Ibrance (Palbociclib)
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Rosestoeses, so funny you mentioned that hip pain! I just told my DH the exact same thing. I love this thread.
Susan, welcome. I totally remember you from the short 4 months I was on fasolodex. Glad you are joining us, this is a group of very knowledgeable, caring women. Good luck with the Ibrance.
Myra.
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Myra, sorry you have it too, but glad I'm not alone! I think with a drug this new, there isn't really the institutional knowledge, glad we all have each other to share.
Susan, sorry you're moving on to Ibrance, your long, long Faslodex run was really inspiring to me. There are a lot of us "fanny pack refugees" here, though--hoping this is a winner for us!
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All you gals starting up or again on Ibrance: I've taken 9 doses as of today. Not really any SE yet, but I'm way early on this drug. I pray for positive results for all of us and mild SE!!!
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Welcome, Susan! This new drug requires a lot of "supervision" by our docs that we Fanny Pack sisters aren't used to, but if it works in the long run, of course it's worth it. Like you, I'm glad to have a reprieve from either A/A or chemo. I'm especially glad we have each other to compare notes and give encouragement during this little experiment. We can do this!
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Welcome Susan! Speaking from experience, Ibrance is easier on me than Afinitor or Xeloda, so that is a positive. Jury still out on effectiveness for me, but should know soon.
Roses, pain flares have definitely been an issue for me. They start on my 7 days off and continue through the first week or so of the new cycle. The pain is concentrated in my lower back and hips. I have a large tumor load in those areas, But I am still confused by the pain and the timing of it all because it seems intermittent. I wondered if it could be due to my blood counts working extra hard to recover. I've had consistent low counts and the major pain seems to start when I finish the cycle. I remember being surprised by the lower back pain when I took Neulasta. I ant remember how low my counts were then, but my wbc has been hanging around 1.2-1.3 and ANC around .6. Guessing my body is trying hard to recover during that week. I was told the Neulasta pain would be concentrated in large bones. This may have nothing to do with it, very confusing.
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Sandilee, Yes. It appears that my month will now include three visits to the hospital. My oncologist, Dr. Christina, wants me to get a CBC on day 15, full panel on Day 21, and then she sees me between day 26-28. Since my veins were brutalized getting the MRI contrast in this week, she has ordered a finger stick for the CBC, while the full panel will access the vein. I expect that I will have the PA on speed dial as we manage the first two cycles. Her job is to help me manage the side effects. She is new so I don't have a good relationship with her yet. This will test her since I like clear answers. :-)
*susan*
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Hope, mine started on the week off also. I had an Xgeva shot at that time and I get it on that side of my stomach. I thought it may be that, but now I am not sure. I do know I will not be getting that shot when my counts are low since I almost passed out a day later. Myra.
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Approaching my ten-year anniversary of a Stage IV with bone mets diagnosis. Just took my first dose of IBRANCE with Femara. The dosage pattern of 21 days on and 7 days off is familiar and bittersweet. I'm expecting fatigue and drops in my white count, but wondering about hair loss. I'd love to hear from anyone with first-hand experience with IBRANCE. Thanks very much!!
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Well, I am leaving the Ibrance crowd, I sure am not happy about this . I had a ct yesterday, ONC called later in the day Tumors in liver have grown along with elevated tumor markers . So I wish you all well and hope you get the results we all want.
ONC has said next drug for me is taxotere . I had never heard of it, but he said is along the lines of ibraxane that I had the longest and best results with .
Take care Redroan
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I took my first dose of Ibrance/ Femara yesterday eve! So I
am now officially a "newbie" too!I was really really tired all day and I had to take 3 shortish naps to make it through the day. I hope that is not directly related to the Ibrance and if it ISrelated, I hope the fatigue gets better. No nausea, though! And I did drink lots of water as advised.
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Welcome, Vivian! Glad approval went well and you're on your way.
Redroan, oh, no! What a disappointment. Any time we have progression, it just sucks. It sounds like you be getting something that is likely to really work for you, though. Best of luck, and let us know how it's going.
Take care and hugs to you.
susan- Your onc's office sounds a lot like mine in the way they are watching things so closely. It seems like a lot, doesn't it? I hope that when things settle down we won't need to go in so often. And of course, I hope we're on this long enough that it matters.
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Myra, I didn't have the xgeva this last time, so I don't think the pain flare is anything to do with xgeva for me.
Welcome, Auelx. I don't think anyone here has experienced hair loss on this combo.
Susan, your schedule seems typical for the first 2 cycles. If all goes well, they usually stop checking mid cycle.
Hang in, Vivian. Fatigue is a mainstay of mine. Really not sure it has a lot to do with the drug combo for me. My counts are low, but it could be the pain meds, or even the cancer itself dragging me down. So hard to figure all the different symptoms and what is driving them.
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AuELX and Vivian, glad to have you "official"--welcome and hope it works wonders for you both!
