Ibrance (Palbociclib)
Comments
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Piggy, when my last metastatic spot went down to 2.3 SUV, my oncologist said, "That's about what you'd get from a stumped toe. No big deal." So yours is maybe a stumped little toe. Hallelujah! And congratulations! Don't let concern about whether this will last get in the way of your joy today, my friend. All we have is today.
Love from PatG
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With you in spirit, Piggy,for op tomorrow!!
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Piggy YAY! Those results sound terrific. As many have posted, it takes a while to see the full impact -- 3 to 6 months. My response early was similar. I'm also de nove and bone only. And their suspcion is that I was also at one time lobulor ... which is how mammos and scans likely missed my primary.
Here I am19 months out and doing better than I ever could have believe.
I think you should give those cartwheels a shot!
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Thank you Cure-ious for all of your information. I follow it carefully. And congratulations Piggy!! Fantastic news.
I had some pretty fantastic news today myself. I currently have mets to the pleura of the lungs and recently had a bone scan which indicated no mets there. I was so happy I went into the oncologist today one day shy of three weeks first cycle of Ibrance and 5 weeks Letrozole. No scans but they did bloodwork earlier this mornings. The biggest concern for me was the fear that in addition to having bc mets my ovarian cancer had returned as my CA125 went from 60 in September to 292 in March and 359 four weeks ago in April. My blood test today showed my CA125 (a TM for ovarian cancer) to be 66!!! I burst into tears. The reality is that you can't treat bc and ovarian cancer at the same time as the treatments interfere with each other. They would have to pick the most aggressive cancer and treat that while stopping treatment on the other.....in other words a short timeline for me. Sometimes, if your cancer is in the lining of the lung the CA125 will rise and this is what was happening to me it appears. The drop also means that the treatment is working. There was no way to know this until scans were done without this TM. So......regardless of everything else I am a very happy camper tonight and I wish you all great results. Hard to believe....still stage 4 but full of hope.
My best wishes to all
Cathy
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Oh, and as an aside, I got a prescription for Bactroban and they are doing a bone scan and considering biophosphonates to protect against bone mets in the future and treat my bones because of the effect of Letrozole.
Cathy
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Cathy, I'm so happy for you! You're the latest answer to my "bathtub prayers" where I ask God to help each one of you who reads here. I hope you will follow my lead and stop thinking of yourself as a "Stage 4" which, in the old days of MBC stood for "Short-timer"/Terminal. Now we can think of ourselves as people with an often chronic disease who keep on living our lives. I have friends who have lived for decades after this diagnosis. They did it without the super-drugs we now have so it makes sense that many of us are going to do even better than they did. Do we need to get our affairs in order? For sure...and so do all those well people out there! I'm happy you'll get treatment for your bones as there's growing evidence that it helps prevent the spread of BC there. I take XGeva once a month with a shot to the belly...no big deal! Celebrate all your good news, girlfriend!
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Hello ladies,
My Onc. told me that I'm in complete remission now (THANK GOD) after 4 rounds of AC and another 4 of Taxotere, and that I'll start Nolvadex (tamoxifen) for 2 years as I'm still premenopausal.
But I'm still confused as apparently most of you here started Zoladex with Femara and Ibrance, which was actually my second Onc.'s opinion but after 2 more rounds of taxotere to get the best benefit
However my Onc. told me that they are both effective but with less risk for osteoporosis with tamoxifen and that we'll switch to femara later.
So what's your opinion ? I still don't know what to do.
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Oh, Cathy....spectacular news! Jumping for joy with you!
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Pat and Lynn;
Thank you so much. Pat for the first time I am beginning to feel exactly like someone who could have a chronic illness. I really didn't think that would be possible for me but with these results, knowing also that the treatment must be working for me, I do feel like I might be able to live a longish life. Amazing....and super lucky.....so far lol.
Cathy
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Cathy (seaway), great news on your markers - isn't this life funny when you celebrate "only" having MBC? But maybe it's a sign that, as Pat said, MBC is becoming more of a chronic illness than a death sentence. I hope most of us here get to walk on this hopefully long road together.
