Ibrance (Palbociclib)
Comments
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Faith 840- Going to Italy sounds amazing. And going there with renewed energy is going to be great-also I love traveling in October- good weather and fewer crowds.
Did you have anemia when you passed out? It is amazing to be on 125 mg for 20 cycles! I only lasted 2 weeks on it, the 100mg has been very tolerable-not sure if that is because it was cycle 2 and everyone's cycle 2 is better or the lower dose is better.
50's girl-I did the Zometa over 30 minutes and it was much better. I also got a lower dose because my kidney function is less than 60 and that may be why I felt much better also. I also did the Faslodex over 2 minutes on each side and that is better-although a long time to stand. The nurse told me I had made her a convert to this very slow infusion of the super thick stuff.
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Nkb, I think I may have been somewhat anemic but none of the counts were low enough for my MO to think about reducing the dose even though I asked a couple of times. I also have cardiomyopathy and that may have contributed to it in some way. I guess I've managed the Ibrance fairly well for a 77 yr. old lady. I just hope I manage Italy one more time.
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Faith, you are going to have a great time in Italy. I just know it!
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Joy - This particular trial you reference looked at abemaciclib as a first line treatment, but we don't know this drug well. Abemaciclib was effective as a single agent in a small phase I trial of women who had had multiple lines of treatment. It is a different drug than palbociclib, it is CDK 4 targetted rather than CDK 6. Lots to learn.
>Z<
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Faith-840- I think you will have a lovely time. I was there in 2014 and really enjoyed it. So different than when I was 27 and totally broke. We got a Firenze pass in Florence so we didn't have to stand in lines for the museums-that was really worth it. Have a great time! Looking forward to hearing about it
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Faith - a trip to Italy in October sounds wonderful! We are all anxious to see some pictures!!! I went to Italy on my honeymoon almost over 14 years ago. We keep vowing to go back and just haven't made it yet. Hope you get rested up before the trip and have a marvelous, magical time!
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Faith, I am excited about your trip to Italy. You go, and have an amazing time! I went 4 years ago and had the best time. I would love to go again.
I am planning a small trip back east to visit my boys and their families. We had wanted to go during the turning of the fall leaves but my DH can't get off until the middle of the month. We may miss the foliage, but I look forward to seeing my 2 grandsons and my other son's new home in New York. I am praying I feel well enough for the long flight (from San Diego.) I had my Zometa infusion this morning and am now suffering through a major headache. That is usually all I get so I will be thankful. Yes, I am drinking lots of water and took my antihistamine last night. The days are beginning to wear on me so I understand all of you who are struggling with this. We truly need each other. I have a long list in my War Room who I pray for, and you are all on it as you make requests. I just don't repeat them all here. Thank you for caring for me the same. This site has been a blessing. God bless you all.
Chris
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Faith, When are you leaving for Italy? What parts of the country will you see? I have never been, but I have seen beautiful pictures and heard wonderful stories from others who have gone. I looking forward to your photos and reports.
Chris, I'm sorry to hear that you have a headache from your Zometa infusion. Many people take Advil or Tylenol or both in addition to the Claritin the day of their treatment, and it seems to help them. I hope the headache is gone soon.
Nkb, I am glad that your Zometa infusion did not cause as many SEs this time. Is your GFR usually a bit low (below 60) or was it just this time? I am sure that it seemed like you were standing for a lot longer than two minutes for those injections. My nurse is pretty good at giving them, but I still don't look forward to it. I remind myself that faslodex is helping to keep me alive, so it's not so bad. I do recall that someone on one of these threads once said that she decided to lie down rather than stand up during the injections. She found it easier. I have never tried that.
Hugs and prayers, Lynne
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50sgirl- my GFR was always > 60. the last time it was >60 was on 8/16 (I had been getting Zometa every 6 months to try to prevent bone mets for the previous 3 years so they did GFRs) Then suddenly in May 2017 it was 60, then 53,56,54. My creatinine is still normal, although higher than in the past. This is the first time they gave me a lower dose (3.5 instead of 4). I still think that even with the lower dose the slower infusion was a good idea. I am not taking any other kidney toxins, so I guess it is all Zometa.
I will keep standing for 2 minutes (each side) to prevent those painful lumps! Can't wait for a good oral SERD to be approved -they are doing a trial with one now.