But, Redroan, I'm so sorry it didn't work for you. I think it's especially hard when it's billed as a "wonder drug." I so identify with what Romansma said on another thread about being outside the park gates and not getting in. (((hugs))) to you and hope taxotare does some great work for you.
And, Romansma and Myra, I had my last Xgeva 3 weeks ago so I don't think that's it for me, either. But the timing of it for me is similar to yours Romansma. It was there in week 4 of cycle 1, worse in the off week, and more often now in week 1 of cycle 2. But it's different from the pain I had when I was dxed with the bone mets, closer to the really quick "zinger" pains I used to get on Faslodex that were followed by stable scans--that's why I'm hopeful, but also anxious to see.
Have a great weekend, everyone!
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Auelx, welcome and 10 years is very encouraging. I am just approaching my 1year with mets. Good luck to you and Vivian with Ibrance, I wish you the best.
Redroan, sorry about the progression, we all have to be realistic about these drugs. The media hype is just that media hype. Hopefully the next drug will work best for you.
My onc was making me crazy also with blood work, but now on cycle 3 he is doing it just once at the end now that he knows MY cycle. This month I have gone 21 days off, end of the cycle and then bloodwork. My poor vein thanked him.
That's all for now, Myra.
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Roses, I have not had hip pain on Ibrance - have not had any hip pain since I had radiation to the pelvic area a year ago (hip pain was was bad then, though, couldn't walk normally, so the radiation was very effective), and the hip pain has not come back so far on the Ibrance although sometimes I feel a dull pain in my lower back. However, I have had pain higher up the back and in my ribs that sometimes moves to different places - could be progression from bone or lung mets, but my visit last month showed TM's had gone down for the 1st time in a long while since switching to the Ibrance (may not mean anything till there's a pattern, we'll see what the scans show next time).
I did hear a "crack" the other night in my back, though, along with a sharp pain (was just moving around trying to figure out how to get comfortable sleeping since both sides are hard to sleep on now). I remember a while back I cracked a rib just pulling up a big plant, must be the weakened bones in my case, not the Ibrance, so I can't do anything too strenuous, and I have to rest my back at the end of the day so I can't get done what I once did.
Redroan, I hope you have better luck with the next drug, sounds hopeful since it's similar to the abraxane you had luck with.
Vivian, the low blood counts do make you tired, but also the stress of switching to a new med is exhausting, so hopefully this will improve as you adjust. Good luck to you and to everyone starting out!
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Thanks for the well wishes , I wish you all the best. I will probably still drop by to see how you all are doing.
Redroan
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Best wishes to you, Redroan!
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Hi Ladies, so here I am in Napa at a 3 day music festival. Let me preface this by saying that I am only three weeks out from reconstructive surgery, and I started Ibrance a week and a half ago. My WBC was 2800 (low, but not too low?). My first day here I picked up my small suitcase and pulled something in my lower back on the side. Been in pain ever since. So I manage an act or two at the festival, then I need to go back and lie down. I only made two acts today. Mostly i am in bed. Although a nice bed it is. Also, no dogs or kids. I'm hoping to make it 6 hours at the festival tomorrow. It's a lofty goal. It makes me sad to see all of the happy people singing and dancing, only because it hurts me to move, plus I'm too tired, and.... Oh yeah, I have CANCER. I do believe that once I am completely healed from the surgery, and my body get used to the new meds, and I can start exercising and strengthening a little, I won't feel so decrepit. In the meantime, it feels like I'm never going to feel better, and I'm feeling a bit sorry for myself. Kind of depressing
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Stefajoy, as I pretty much can tell from your photo, you are a young woman with a young family who wants to enjoy life like any other young person with a young family. I understand completely and wish I had a magic wand and could make this dx go away. Cut yourself some slack. 3weeks out from surgery? Give yourself some time to heal emotionally and physically. Do you have someone to talk to who is unbiased? We all need the love and understanding that people with this disease don't get. Try to take it slow and easy and give yourself the love and understanding you need in the timeframe you want. Virtual hugs. Myra.
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Myra, thank you for calling me young. I feel better already. lol.
I'll be 51 next month. Dx'd at 47. In three years I feel like I've aged ten. Got thrown into an early menopause, lost my libido, and lots of aches and pains. I was super fit and healthy before. What a difference a few years make.
My kids are 14 and 17. Almost there.
I know I'm being impatient. I haven't really had anyone to talk to, although I have an appoitment next weekend with a most wonderful therapist who understands BC firsthand(two times survivor, so far). I know she'll help me feel better. In the meantime, reading the posts in this group and the other mets topics has made me feel validated and less alone. My doc always said stay away from forums, they are full of misinformation and a lot of negativity. I think he does not know this forum. This forum is full of real woman, with real experiences, both positive and negative, but always realistic . I find this forum full of love and support. I'm glad I'm here.
