Ibrance (Palbociclib)
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Roses really great news. So happy to hear it.
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Brenda, I was on Femara for 5 years before it stopped working. I am now on the Femara/Ibrance combo.
Joanne, Love the graduation pictures! You do have a beautiful family
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Hope,
Did the Femara and Faslodex work at first before they failed? I mean did one of those drugs stabilize or regress your MBC before it failed?
Thanks!
Brenda
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Roses. May I ask which insurer you have? I really want to keep working, and if I have trouble on this drug, I fully intend to ask for the 100mg dose. If we have the same insurer it would be nice to know that we might need some extra time.
car, my problem is not with the process, but the person who dropped the ball. If this were the first problem with her, I would be far more forgiving. Heck, if she had just apologized for screwing up, I would have moved on. It makes me extremely nervous to have someone managing my care who is unable to say "I made a mistake." My approval was given in 4 days, but due to this person's errors, I didn't get the drug until 14 days had passed.
So, pill no 1 is in me now. I had a wave of nausea which subsided fairly quickly.
*susan*
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p.s. Just noticed the date!!!! 10 years ago today I received my first dx of Stage II breast cancer. My tumors have always loved Spring.
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Myra,
Where exactly is your right side pain? Does it get worse when you eat? It could be your gallbladder. You could have strained a muscle around your ribs. I had costochondritis (inflamed cartilage) once, but that was on the left side. It may have nothing at all to do at all with cancer - (I always jump to thinking any medical problem is cancer-related!) When do you see the doc?
On the subject of tamoxifen: I was told by my MO that I would not be a candidate for tamoxifen because I had hit menopause. Anyone else told the same thing?
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Vivian, tamoxifen can be taken by both pre and post menopausal women. It was the standard of care for many many years. *susan*
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Vivian the second time I took Tamoxifen I was past menopause and it did work in combo with Aromisin.
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vivian- My onc also considered Tamoxifen for me, and I'm way past menopause.
Susan- I do think that the pharmacies may not have the 100mgs on hand. My pharmacy, CVS Specialy had to order it from the manufacturer. It took about two days and it was a special Saturday delivery. One thing I will say about the CVS Specialty is that they try to get things to you as fast as possible. He first quoted me the following Tuesday ( I was calling on Thursday), but I said that my doc really wanted me to start on the weekend. So they said they would rush it.
Shetland Pony- At the beginning, it is a little confusing while the right dose/timing is being figured for each of us. I am the one who has to make the call to the pharmacy to order the drug. It's set up that way, although the docs call in the prescription beforehand. But the pharmacy won't send it out until I make the call and say I'm ready. As far as the cycles and blood draws, my onc and his NP are pretty on top of it. They know when they want me to start, when they want me to come in for tests and they let me know, so I make appointments on those days with their scheduler. I don't need to worry about my doctor being there except for the monthly appointment before I start the next cycle, as the labs on day 15 can just be drawn by the tech. It seems pretty organized, but it does take some coordination on my part as well.
Had my blood drawn today but I didn't wait for the results. I didn't get a call. I hope that's good news!
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- Thanks for the feedback. I believe it was the ARNP that told me that tamoxifen was not preferable for post menopausal women, but the MO was aware. I was initially treated with Femara for this reason. Then I moved on to aromsin/afinitor I will speak to the MO about it. I am planning to ask a lot of questions when I see her.
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Hi everyone,
Wow, a lot of activity here! Great pictures - hoping we will be here for many more graduations and many other happy occasions. Susan, sorry you had the unnecessary delay, but glad you were finally approved. The side effects have not been bad. No diarrhea, as long as I don't drink coca cola. Dairy has been fine.
I had my appointment yesterday and my numbers are what my onc considers stable, so he was pleased (I previously quickly failed both letrozole alone and faslodex alone). My CEA did go up a few points, but he said that was nothing (4 points) and the other tumor marker went down from 1045 to 1003, so he said this looks stable (though the scans scheduled for July will tell us more).
Since I don't like surprises and want to be prepared for the next step if this stops working, I asked him if he would consider pairing the ibrance with the faslodex, and he said he would. As he pointed out, the combo I'm using now (ibrance + letrozole) is not FDA approved since it is not first line for me, so he didn't see any reason why insurance companies wouldn't cover the combination of ibrance with faslodex given the Paloma 3 trial results with Ibrance/Faslodex being more effective than Faslodex alone. My neutraphils were 1.23 and total white cells were 2.21 - while these are in the low range, they were higher than last time. So he decided to keep me on the 125 dose for now since, although I am very tired some days, it's not every day, and I seem to bounce back so far. Pearlady, if the counts go too low, my onc says he would delay the next cycle or would lower the dose to 100, but they would not give Neulasta or Neupogen (he didn't explain, but I guess that's because the lowering of the blood cells is actually what is stopping the spread of the cancer).
