Ibrance (Palbociclib)
Comments
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Cure-ious,
No, Piqray and ESR1 testing hasn't come up yet but, to be fair, I've only been seeing the NP lately since I'm stable. I'll have to ask her what they're doing about Piqray. Does it seem to you that people who are doing well on Ibrance are coming off to switch to Piqray if they have the ESRI?
On the supplement front, I used to take a bunch. But lately, I'm just taking my vitamin D. I was experiencing pill overload and even though many were supplements, I just had to stop. I do plan to go back on digestive enzymes though. Oh, and I've been using a product called Recept (a CBD tincture) for inflammation when I have a lot of pain.
I can't believe it but I'm coming up on the fourth year anniversary of my dx. I was de novo. ANd the stats scared me. 26% chance to make it 5 years....
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When I was diagnosed with secondary cancer Dec. 2013 I was told to get my house in order and take any holidays I had planned to do in the future as there may only be a year left!! The next doctor said I had 3 to 5 years!! Thanks !!
Nearly 6 years now and I am still here, waiting for the next 'big' treatment regime to make all our lives better. I try and live one day at a time (I don't want cortisol to kill me). It doesn't always work, but I like what Joan Rivers said
''I enjoy life when things are happening. I don't care if it's good or bad. That means you are alive.''
Hugs for those waiting for scan results or going through difficult times and dancing with those happy with their stable results.
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Great that everyone here is feeling supported, right now I personally don't. Scan results at end of month hopefully..so will take a break from this busy thread just now.
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Good luck with your scan Karen. I read here but don’t often post. I think your exercise/activity suggestion was a good one, for those that are able to be active. I’ve had very little activity for a couple weeks as I deal with a cold and cough. I definitely notice the difference in my state of mind, and I miss the contact with my friends at the rec center. Hope to hear more from you when you feel like it.
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hi Karen,
I hope you aren’t not feeling supported on these threads and that’s why you are taking a break?
Or are you not feeling supported in your life by the people around you?
Good luck with you scan results. That’s a LONG time to wait. Why does it take so long to get your results I wonder?
I’m the type of person that needs results ASAP. I hate waiting and it causes me too much stress. So I ask my MO to call me as soon as he knows what’s going on. Thankfully, he respects my wishes. Is that something you’d consider doing or is it not that much of a stressor for you?
Sending you a bear hug from Philly!! 💛💛💛
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Karen- I am sorry you are not feeling supported by the folks on here. I hope I am not the culprit. I reread your post to me about exercise. And I agree that getting out in the fresh air and moving does help ones outlook on things. When my sister fought depression years ago, her counselor said to go for walks outside. Exercise, in general, does not appeal to me. In years past I have joined a gym 2 different times and lasted 1 month then fizzled out. And the arthritis and lower back disc issue bothers me too. Anyway, I hope I can be more supportive for you. Please do not leave our group.
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Karen,
Hoping for good results on your scans!
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Rosie,
Didn't you just come back from vacation? I thought you went to Ireland.
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Jen, Well, that's what I was wondering about, how you are feeling with your FOUR year anniversary coming right up (!!!!), and still on I/L firstline!! Interesting that you just see your NP- how often do you get scans? Are you still on 125mgs? I tried the brocolli supplement I3C when the news came out that it can reactivate the PTEN tumor suppressor, but it is SO STINKY I dropped it, plus I did wonder, coming from a plant that it might have phytoestrogens and thought I'll wait for a new improved version to come along, but haven't seen anything on that. PI3K mutation would mean eligible for Piqray at some point, but the question is whether one would go for that after I/L or do a Faslodex-Ibrance/Abemaciclib for secondline, and was wondering what your doc thinks..
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Jen, Info, Cure-ious, candy, bev, Sandi, tanya and all of you here on the 'dance' floor - bco is the most helpful, supportive place to be! There is no supportive places close to home for me, so this is where I go. I wish all of us the best! Positivity and prayers, Janice
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Cure-ious- My MO mentioned 2nd line for me would be a PARP, not Faslodex- Ibrance when we thought progression after Oct CT. (Nov PET shows no progression) I don't know why she was choosing that route. I guess each MO has their own opinion of what to use next.
