Ibrance (Palbociclib)
Comments
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Jaycee, PAF and PAN have both turned me down as has Pfizer. My oncologist's nurse is working on it today but not looking good. It's a little hard not to be anxious until I know.
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Pat, my Dr just pulled me off of Prilosec and put me on Pepcid AC. She told me it might take a week for it to work well. It was rough at first but is improving. She also told me I can take Tums in the meantime and they help.
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IntoLight, I tried Prilosec when I was on Femara alone. It worked for a little while and then made things worse. I'm really thankful the Pepcid AC works so well and I hope it does for you. I take it a few hours after dinner. Good luck!
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Pat, when do you take your Ibrance? I take mine with dinner.
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IntoLight, I take it with dinner too. That's the only way I can remember it!
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PatgMc - Have you tried PAF (Patient Advocate Foundation) Co-pay Relief? This is who has given me my grant for the first few months this year and when that runs out I'll have to go back to Pfizer's PAP.
The patient navigator at my MO's office helped with the paperwork.
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I'm feeling fortunate to have had to pay $0 for copays for Ibrance for 12 months! My insurance does cover it but my co pay was going to be $5,300 a month. Ouch. I've had two different Foundations that have paid my co pays, I don't remember their names. My specialty pharmacy is Avella. They are in Austin, Tx., that who my MO uses. For my first month they asked me a few questions about income to see if I would qualify. I did because I live on SS. From then on it has not been a problem. I just ordered my 13th bottle with $0 co pay. One time last year there was a problem with getting it n time, so MO gave me a sample bottle.
I certainly did not plan on living alone on only SS and having MBC, but I am now thankful to have a low enough income to qualify for help from Foundation.
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Grannax, that $5300 would only be for then first month. Then you would fall through the donut hole and it would be substantially less, like around $500. That's not affordable either, I know.
I wonder if all MO's get samples. They would probably be 125 mg though and not help Pat. My MO has a supply in his office that has been donated by patients who no longer take it. That might be various doses.
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My inc office gave me a 100mg bottle once.
Tanya
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Jaycee. Yes, they told me co pay would go down. The foundation kept paying and I never had to go through the donut hole even with my local pharmacy for my other meds. I don't understand how that happened but glad it did. I'm waiting to see what happens this year in regard to donut hole.
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Hello everyone,
I just returned from my staging today. The results are somewhat ambiguous:
- CA 15-3 increased again to 174 (was 38 - 149 - 161). CEA decreased further to 3.2 (was something like 3.9 - 4.7 - 3.6 ).
- The primary tumor in my breast shrunk to 1/7 of its original size at dx within 5 months. The MO could almost not find it by ultrasound any morr. Yeah!
- Bone mets show no changes in the CT.
- Lung, liver, etc are still free from mets. Yeah!
The docs with stick to my current medication being Ibrance, Letrozole, Leuproreline and Zometa. That it fine with me. I am still not completely convinced of the Letrozole alone during the Ibrance breaks, but the MO told me that the SEs of Fulvestrant would be stronger and that they would only switch to it after progression.
I would really throw a party if only the CA 15-3 was different. This increase leaves me with the anxiety, that there might be something growing which we just do not see yet...
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good news. My onc just called to say that my bone and CT scans show decreasing size of the Mets. My neutrophils ere also good ( for me) at 1.4. Just finishing cycle 8 of Ibrance.
Jo
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NettaGER, I'm so happy about your good news! Try not to fret about those tumor markers as they are often not a good indicator. I worked with cancer survivors in a support center for a couple of decades and I can't tell you how many people I've known who rode a roller coaster of up and down tumor markers. the fact that you had a tumor shrink so much indicates that your meds are working. I'd take that to the bank and wait for even more good news as the months pass. I'm going to pray that happens for you!
Friends, thanks for your concern about my lack of co-pay assistance. I haven't heard anything but I'm holding onto the hope that Pfizer will put me back on their plan. During my first months I had a PAN co-pay grant and when that ran out, I got free Ibrance from Pfizer for a year. God has this!
I'm so happy and amazed to have spent the day out eating and shopping with my daughter and granddaughter. I was never fatigued and never nauseated. It's a beautiful thing and I wish it for all of you.
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So glad to hear that Ibrance is working for most of you. I only wish for the good news too when I go for that first scan.
Right now dealing with low neutrophil count. It was 0.8 at the end of the 3rd week of the first cycle. Then, 0.4 the week after, so had to delay the start of the next cycle. Now, it’s 0.9 after having the 2 week break. I think i definitely need to reduce the dosage to 100.
