Ibrance (Palbociclib)
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hey Pat, I'm out, it's all done, my throat is sore from the intubation & eyesight blurry so laptop is zoomed in to the max, but yea I survived! Weirdest SE is the entire top one- third of my skull is numb, even hair follicles, and swollen even these many hours later. Eyes all dark ans stitched up lids, I look like an alien member of the KISS!! But, at least the healing has begun- bruising and stitches will fade, maybe in 4-5 days, and they say 10-14 days before I can show my face in public (well they aren't taking into account, my jagged-thin barely hanging on hair, straight from the Strawman in Wizard of OZ, but sadly that has no easy fix )
my sister tells me next step should be eyebrow microplaning (?); apparently it's a soft semi-permanent eyebrow tattoo; one can still can add makeup if need be, but gives no-muss brows for everyday
Also she said I was lucky to get in, as "all of Hollywood is getting their major work done right now", so they can look fabulous when the parties and award shows open back up, so there's that...
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IntoLight, Many of us are watching you closely, What Pat did, by going off of I/L for a bit at progression and trying something unrelated may have sensitized the cancer again to I/L
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Thanks all. Waiting is the hardest part knowing things are growing inside unchecked. I will be attentive for you all.
On another note, my fridge quit and I lost a lot of food I had stocked for the quarantine,,,ugh! Ordered another because this one seems to need repaired every year. It was supposed to be delivered this morning but got delayed a day... double ugh!! Didn’t find out until I finally called after it was a couple hours past the delivery window. The customer service rep was obviously working from home as I heard roosters. It is not like we can just go out to eat. I am reluctant to get too mad with all that is going on. Tried to reorder somewhere else but deliveries take longer now and we can’t do it ourselves so it would take even longer. One more thing to add to this stress.
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IntoLight— sorry to hear about your refrigerator issues. You might want to check with your home owners insurance to see if they cover your food lost. Some policies cover the loss depending on how the refrigerator stopped wir
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Cure-ious, happy to hear you're done and if not bright-eyed-and-bushy-tailed, then well on your way! If you decide to get your rear end done, I saw some actress warning not to go looking for that discount silicone from Home Depot! I look forward to hearing about your final eye results and the eyebrows too!
IntoLight, bummer on the fridge. Have you tried Instacart? We've given all the grocery delivery services a shot and have been delighted with this one. (Shipt was a mess and we don't recommend them.) If you pay Instacart's monthly fee of about $10 you can get unlimited deliveries of $35 or more. The secret was telling them not to substitute unless they texted for permission. For restaurant delivery we've been happy with DoorDash and BiteSquad. They've made some mistakes but they always make it right.
Love from PatGMc
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Intolight, hard as it is to wait, many of us were surely walking around for a year taking nothing before mets were discovered, the biggest difference is that now we know. better to take the time to make sure its the best fit; will they consider trials? If so, this waiting counts for your month off of any treatment that many require..
deciding against any more beautification projects, apparently the eybrow tattoos are painful, my motto; no pain, no pain
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Good for you!!!!!
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DodgersGirl...I am on 100mg dose. Maybe these new sores we are getting is because of the new tablet form?
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Cure-ious...wishing you a speedy recovery period! Regarding the microblading...is it ok for us to do that while being treated? I would love to get it done because I barely have any eyebrows.
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Thanks Ladies. New fridge is in, food restocked, and dinner dishes are now in the sink. The parties are in full swing around the neighborhood and there are lines out the door for the restaurants. This is Pacific Beach on Memorial Day weekend at its finest: the bay even looked full of sailboats and paddle boards. This next week is my week off; I will take my last Ibrance tomorrow, and see my onc on June 3rd. I have not quite figured out how I feel about that yet. I am exhausted from the work and stress of the fridge issues (too long and boring for you all here) so I am in sit-down mode. I am a huge Patriot so you all have a good Memorial Day.
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Another recent paper describes the large changes that can take place in endocrine-resistant breast cancer cells, new gene pathways that are turned on. They find that endocrine-resistance is associated with loss of GATA3 and gain of AP1, which are also DNA-binding proteins like ER that control specifiuc sets of genes. The whole paper is here, tho I haven't read through it all yet, maybe there are action-able insights..
https://www.nature.com/articles/s41556-020-0514-z
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my vision is too blurry to read through the above paper just yet, but it reminded me that often endocrine-resistant cancers are very dependent on CDK7. When I first started on this road, it seemed likely that one would progress from a CDK4,6 inhibitor to a CDK7 inhibitor, as these had just started in clinical trials. But where are they? there was one CDK7 inhibitor in pill form from a company in the UK, and a start-up company SYROS in Boston had one that was IV, but now it seems they are trying to plsy catch-up and rushing through a pill form, slowing down the clinical trials because it has to re-start with the actual drug they want to move to market. Will go research if any updates and come back with a link to CDK7 paper.
