Ibrance (Palbociclib)
Comments
-
If I drive in any direction, including north, from my house, I will run into a border patrol station within an hour. After a Pet scan, I carry the paperwork with me at all times. There is nothing funny or cool about the border stops down here. My German bother in law came here without his green card once. They wanted to travel around the area. Got stopped repeatedly. He brought it with him next time.
0 -
Hi all;
I have been reading all your posts and congratulations to all the good scans. I'm still waiting for my first one on July 13th. Just saw my oncologist and asked him what he would do if my blood levels were low. He said he would simply take me off for two days then start me again.
I just ended my 2nd cycle of Ibrance and began my week off on Saturday. I'm having swelling in my feet and ankles. Is this something common? I'm drinking more water today but still they're swollen although not as much as yesterday. I really don't want anything to interfere with me being on this regime as my oncologist thinks it's working for me although he is still wondering about my ovarian cancer. I am being checked carefully physically and with TM's over that.
I'm so appreciative of everyone who is posting as it really helps in so many ways. Thank you all. God bless.
Cathy
0 -
Hi Cathy,
Sorry you have to be here, but it's a great place for information and support. Hope your scan is good! Not sure that the ankle swelling is called out as a side effect, but I am now experiencing it for the first time in my 66 years and am probably more fit than before Dx. It goes down overnight but is very obvious after walking or hiking and at the end of the day. I'm finishing up cycle 32. My doctors don't seem concerned.
Wishing you all the best on this treatment!!
0 -
Kathryn;
Thanks for your comments. If your doctors don't seem concerned I am relieved. They are not as bad today so am drinking more water today and keeping them raised when I'm sitting. I am 69 so perhaps age does have something to do with it lol.
Cathy
0 -
I have slight ankle swelling at end of day. I walk. It disappears by morning.
0 -
Jaycee49-
I didn't mean to offend about saying my experience was "funny" and "cool". I guess you have to know me. As I said in my post, I am kind of a nerd. I live by the rules and have not had any run-ins with the authorities. I have only had 1 speeding ticket ever, never been to court, and never had any dealings with the Police. My traveling companions also know the type of person I am. They kidded me for a while after the experience -- telling others we know that I was stopped by Homeland Security and laughing that I am a " threat". It just added some light-heartedness to a tough situation----going for an opinion on my MBC. Sorry.
0 -
Hello all you lovely ladies - I haven't posted in a while but do check in occasionally. I've now been on letrozole and ibrance for 10 months, and it's been a journey, that's for sure. Two doses of flu and a chronic lung infection as my neutrophils sink pretty low each month. But the side effect that's bothering me the most is CHRONICALLY ITCHY SCALP! It's driving me mental. Has anybody else had this? I've looked it up and it appears to be some kind of auto-immune or allergic reaction. Would love to hear from anyone who has suffered likewise, and what you did to resolve it. Much love, xx
0 -
Candy, I wasn't offended at all. I just find it interesting how differently the northern border and the southern border are handled. And my German brother in law, who is over 70 and has been here for over 30 years, does not look much like a threat, either. It also amazes me that he came here with the intent to travel to Arizona without his green card. He's a smart guy but that was really dumb. He and my sister talked their way out of the situation but still. Dumb. Don't ever worry about offending me. It's pretty much impossible.
0 -
VonHilda, I too have itchy scalp. It is not so terrible I can't stand it, but it is always there a little, especially in the back at the neckline. I do use medicated shampoo occasionally, but try to use conditioner only most of the time to keep this thin scraggly mess softer.
0 -
Hi All,
I took a much needed week off of everything (including cancer) last week and went to the beach with my family. It was wonderful to forget all about my troubles for awhile. But, reality hit me hard on the way back. 102 fever and fatigue and weakness took over my body on Saturday. The fever has resolved, but the weakness is still here. I had my first follow up pet scan since starting Ibrance today. That, combined with all my aches and pains, and I'm stressing big time. I had my tumor markers checked before I left, and they are still sky high. I'm trying to get back to work, but I'm too focused on what my pet scan results are going to say. Gemzar and Carbo didn't work for me, so I'm curious what they'll suggest if Ibrance is a dud for me too. I'm also terrified of progression, so I'm saying lots of prayers that my newfound pain is just from the long drive back from the beach. And, I'm glad for the reminder about staying away from kids. My tech never said anything, and my nephew who is leaving to go back to England tonight, is 4. I'll try to keep a safe distance (except when I give him a giant hug to say goodbye!).
