Ibrance (Palbociclib)
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Roses, there has actually been a lot of research over the past few years examining the brain's role in he production of estrogen. It turns out that the hypothalamus also plays a key role, not just your ovaries.
http://www.healthline.com/health-news/strange-your...
An imbalance there can be problematic. But I believe my issue was more traditional. A severe imbalance in progesterone levels caused by an extreme amount of stress. A job that kept me going 100 miles an hour and triggered loads of damaging cortisol production. The job also did not allow time for routines that would keep me healthy. I was a workaholic for decades and did not take care of myself as my mind and body aged and needed more attention.
So, stress levels off the charts, little sleep, too much travel, erratic exercise and diet.... All led to progesterone depletion which knocked hormone levels out of balance. Liver had trouble processing and eliminating all the excess estrogen, the hormone got backed up and took over. Combine that with a ERBB2 mutation that came from who knows where and it's a recipe for cancer.
Funny thing is through all of that busy-ness I did get mammograms and did self exams, but wouldn't ya know it I got lobular! So no lumps and did not show up on mammos. Gyn just happened to notice a tiny bit of swelling under my arm during a regular pap. Was sure it was nothing since routine tests showed I was "healthy" but decided to do a biopsy just in case. Annnnnnd here I am.
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I don't think they know Romansma. I think it is still so new. The link above is a recent presentation from the doctor running the small phase 2 trial I am on. It gives a very clear explaination on how the drug works, which was helpful for me to understand it. It doesn't really expand on side effects though. Just thought it might be of interest
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RosesToeses, I like your screen pic
There does seem to be a lot of young women around here.Kaydeesmiles, I had no idea that estrogen was produced by the brain in addition to ovaries.
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JFL, it's still early days in that area of research but the results so far are fascinating. It could eventually open up a ton of possible treatments, not just in regulating estrogen in breast cancer patients, but in using hypothalamus-produced estrogen for Alzheimer's patients.
Sorry to derail guys, I get nervous in the lead-up to new blood work and tend to babble ☺️
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Great info, thank you. Who knew our brains could make estrogen? The Dana Farber video explaining the new trial coming up was good too. Good to see that Ibrance is being considered at an earlier point in the disease process. I think the lack of huge side effects is making this drug the star of the show right now. I'm guessing , if your marrow is in a little better shape than mine, you could feel pretty good on this.
Danish, good to hear from you. Happy to hear Haliven has kept you stable. Hoping that continues, but if not, Ibrance isn't too hard to take. Low counts seems to be the issue, but if you can stay out of danger zone, it's not too bad. Sure could be worse! Affinities was much harder, I must say
I need to go back and see where I was in the cycle with that last pain flare. I seem to be ramping up again the last few days. I may see a pattern developing......just call me Nancy Drew.....or Columbo.....hmmm, I'm aging myself. Need a current day sleuth!
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Good morning everyone. I feel that I am so out of touch having not checked in this weekend. So much new information I need to spend a while to read it all.
Dunesleeper I find that the Reishi combined with other herbal sleep aids has helped me. I have had big sleep issues. I used to taking Ambien, Lunesta or Ativan and will not take anymore. Even though I didn't take all the time, they started having th eopposite effect for me. Ativan helped, but there has been a recent study where Ativan in extended use can contribute to Alzheimers. I told my onc that there's a good chance I won't live that long to see that happen, but my luck I will get the Alzheimers before the BC gets me.
Myra about the Tamoxifen. I took it for 3 plus years before my bone mets in 2001. In 2010 my onc recommended that I take it again along with Aromisin. I took for almost 3 years and in combo with the Aromisin, it was more effective than Aromisin alone. So I think there's good potential with Tamoxifen. For me it didn't get me to NED when I took the second time but helped keep me stable. At this point, stable is great.
I've not yet had Faslodex, so my onc told me that if the Femara/Ibrance combo doesn't work, we'll revisit in the future. I'd rather not use up all my options if I don't have to but nice to know that its out there.
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Thanks Hope, I am trying to digest what they are saying. I don't know if they believe the phase 3 will confirm the results of phase 2 or not. I did like the doubling of overall survival rate, for those of us with mets, I don't think we were expecting it to be a cure, but another bit of ammo in our arsenal to extend our life, until hopefully a cure comes along or major extension of life making it a real chronic disease. Does anyone ever wonder why HIV/AIDS, had such great results with meds and disease suppression and BC has been years and years and billions of dollars w/o the same results?
