Ibrance (Palbociclib)
Comments
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Also wanted to say that I finally got caught up here... for days, I kept checking in and there were no posts in my "favorite topic" - literally, all I follow regularly is this Ibrance thread. I thought that with the holidays and all, people got busy... then realized it had been over a week since I saw any new posts! It was then that I realized I had been logged out, LOL. I logged in again and BAM - more than three full pages of posts to read! I'll pay more attention next time, HaHa.
So, I wish everyone better health and successful scans in the coming year!!
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Hi everyone,
I just want to give you an update. After having done great on I/L for 2 years, I started having increasing pain in my lower back, fever flashes every few weeks, I lost my appetite (lost 15 pounds in 8 weeks) and - worst of all - lost sensitivity in my butt and back of my thigh. All of this happened in only 10 weeks. When pain became unbearable with OTC pain killers, I went into the hospital. They put me on opioids and performed an MRI of my whole back. It turned out that I have a met in S1/S2 which grew into the spinal channel (sorry, I do not know the correct word in English) and compresses the nerve roots. Thank goodness that they did an MRI, because in my August CT the met could not be seen at all, neither could it be seen in the CT they took 3 days after the MRI! Additionally, it turned out that my whole spine looks quite worse on the MRI. It appears that my MO was kind of blind to what was going on in my body. And she ignored me telling her about pain and everything, because to her I was fine. BTW, it turned out that my CA15-3 increased from 35 (08/19) to 55 (early 12/19), and my CEA from 1.9 to 7.1. Unfortunately, they only do tumour markers before staging, because they are having bad experience with people getting crazy about non-telling marker figures. Well, in my case the figures would have been telling...
Well, I am trying not to be too angry or to blame my MO. I appears that it is rather unusual that bone mets cannot be seen in CT. At least, they now decided that I will get surgery to my spine to remove the met part compressing my nerve roots ... plus radiation 6 weeks later. And they already put me on Exemestan/Everolimus, although I need to wait with the Everolimus until wound healing of the surgery is fine. They will also use the met specimen to check why Ibrance failed on it. I hope that things - especially pain - will settle again after surgery and that my new meds will give me many good months.
Meanwhile, I want to say goodbye to all Ibrance dancers and move on to the E/E thread.
All the best to you,
Netta
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Ah Netta - its a shame things had to get as far as they did before someone checked it out. Best of luck on E/E and let's hope they find some answers for you for a long, successful future treatment.
BevJen - noro is making some fast rounds over here - perhaps it is that?
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NettaGer, I am so sorry to hear about your progression and pain - I can't imagine how difficult it is to be going through this around Christmas and with such young kids. Two and a half years on I/L might look like a good long time from the outside, but I know you needed more, and with an excellent initial response it looked like you would get more - this is such a cruel disappointment. You and your family deserve better than this. If there is a silver lining, and it might not feel like much of one, it's that it doesn't look like it's spread to any organs, and that there's not reason to believe the second line of treatment won't work as well or better than the first.
I don't have personal experience with back surgery, but there are people on here who have had it done very successfully and were able to go back to being pain free and mobile. Pajim comes to mind, but I'm sure there are others.
I'm not sure whether treatment "lines" are standardized in Germany or whether the doctors have flexibility in what they prescribe based on the individual patient, but I was wondering why you were switched to examestane/everolimus instead of fulvestrant (alone or with a CDK4/6 inhibitor). Fulvestrant seems to be the most common second line in the US, but it might be different in Germany.
Whatever treatment you move on to, I hope you have great success and very few side effects.
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Netta, sorry to hear of your progression. I hope your next treatment works as long for you.
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Netta, I'm so sorry to hear about your progression. I hope your new treatment works for you for a very long time to come.
If you are uncomfortable with your MO now, don't feel bad about getting a second opinion with another or switching to a different MO. I feel that my first MO dropped the ball with me and as much as I felt bad for switching I didn't think I could go on being comfortable as her patient anymore, so I switched. You need to do what you have to do for yourself. You are what matters now.
Please keep us updated on your treatment. Best wishes to you.