Romansma, I agree with your decision given that the SE's of Ibrance are not too bad, and as long as the TM's don't dramatically show a pattern of increasing. Don't give up hope if this stops working, either, since it sounds like there are going to be other options (i.e., probably Ibrance with Faslodex) when one combo fails. Tamoxifen worked for me for a long time, I wonder if they are pairing it with Ibrance. Also, this immunotherapy sounds really promising, and my friend says there is a T-cell trial going on right now for breast cancer at Tufts Medical Center in Boston. All sounds promising.
Myra, sorry your side pain is back, I am also wondering what it means since I have a lot of side and back and rib pain also - hard to get comfortable sleeping, tough to reach or lift anything. The pain was finally easing a bit after hearing a crack- then pain- a few weeks ago, but then I heard another crack on the opposite side, with pain- wondering if my ribs are cracking, I guess a few cracked ribs won't kill me, but the scans may tell me more in a few weeks.
Daisylover, my onc says they are now finding that prilosec and protein pump inhibitors are OK with Ibrance, is this what you are hearing also? However, I just heard that there was a news report last night that says Prilosec is associated with irritation in the esophagus, so I am going back to the zantac for now, and watching the diet, at least while taking the Ibrance (and he still says to space the antacid 11 hours away from the Ibrance/letrozole, though nothing sounds definite or proven).
Sorry to be so long winded!
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Vivian, I think there were trials that showed that the AIs were more effective than Tamox for post menopausal women. So in that sense, Femara would be preferable to Tamoxifen for you. It was the same in my case, but once the AIs fail, there may still be the possibility of Tamoxifen. At least that is my understanding.
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Susan, my insurance is BCBS but the delay wasn't exactly on their end, it was more of what car2tenn was mentioning--It's new and everyone's a little confused! In April I contacted BCBS and they told me that since Ibrance was a pill (not injected or infused) is was covered under my Rx plan (different carrier) so I called the Rx plan company and they told me it was covered and gave me a list of speciality pharmacies that was basically "anyone BUT Walgreens." So I got my Ibrance 125 script sent to the CVS speciality pharmacy who filled it for 2 months.
When my onc sent in the script for 100mg Ibrance, she sent it to CVS. But now CVS is saying it's covered by my medical insurance (BCBS) because it's a speciality drug, and I need to have it filled at the in-network speciality pharmacy for my BCBS, which ONLY Walgreens.
Of couse, it took CVS 6 days and multiple phone calls from me to them with them telling me first that they didn't have the electronically submitted script, then that everything was fine just not entered yet, then that I'd have the drugs by Friday, then, yesterday afternoon I got a call from my onc's office that CVS had called them and told them they couldn't fill it because it was out of network. So I called onc, called CVS, called BCBS who called Walgreens on my behalf.
So, very long story short, the delay wasn't the insurer's fault, it was one of those "who's on first" situations. But everything should be sorted now, I hope!
But, I then heard from my onc last night that all my blood counts are lower than last week and I need to retest in another week before I get back on the 100mg Ibrance, so guess the delay getting the Ibrance will be just fine.
Myra, hope those pains go away soon!
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Forgot to add, 10 years, Susan? That's fabulous, congratulations and here's to many more!
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Ten years, Susan....here's to ten more!
Adnerb, I failed Faslodex/Femara pretty quick at about 4 months. However, I'm still convinced that one of these could still work for me when taken with Ibrance. It works by blocking a pathway that leads to drug resistance. I am encouraged by what Holly's MO had to say about Faslodex. Think I will run that by my MO too.
I've been up since about 3am. Pain is ramping up again. Not sure if it's my normal cycle of increased pain on my week off Ibrance or if it's just aches from the Xgeva. I woke several times soaked with sweat, so may be the Xgeva this time. I was silly tired yesterday too. That could be from being at a low point in blood counts. They weren't at my all time lows this time but WBC at 1.3 and ANC at .8. I could feel my throat getting a little scratchy. I have trouble with liquids and food feeling like they are stuck in my esophagus. My MO thinks I may be dealing with a mild case of mucositus. I have had a tendency to get the mucositus with other treatments. Afinitor and the radiation I had to my cervical spine gave me the worst, couldn't eat or drink for more than a week. Thankful it's nothing like that.
I did some checking on trials yesterday. Lots of immunotherapy type trials, but most are still phase 1. I'm hoping to get in at phase 2 or 3. just confirms that I am making the right decision staying the course right now.