Missy
0 -
gerogiabird, you are at the top of my prayer list today. Most of all, I pray you get some peace but I also pray that you are not only free of progression but that your cancer is taking up less space than before, that maybe you left it at the beach! Should you have progression, I think you're going to be surprised at how many options there are.
After my illness this past winter I was weak for weeks afterward. I think Ibrance leaves us without the ability to recover quickly from our various illnesses. You'll perk back up.
Love from PatG (formerly a citizen of Atlanta so, of course, very wise!)
0 -
Promising research? Hard to tell. I’lllet Cureious and other resident scientists weigh in!
https://www.eurekalert.org/pub_releases/2018-06/uoc--bc062118.php
0 -
I can tell you that for my friend who is doing the 5 days on, 2 days off palbo, the fatigue is definitely less on that regimen. She has way more energy.
0 -
Penny- How exciting!!! Dang!!! This group is great, they are experts on mTOR inhibitors, and they did this very clever different way of asking why every other drug in this class except for Affinitor has met with no success. And we just lost stupid Taselisib after a phase 3 trial showed it only benefitted by two months.. And they find its because this class of drugs doesn't sufficiently block the Aurora A kinase, and when they do that by adding in Alpelisib, then it shows super-strong synergy with every mTOR and PI3K inhibitor they tested!!! Huzzah!! Progress!! Well, it has to make it yet to a clinical trial and then show some synergy in humans, but at least the drugs that one would want to test already exist!! And then we can hope that much smaller amounts of each drug would be needed to work, which hopefully would knock back the awful, horrible, terrible, no good side effects of these drugs. Hope they hurry it along. Thanks for sharing that story!!
Husband- thanks to you too for keeping up on the 5 day on two days off idea- I have tried it this month and I think I have better energy as well. I'm on the 125 mg dose, and rather than drop down I decided to try this alternate dosing schedule. I'll see what my ANC counts are in from the bloodwork coming up next week.
0 -
Interesting- Just because its news to us and the scientific community does not mean it is necessarily news to the pharma companies. They don't always publish all the promising research they find, especially if they can just push it into a trial and be first. A phase 1b trial is just finishing up on Alpelisib in combination with the Affinitor-Aromasin drugs.Here is that link, can anybody find any information about updates from this trial?
https://clinicaltrials.gov/ct2/show/NCT02077933
Also there is a new clinical trial just opening up at UCSF and other places of Alpelisib with Faslodex or Letrozole for patients progressing after Ibrance/Femara. Given the new information, it seems like one might want a little Affinitor or other mTOR inhibitor added in to this mix?
https://clinicaltrials.gov/ct2/show/NCT02077933
0 -
In PubMed, there is a recent abstract about Alpelisib, but this is just monotherapy. Some activity seen, so they conclude it should go into combination tests.
Phosphatidylinositol 3-Kinase α-Selective Inhibition With Alpelisib (BYL719) in PIK3CA-Altered Solid Tumors: Results From the First-in-Human Study.
Juric D1, Rodon J1, Tabernero J1, Janku F1, Burris HA1, Schellens JHM1, Middleton MR1, Berlin J1, Schuler M1, Gil-Martin M1, Rugo HS1, Seggewiss-Bernhardt R1, Huang A1, Bootle D1, Demanse D1, Blumenstein L1, Coughlin C1, Quadt C1, Baselga J1.
