Hi there women!
I just got into a study at Georgetown for Palbociclib/Ibrance plus 5FU which I think is a great name for a chemo drug. I am calling it the FU cancer trial. The trial is for Stage IV HER2+ and you also have to be tested for something called RB to qualify.
Just "failed" kadcyla which was disappointing. It did not work for me; progression in lymph nodes, bones, and lumps in various places. And the Kadcyla had awful side effects. I feel like I am still recovering from it -- tired and just feeling blah.
Anyone else on this trial? I start the Palbociclib on Friday and will let folks know how it goes. It is cycles of 2 weeks Palbo then 48 hours 5FU. Will be on it as long as it works. Hoping for the best!
I hadn't heard of this trial, Cancerthriver. Hoping someone comes along that is also participating. Either way, we will be looking forward to hearing how this works for you
Cancerthriver I've not heard of this trial either but am really interested how it works for you. Please keep us updated. I've just started the Ibrance with Femara. I also failed Kadcyla after only three months. Did not have the side effects that you did, but was hoping for so much more with the drug. My onc said that he has been very disappointed in that it hasn't worked for most of his patients. After after all the hype about this being the new and improved herceptin.
I would never compare myself to all you stage four ladies.... Just someone taking this drug cold.... Trying to learn the big picture as I do it and hoping it helps you as I go along...trying to make sure science moves forward.... Good luck to you all!
Good evening ladies! I just got up the nerve to take the Ibrance tonite. Have had since Saturday, so here we go....scared about the blood counts, but will be adding the increasing blood counts to my nightly healing meditation.
Accdg to my MO very few women get hair loss, another one of my fears from my adriamyacin days. You know what they say, your fears tend to happen, so this fear is getting off my plate.
Took the meds after dinner. So far, so good, I have been very lucky with SEs in the past. I have always tended to be very robust, only cancer...lol
Will be getting counts done every week for a few months per my nurse. Keeping my fingers, hands, toes, knees and whatever else can be crossed for us all. WE DESERVE ALL THE BEST WE CAN GET
Just some good news I read on facebook cancer site. There's a lady who has been on phase 1 Ibrance for 7.5 years and doing well.
Hope everyone has success with this.
Wow, that's a long time! I'm really interested in hearing more about how Ibrance is working for those of us that have been heavily pre-treated. Most of the numbers are for women that are newly diagnosed.
Romansma I agree with you. I'm really interested to hear how women who have been heavily pre-treated like us fare on Ibrance. When I started Kadcyla there was so much hope that this was the greatest thing for Her2nu and was the super Herceptin. The truth is that it really didn't work for most women that had been pre-treated. I'm hoping that this is different. So far after two weeks no real side effects. Really hoping this works for all of us.
Yes, the side effects of Ibrance seem very good so far. I had a much harder time on Afinitor. Pearlady, did you have Perjeta along with Herceptin? I've known a few women that have achieved NED on this combo.
Here is an article showing greater response with Ibrance and letrazole for women who have gone thru other tx. This is what convinced my MO to try this for me. I found this very interesting.
So far SE have been fine, but only 3 days....lol. Myra
Yes Romansma I did have herceptin and perjeta. The perjeta was very difficult with the constant big D. The worst that I've ever had, but the combo did work. Although I did not achieve NED, I was stable for the 10 months that I was on the combo. It was still working when we switched to the Kadcyla after I pleaded with my onc to get me off of the perjeta. We have discussed that at some point he may put me back on Perjeta but at a lower dose in combo with something else. I'm hoping that the Ibrance does the job and I don't have to get back to Perjeta for a long time.
My concern with the Ibrance is that at this point it is only approved in combo with Femara. I know there are other trials out there in combo with other drugs. I had Femara in the past and it got me to NED for five years, but I'm concerned with going back on the Femara that it may not work as well as if the Ibrance were combined with something else.
For me the Afinitor was very difficult in the beginning, but the side effects did get better after a few months. It then became very tolerable. I never had mouth sores like many women.
Romansma , pear lady and Myra and anyone else I forgot. Hoping this drug is doing it's job killing those cancer cells without killing out bodies. Years from now you guys will all still be here telling us how it all started. Good luck.
Myra, thanks for posting that article, I hadn't seen it. 5 months PFS is nothing to sneeze at, but I sure would rather see 22 months like the newly diagnosed are seeing. I will just plan on being part of the long tail!
Pearlady, I am concerned about the Femara, also. I progressed within a few months when I was on it with Faslodex. However, on a good note, I seem to be having side effects from the Femara (hot flashes and vividdreams) so hoping that means it's working on the cancer too. Of course, I know that SE don't always mean effectiveness, but I am hopeful. It's good that Perjeta is still on the table for you. It's such an effective drug and having options is good!
Patty, you are such a cheerleader! Thank you! Is Ibrance a possibility for you? Hoping your pain level is manageable today. I started Oxycodone this week and I'm still not sure. It's managing my pain better, but I'm pretty loopy for a couple hours after taking it. Not a big fan of loopy. Too much to do. Too many kids and dogs!
Romansma: the loopiness after a few weeks and then the pain really subsides.
Patty: thanks for the good wishes. You have been an amazing trooper!