It's Friday! We have a big group of friends going glamping this weekend to celebrate end of the school year. I think I'm going to go. My husband is having to get everything ready, but he doesn't seem to mind. I was thinking about canceling, but my son really wants to go. His friends are all going. Can't be too hard to sit in a camp chair and roast marshmallows, right?
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Thanks for the good wishes all. My pain certainly feels muscular, but your mind seems to always think the worst. It seems to get worse as the day goes on.
I am going for my bloodwork next week and Xgeva. My onc has after 3 cycles finally put me on a schedule. I may not get the xgeva since last month I almost passed out when I got the shot when my counts were too low.
My tiredness has definetly eased as the months go on. This month it was extremely manageable. It may be the supplements I am taking.
I did extremely well on tamoxifen, that is why onc is thinking about putting me back on if necessary. It worked for 16 years. I failed femara and fasolodex within 4 months of taking them. I am now just at 1 year dx for mets.
Hope have fun camping. My youngest was in the Indian Guides and some of my fondest memories (and his) were of the camping trips. Try to bring a cot at the very least! Getting everything packed and unpacked was the worst!
Best weekend to all...Myra.
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Romansma, Good idea to ask your onc about the Ibrance/faslodex combo. Adnerb, I failed both letrozole alone and Faslodex alone very quickly (although I was on tamoxifen for 5 years before failing that), but so far I seem stable on the Ibrance/letrozole combo and am on my 4th cycle now. I wonder if there are any other trials going on pairing the Ibrance with other drugs besides Faslodex.
Romansma, you are a trooper going camping, I hope you have fun and are able to get some rest and feel better soon. I agree, you have to be careful with a trial, make sure it's a really good one and won't wear you out even more.
Roses, good luck with your blood counts, they should come up with a little break.
Everyone, have a great weekend!
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Hope have a great weekend camping. Hoping that your pain subsides and that you can really get away from everything and enjoy the weekend. It could be the Xgeva shot causing pain. Lots of women I know have pain with that. I'm going for my first infra red sauna tomorrow. Will you get a chance to go before the weekend away? Will let you know how that goes. Really looking forward to it. Couldn't go last week.
Susan congratulations on 10 years. No reason to believe you won't be celebrating 10 more.Myra how many years were you on Tamoxifen? I didn't know you could take it for so many years. Wow 16 years is great.
My week off from Ibrance. Felt really tired yesterday but feel so much better today. Will get my blood checked on Monday when I go for my IV Glutathione and Vitamin D. I know that sometimes you feel great and the counts aren't great. I do think that the supplements are helping.
Met a woman in the oncs office yesterday who was diagnosed in 1991. She had a recurrence in 1995. In those days they were still doing stem cell transplants for breast cancer. She had the transplant and was ok for almost 10 years. She is still working full time at 68 and is currently doing okay. So that really gives me hope that there is the possibility that we can all have many more years of quality time.
Hope everyone enjoys their weekend.
Dorothy
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Good morning, everyone.
I can't believe how early some of you have posted this morning! Everyone is up early.
Romansma, I hope you can get a nap today. I'm so sorry about your pain getting worse and your possible mucositus. I applaud your plan to go camping with the group. Being around your family and friends is what we're here for, and your son will thank you. You can let others do the work and just relax. Sometimes getting away from routine and being around happy people is the best medicine.
Myra, I hope you get relief soon! When you go in next week, maybe your doc has some advice.
It's always hopeful to run into someone who has been dealing with this for over a decade. Dorothy, you are an inspiration on this board, yourself, having tamped down this beast since 1997! So glad you're feeling well today and I hope you do something nice for yourself this weekend.
I just logged into my patient portal to see if my blood results are in from yesterday. Amazingly, my neutrophils are at 2500! It looks like the dose of 100mgs is going to be tolerable to my system. It was only my cycle halfway point, so they still might dip at the end, but at least they are ok for now. Overall white counts were at 3.8, which is low but not really problematic. I'm feeling good. Let's just hope the meds are working on the cancer.
Grateful for the weekend, and grateful for all of you.
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Roses,
I have Harvard Pilgram and they outsource specialty drugs to Accredo. So far I have been impressed with them. Guess I will find out some other time about if they carry 100mg or if that gets punted to another place.
*susan*
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Congrats Sandilee!! I have been good with the 100 mgs. also. Sorry for the confusion, I meant I was on Tamoxifen for 5 years after chemo and initial dx and it kept it away until last year with bone mets dx. That is why onc is considering trying it again if need be. Myra
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Sandilee so glad for the good counts. That is very encouraging. Praying that the meds are working for all of us on the cancer.