Tropa, complete remission is amazing! Cheers for the cancer being gone forever. In terms of treatment, it does seem that most of us pre-menopausal ladies were were put on ovarian suppression and Ibrance plus an aromatase inhibitor (or Faslodex) from the get go (even more so on this Ibrance thread
). My oncologist combined the Ibrance with Tamoxifen for the first month or so until I'd had two shots of Lupron and my bloodwork confirmed chemical menopause, and then switched to Letrozole. But I wasn't in complete remission, like you are, so in your situation it might make sense to not go full hog from the beginning. I don't know that it's a cut and dry decision, but it is something to have a conversation with your doctor about, or even seek a second or third opinion. Good luck!Thank you all for celebrating my Pet results with me, and have a great long weekend!
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piggy, congrats for your results at first and thank you for your reply.
It’s complete metabolic remission actually as it’s still CT detected but no activity or FDG uptake by PET at all.
I think I will get a third opinion about starting Tamoxifen or Zoladex with femara and ibrance but I feel like I wanna get the triple combo as that was the 1st recommendation on Uptodate. I know each case is different, but you get more confidence when you are start a drug that many others are using as first line too.
And as regards the operation for the primary in the breast ( as I’m de novo ) , they told me that it’s useless now and won’t do much benefit
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Ibrance finally arrived! It is truly nerve wracking to be completely out of meds in the middle of a cycle.
Enjoy the weekend everyone
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Kathryn, Did you get any explanation of why your Ibrance was delayed? There must have been others in that same situation, and that is just awful. I'm glD you finally received the medication and hope the delay never happens again.
Tropa, Congratulations for such dramatic results. Woohoo! I think that either choice of treatment can be effective for you. I have a friend who has been taking tamoxifen without Ibrance as her first line of treatment since her MBC diagnosis 2 1/2 years ago. She has been NED for almost two years. I was post menopausal at diagnosis, and I was started on Arimidex. I noticed that many other people here were on Femera and Ibrance. My MO thought Arimidex was a better choice at the time because my blood counts were very low. Arimidex failed after 13 months, but my primary tumor and bone mets did shrink quite a bit before there was any progression. I have been on Faslodex and Ibrance for 22 months. Would I have done better if I had started on Femera and Ibrance followed by Faslodex alone? I don't think so, but we will never know. All I know is that it has been three years, and I am still here. Do you have a copy of Bestbird's MBC guide? If not, you should request one. It outlines all the treatment options, side effects, and more valuable information. A second opinion is always a good idea. You should also ask your onc why he prefers to give you the medications he has recommended rather than Femera and Ibrance. Maybe he has valid reasons, maybe not.
Cathy, Congratulation to you for you fantastic news, too. Woohoo! I have been worried about you and was happy to read about your results.
Piggy, I hope your recovery from today's surgery is swift and uneventful. Congratulations for you good results, too. Woohoo!
So here I am, doing my happy dance three time as joyously for you wonderful women who should celebrate your good news. Piggy, please celebrate gingerly. This is the best part of being here. It warms my heart and makes me pause and smile
Hugs and prayers from, Lynne
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Well ladies. I could use a little encouragement. I just completed my first round of Ibrance and don't know the results (doctor's appointment May 30). I was talking with a friend the other day and she was talking about taking an RV trip to Alaska. That takes about 3 months. I told her I couldn't be gone more than 4 weeks (in between Faslodex shots). I got to thinking about that and got depressed. I will never, ever, be able to be away from my oncologist more than 4 weeks the rest of my life, so it seems. I doubt this seems major to some of you but it hit me in the gut. I have been on this journey for almost 5 years and from time to time I have a "pity party" - why me? I have not discussed this with my husband as I don't think he will be very sympathetic. I do get anxious every month when I go in for my shots to see what my labs look like. I always look at them before the doctor gets into the room so I have a "heads up" on my numbers.
