Ibrance (Palbociclib)
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Good luck Pearlady.........
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I am joining the club! I just met with doctor and he told me preliminary results of the PALOMA 3 study show an improved benefit with Faslodex. Based on that, he is adding IBrance to the Aromasin and Faslodex I am taking. It seems silly but I am sitting here waiting for my Faslodex and XGeva shots with happy tears in my eyes. Anything that might extend my life and give me more time with my baby boy . . . .
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JFL I totally understand your feeling. We all do. Praying for you.
Myra thanks for your good wishes. I just noticed that you are getting or were on Faslodex. Are you still getting the Faslodex with the Ibrance? Just wondering since I have not had Faslodex yet and I know they are doing trials with Faslodex and Ibrance.
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Was on Faslodex for 2 months prior to the Ibrance. Then switched to Femara with it. Now I wonder if I will get switched back to Faslodex. This Ibranceland roller coaster just had another twist and turn added. Oy! Myra
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Welcome, JFL! This is a very interesting and informative thread, as well as comforting. I'm learning a lot from all the sharing, so feel free to chime in with whatever you're doing. And yes, I totally get your tears. :-)
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Myra- Would you want to be switched back to Falsodex? I don't think that the trials showed that Faslodex/Ibrance was superior to Femara/Ibrance, but that the combo of Faslodex/Ibrance was superior to Faslodex alone. I don't think they have had any trials to compare the two against each other yet. I may be wrong.
If it were me, I think I'd want to stick with Femara for now, and still have Faslodex in the bag for the future. It's always interesting to see what the doc's think.
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That's what I was wondering if they have compared them. Now that would be an interesting study. I thought that was why they were trying the Ibrance with the Faslodex. I failed both Femara and Faslodex alone. Myra
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I had read that they were trying Faslodex just to widen the pool, the way they did with Aromasin/Femara/Arimidex. To give us more options. So that if someone didn't respond with one, they could try another.
I also heard there was an early trial, I think in Japan, with Aromasin and Ibrance.
In order to really compare, they would have to do trials like they did years ago with Tamoxifen against the AIs, double blind.
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Sandilee I agree with you about sticking with the Femara and hoping that it works. I was NED on Femara for almost 5 years and was wondering if the Femara would be effective again with the Ibrance. I think my onc is thinking like you are, that we wants to save the Faslodex for when I really need it. So hopefully the Femara and the Ibrance works well and I don't have to use up an additional option. I also saw where they are doing clinical trials with Ibrance and 5FU.
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The more combos they approve, the better for us! If it looks like Ibrance works with most things, it really will prove that it's an effective drug.
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Wow, it is so fabulous that you women are so up to date. All great things to keep in my arsenal to speak to my MO about. Thank you, Myra
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Myra the more options we have the better for all of us. I'm thinking ahead that if I don't get the results we're hoping for on the Ibrance/Femara combo maybe my onc would be willing to try a different combo rather than giving up on the Ibrance. I think for the women that have not had Femara previously, there's definitely an advantage.
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I really hope it would work that way, pear.
From the drug companies' perspectives, they would each like Ibrance to work with their money-making drug-not just Femara. I'm sure that is a driver of these trials- it's not all altruistic. But as long as we beneftit- yay!
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Welcome JFL. May this new drug give you, and us all, many more years.
Thank you pearlady for the info on the ashwagandha.
For what it's worth - I was on AI + Faslodex for about eight months with a jagged and very slight downward trend in tumor markers. But back pain got steadily worse over that time period. When I was switched to Ibrance + Letrozole (gonna look into changing brands because these headaches are worrisome) was told that it might make sense to bring the Faslodex back into the mix if I don't get desired results on current combo.
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I just checked my Letrozole and it is the Teva manufacturer. I think it was PPap that brought up this manufacturer as one of the better ones?
Still in pain, but I'm psycho. One day I'm sure it's a fracture or compression, the next I'm sure it's a flare! Today, I want to think it's a flare and this is predicting a good response! Either way, I have messaged my MO and I go in for Xgeva this afternoon so maybe she will be around.