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NettaGER, I too am sorry to hear of your progression woes. I will be praying that your surgery and next meds is the right answer for you, and that you can experience some relief in time to enjoy the holidays a little. We will miss you here.
Bev, how is your fever today? Are you feeling any better?
The whole family is experiencing a cold and cough right now (visiting son included) but I am soldiering on. If it persists after Christmas I may break down and ask my onc if she wants an xray. She told me a couple of weeks ago that if my cough worsens to call her office as she put in an order for one if I call.
In the meantime, I hope everyone here experiences a Merry Christmas and a Happy Holiday.
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Chris,
Thanks for asking about me when it sounds like you aren't feeling so great right now! Hope your cough clears up (as well as the rest of your family!)
Not to be too graphic, but the vomiting subsided last evening. My temp also went down to normal range by the time I went to bed (around 10). Today I just feel a little bit achy, like I would with a virus, so I'm sure that's what it is. Taking it easy today while still trying to pull Christmas together. So I'm pretty sure it wasn't the Ibrance -- I really haven't had much in the way of SEs with Ibrance after my first month or so -- just the unrelenting fatigue, as we all so.
Merry Christmas!
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My wife's hemoglobin level has fallen again, and now its at the level they are going to give her a blood transfusion. It was 74 last week, and now its 70.
The oncologist told her that it isn't the ibrance causing the anemia. I am puzzled. Where is this coming from? Pfizer's website lists anemia as a potential side effect noted in the clinical trials. When I google ibrance and anemia, I find endless posts by women on ibrance that are getting anemia and some receiving blood transfusions.
Anyone have an opinion? Recent scans show her cancer is stable. No sign its in her bones. Tumor markers remain low, but rose a couple of points. Liver enzymes are the best they have ever been. platelet count is loss, but higher than her normal low. Its just red blood cells that are low. She is currently on 75mg ibrance, and has been on ibrance now for over 2 years.
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Husband,
I haven't really contacted Pfizer, but is there a contact number to reach someone on their Ibrance team? If so, I'd call and see what they say. Perhaps your MO hasn't seen this, but it sounds like it's a definite SE. Good luck.
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I tried calling Pfizer and they told me that it was an issue for our oncologist and pharmacist. So I called Bayshore, who is the pharmacy for this product, and had a really good talk with the pharmacist. I am going to get my wife to call him and give him all the details of everything she is taking. He was excellent to talk to.
She is currently getting a blood transfusion. I am hoping that her increase in iron, for only a week or week and a half, was not sufficient, but that staying on the iron will stave off future anemia. One can only hope.
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Netta I am so sorry for all your pain and disappointment with your Onc. You are in my prayers. Hope the new meds will work for you and the operation is successful. Have a blessed Christmas and may the New Year bring great health for you.
Husband, definitely call and ask that question. Pfizer has a team that helps when you have any questions. I had to call them about a Ibrance cycle where I was having a lot of problems. More than usual with the meds.0 -
Netta... nice to hear from you, but sounds like a horrible time. Good luck to you on the next treatment!
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What is the Pfizer department called that I should call?
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Netta- Sorry for your progression. I fear that time for me- I am on cycle 24 of I/L. Check in with us from time to time. I will try to follow you on the other threads.
Husband- Sorry your wife is having the anemia issue. Maybe the iron will help too.
I saw my MO today for a routine check in. Nothing new. Next CT in Feb- no date yet, will have to get ins approval closer to time. My MO still concerned about white count and said she doesn't want to lower my dose of Ibrance (I am on 75mg now, so schedule change?) but she is concerned about counts with the cold/flu season. I told her I don't want to change dose. That the Ibrance is holding the cancer at bay. Next lab is Jan 7 (end of week off Ibrance) and she will look at those numbers.
Hugs to everyone.