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Faith...I will be living vicariously enjoying your pictures and hearing of your trip to Italy. Everyone I know who has been there has raved about the beauty and history.
Chris...Glad your Zometa infusion was not too horrible. I agree, this site is such a blessing to all of us. I haven't been able to get another infusion due to my creatinine level. I know it's important and hope I can start getting it before too long. I do take Calcium with D3, but doubt that's enough to strengthen these old bones.
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I had my second Faslodex IM's Tuesday and by the same GP I used last time and this will be the last time. It is hard to find a GP in Canada and this was walk in to start with but he said he would accept me as a patient. Both times for Faslodex injections and neither time did he ask what was wrong with me nor did ask any questions about my medical history. I can accept not knowing about Ibrance and Faslodex but he did not really care what they are nor did he look them up after he first visit. Money making. Also I suggested he warm up the syringes as I had heard it was not so hard to push it in. Both times were painful and two days later my hips really hurt. Not going back and am cancelling my next appt. in 12 days for next injections. Honestly, it was scary~~as though I don't have enough to worry about. My husband was with me (not for the IM's) and agrees with me on something not right and he mentioned it to our MO yesterday. I will ask at BCCA tomorrow when I see my RO, if a nurse there can do the IM's. Otherwise, I am looking for another doctor.
28 years ago I had to do some IM's myself. I was pregnant through an IVF program in Singapore but lived in Sumatra. That drug was also viscous and not easy to administer but not as bad as these ones. The night before the transfer in a hotel in Singapore I also had to do an IM. My 3 year old daughter was with me but asleep and my husband was enroute from Indonesia. I must have hit a nerve because I could hardly walk the next day. Happy ending though~~my husband arrived in time to produce sperm for the follicles and 5 were implanted. A few weeks later I was pregnant and happily with only one.
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Some more positive Ibrance news...
ESMO: Pfizer boosts Ibrance's class with positive neutropenia data
by Carly Helfand |
Sep 13, 2017 10:41am
New data show neutropenia associated with CDK 4/6 use is "absolutely manageable," according to Pfizer.
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MADRID—Pfizer this week got some good Ibrance news, and it's news that could benefit the med's expanding class, too.
A subanalysis from the drug giant's PALOMA-2 trial, presented at the European Society for Medical Oncology annual meeting, showed that neutropenia—observed in 95.3% of the HR+, HER2- breast cancer patients enrolled in the study—is "absolutely manageable," as Massimo Corsaro, Pfizer's European senior medical director of oncology, put it in an interview.
While neutropenia is associated with an increased risk of infection, results showed that just 3.5% of Ibrance patients with neutropenia developed grade 3 or 4 infections. And only 1.8% of that group developed febrile neutropenia, a more serious condition.
RELATED: With Novartis' Kisqali, Pfizer faces its first in-class threat for Ibrance
Results also showed that reducing dosage to treat patients' neutropenia didn't "compromise the efficacy" of Ibrance. "The benefit of the drug will be maintained even after adjusting the drug," Corsaro said.
And the way he sees it, that's a win for all CDK 4/6 inhibitors, a group comprising Ibrance along with Novartis' Kisqali and Eli Lilly candidate abemaciclib.
The data "confirm that this class of drug is still working in a very fantastic way for the benefit of the patient," he noted. And combining them with strong results abemaciclib posted over the weekend, "now we have even more certainty that this class of drug works not just by chance or coincidence," he said. "Really the new data that are coming at this congress are really supporting what we already showed" with Ibrance.
RELATED: ASCO: Lilly's abemaciclib vs. Pfizer's Ibrance? Too early to make a call, analysts say
That's not to say the meds don't have different safety profiles. Kisqali comes along with some recommended ECG monitoring thanks to mild cardiac arrhythmias and one sudden death that appeared in trials. Abemaciclib, meanwhile, has produced high rates of diarrhea.
Both Novartis and Lilly say those issues are easy to manage; but while that may be the case, it'll be hard to touch Ibrance thanks to a big first-to-market advantage. The med already boasted blockbuster status when Kisqali hit the scene in March, and Lilly is expecting its approval to arrive in the coming months after nabbing an FDA priority review in July.
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Marianeelizabeth- that is unacceptable. Injections should be room temperature and injected very slowly- pushing them in hurts and leaves big painful lumps that last for months. I have an article with details and pictures about how to inject it - I will try to PM it to you if I can figure out how. You can show this article to the nurse you find to inject it.