Anyone else here ER positive, but PR negative? Response to these drugs is said to be quite a bit less in those that are PR negative. I think I read the response is typically around 33%. May be why I've failed most of the hormonals so quickly. I took Faslodex with Femara and progressed pretty quick. I think it was 4 months. I'm interested to see if Faslodex with Ibrance may be an option if the Femara/Ibrance stops working.
Hang in there all you neutrapenic ladies! Think maybe we should have some gloves and masks printed up with our Ibrance super logo!
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Hope, I am really not sure what my ER/PR was.I was originally dx'd in 1998, just when all these markers were coming out. I was NED 16 yrs. before I had the stage VI dx last June. I thought I was free and clear. Quite a shock. Myra.
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Yes, Romansma, I'm PR-. But Faslodex worked really well for me for nearly 4 years.
Go figure.
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Hi Ladies,
I got scan results today that showed small spots in my liver (previously NED), so it looks like it's time to switch treatments. I've been on Afinitor/Aromasin/Faslodex and my onc plans to switch me to Ibrance and Femara. Just wanted to get in this thread and see what suggestions you ladies have for managing side effects on this treatment. Also, have you had success with this combo?
Wishing us all the best on this new drug,
Julie
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Hi jnh,
I am on my second round of Ibrance/letrozole - failed letrozole alone, and failed faslodex alone. Not sure yet if the Ibrance/letrozole combo is working, but I can tell you I have not had negative side effects other than low blood counts which have not been a problem for me so far, and the red itchy skin bumps I had with faslodex have cleared up and disappeared since I stopped the faslodex, so that has been great since they were always bleeding. I hope you have success with the Ibrance, it is great not having the side effects. Good Luck!
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Hi jnh, I will reiterate what Holly said. Failed femara and fasolodex on their own. Second cycle of Ibrance, so far SEs mild other than some aches and pains and low counts. Here's hoping you do well. Myra.
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Hi there jnh,
I am also in the group that has manageable SE's but low counts. Have had a decrease in back pain after one round but an uptick in headaches which could be from the Letrozole. Welcome, and I wish you much success with this drug.
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Romansma,
Like you, I was originally ER/PR positive but was ER positive PR negative upon mets diagnosis. Where did they biopsy you? Mine was done in a subclavian lymph node. My doctor said it could be that I mutated or could be that the (small) stain they had for biopsy didn't have any progesterone receptors in it although I may still be PR positive. The jury is still out.
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Greetings ladies, just throwing in my understanding (2cents)re the Paloma trials. I'm delighted Paloma 3 (faslodex) is reporting early. That means lbrance is showing good activity after the failure of a couple of lines of hormonal therapy.
The lbrance and femara trial that got FDA approval originally had only women who were taking a hormonal as first-line. Many drugs are pretty amazing as first line when tumor cells haven't ever been treated or not treated in awhile but resistance can build rapidly with each subsequent line. The Paloma /femara trial was only opened up to women who had failed hormonal or done the a/a combo after the good data was in. I'm not sure how long it will be before this extended access data becomes available on femara and pretreated ladies.
Paloma 3 ( the newest trial) if the early analysis holds, says that lbrance is very active in heavily pretreated women. That's a new insight and wonderful news. So it's not so much about a femara/fulvestrant comparison as it is first line verses third line because that's historically how most of the world orders the delivery of these drugs.
Yeah to trials that are giving heavily pretreated woman a stab at the new drugs!!!
At least that's how I've been reading the trial data 😉
Sophie
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thx Sophie, awesome insight. Myra
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Sophie thank you for that very encouraging update . I had that discussion with my oncologist yesterday about my concerns that Ibrance /Femara wouldn't work as well for me since I was treated with Femara previously. He feels that the Ibrance will work very well and that we can always change what we combine it with .
The good newsis my TMs were stable yesterday. .I'll take that. They initially went down after my first cycle and have stayed stable. I feel great with lots of energy . Of course hearing the good news helped to energize me even more.