Abstract
Purpose We report the first-in-human phase Ia study to our knowledge ( ClinicalTrials.gov identifier: NCT01219699) identifying the maximum tolerated dose and assessing safety and preliminary efficacy of single-agent alpelisib (BYL719), an oral phosphatidylinositol 3-kinase α (PI3Kα)-selective inhibitor. Patients and Methods In the dose-escalation phase, patients with PIK3CA-altered advanced solid tumors received once-daily or twice-daily oral alpelisib on a continuous schedule. In the dose-expansion phase, patients with PIK3CA-altered solid tumors and PIK3CA-wild-type, estrogen receptor-positive/human epidermal growth factor receptor 2-negative breast cancer received alpelisib 400 mg once daily. Results One hundred thirty-four patients received treatment. Alpelisib maximum tolerated doses were established as 400 mg once daily and 150 mg twice daily. Nine patients (13.2%) in the dose-escalation phase had dose-limiting toxicities of hyperglycemia (n = 6), nausea (n = 2), and both hyperglycemia and hypophosphatemia (n = 1). Frequent all-grade, treatment-related adverse events included hyperglycemia (51.5%), nausea (50.0%), decreased appetite (41.8%), diarrhea (40.3%), and vomiting (31.3%). Alpelisib was rapidly absorbed; half-life was 7.6 hours at 400 mg once daily with minimal accumulation. Objective tumor responses were observed at doses ≥ 270 mg once daily; overall response rate was 6.0% (n = 8; one patient with endometrial cancer had a complete response, and seven patients with cervical, breast, endometrial, colon, and rectal cancers had partial responses). Stable disease was achieved in 70 (52.2%) patients and was maintained > 24 weeks in 13 (9.7%) patients; disease control rate (complete and partial responses and stable disease) was 58.2%. In patients with estrogen receptor-positive/human epidermal growth factor receptor 2-negative breast cancer, median progression-free survival was 5.5 months. Frequently mutated genes (≥ 10% tumors) included TP53 (51.3%), APC (23.7%), KRAS (22.4%), ARID1A (13.2%), and FBXW7 (10.5%). Conclusion Alpelisib demonstrated a tolerable safety profile and encouraging preliminary activity in patients with PIK3CA-altered solid tumors, supporting the rationale for selective PI3Kα inhibition in combination with other agents for the treatment of PIK3CA-mutant tumors.
0 -
thereishope4us..... I've just started cycle 16 and I have been having 3 monthly scans but will probably be having them 6 monthly from now on as my previous MO has moved to another state and the manager of the trial I'm on taken over my case. He prefers 6 monthly scans, for which I'm grateful. About your question, though, I have my bone scan and CT on the same day. I haven't had a PET scan yet but imagine it would be similar. I go in and they put my tracer in the vein for the bone scan because my veins are rubbish and they need to be given time to get that right first. Then I go to the CT waiting room and drink barium, then I'm called in after an hour. The actual scan takes no time. After that, it's back to the bone scan waiting room and wait for my scan which takes about 40 minutes, I'm told, after which my cannula is removed and I'm freeee! It feels like I've been let out of gaol but I'd rather get it all done at once as it's a 40 minute drive to the centre and 40 minutes back in heavy traffic.
Goincrzy.... with my tumour markers rising, I'm half expecting a change in meds by the end of the year and I'm expecting I will be put on Fasiodex with Ibrance. I've heard good things about both. Very little about Fasiodex but I do know Ibrance intimately, having been on it for the last eighteen months. I can't predict what your MO will do but Ibrance's bark is worse than its bite! Most of us here swear by it (and sometimes at it heheh) but it's really quite ok. I have the nail issues and the dry skin, fatigue and nausea common to most of us but it brought my TM down radically. In the beginning....... I'm waiting to find out what other trials they having going which my treatment can be safely attuned to and am half expecting it will be Fasiodex/Ibrance. Fingers are crossed in anticipation of it going that way. Others here say Fasiodex is a breeze so I'm going along that pathway. Apart from its more extreme side effects, it's ok and I totally believe in it. Good luck.
Since my last post (described in the first para here), I haven't mentioned my onc appointment. My trial nurse has switched me to afternoon appointments from now on, which is much easier to pull off, as I was having issues with Ibrance, Letrozole and Ibrance all at once, with little to no respite from commitments. Afternoon appointments were supposed to provide my path lab with a higher than usual score below 6 after one week's break and a careful climb back up to at least 1.0 in the second week.0 -
Penny-78 and Cure-ious, that med combo seems promising! Thanks for sharing the links. Please let us know updates. Thanks!