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Candy, did you have a genomic test like Foundation One or Guardant that showed a BRCA mutation in the tumor? You don’t have an inherited germline BRCA mutation, do you? Either of those could point to using a PARP inhibitor.
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Shetland- I did have F1 testing done in 2017 at diagnosis. Yes BRCA mutation. And PARP's were noted an option for future drug therapy.
BRCA testing done also and was Negative. So the way it was explained to me was NOT inherited but AQUIRED mutation. ????
Edited to say--- But how do the MO's decide what is 2nd line---PARP or Faslodex or Xeloda or …
So many drugs out there, but how do you choose what is 2nd, 3rd, etc.
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So the F1 is your answer to why a PARP inhibitor is on your onc's mind. Right, so YOU are not BRCA-positive. You have no inherited or acquired BRCA mutation, and thus no BRCA mutation to pass along, or raise your ovarian cancer risk. It is just the CANCER CELLS that have this mutation. And it turns out that in either situation a PARP inhibitor can work. My Guardant test three months ago showed a small percentage of BRCA mutations, and if that is increased in my recent test, I will get a PARP inhibitor, presumably added to my chemo. These targeted therapies add weapons to our arsenal. Everyone could be considered for Faslodex or Xeloda, but only BRCA mutations (or maybe other similar mutations, I don't know) mean this targeted therapy could be used. Hopefully your onc would re-test to make sure this mutation is still present. I — I should say the cancer — lost a ERBB2 mutation that we had thought to target in the future.
P.S. Do you know about Bestbird's mbc guide?
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Simone, we were on a river cruise in Europe. I’d love to visit Ireland but that wasn’t me. The timing of my cold/cough suggests I got it from the planes or airports going home. No surprise I guess. Hope everyone here is avoiding the germs
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Karen -- Sorry you aren't feeling supported. You are about one year ahead of my wife's MBC to the lungs diagnosis. It's been helpful for us to track your progress. For purely selfish reasons, I hope you'll hang in here. Good luck on your scans.
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Cure-ious,
I’ll be sure to ask when I go in next month for Lupron. I’m scanning every 6 months now. I see my NP as need and meet with my MO once per year. I can see him whenever I need to, but thankfully I’ve just been rolling along. I’m still on 125mg (and letrozole).
I can imagine broccoli supplement would be very stinky. I roast it a lot at home, and I definitely have the fart smell through my place. I’ve been thinking about Celebrex and adding for the reasons you are on it. If we start to see slow progression, the. I’ll definitely ask.Second line plans for me had been to move to Verzenio and Faslodex, but this was before the news of Abemaciclib having better results. So, not sure now. I’m really hoping to stay on I/L (at least through June) but am glad that they know more about loving to one of the other CDKs.
I did get some bummer news today though. When I was dx they told me my PET showed I was at risk for a pathological fracture in my hip. Since I just did a PET in Sept, I asked them To check it out to see if that is the case and, of course, I’m still at risk. They’re sending me to orthopedics. I’m so hesitant to have any surgery that would interrupt my meds. Well se
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Jen- Hhmm, wouldn't XGEVA take care of all that bone risk stuff?! I am glad you don't get so much scanning, my onc moved me back to every three months when I had some bit of progression last December, and its much more of a pain. Would love to only see her once a year!!!
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LADIES! I step in here to dance a bit with you and I find out you're crying in the car at the mall?! (Not that going to our local mall wouldn't make you sob....if you lived long enough!)
Don't any of you forget that you are MBC pioneers and there's every reason to believe you'll live to see the cure!
As a BC survivor since 1994 and an MBC survivor since 2012, I'm not blowing smoke at you. Three years on Ibrance and two weeks on Lynparza! (Lynparza cures Ibrance constipation. Who knew?!)
Keep doing all the complementary therapies that work for you and drop the ones that don't. (WTMI: I tried the Digestive Enzymes and had diarrhea in the card section at Hobby Lobby. Made no new friends at HobLob. Dropped the Digestive Enzymes.)
Cry when you must, then come here and find someone who needs your encouragement. They may not be posting but they're here. (Waving at you lurkers! Sending hugs!)
Pray for that nerdy researcher who holds the key to me and you living through all the nastiness of MBC and into playing Pickle Ball in some retirement village one day. The cure is coming. Say it with me!