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I don't post much here, but I saw my onc yesterday and for the first time in over 2.5 years, he asked me if I was having problems getting ibrance. I said no, why? He then said that insurance companies are requiring proof that the medicine is actually working without a doubt. They are denying the medication for patients that experience any type ofprogression while taking the medicine. He said a lot of women were having problems getting the medicine and that Pfizer was overwhelmed with requests for assistance. He mentioned that some oncologists have had to verbally testify that this patient is at serious risk without receiving this medicine. It's a real problem, he said it doesn't seem to be getting any better anytime soon. He said the companies don't want to pay for the Medication unless it's absolutely necessary. Which is ridiculous considering it's stage four. But it was an interesting conversation. Something needs to be done. It's pathetic. Hope everyone is doing well. Have a great holiday weekend! Much love ~M~
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Wandering, I can certainly understand how you feel. Those darn Faslodex shots do tie us down, but I have a suggestion. Ask your oncologist if he or she could refer you to some oncologists, cancer centers, or medical practices that are in the vicinity of where you will be during the four-week and eight-week points of your journey (or whenever you will need treatment). Maybe he can forward your records or treatment instructions to those oncs so you can get blood tests and Faslodex shots along the way. I am sure this must be done for snowbirds, etc. I know that Florida's oncologists, for example, must get lots of extra northerners during the winter. Maybe your onc won't agree, but it is worth a shot. If it is okay, you will just have to Poland your trip accordingly, but it would be doable, right?
Hugs and prayers from, Lynne
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Micmel, That is interesting and troublesome. I wonder if that is linked to Iwrite's delay in delivery of Ibrance? I haven't had any issues at all so far. In fact, my specialty pharmacy usually calls me in advance to ask when I will be ready for the next shipment. We shall see if anything changes this month.
Hugs and prayers from, Lynne
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WHY does everything happen on Friday? My MO's office is only open til noon - skeleton staff, ONC isn't there, not even sure there are nurses there. I called first thing this morning because for about 24 hrs it has hurt to breathe - this is new for me. I didn't want to get stuck in serious pain over a holiday weekend, so I called to ask if it would be OK to take a muscle relaxer (flexoril) or oxycodone for pain, or should I stay away from it while doing the ibrance/faslodex? Since it's going on 2, I don't think anyone is going to call me back. Do any of you take pain meds? Or should I stick to ibuprofen (which isn't helping much)?
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Kathy0 -
Cathy (Seaway) and Tropa23, I am so happy and thrilled for your news!!!
PatgMc, you always ALWAYS put a smile on my face. :-)
PeculiarGirl have you tried double-dosing -- i.e. acetomiphen along with the ibuprofren? My husband had a root canal last week and they no longer prescribe any painkillers. But that combo worked pretty well for him. Just a thought. Otherwise, Urgent Care? So sorry that you are dealing with this today!!
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Kathy, I would not sit around waiting for a call back. Go to either the ER or to an urgent care center. If it has hurt to breathe for 24 hours, you need to be checked. It could be something as innocent as a pulled muscle or a viral infection, but it could be something more serious. When my husband had pulmonary embolisms, his only symptoms were pain and difficulty while breathing. PE is unlikely to be the cause of your issues, but why take a chanc, especially with the long weekend coming? Let us know how you are doing. Please go.
Hugs and prayers from, Lynne
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ONC nurse FINALLY called back (Toledo office is open til 4:30) - she said take a muscle relaxer. I'll try that - and go to ER if it doesn't help. Thanks everyone
Kathy
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Hi All,
I hope everyone has fun plans for the holiday weekend. My plans were pretty much rained out, but since it involved a lot of driving and soccer games for my son's tournament, I'm not that bothered. I am a little worried about my labs from today, though. My WBC is too low to start my 3rd cycle on Tuesday. I'll get them checked again next week, to see if they were able to bounce back at all. I have been feeling more fatigued lately, but we've had a crazy couple of weeks with all the end of the school year chaos, so I thought it was just that.
I know I've read some of you who had to take a week or two off. Has it caused you any problems, and do your numbers generally bounce back quickly? I have only seen my MO's PA lately, and she says this happens often, especially to people who were recently on chemo. I was on chemo from Jan- March until my scans showed that it wasn't working. She thinks I'll probably be dropped down to 100mg. I'm also a bit concerned about the Ibrance insurance coverage issue. If it takes 3-6 months to show that it's working, will insurers wait that long?
I'm so happy to hear about the great scan results. As I get closer to my pet scan (end of June) I get more and more nervous, and every twinge of pain has me freaked out. I have a vacation at the beach planned for that last week before my scan, so at least if I'm going to freak out I can do it with the sand between my toes!
Have a great weekend everyone.
Missy
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Kathy good luck! Keep us posted!
