walked seven miles, according to his FitBit! I'm feeling great, and took my Ibrance along with me, keeping my phone alarm on US time, so I was still taking it at the same time every day.
This is a shot of us after hiking the 200+ steps to the Parthenon at the Acropolis in Athens - I originally said I wouldn't try, but with my husband's encouragement and a few rest stops along the way (not sure why it was advertised as being so difficult in the first place - the "steps" were far apart and not steep, and there were lots of natural benches to sit on!), I made it without even being short of breath... unfortunately, he moved during the shot in front of the actual Parthenon, so it's too fuzzy to see, but here we are looking in the other direction!
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