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Hi everyone, I'd love to get some input from anyone who has had to go down from the 125mgm tablet of Ibrance to the 100mgm tablet because of Grade 4 Neutropenia. I've always had to have a two week break from Ibrance because my neutrophils would hover around 0.6 after the first week's break but this time it was 0.46 and I'm told that that automatically means you go down to a lower dose. I have two questions: one, has anyone who has done this after needing a two week break when they were on the 125mgm dose found that they no longer need that extra week's break...i.e. they go onto a four week cycle instead of needing a five week cycle and my second question is does anyone know whether having a lower dose means less achievement in terms of regression. So far my disease is described as stable. Scans have shown no regression but no progression either.
I guess I'm wondering whether my neutropenia will improve, meaning I'll only need a one week break, mainly, as I wonder whether having a two week break is the reason my disease is static. I've just completed cycle seven.
After I posted this I noticed PatGMc's post re Ibrance/neutropenia/drug dose change,........much appreciated.
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Leapfrog, My neutrophil count went down to 0.4 during my first cycle, and my dose was reduced to 100 mg as soon as my counts were high enough. That took almost 4 weeks. I have been on 100 mg since last October, and there have been a few times that I needed a two week break, but not every cycle. If that were the case, my MO would recommend lowering to 75. Data seems to show that the lower dose of Ibrance is just as effective as the higher dose. I had scans in June, and my liver mets are reduced in size, and for the first time since dx, scans showed improvement in bone mets, so I think that confirms the fact that the 100 mg can result in regression. It usually takes a while to see improvement, particularly in the bones, so being stable, as you are, is good. Many others here have had the dose lowered and not had any need for a two week break, btw. I hope this info helps.
Lynne
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Hi Leapfrog- I started at the 125mg dose-after 2 weeks I was .585, they waited one week- I was .78 and they waited another week and I was 1.6 so I restarted at the 100 mg dose. I still had to wait 2 weeks with that dose to get to .1. I just finished cycle 3 (# 2 with 100 mg) and will see what my neutrophils are on Sunday. I fully expect to have to wait another week. I asked my MO re the 3 weeks on and 2 weeks off and she wasn't concerned at all. Supposedly there is little difference in efficacy between 125 mg and 100 mg and someone said that their MO no longer uses 125 mg dose with anyone. Someone else said their ANC bounced all over the place. The 100 mg is working well for me.
The Palbociclib literature does say that if you are grade 4 (<.5) neutropenia you need to lower dose.
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Hi Lynne, it does. Thanks very much.
Would you mind if I asked you another question, which is a bit personal? I'm sorry to notice that your mets are in bones and liver but a question that plagues me about mets to bones as well as to organs is whether the mets were first found in the bones or the organ or whether in both around the same time. I apologise that I'm touching on sensitive ground and that my question is somewhat naive.
Hugs xxx
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Nkb, wish I had had that article first go! But glad now and hope no permanent damage. Thanks.
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Leapfrog, Your question doesn't bother me at all. This site is a place to share information. I was originally diagnosed stage IV de novo, and I had extensive bone mets. After a year on Arimidex, during which I saw improvement at first (CA 27.29 went from 927 to 141), Arimidex failed. My TMs suddenly went up again, and scans showed progression in bones and 3 areas of mets in my liver. I was shocked and scared. I was put on Ibrance and faslodex, and my response has been amazing. I want to stress several things so that you don't worry too much. First, remember that many people have bone-only mets for many, many years without seeing progression to other organs. Some even see NED. You could very well be one of them. Second, although I thought that getting liver mets meant I was more vulnerable and would go downhill quickly, I was wrong. Many people, including me, have seen substantial improvement in liver mets. Some are NED. There are many treatments available. A year ago I had 3 areas of mets in my liver. They were between 1.2 and 2.1 cm. Now scans show only one "indeterminate" are athat is only 11 mm. I feel great, and I expect to live a long time.
Let me know if you have any other questions.
Hugs from, Lynne
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Leapfrog, I assume I had bone mets before lung mets, but it wasn't found until I got a pleural effusion. So the lung mets were a bigger problem since it affected my breathing. How long? Don't know since mine are all sclerotic, although the RO says they are all over my skeleton.