0 -
Cure-ious, thanks for your quick reponse and filling in all that detail! I'm glad to have all that. Even though it didn't seem so conclusive or noteworthy, I was just a little down after seeing the update on the Ibrance/Falsodex trial (no signficant improvement on OS?) and was very glad to find so much more positive and meaningful research!
0 -
Cureious - Good to hear that you are feeling more energy on the 5/2 schedule. I wonder if the change in blood counts will be subtle and take some time to be substantially better? It's hard to compete with a week or two off for recovery. At the very least this schedule stands to improve response while offering some relief from suppression of bone marrow. One of the theories of the action of palbo is that the G1 cell cycle arrest isn't immediately fatal to the cancer cell, but rather puts them into senescence, and that long term senescence leads to cell death. If that is the case, continuous treatment might be better.
0 -
Husband, My primary interest in trying this schedule is to hopefully forstall getting resistance, the cancer does not have as long a period of time to try to mutate its way to escape the drug. That may be so naive, because some models say the chemoresistant cells can already be there before the drugs, just takes them a long time to show up as majority of the population. I am going to keep on this way long enough to at least find out if the feeling better is cumulative. I like not taking any Ibrance on the weekend!
Penny- I saw those OS data Pfizer put out also, but I have kind of stopped worrying about overall survival, because it is hard to make a dent in those numbers given that MBC patients are on average relatively longer-lived than some other cancers, and may end up on many different treatments, some effective, some not. The way I think about it, the improved PFS is mostly of value if it gets me to a spot where some other new better treatment becomes availalble, and/or to a point where it more clear what the next treatment should be...
0 -
VonHilda...I'm a bit late on your post and I'm not sure my problem is like yours. It has some similarities in that, since I started on Letrozole in November 2016 I've had itchy skin all over. Not chronically, like yours though. It mainly bothers me at night and I scratch and scratch all up my legs, arms and scalp, just enough to relieve it. So far I've found nothing to relieve it but I've alerted my trial nurse (I'm on a Let/Ibrance trial) and she told me it's not uncommon. Not that that will help either of us other than knowing we're not the only ones scratching away at night. (in between sweats haha)
A general question for girls who have skull mets and/or brain mets..... I was asked at my oncology appointment last Wednesday whether I get any tingling in my legs and I answered no, which was true, but since the weekend I've had...yep, you guessed it! tingling in one leg but infrequently. More often I get tingling in my head, all down one side or the other. I've also had crazy headaches, not like previous headaches but like someone is mining for gold in there! I asked the MO on Wednesday if it's possible for skull mets to mine into the brain and he said he had only seen (or heard? I didn't take that part in. I wasn't functioning well that day) one case of it.
I never used to worry about anything but lately I've turned into a worrier instead of a warrior and I will get control of my thoughts again once I've had some answers to this.
0 -
Hi all, I wanted to post a link to a recent paper about the AuroraA kinase inhibitor, (Alisertib, Tozasertib) from a phase I trial of ER-positive MBC. Penny found a report from UCSF showing that they found in the lab that this drug synergizes with any kind of mTOR/PI3K inhibitor drug, which is a whole class of drug we know that we need, especially after progression on Ibrance/Femara, but the drugs have all been disappointing, and so something that makes this class of drug work a lot better is exciting.
In the link below, they tested the AuroraA kinase inhibitor Alisertib with Faslodex. The rationale was that activation of AuroraA kinase is one way that the cancer can become resistant to Faslodex or AIs, so you want to push that pathway down and restore sensitivity to ER and estrogen inhibitors.
Only nine people tested, six of which had progressed on Faslodex alone.Median time to progression was one year. One woman got 25 months, another is still going at 31 months, so it seems promising (?) and they suggest that this drug may be reversing resistance to hormone therapy, although they aren't directly comparing it to Faslodex alone (because presumably that wouldn't do anything for these women anyway). Side effects were neutropenia (is that always the case!), all grade 2, so doesn't seem so bad for side effects.
Considering the new data published, perhaps this trial is the two-legged stool of the the three-legged stool we would like to be taking, a combination of Faslodex + AuroraA Kinase inhibitor +mTOR inhibitor (ie, Affinitor/Everolimus or one of the newer drugs in this class? Maybe there will be some trial where they extend this and add a low dose of mTOR inhibitor?