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Roses, those "zinger pains" on faslodex....omg. They really freaked me out. I was convinced they were from the injections but my onc seemed to think it could have been inflammation from bone mets pressing down on a nerve. Sorry you felt them too but it's so comforting to hear someone describe the experience so accurately.
Now I too get a pain that started late in round two of the Ibranc. It's a poor man's hip zinger, different from the omnipresent dull ache, but still a little disconcerting.
Welcome AuELX and Vivian. Wishing you the best on this new med.
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Stefajoy, I was dx'd at 43, now just turned 60. My "kids" are 32 & 27 now. I know the thrown into menopause routine, because I was also. My poor DH, libido what is that? I understand your onc's concern about forums because I had stayed away from them for years. There are a lot of them with very negative women. Not here, tons of caring and love. Lots of good info, lots of help with SEs. I too was in great shape prior to this dx. I even taught spinning 2x per week. The media are the ones who put out misinformation. Eat right, exercise, stand on your head and spit wooden nickels ( did I just date myself?). It makes it sound like we are causing our own BC if we do not live the perfect life. OMG, help us if we have a cookie or glass of wine.....ok rant over!
Kaydeesmile and Rosestoeses, what do you mean zinger pain? My hip pain comes and goes right at my waistline.
Enjoy Sunday, mine is errands while I have DH around.....Myra.
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Stefajoy, I hope you can enjoy yourself today. I grew up just outside Napa and still love visiting there. I have a friend at the festival you are at. I've known her for 30 years. She has stage IV BC too. I am seeing her postings on FB. BottleRock, right? She is 49.....still young with a 11 yr old. Just like you (and me)! Go act your age! Enjoy!
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Thank you Pearlady and Romansma,
I took Femara previously for only 4 months before it failed, so I guess I shouldn't be too surprised that I failed Ibrance after 3 months. Freaking out. Thanks for continued prayers and hoping Halaven works for me.
Liz
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Good luck with your next treatment, eshinall!
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Hi All,
I just started cycle 5 and they decided to lower my dose to 100 mg. My counts have been pretty good and my white count has been actually going back up. My Neutrophils are low but that hasn't changed the entire time I have been on this trial so I was surprised when they told me they were lowering it. They are seeing that lowering the dose really helps with the fatigue you get the last few days.Since they are still "fooling" with the dose and trying to figure out what is right.. I have no problem having it lowered. Each month is getting easier to tolerate so hopefully this will alleviate the end of the cycle tiredness.
Welcome to all the new Ibrance users.
Romansma, your cruise sounds great! Have fun.
Drinking my water.....
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Lenn13k, That is very interesting since I am down to my last 3 pills and was exhausted today. Are they lowering the dose for all patients? - I see you are in MA - Are you at Dana Farber (I am, so I wonder if mine will be lowered as well)? I am guessing my neutrophils are down again, will see what they say about the dosage.
Stephajoy, I agree with Myra, it takes time to heal from the surgery, and I think you'll feel better when you do, and you will have more energy. It is also very stressful and tiring switching to a new med, I think things are better once you adjust.
Kaydeesmile and RosesToses, before I had radiation to the pelvis a year ago, my cancer was pinching a nerve and causing sharp pains as well as difficulty walking. So it could be a nerve, those nerve pains are usually sharp. The radiation was an amazing help since I have been free of the hip pain and able to walk fine for a whole year now - (even though I now have a higher up back and rib pain, it doesn't affect my walking).
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Liz, good luck to you. Hope the Havalen works.
Myra, the zingers are VERY sharp, quick, stop me in my tracks pains in my upper thighs. They had gotten pretty frequent for me before the Ibrance. They've been replaced with a different kind of less intense, periodic stabbing pain in the same area. Then there's also the dull ache right around the waistline that never goes completely away but is manageable for me.
Holly, I've discussed the possibility of "spot welding" on a few places in my back with my MO and RO. If the Ibrance fails to get rid of the stabs it'ssomething I'll push for. I think we're in wait and see mode.
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Kaydee, what is spot welding? Hope you get some relief soon.
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Kaydee's description fits the "zingers" I had on Faslodex and what I have now on Ibrance to a "T"!
And on Faslodex I had them in some of my other met spots occasionally, too (skull, ribs, etc.), but so far not in those places on Ibrance. With the Faslodex, it was followed by stable scans and some sclerotic changes, so after that it didn't seem as scary as at first (I was sure it was the cancer spreading before scans showed differently). That's the hope I'm holding on to with Ibrance, as well, but time will tell.
I had rads to my pelvis/femur about a year ago, too--it was amazing how much that helped the pain and so fast! These current pains are different, though, and on both the radiated and non radiated sides. So weird!
Lenn, that's interesting about the lower dose. I'm only in cycle 2, but so far I'm feeling pretty good. I wonder, too, if this is a protocol change or something particular to your situation? Hope it does the trick wiht your fatigue
Liz, praying for you on Halaven, hope if knocks that cancer out of commission!
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