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Leapfrog, your question is a good one and we are all learning. I was dxd with breast cancer although the cancer was found de novo in the lymph nodes under my left arm with additional extensive bone and liver mets but no tumors in the breasts. My mets tumors are now resolved but my lymph nodes are still active. Because of the types of markers and the fact the tumors are positive for both estrogen and progesterone, it was labeled and treated as breast cancer.
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This week's The Economist magazine (sept 16-22, 2017) has a very interesting 12 page section about Targeting Tumors-treating cancer. I only get the print version so can't link it-but, you can buy it or get it out of the library. It is a nice review of all the new treatments and ideas for future treatments out there. It is nice to have this background going forward.
Average monthly cost of cancer drugs in 2014 in the US- >$10,000.
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Just wondering if anyone knows if it's okay to take sleeping tablets with ibrance/faslodex? I'm on my 6 cycle. I had the usual problems with low neutrophils to start but all going fine now on 125. Major fatigue too has eased. Just cannot get a proper night's sleep. Can only get 3 to 4 hours a time. Wake at 3am every night. Am always very tired going to bed but doesn't matter I'm still wide awake. Usually then fall into a deep sleep at 6am but have to get up at 7am to get my son organised for school. It's really exhausting me. When I have a bad nights sleep my pain levels are worse. I would have to go to my GP for sleeping tablets but worried they might interfere with my ibrance and she is not going to know this.
A good friend suggested I should try running 5k in the evenings. I'm actually still laughing! Have mets in hips, femur and spine. I'm 41 with young son and keep active but I know my limits! Anyone else in the wide awake club? Or what working for you and sleep problems.
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Lillymillie, I have the exact same sleep issue (even with the 3am, 6am, 7am routine lol). I noticed a big difference switching my meds to the morning. My MO was fine with me taking a big dose of melatonin with the regime. Was also fine with occasional sleep meds (Benadryl was preferred) but not with anything really strong. I didn't push hard though so hoping others have more to s
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Thanks Jen, i do take my ibrance with my evening meal...I thought this helped with my fatigue but not much point if I'm not sleeping well! Thats good to know you onc's thoughts on it too. I'll see how a time change works this cycle and maybe increase my steps a bit too if the rain ever stops here!
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I called my specialty pharmacy (as is recommended when taking anything new, whether prescription or over the counter) about sleeping pills (I'm away on vacation and can't check the brand name) and they were approved by Pfizer for use with Ibrance. I almost never take one, but it's good to know that it's okay if needed. You may want to check with your Ibrance providing specialty pharmacy, Lillymillie.
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Nkb-
Found a link to the Economist article....thank you!!
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Happy Sunday...
Lynn...Your post to Leapfrog was very encouraging! I agree, we are learning something new every day on this board and unless the questions are asked -- how are we to know?
Lillymillie...I take .05 mg. of Ativan about an hour before I plan to go to bed, which is usally around 11:00 pm. I will sleep until 6:00 am....a good 7 hours. You wouldn't think this low dose would help much, but I am a very anxious person and I tend to do my "thinking and worrying" when I go to bed at night. So...this has worked wonders for me.
Wishing all a very good day!
Hope
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I have just finished my 9th cycle of Ibrance/Faslodex still on 125 mg. Has anyone else experienced very sensitive /easy to blister skin on their feet and turning red similar to hand/foot syndrome. I had that with only my feet affected during AC chemo, and I've had to be very careful of my feet/shoes every since then. The last week & 1/2 I've been getting blisters whenever walking much even though I'm in good shoes with good cushion/support/etc. I know it could just be a fluke, but also know that Ibrance can bring weird side effects even months into treatment.
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Lillymillie - I have been taking ambien. The doctors are fine with that. If you want to try natural methods, there is melatonin. You would probably want the time release kind, so you don't wake up at 3am. Mo is fine with that also. There is also cbd oil made with hemp. Legal in all states. Mo has no problem with that either.
I have been following this thread for awhile. I'm on cycle 25 and we are going on a horseback riding trip in Oct with our horses. When I asked for time off Ibrance, to be less fatigued on our trip, I only got a week. I see so many of you taking a month or more and I wondered how you got your Mo's to agree. I want a month off, 2 weeks before to get stronger, then 2 weeks during trip so I can ride everyday. I'm wondering if I should just tell him that's what I am going to do. Any thoughts would be appreciated.
Hugs and prayers everyone
Claudia
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