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Husband...google Pfizer and they have some listed numbers. Choose one and I am sure they can guide you from there. Also your pharmacy probably has the number.0
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Candy what would she lower your Ibrance too. Is there a lower dosage than 75mg
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Airlinegal- No there is not a lower dose- lowest is 75mg. But I guess we could tweek the schedule-- rather than the norm of 21 days on, 7off. I do not want to mess with it. I have been stable for 24 cycles. But my MO seems freaked out by my numbers. After 7 days off my WBC is 1.7-2.0 and my ANC is 900-1000. I plan on telling her I want to keep as is, no matter the number. I have the Ibrance in my possession so I can keep taking the pills no matter what she says. Haha. I don't understand why she is so freaked, as I read on here that we all have low numbers and that Ibrance is not as bad as IV chemo for people getting sick with those low numbers. I don't think she has too many patients on Ibrance so her knowledge is limited.
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Candy-My ANC has hovered between .6 and .9 during the past year. During that time I have gotten one mild cold which lasted just a few days after I was coughed on by a woman in a yoga class. Suggest that your doctor read the Ibrance prescribing info closely. I would be put on a lower dose if I had fevers which I don't. My doctor just reminds me to let them know if I am sick and to check and see if I have a fever. Apparently on Ibrance our WBC's are "really" as low as they seem.
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My wife's ANC is always below 1.0, but they keep her going on the Ibrance (75mg).
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I saw this quote today and thought of all of us....
"You can do it like it's a great weight on you, or you can do it like it's part of the dance."
-Ram Dass
Piggy - amazing news! So very happy for you!
Netta - I am so sorry it took the doctors so long to figure this out and hope the surgery and new tx gives you relief . It is so frustrating to me how our symptoms can come up and doctors don't necessarily catch them. My neutrophils dropped so i had a blood test today at my local medical clinic - only the very sick are there so I can't stop washing my hands! Will start cycle 3 of Ibrance tomorrow if my numbers are up (which they should be!).
Mike - I hope you get answers on cobra.
Merry Christmas, Happy Hanukkah and happy holidays to all!
XO Susan
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Merry Christmas!
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Had my VATS surgery 2.5 weeks ago and am healing Ok. My surgeon is still checking chest X-rays and following some pleural effusion, Right side same side as original BC in 2007 and where I had Radiation. She order a thorentensis (Tap) on the 31st for the effusion. She doesn’t think it will come back. My treatments start on the 26th. Ibrance and falsodex. I wasn’t expecting this complication...any one have a tap procedure done
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Husband, is your wife doing better? Did you get the answers to your questions on the hemoglobin?
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Imagine, when I was diagnosed with mbc in my right lung in 2013, I had a pleural effusion drained. A local anaesthetic , I could feel pressure but no pain as a tube was put in. It's a slow process so take a book or films on a device to keep you occupied. A little discomfort when the tube is removed , a couple of painkillers sorted that out. Hopefully, you will feel better after the procedure , I certainly did and so far it it has not returned. I hope it goes well for you.
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wow you were DX in 2013. Gives me so much hope. I’ve been really down about all of this. Are you on Ibrance
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Merry Christmas everyone!
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Imagine...I have it done twice and for me a little discomfort. Not bad at all0
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Merry Christmas, Dancers and former Dancers! May God bring you a healing year and days of great peace.
Keep your hope alive by reading stories of those who are longtime survivors of MBC. Remember that there are people decades out from this and you can do the same. I was diagnosed with BC in 1994 and MBC in 2012 and I'm just a baby at this compared to some of my friends.
Ibrance/Arimidex/XGeva was my combo for the past three years and it served me well. When I had some progression Lynparza had just been approved so I've been taking it for two months. (I've been waiting for it since I'm BRCA2+ and it's had good success with BRCA+ Ovarian Cancer survivors.)
Scans in February will let us know how it's working but I'm pretty sure it's doing its thing. I started (against my better judgement) at the highest dose and insisted on lowering it after the first month due to nausea/vomiting and weakness/fatigue.
So here's a big hug and a reminder that someone in Memphis is praying for all of you! I've learned that Christmas can come without me going into a single store or cooking a single bite...everything ordered right here on this laptop. Who woulda' thought?! Christmas dinner catered by Olive Garden....spaghetti is the new turkey!
Love from PatGMc
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