Love from PatGMcLunatic
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Coming back to the discussion about how to reactivate the PTEN tumor suppressor. This is often down-regulated in breast cancer, as in many other cancers. PTEN inhibits the PI3K pathway, so this would also be good for cancers with PI3K mutations (because these mutations activate the PI3K pathway)
In May it was reported in Science that the broccoli supplement i3C/DIM can induce the PTEN to come back to life and fight cancer: https://science.sciencemag.org/content/364/6441/ea...
And reviews of this work: https://www.sciencedaily.com/releases/2019/05/1905...
However, its unclear what to take- the study tested i3C, which is converted in the body to several different compounds, so its not necessarily the same as DIM. If you want to try it, look for a version that is better absorbed, since that is a problem
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May I please apologize?
When I came here and acted all silly earlier I didn't mean to take away from the seriously painful days some of you are facing. I've had those days and nights.
Please just know that I love you and I pray for all of you every day.
And I'm sorry.
I pray for peace and better times ahead. I know they will come.
Love from PatGMc
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Sending hugs to all who need them.
Karen btw I joined a gym to try to do some of the exercise you encouraged us to do. sometimes lurking sometimes posting.
we lost another sister Monday- Muddling Through-. Her son informed us on another thread.Tanya
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Just went back and read some of Muddling Through's post. God rest her soul!0
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Hi All, I’ve just re read my last post and should clarify! This is one place where I DO feel supported.... I’m being messed about a bit locally with systems and processes not being fit for purpose (like my employer’s HR system and the department of work and pensions). Everything seems to require having to fight your corner and that’s pretty wearing
Thank you to those who’ve responded to lend an ear or a positive comment. Glad also that my progress is something of a help too. Much appreciated!
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Shetland= I do have Bestbird's Guide. I need to review it. And a person should ask onc to redo F1 studies at time of progression before med change?? Thankfully my PET shows stable, so I will not be changing treatment for the time being. But I need to file that information away for future use. I guess I didn't understand that the mutations may change on the F1 studies and a person needs a current report for med change time. Onc didn't mention that, just that PARP would be next treatment.
PatgMc- I am glad you popped in to say Hi. Love the Hobby Lobby story---you crack me up though probably not funny for you at the time.
Karen- Glad we misunderstood and that you are supported by us here.
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PatMCGlunatic,
You crack me up. I never thought about praying for the nerdy researchers. I love your positive attitude.
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Today, I had a redo. This time my daughter picked me up and we went shopping at her favorite places..so no mall this time. We splurged for coffee and I bought a dress.
No crying this time! Patg, I really laughed hard at your humor. You are so right. Who cries in the parking lot at a mall? No one. Well, unless it is the fact that you are at a mall.
Yesterday's sad day has passed. I guess we all have them.
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Interesting, a new paper came out showing that one way cancers become resistant to Ibrance or other CDK4,6 inhibitors is by down-regulating the P-TEN tumor suppressor. This is also a route to resistance to PI3K inhibitors, like Piqray.
As mentioned above from yesterday, one way to boost P-TEN is to take the i3C supplement- this could prolong the time to progression on Ibrance/Abemaciclib or Piqray
Alternatively, Celexcoxib/Celebrex is also reported to increase P-TEN levels
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pat you totally cracked me up with your post! No need to apologize in my book 🤗 I just think you are fabulous and you continually help me remember that there are no fires to put out and to calm the heck down!
Please keep your amazing posts coming. It’s the perfect kick the rear that I need to hear!! Xoxoxoo Philly
And Karen I am so glad you are supported here. Sorry that isn’t the case in your physical life. I don’t know the health system where you are but I know that we are very very lucky in the big cities in the USA. It’s a good reminder to be grateful for the care and medicine we have access to. I hope everything gets straightened out for you ASAP! Love philly
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hi Jens! Congrats on coming up on your 4 years! That’s so fantastic!!
And thanks for sharing about your supplements. I do feel like the D and Ca+\Mg+ combo I take is probably the best thing I can do with the xygeva (and it suggests doing so in the prescription literature...). I have decided to take “supplement holidays” on the weekends to give myself a break from all the pills. So far it is feeling like a happy choice 🤗
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