I am just finishing up the first week of the second cycle and like the first week in the first cycle there is nothing to report! No side effects at all. Good energy, etc. I still have the bad cold but I have been around a lot of housebound sick kids this winter so I am going to blame it on that and not the Palbociclib. I am taking this drug with Tamoxifen right now, which is approved in the trial I am on. I hope everyone is having a good week and blood counts are coming back OK...
Just read this article - thanks Myra 1211 - a little different than my oncologist told me this morning - I am beginning to wonder if he is current with new things - I get from the article that it is usually taken alone - is this correct?
Apackoftwo, it is approved to be taken with Femara. There are several trials pairing it with other drugs and chemos. I'd be interested to hear yourMO's take.
Thanks Myra. I am thinking the loopy is temporary too, so I haven't given up. It took me a couple of weeks to get used to Vicodin. I was just hoping, since they are both in the opiate family, that I'd be able to skip the initial loopy, nauseous part. Guess not.
I've been pretty tired this week. I'm thinking it is the 3rd week on Ibrance causing it. I still have hair. Feeling a little itchy a lot, but no rashes. No mouth sores. If this is the worst of the side effects, this is great.
Hey Romansa, I have taken only 7 days worth of Ibrance and Femara..The second night I had a horrific and I mean horrific nightmare...The next day I looked on these boards and sure enough some ladies on Femara had reported the same symptoms....So I moved my med taking time to noon instead of evening...I am very careful to not take anything else that might be responsible such as that night I had taken an Alleve PM . Anyway I went to the oncologist today and they took my labs. I will find out soon if there is any impact soon...I am thrilled to have this med combination and have pinned lots of hopes on it. Good luck to us all. Thanks for starting this board...It gives me great hope to know that the experiences of the first few weeks are probably indicative of the full route on Ibrance and Femara..... Carolyn from Music City
Good idea, Carolyn. I was hoping the nightmares would die off soon (pun intended). If not, I will move the dose to noon
Is Ibrance not a chemo drug? And what is Femara? It is a hormone disrupter, right?
O.K. just looked up Femara - hormone inhibitor - I think he meant since 3 other of these drugs have failed there was no reason to think another one would work? I have little say about what the "next step" will be these past 3 years and am now beginning to want to know my options and not just take the doc's opinion - I mean, he obviously knows more about all this than I do but my first inclination that women were more involved in treatment decisions and better informed and knowledgeable was when I started reading posts on this site. I have consistently run into resistance to answering my questions. One doctor even said, and I quote, "you are too smart - you are asking medical student level questions and it is threatening to your doctors". Well, I am beginning to give some serious consideration to my middle finger
as a response to that!
Romansma, you might want to ask the doc about the dosage on the Oxycodone and whether you can lower it and still have it work (I hear that the dosage of the Oxy can sometimes be much too much for some people). Sometimes I cut pills in half since painkillers tend to knock me out, not sure if that's an option with the Oxy but I do know a couple of people who had to cut way down on it since it was way too powerful for them.
I am on 5/325 oxy which is the lowest dose. I usually stretch it for 7 hours and all nite.
Apackoftwo, I should hope you are well informed, it is OUR life. Myraa
Not sure it is too much, really need the pain relief. On Norco, they only lasted about 4 hrs and I wasn't sleeping well because I'd need to wake up and take more pain meds. I like that the Oxy is getting me through 7-8 hours. They are the 7.5s and if I don't get used to it within the next week, I'll switch again. I've learned to give things a coupleweeks before deciding. I hated Norco at first too. Right now, I hate pain and grouchiness more!
Hope - sorry to hear about your pain, I hope they are able to give you something that works and doesn't make you miserable. I wish I had some wisdom/advice, but I don't...just sending best wishes.
I started my second cycle of Palbo/letrozole today. So far, my platelets and white counts are hanging in...they are low, but now low enough to reduce my dosage. My onc wants me to do a couple shots of neupogen just to make sure my white counts are in the clear. I'm a little tired, though that's such a subjective thing, mostly I feel a million times better than being on chemo. They ran my markers today and I'm cautiously optimistic they will be stable or improved.
Best wishes to everyone - love to know how you gals are doing.
Romansma, I am sorry you are in so much pain and praying that you can get some good pain relief soon, and a good night's sleep.
I don't know what I'll do when I'm in need of pain killers since I can't seem to tolerate them well (and still need to drive carpools of kids). I guess I will need to learn about all the options soon.
I will be starting Ibrance/letrozole combo (letrozole alone didn't work, and neither did faslodex alone). Hoping the Ibrance will help, will keep people posted. I hear the new drug by Ely Lily is even better than Ibrance in trials - that it is taken every day (no off week) and that the white blood cells don't take as big a hit. I think it will be FDA approved in the near future.
Thanks guys. Think I'm starting to get used to the Oxy. However, totally crashed yesterday. So weak, fatigued. Guessing my counts are diving in this 3rd week. Finding it hard to do anything. Anyone else have this experience towards the end of the 21 days?
Hang in there Romansma! I do remember that when I first started Ibrance, I used to get terrible headaches and felt exhausted but as time went on (cycles) it slowly went away. You have been through a lot - give yourself permission to rest as much as you can! I found afternoon naps very helpful and now I only occasionally need them. Also I always found, and still do, that the last week of my cycle to be the most difficult! Exhaustion, red itchy rashes and nausea - most of the side effects appeared at the end. i hope that it gets better for you and wish you success on this drug!
hand in there rims baba. This too shall pass !!! Without pain preferrably.