A lot to ponder, have a great day all.....Myra.
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Myra, I wonder about the HIV/AIDS comparison a lot. I think it has a lot to do with the cocktails for HIV, whereas it's been standard operating procedure in many places (not all) to give BC patients one drug at a time.... or suppress one thing at a time. There is also a huge focus in HIV treatment on protecting and boosting the immune system. I think it should be that way for us too. I'm no expert by far, but I'd like to attack this sucker from all angles with a cocktail - while building up my immune system as much as possible
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I think immunotherapy is where we are going with cancer and I really hope it works better than these incremental steps we've been seeing for decades now.
On the subject of Pablociclib again, the trials have shown a doubling in the Progression free survival, but only preliminary results in Overall survival. The preliminary results for overall survival were not statistically significant and this threatens the continued approval of this drug. In the preliminary results, Pablociclib showed 37.5 months OS compared to 33.3 on Letrozole alone. The hope is that this next set of OS results will show a significant increase in survival.
None of this applies to any of us personally. Some of us will be exceptional responders, others will need to move on quicker. But, I like to keep up with the science so I understand what I'm getting myself in to.
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Thank you Hope. I have often wondered about the HIV/AIDS comparison, but I think a lot of it has to do with that there are so many different types of breast cancer. I'm not an expert on HIV, but don't think that is the case.
Kaydeesmiles I agree with you about the immune system. My onc is an integrative oncologist and believes very stronly in that, which I why I chose him. I truly believe that is why I have been able to tolerate most of the drugs that I've had to take over the years and have had less side effects than many other women. When I first started with him in 1997 there were no other oncs in NYC that offered what he did. Now I think its becoming more common nationwide.
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Thanks for the link, Romansma. It's possible that the Phase III results could impact us personally, I suppose, if no improvement in overall survival is found. The FDA could decide to withdraw their approval, as it was conditional upon the expected results. Although I hope they would allow those who are already on it to continue if doing well.
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Okay you guys, I have to make a choice and would really welcome help. I was on Femara before and it stopped working. Then moved to Afinitor/aromacin for 3 mos of awful SEs, then put on the Veliparib/TMZ trial for 2yrs and 2 mos. with no shrinkage, but the tumors stayed stable. It has stopped working and all my tumors are bigger with a new one in my cervical spine, my other hip (huge one is on one side already! ) and 2 new rib spots.
My onc. Is suggesting I get on a new trial after a "wash out". The new trial is with the study drug from Lilly called Abemaucilib which I would take with Falsodex. The catch? It's a 50/50 for a placebo. Abemaucilib is a CDK 4/6 inhibitor just like Ibrance. The choice? I could just take Ibrance without Femara since Femara did not work. At least I would know I was getting the real thing with Ibrance. There is also a third choice to go on Xeloda.
What would you do? The nurse told me that they will know if I'm on the real thing, not placebo, if my blood counts drop and I feel sick and growth continues as visualized on my scans (Hooray?). At that point I can stop the drug, but time is lost with continued spread of disease. One good thing with the study also is that the company and/or center will cover the costs. Money is unfortunately an issue.
There are few ppl I can TRULY talk to. They say things like, "why don't you get IV Vitamin C?" or "why don't you get German measles or polio injected into yourself? I saw that on TV". Yeah, okay. Sounds good.... I'll do just about anything rights now, but we know in reality these new approachs are not offered just like that.
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Vivian I am in a similar situation to you. I was on Femara for almost 5 years and it did keep me NED along with Herceptin. I moved on from Femara in 2008 when I had progression. I was very concerned starting the Ibrance/Femara. I felt that if Femara stopped working after almost 5 years, why would it work now. But the only way I could get Ibrance approved by my insurance was to take it with Femara. I have spoken to my onc about what we will do if the results are not good. So far everything is stable, but as I said, I'm very concerned and have only completed three cycles.. He said that unless I had major progression, he would then add something else to the mix. Not sure what. He also told me that since the Femara did work for me, possibly getting it with the Ibrance, it would work again. So I'm in a wait and see pattern now also.
I don't see Tamoxifen listed with your prior treatments. Is that a possibility to add, say either Tamoxifen/Xeloda or Tamoxifen with the Ibrance?
My onc has said that he's read that Abemaucilib may be a better drug than even the Ibrance. I'm sure it's a tough decision. You say that you would know if you are getting the Placebo. How long would you have to wait until you know if you were on the real drug or the Placebo?