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Missy, the first two times mine were low they bounced back quickly. The third they did also though my MO reduced the dose to 100mg. That was a year ago and I'm doing very well overall
Nerve wracking always! But a lot of women on here are doing well and very responsive to Ibrance.
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p.s. I lost insurance coverage briefly last year when my AI was anastrole. My MO switched me to Letrozole and easily thenwon the appeal. She said with the latest FDA approval of that combo it’s very hard for them to deny coverage.
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Thanks for the input. I asked my oncologist about finding an alternative doctor in case I was gone when I needed a shot. He was not helpful. We were snowbirds for 10 years, including 4 years while I have been in treatment. It took me a while to find an oncologist in Arizona but I did. Now that we are no longer snowbirds, the only time I would need to find someone out of my area is if we take a long trip which would be planned far in advance. When my mother was alive, I traveled to Houston a great deal but managed to be there during the off times in between shots. Pretty nerve racking in any case not knowing what my schedule would be. She never knew about any of this and I worked very hard to keep the information from her. That's a divisive issue but that was the decision I made and stuck with. I struggled for a long time with that decision but feel that it was the right one for us.
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Evidently, Pfizer just changed their fulfillment systems and said the 5 call/10 day “glitch” was IT related. When I opened the package the container was broken and the pills were at the bottom of the bag. (They were intact.). What a cluster! I’m sure others were in similar straights. Very different than the boxed and cold packed wrapping of a few years ago.
Traveling with many treatments is doable! It took some time to set up new docs in Colorado, but now I can just bring them my scans and schedule check ups and Xgeva pretty easily. I Refuse to let it confine me regionally until absolutely needed. I know it won’t last forever💩.
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I need advise and I know this group totally understands like no one else--
I am unable to work my job I had for 20+ years due to fatigue, low white counts, and unable to lift heavy amounts ( mets to spine and shoulders ). So at the beginning of the year I took a position within the same organization working a desk job 12 hour days but only 3 days a week. I had to take a large pay cut (different job title ). Now I have a chance for another position, still within the same organization, for more pay ( not as much as the old job, but more than I am getting now ). It would still be a desk job and the issues above -lifting and infection risk would not be a factor. The thing is it is Mon-Fri 8am-5pm. I am concerned about the fatigue working 5 days consecutive and also about scheduling MO visits and scans. I need to talk with my HR department after the Holiday weekend concerning accommodations due to my diagnosis.
I know I am going to have to weigh the pros and cons and make my own decision. But do any of you have any suggestions?
If you are stable on meds, how often do you see your MO for office visits? I know I will need monthly appointments for injections of Lupron and Xgeva at the very least.
I also wonder if I am mentally up to learning a new job, new co-workers, etc. With this diagnosis, some days mentally and emotionally are a challenge.
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Ha ha Piggy - very happy to hear your positive news! Here's hoping we all hear it!!
I have a question about neutrophil levels and Reishi Mushrooms - because I am on Letrozole and Ibrance (just started cycle 4 today, hip hip hooray!!) I am asking in this forum. My neutrophils take 2 to 3 weeks after my 21 days of Ibrance to reach .9 or 1.0 at which time I am allowed to continue taking Ibrance, the only thing I can find through Dr Google to improve (supposedly) the counts are cruciferous veggies and Reishi mushroom supplemnt. Is anyone on the above combo taking Reishi? I have been eating greens since April 1 and so far not really improving my levels
Thanks for your feedback - have a great log weekend to all the Americans here!0 -
Tropa, Cathy, Piggy...so happy for your good news! Yay!
Candy, I wish I could give you perfect advise but no one knows your body better than you. I think I could have continued the desk job part of my position longer, but unfortunately I also taught classes and held faculty training that required standing and bending, etc., which I cannot do, plus the campus is very hilly which I could not navigate up and down all day. I also get back pain from the mets on my spine so sitting at the computer for long periods of time is difficult for me. I am also retirement age and my husband is still working so I had the option of retiring. But after 2 years I really feel pretty good most days if I don't physically overdo it. I have not physically declined worse much at all in the last year (I am NEAD) if that is your fear.
Only you know how you do and what SEs you put up with and how you feel after working long hours. If you can physically handle it, I would think you could work something out at work. I know keeping busy and feeling liking I am contributing to my family and friends is important to me. Let us know what you decide!
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