Also, thank you so much for the kind words. I believe I have been very fortunate in that I haven't had any real pain issues. I also believe that part of how we do with BC is luck of the draw. As we all know, some BCs cancers are much more aggressive than others. But I truly believe that what we do or don't do plays a huge part also. Very fortunate to have found an onc who is so into complementary and holistic treatments. Of course working with a therapist who does hands on healing has helped me tremendously as well as a holistic pharmacist.
Sandilee I already did something nice for myself today. I bought a pair of earrings that I have been coveting for quite some time. I justify these purchases by saying that I deserve it, having to deal with all of this.
Have a great weekend everyone.
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Dorothy, I feel like we are totally in sync.. I too am on my week off and seeing Onc on Monday for labs. Is this also your first cycle on Ibrance?
Roses, thanks for the BCBS info. I was denied the first cycle, and we appealed. I haven't heard anything yet, but I am about to order second cycle. I'm hopeful now it will go through, especially since they put yours through.
Hope, EL Capitan?
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Susan - I had trouble with 3 specialty pharmacies - hours on the phone, barely getting meds on time - of all things the Safeway where I live has a specialty arm and they have been fabulous - johnny on the spot - every time. Don't know where you are and all could be different depending on efficiency of staff but just thought I would let you know. Susie
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Hi everyone, my mom is Stage IV & recently started Ibrance + Femara almost a month ago. She has had mets to her bone since her initial diagnosis in 2011, which went on to her liver and more recently, malignant pleural effusion since the fall. The pleural effusion is the hardest part for her since it affects her breathing and her ability to lie down flat which in turn, affects her sleep. She has not had a full night of interrupted sleep in a long time.
We are crossing fingers, hoping and praying hard that Ibrance works for her. She has gone through four IV chemos with no success. She was on hormonal for the first three years at Stage IV and it did great until it didn't (you know how that is).
All the love to you all!
xo, Sarah
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Hi Sarah,
Thanks for joining us, and hope the new combo is the trick that stops the cancer in its tracks. I believe most of the side effects for us here have been pretty tolerable, and hopefully that will be the same for your mother. Keep us posted. Has she been able to have any treatment for the pleural effusion? I don't have any experience with it, but I know people have had it drained for relief and if it continues to be a recurrent problem, they can do a procedure called pleurodesis that permanently prevents the build up of fluid.
You're mom is lucky to have a caring daughter like you!
Joanne
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Sarah, thank you for joining us on behalf of your mother. Hopefully Ibrance will be the relief she needs. Feel free to jump in and ask questions when you need to. Myra.
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Stefajoy I think I just completed my fourth cycle. So far, so good. I worry much more about the drug being effective than I do about the low counts. Working so far but every month when I get my markers checked I get major anxiety. I think in the future more drugs will be paired with Ibrance which will provide many more options for us all.
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Wow, we have a very active thread going here. Love it! I'm sitting here in a camp chair with a blanket enjoying a hot cup of coffee. That said, I had a rough night! Woke up in pretty awful pain a little after midnight. Still aching now. Not sure if it was the sleeping arrangement or the Xgeva or the week off pain cycle I've been having. My husband brought a base for our air mattress so that I don't have to bend and all. It's actually just like a normal bed, so not sure why I had such an awful time. Either way, it's pretty intense. I may have to go wine tasting today if this keeps up!
Stefajoy, that's funny you mention El Capitan, we love going there. But this time, we are at Flying Flags in Beulton right outside Solvang.
Dorothy, I had a infrared session yesterday morning and 2 more scheduled for next week before I leave for Alaska. I missed about a week because too much going on, so want to make sure I keep it up in case it helps. I usually feel a little more energetic afterwards and my counts, although still very low, were better than they were the last couple times. We shall see.
Myra, hope your pain relents soon! If not, may be time to get it checked out. Do you have some pharmaceuticals to help with that? Sure hope so. Pain zaps the joy out of everything!
Enjoy your weekend everyone!0 -
Walked to the farmer's market and then back up our hill with over flowing bags. Dan dan noodles for lunch, and now a full afternoon of coding. I have taken my first two pills after dinner which is the most convenient time for me. What meal are you folks taking them with? Again, had a wave of nausea for about a half hour about a half hour after taking the pill, but it is not accompanied by that "vomit-feel" so not too bad. Tonight we are taking our daughter and son-in-law out to dinner to celebrate his promotion at work. Family dinner have slipped a bit, and it is time to reactivate them. Usually I made family dinner, but we thought a promotion was a good excuse to have someone else cook and clean.
Romansma, sorry that you had pain overnight. Lack of sleep with pain is just one of the things that I hate the most. Wine tasting could be the solution, no doubt. Did you get marshmallows on the fire?
*susan*
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