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Vivian, I am starting my first treatment since IV DX tomorrow. My MO tried very hard to get me to do the same study. I said a big loud BS! I don't think Stage IV people should be included in studies with a placebo 50/50 chance. I told her flat out that I want Ibrance/Fulvesterant combo. She said OK and tomorrow is the day. I understand that trials are necessary, but call me selfish. I'm not willing at this point to be a guinea pig for science.
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Northtexas I agree with you. I am not comfortable with anyone stage 1V having the potential of getting a placebo. The only issue for me was that my insurance wouldn't approve Ibrance with anything but Femara. I really hope that changes in the future as I know they are doing studies with Faslodex and even some chemo drugs.
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Pearlady, I think the timing of my stage IV DX was just at a good time per the ending of the Ibrance/Fulvestrant study. It ended April 15 while I was still undergoing testing. Praying for good results for myself and all you other lovely warriors! Susan
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I am starting the same medications tonight, and would also like to hear from others in regards to the possible side effects. How is everything going with you?
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Susan praying for you also and for all of us. I didn't realize that insurance will now prescribe Faslodex with Ibrance. That's great news. My onc did tell me not worry that if the Femara/Ibrance didn't produce good results he'd switch to Faslodex. I think his approach is why use up a drug that I haven't used yet unless he has to. So far I have been stable.
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That is great news about getting Faslodex with Ibrance. Vivian, is there a chance you could get on that combo?
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Hi everyone,
Thanks for all this great info, this thread really is going so fast and I can hardly keep up!
Vivian, I think you should try to get the Ibrance instead since it is similar to the Lilly drug but the Ibrance is FDA approved so you wouldn't need to be in a trial and could be sure you are not on a placebo. A friend who read about these drugs said the Eli Lilly drug might show the most promise of the 3 similar drugs (Ibrance, LEE01 and EliLilly), but someone posted on this thread that it didn't work for her, so I wonder how the trials are going. My friend said you take the Lilly drug every day (no off week) and she said it prevents blood counts from dropping as much as the Ibrance, but the person who posted on this thread said her counts did drop too low and she had to discontinue, so it will be interesting to see the complete results of the Lilly trials. If you tell your doctor you want the Ibrance (and he agrees it will help you) and you show him the Pfizer card, hopefully his staff will work with Pfizer and your insurance company to help you get it affordably. At least you will know what you are getting. Good luck with your decision!
Pearlady, I don't know how you can keep track of all those supplements - I messed up one day and took Prilosec instead of Ibrance, will have to be careful and keep the Ibrance/letrozole in a separate container. Hope you are getting some rest.
Hope you are all enjoying some nice spring weather!
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Hi mannymo,
The biggest se for most of us initially I think is a significant drop in blood counts. So don't be surprised if some fatigue sets in. It certainly has with me especially after Round 2. Beon guard against germs. It's possible there could be some stomach upset too but everybody's different.Like some of the others I also have headaches that I think are letrozole related. My insurance company is one of those that won't cover the Ibrance unless it is in combination with letrozole.
Holly this weather is the best! Does wonders for my mood.
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Thanks to everyone for your responses. Your advice is so helpful! i am definitely going to check if my insurance will cover Ibrance with Falsodex and I will push for it. Will also look into the Pfizer card. I'm not so interested in Femara again because I think like you, Pearlady, my Femara quit after 5 years, too, why would it work now?
I was told Tamoxifen was not for me because I'm post menopausal (ovaries were removed). I don't believe Xeloda is an Estrogen Receptor Inhibitor so it is not a drug of choice to take with Ibrance. My onc wants to keep Xeloda "in my back pocket" - which does not give me a lot of faith in Ibrance! But, I know, no negative thoughts allowed! We still need back pockets.
I am not too excited about a placebo either. The way I am supposed to know if it is a placebo is because on my first scans I would show more tumor growth and when my blood is drawn it will be too normal (no drops). Oh great! I will have more tumors! I already have "suspicious" spots on my liver. The scans (bone, CT, MRI) will be 9 weeks after my trial starts, I think but not sure.
My onc is pushing for the study Abemaucilib/placebo with Falsodex. Have you guys had any Falsodex experience? I have read the Falsodex Girls thread and it comes with its own problems too!
Again, I really appreciate your input. you guys got me thinking and I am now making of list of questions for my doc.