In addition, as we discussed before, CDK12 inhibitors are very hopeful, if they are not too toxic. CDK12 inhibitors seem to make hormone-dependent cancers sensitive to immunotherapy, and a small fraction of cancers have CDK12 mutations. so if you ever see a CDK12 mutation pop up, jump for some immunotherapy. The hope is that a CDK12 inhibitor drug plus immunotherapy will work. For now, SYROS has a CDK12 inhibitor but it is not in clinical trials yet. There is a drug, Dinaciclib, which inhibikts CDK9 but was recently found to also inhibit CDK12, and I see that UCSF is trying it in a clinical trial with immunotherapy. However, Dinaciclib was designed to inhibit CDK9, which is controlling expression of a ton of genes, so a drug inhibiting CDK9 and CDK12 would sound like it must have a lot of toxiciity? Anyway, its a good time to go see what's up with these drugs, keep an eye on them if either of them looks good in clinical trials they have strong potential for us
https://pubmed.ncbi.nlm.nih.gov/32340192/
addiing a recent review here:
https://pubs.acs.org/doi/10.1021/acs.jmedchem.9b01...
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Cute-ious- what about CDK 1 ? I have a CCND1 mutation which I heard is present in13% of breast cancer Mets are as well as many prostate, esophageal and pancreatic. Would a CDK 1 drug work for that ?
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Hello friends,
Here I was enjoying a cozy and quiet holiday weekend with my twins and husband and -- BOOM! -- I noticed a text from my oncologist from a few days ago asking me to come in for another set of scans (my last ones were in early March) because my tumor markers have risen and my CA27-29 is now elevated. .
From the beginning, my makers had always been delightfully boring, stuck in the low- to mid-normal range. I've read a hundred times on this board that markers are not dependable but I've got to say -- I'm scared!
So much for a fun and relazing weekend :-(
Penny
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Here is an update on SYROS website, they are now moving to the pill form of CDK7 inhibitor that allows a greater range of dosing options. They saw pretty good activity of the IV form of the drug, testing alone and with fulvestrant, but too many adverse events like naurea, vomiting, which they think they can control better with the pills. They had filed for IND to start clinical trials in early 2020, that is probably delayed now for COVID but hopefully will be starting soon.
https://ir.syros.com/press-releases/detail/170/syr...
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Nkb- I don't know about any CDK1 inhibitors, but for sure CDK2 inhibitors are being investigated for those cancers resistant to CDK4,6 inhibitors. There are multiple potent CDK2 inhibitors out there, including a triple CDK2/4/6 inhibitor from Pfizer (maker of Ibrance) that Frisky took in a clinical trial. CCND1 is the activating co-pilot for CDK2, so the idea is to inhibit that and return the cancer to CDK4/6-dependence.
The pill Pfizer is testing is not only a very strong inhibitor of CDK2 but also hits CDK4/6 stronger than Ibrance or Verzenio. Frisky had way too many side effects and others did too because she said they did a major drop of dosage after she left the trial. These cdks all have important roles in normal cells, so we don't know if it's possible to block all 3 at the same time without major toxicity. If anybody can push these drugs to market, its Pfizer as they got Ibrance approved right after enrollment for phase 3 was completed,based on the good results of phase two.
recent review:
https://cancerres.aacrjournals.org/content/79/13_S...
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Nkb- I see that CDK1 inhibition is useful for MYC-dependent breast cancers:
https://pubmed.ncbi.nlm.nih.gov/24444383/
BET inhibitors are also in development to inhibit MYC. Will read more on that and return to this interesting question later..
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Penny,
I know your fear of markers. Mine have been going up since January (CA27-29 and CEA) and again went up in my most recent blood pull last week, though not as much as previous months. But nothing so far on my scans. I had a CT with contrast last Tuesday, and this coming Wednesday, I have an MRI of my liver/abdomen (really more for my interventional radiologist than my MO) and a nuclear bone scan just because I haven't had one for a year. I suspect the MRI will be fine but the last nuclear bone scan I had, in May 2019, said that I had no metastases but only arthritis. Huh.
Anyway, good luck with your scans. I hope the increase in tumor markers in your case is only due to some weird thing and not due to progression. I think I hate tumor markers more than scans -- it's a real toss up.
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Cure-ious- Thank you. very interesting articles. I hope they figure out the CDK2 drug, wonder if 3 CDK blocks would be too toxic- was true of the triple blockage (A,B,and C) of the PIK3 inhibitors before Piqray. I have thought that a triplet of some kind would provide the best chronicity for breast cancer mets- perhaps because of the HIV success.
Hope the eyes are healing well- I need that surgery as well.
My hair got very thin on Ibrance- flourished on the Afinitor- now thinning again on Xeloda.
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BenJev, thank you for your quick and kind reply. You clearly get it! My DH and I had been in quite a joyous mood -- about to sit down to plan our twins "virtual" HS graduation celebration and the text knocked both of us off our feet. Since my markers were never even slightly elevated this is the last thing I expected and don't know what to make of it. I was declared NEAD in the fall of 2017 and have been feeling SO optimistic.
Good luck with the rest of *your* tests. I'll be thinking of you.