Also, another paper said that taking statins makes the AuroraA kinase drugs work better.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58422...
0 -
The phase 2 trial of this combo, comparing AuroraA kinase inhibitor alone versus with Faslodex, is ongoing at the Mayo Clinic:
https://clinicaltrials.gov/ct2/show/NCT02860000
0 -
Today I had my monthly appointment at my MO. My usual MO is on vacation, therefore I had a different MO (she is new to the hospital, I believe). I asked her quite a lot of questions, which have been bothering me for some time, and she took a lot of effort to reply. There are quite some interesting apects I learned today, therefore I would like to share them with you in case that it helps anyone else as well:
I currently get monthly Zometa for my bone mets. During the first 3-5 months of treatment, a weak sclerotic rim was formed on the outer edges of the bone mets. The scan after 8 months showed no further sclerotic healing, only stable disease. I was somehow disappointed and asked if it would make sense to switch to Xgeva. The MO told me that it is already a very good sign to see weak sclerotic rims at all. It rather never occurs to see complete sclerotic filling of the bone mets, one will usually always see the (remains of the) bone mets in the CT. Wrt a potential switch, she told me that as long a I get along well with the Zometa, they will stick to it (frequency after 1 year still to be discussed). In case of progression, they will change the systemic treatment, not the bone protection. Additionally, she told me that there are new research results available showing the the risk of a secondary cancer is slightly elevated using Xgeva (I believe 0.6% vs 0.1%, they will not take anyone off Xgeva because of this, but still).
My primary tumor has basically disappeared under I/L (there was one small area in May, which may be some remains, but it was already questionable; my normal gyn did not see anything any more last week) and so have my cancerous nodes (again, my gyn did not see any enlarged node any more) while my bone mets are at least stable (it is very difficult to get a PET-CT in Germany because of the high cost, but additionally my docs do not like them too much due to the many false-positive results, therefore I do not know how much/if at all they are active). Therefore, I asked the MO, whether it would make sense to consider surgery of the breast at this point of time. She told me that she does not see any benefit from oncological point of view. My tumor load of the primary is already low and the disadvantages of the rather big surgery (I have very big boobs, European size 95H) would be quite high (they would need to do the other breast as well, because my spine would not be able to handle the imbalance; not to talk about optical issues at all). Additionally, any remaining tumor cells would be an indicator if the current treatment fails, as they will be the ones to grow again first, hopefully before any further met sites. And last but not least, there might come a point when the primary tumor will be so big that is threatens to break through the skin (plus I already have a few (remains of) skin mets). In that case, one would be happy about any amount of breast skin available to perform surgery then to avoid open wounds.
0 -
Hi Netta! Happy to see your good results! Stable is perfect , plus the primary tumor is not visible any more. Congratulations! It's time to celebrate, peace of chocolate cake, wine or whatever makes you happy!
Hugs. Elena
0 -
Netta, celebrating with you! Also, thanks for all of the info. I get Zometa once every 3 months so wonder at your dosage, etc. I also only see my onc every 3 months so you may have better access seeing her so often.
0 -
Cure-ious thanks for posting more info on the Aurora A target — it sounded encouraging to me but sometimes I do have trouble sorting out hype vs reality! And I’m usually (on my good days
with you on the way I look at the OS data. There is SO much research into so many areas it seems like a terrific goal is to hang in there until the next treatment combo is sorted out. Netta congrats!!! And thanks for the helpful info. In some ways I’m on a similar trajectory to you and it took onversations with multiple MOs for me to understand that my own response has really been pretty terrific. Btw you’ve probably seen me post before — for bone only I’ve also been told the primary offers a helpful vehicle to measure response.
0 -
Netta- I always read the comments of other MOs with great interest- thanks for the explanations!
And Congratulations on stable and moving forward!!
0 -
Hi All,
I just received my prescription for Ibrance. I feel like this happend too fast and so soon. I would appreciate any insight as to how to deal with side effects and what to look for. Respectfully, I'd rather hear from people that are going through this, rather than an opinion shared by a doctor. Any insight is helpful
Not going to stop believing,
Kelli
0