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Vivian, I think that is a good idea to see if you can get the Ibrance and It should be less stressful than being on a trial and possibly having the placebo. I tried Faslodex and didn't really have symptoms except for itchy red bumps on my skin, but other people said that the bumps can be controlled with creams like benedryl and hydrocortisone I think (i never tried it because once I went on the Ibrance/letrozole and off the Faslodex , the itchy bumps disappeared completely which is great). The Faslodex didn't work for me, but maybe it would have worked in combo with the Ibrance. I hope you get an answer soon, I know it is hard being in "limbo" trying to figure out the next step, but you will feel better once that is settled. Good luck!
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Vivian, I had three and a half stable years with Faslodex. If I could have stayed on it indefinitely, I would have gladly. At first I had a bit of itching for a couple of days after my shots at the injection sites, but after 6 months, they settled down a lot. And even when they were itchy, Benedryl helped a great deal. My tumor markers went from 260 down to 3 within the first year. I think it's one of the best drugs out there, if, and it's an important if, it works for you. There is no drop in blood counts or other blood related side effects. I did have hair thinning, starting about the second month, but it stopped thinning around month four and then grew back entirely.
Your signature shows that you were on Faslodex for a while. What happened?
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Vivian did you ask your onc why he is pushing so hard for the study? Just curious why he would recommend that over Ibrance. Especially when you could take the Eli Lily drug in the future without a clinical trial.
Iteresting about the tamoxifen. When I first completed treatment I was put into menopause from the chemo. So when I started on tamoxifen I was in menopause It did work for 3 years. Not suggesting you take it now, but it's always something to think about for the future. I do know women who have taken after menopause.
Good luck with your decision. I pray we all get good results from Ibrance.
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I think my onc is not really pushing hard for the study, but did show a preference for that decision when I was sent home to think about the options. My gut feeling is that she does not think the Femara will do anything and wants to try me on Faslodex - then she will think about the CDK inhibitors and deal with the Femara/Ibrance pairing. I have always felt like I have been getting the best of care. Now I am waiting for my follow-up appt. to be scheduled as they said they would and I am starting to question my faith in my onc and the treatment center.
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Re: comparison to AIDS
Only a very small percent of the billions raised goes to applied research. Most of it goes to early detection (which really does not cure anything), awareness, and more pink stuff. Last time I hear it was 2%.
I think it should be 30% because: 30% of early stage breast cancer develop into metastatic breast cancer.
The AIDS advocates threw ashes of their loved ones into the white house lawn. They were persistent, and their grassroots movement had no affiliation with big, organized corporations.
What MBC needs is a voice, maybe a celebrity, who will champion our cause and unite us.
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Shoot adverb, well said! If I see one more pink football helmet, yogurt cup or ribbon I am going to scream! We need to stop pussy footing around and get some real muscle behind this madness! Myra
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Sign me up for the March, the Revolution, whatever we want to call it. I'm sick and tired of seeing these new drugs that cost $120k a year and give us an extra 1.7 months of overall survival! Give me something I can get excited about! Give us an extra couple of years, or how about this? Give us a FN cure! Need to find our voice soon. Maybe Jolie? Who else? Let's find someone now and get this moving. I want to be here on this earth in 8 years when my son graduates from high school! Screw that! I want to see him graduate from college, get married, and have babies. Soooooo, drug companies, I'll need a $120k drug that gives me an OS of about 20 years, k? I need a trip to the White House lawn, soon. I'm flipping mad!
Ok, that outa the way. Vivian, many of us failed Femara. Ibrance works by blocking enzymes/pathways that cause the Femara to stop working. So, by taking them in combination, in theory, Femara should work again. I think if it were me, I'd try Ibrance/Femara first before going to the trial. I'm not a huge fan of Xeloda, so I'd save that one for later. Just my 2 cents.
I've been reading about infrared saunas and their health benefits. I went for my first 40 minute session yesterday. Lots of sweating! Hopefully lots of toxins being released! Anyone else done this? Wondering how often would be beneficial. I'm thinking 2x per week right now, but have read some do it daily. Hoping for some pain relief.
Also looking into other alternative therapies to help me feel better and enhance my treatment on Ibrance/Femara. I've tried acupuncture before, but didn't get a lot from it.
K, started round 4 of Ibrance/ Femara last night. As I held that little bottle in my hand with almost $10k of pills inside, I willed it to work! Then I crossed my fingers, my toes, and finally, my eyes!
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