Here's to many years of success with Ibrance.
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Congrats Pearlady
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Hi everyone - I have been mostly lurking lately - not feeling so well - but have a couple of questions - initial surgical biopsy showed me ER and PR positive - bone biopsy a year or so later showed me 99% ER positive/driven - does that mean no longer PR positive?
Ibrance and I think faslodex next step for me - currently on Xeloda but I am very sick with it - doc wants me to stay on one week on and one off until early June (scan time) to see if increased dose is working (taking 3000 mg a day, divided). A few months ago they started Zometa infusions and I had very bad reaction with it - they thought it was the Xeloda so took me off for 3 weeks - didn't feel better so determined it was Zometa - I was off bone meds for almost 3 months and felt much better until last month they gave me Xgeva and it has plunged me right back down again - has anyone else had negative response to these drugs? I worry about stopping them as I have extensive bone mets, but.....................I wonder why bones cannot be protected more naturally, with cal/mag, vit D, vit K, etc.
Also, does anyone know if medicare is covering Ibrance if it is not first line tx?
Feeling a bit down today - just so tired of always feeling sick - my head spins with all the things I want to do, but my body just won't cooperate - it seems from reading this thread regularly most of you are not having such bad side effects with Ibrance - but you know, I am paranoid to stop Xeloda, start Ibrance if the Xeloda is working - all these rock and hard place decisions are wearing me out!
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Apackoftwo,
I agree these decisions on switching drugs are very stressful and therefore can wear you out - I have a team of a few incredible friends (one of them actually found out all about Ibrance for me - I am so grateful since I was overwhelmed thinking about a trial with another drug which I probably would have started, or a drug with more side effects) - these friends help me with these decisions, otherwise I find it really hard thinking about the disease, it is exhausting! I have not had any problem with Zumeta and have been taking it monthly for a year since the cancer spread to the bone - will soon be switching to every 3 mos instead of monthly. The only time I had a negative reaction was once when I took it the quickest way (they give you a choice on slow or quick injection), I got a headache just that one time, and sometimes I get a couple of days of achiness, but that's all - the nurse says most people take it well, so your reaction must be very unusual, and I wonder what is causing it, and whether it only affects bone strengthening meds - If so, maybe the Ibrance would be OK for you. So far it seems that for most people the side effects of Ibrance are minimal, and maybe if it didn't work out you could switch back to the Xeloda, but if you are always sick on Xeloda, what do you have to lose - Ibrance might be worth a try. I would bring someone to these important appointments when considering switching drugs, it is hard to make these decisions on your own, and when you are not feeling well. Hope you feel better soon, and good luck with your decision.
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Hello, Everyone. I'm new. I started letrozole recently and then added Ibrance; just finishing my first cycle. I'm really glad we can compare notes. The oncologists seem pretty excited about this new drug.
Did anyone else start Ibrance having experienced peripheral neuropathy from past chemo? Or has anyone noticed any PN just from Ibrance? I have some mild PN from Taxol, and it seems like I've started noticing it more since starting Ibrance. My oncologist doesn't think Ibrance will worsen my PN, and said that sometimes PN can worsen even after the Taxol is done. But I do see on the package insert that PN is listed as a recorded side effect: Ibrance + letrozole 13% vs. letrozole alone 5%. (But I don't quite understand that 5% because letrozole isn't the sort of med that would cause neuropathy.) I worry that maybe this SE is more likely if a person already has some PN to start with -- which may not be a common situation for people starting this drug, so the oncs may not have seen it yet.
Otherwise, so far, so good.
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Shetland pony, I have some neuropathy from chemo and then started on ibrance, I have not noticed any worsening , I am also just finished with my first round of ibrance, Have low wbc and platelets but otherwise this is easy to take.
Someone had a chart on here about when to change the dose of ibrance, My ONC is thinking of changing mine and I don't know that I want it changed. I would like to see that again and maybe I could email to my ONC.
Thanks and good luck to us all.
Redroan
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