Hugs,
Penny
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Penny, don't let a lab test rob you of your joy. The reason I don't get tumor marker tests is because I watched that happen to many friends back in my days of running the Flying Colors Center. People lived their lives based on what their latest tumor markers showed and many of them were up and down until we finally convinced them to just let that go. I know you want to do what your oncologist says but if it snatches away the quality of your life, it might be time to consider a different plan. I know some people find tumor marker tests an accurate indicator of growth but my experience has been that there are more who don't.
So I'm praying you can let this fear go and get back the joy you were feeling before the notification. My mother always told us not to borrow trouble from tomorrow. I hope you'll take her wise advice. We have a silly little ritual for backing up to the minutes before something bad seemed to happen.....we just physically walk backwards (in time) for a bit and start the day over! Give it a try!
Much love from PatGMc
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Penny, I am so sorry to hear your news and understand your fears. I read it that your onc is trying to make sure there is no problem rather than just accepting the rising numbers at face value. It looks like she is on top of things. My markers were always low also and now that I have progression I still do not know their status as we don't follow them much. Please accept my prayers for you at this uncertain time hoping the new scans do not show anything to warrant your fear., and please, try to find some relaxation and joy this weekend.
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Penny-- Good advise given to you. I had a slow, steady rise in my TM's last summer/fall. But the scans looked ok. Praying your TM rise is nothing. And, as IntoLight said, good that your MO is on top of things and wants to look at scans to make sure all is ok. Hugs.
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I'm torn on tumor markers. My MO started tracking them after chemo/rads for stage IIIC. I had a bone scan that ruled out mets because of severe sciatica. They were normal for a year. My sciatica became minor, and I dropped all pain meds.
Then my CA 15-3 started climbing. It got up to 1386 (normal high is low 30s). I have not had any symptoms all this time. My MO switched me from Tamoxifen to Exemestane. I fasted more. My TMs started dropping.
Scans finally picked up a few bone lesions, and I started Ibrance. It was definitely stressful, but I might be worse off if we waited for symptoms to show. I know for many the markers are meaningless. Mine are still high, but continue to drop.
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Penny - As mentioned, try to have have some fun this weekend despite the TMs. As you well know, rising TMs may or may not be indicative of a problem. My wife and I will both be thinking of you this week and wishing you good scan results! My wife has her latest scan scheduled for this Friday so there's a couple of us with scanxiety this week! Good luck and hang in there
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Penny - Since your TM has been normal until now, you don't have a history that your TM is meaningful. You probably have no symptoms. It's very hard, but let your MO wonder about it. I hope it's just a blip and your scans continue to be clear. Enjoy this time with your family. Congrats to your twins!
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Hi everyone! I haven’t been on in a while but I think of you all often. Candy, did you get your results yet?
I didn’t have my scans in May. I’ll have them in June. They went down to a skeleton crew and were not doing routine scans. I could have faked a pain or pushed but I was fine with the delay. I haven’t left my house at all except to get zoladex and xgeva. The lung mets and COVID worry me.
IntotheLight, I’m wishing you long success on your next treatment.
Pat, it’s great you are back!
Cure-ious, I love that you had a lid lift and that the surgeon “allowed”it. That’s great insurance paid for it. I read so many woman trying to get mastectomies after stage 4 diagnosis and they receive push back for reasons other than it won’t increase survival. I had Botox on I/F and didn’t tell my derm I was stage IV and on Ibrance. I just didn’t want to be judged.
I did have the microblading on I/F and I freaking LOVE it!! They numb your brows up so you don’t feel a thing. It lasts a year.
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IntoLight - You went three years on Ibrance - that seems to be a good amount of time. I wish there was a different drug replacement which could zap the bone mets. Sending love and prayers your way.
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Pat, dear Pat, you always know what to say to put a smile on my face and some hope in my heart. Thank you for being here and being you.
Candy, Sernenity, BLMike, you are all so kind to weigh in with your thoughts and words of encouragment, You remind me why I always come back to this board no matter what is swirling around me. (And where else will I see my old favorite, Herman Hesse,quoted!
IntoLight, bless you for being here and being generous in spite of your own challenges. You were one of the first to welcome me on this board, and I've always noted our similar histories. I think you you so often!
My biggest challenge right now is seeming "normal" around the kids. My daughter is super sensitve and suffers greatly from severe anxiety. She's highly sensitve and knows something is going on. My DH and I want to be truthful but not send her into a downward spiral ... very difficult to navigate.
Anyway, I am SO greatful for you all!
Hugs,
Penny
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Novagirl- I got teary eyed when I read your post asking about me. I am feeling like that today. No, I have not heard my results yet. I had scans last Wednesday afternoon, MO appt tomorrow morning. I am cross posting a paragraph that I posted on another Thread this morning....
Crosspost--------So I am going back and forth on the scan results issue. I have my MO appt tomorrow morning, scan done last Wednesday afternoon. First I think, all is ok or the MO would have called me. Then I think, maybe there is progression and she didn't move the results to the patient portal because she doesn't want me to see them until she talks with me. Then I think, maybe she hasn't even seen them herself-- she had Thurs and Friday off, I think, then the weekend, then the Holiday. They are probably ok. I was stable 3 months ago. I don't FEEL any different. But I am getting nervous.
I know you all will understand how I am feeling. I will post after tomorrow's MO visit.
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