Do you think 0.9 is good enough to start the next cycle at the lower dosage? What happens during the cycle then, wouldn’t the count continue to drop which will force me to stop the meds? My thorat is now tinklely and looks like I may be coming down with the cough which is the worest due to the lung mets!
Hoping to find that sweet spot that works for me and the drug!
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My wife's onc routinely starts her cycle with neutrophils below 1.0. They are often at 0.5-0.6 and they give her the go ahead to restart ibrance.
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I’m on cycle 7 of Ibrance and in the middle of my 2nd week. Ive been feeling a bit congested in my head/ears and somewhat achy for a few days but no fever. It’s not like a cold and I don’t think severe enough to be this years flu. Could this be a side effect of Ibrance?0
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my neutrophils were 0.9 on Day 28 but due to a miscommunication, I started cycle 8 anyway. On day 14 my neutrophils were 1.4. Doesn’t seem to have harmed me.
I had the sorta kinda am I getting cold? Feeling for two weeks, then it morphed into real cold, but no fever. Cough cough splutter splutter. It’s gradually getting better
Jo
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Liwi, I did not run a fever with my last cold either. I doubt it is the ibrance as it is not a typical se. My onc wants me to call my PCP Dr with any respiratory infection and she usually has me come in anyway. Every time I was glad I did as I got something that helped before it got too bad. One time I had an ear infection although I did not know it. Better to be safe. I was told to go to the ER with any fever over 100.4. I have never had to as I got to the Dr before the virus got worse.
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I’m on the 4th cycle of ibrance+femara, it seems to work very slowly for me and my onc still wants me to wait for a few more cycles. I read many of you mention being stable after on ibrance for many cycles, some even mention >20 cycles. May I know stable mean in remission or the tumour not growing any bigger? As I’m in my early 40s, my onc does not recommend me to go for surgery now and just ask me to sit tight on ibrance+femara, I’m not sure if I should just go for surgery instead of leaving the cancer cells in my body while hoping ibrance to work..
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Hopeful: Ibrance can take several cycles before you see much progress. Mastectomy is major surgery and may carry a risk of spreading the cancer. If you can be patient, it is probably better than having surgery. I understand the desire to get it OUT NOW but patience is less invasive. My understanding is that stable means that the tumour is not getting bigger. Stable is good, it’s like a tie in sports. Neither the disease or the drug are winning. Hopefully over time the drug will win.
Jo
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It may not be listed as a common SE, but for me a constant stuffy nose that turns into a sinus infection is definitely my SE of Ibrance. My MO agrees as I've had about five since I started I. My PCP suggested I take Mucinex every day to help keep mucus from getting so thick. It's helped but not eliminated the sinus infection. In fact, my MO was kind enough to call in antibiotics for me last Saturday. She knows me now. I've heard other ladies say it feels like a forever cold, too. It did for me.
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Hopeful, today, I will be taking my last Ibrance of cycle 22. If you include cycles when I took breaks from Ibrance, I have had 25 cycles of PFS. My MO did not do my first scan until after the 6th cycle. My lung tumors are stable and my shoulder met has "healed."
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Grannex: I've had runny nose since I started 10 cycles ago. No infections or stuffiness, just a constant, slow-drip faucet. I'll count my blessings. I'll take a run on Kleenex over antibiotics any day.
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Thanks Hobbes, IntoLight, Grannax and MidwestLaura for your responses Last cycle I did go to myPCP and got antibiotics for sinus infection . A couple of times before I thought I had a was getting a cold twice but really only turned into a full cold once. I also had this happen during my chemo in my original diagnosis so I’m thinking this may just be the way my body responds to these types of treatments. Grannax like you I am taking Mucinex. I’m hoping to not go to antibiotics this time but will if it gets worse.
We have plans for a trip to Hawaii in two weeks and I definitely don’t want to be sick for that.0 -
Thanks Hobbes and Jaycee for the reply. This site is really helpful to us who are lost and remind me to be patient. I went to see a surgeon and he says I’m still relatively young and my bone met is just at T7 and T12, so he thinks I will have a better chance with mastectomy to remove the 3cm tumour to get the cancer out..
May I ask if you are working? As I took time off from work for 8mths, hoping I could heal better by cooking my own meals and exercise, but it does not seem so. I’m thinking of going back to work to keep myself busy and not keep touching the tumour to see if it gets harder or larger by the second.. anyone else experienced cancer spreads faster with working? I know silly question but would just like to hear sth..
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hi hopeful77, I am also in my early 40s. I took some time off after I was diagnosed. I really needed the time to deal with my emotions and focus on healthy eating, exercising and mental healing. It’s been a few months now, and I am getting back to feeling “normal” again. However, it’s difficult to work full time, but I find it helpful to work just a few hours a day. It helps to keep my mind occupied. I know meditation and relaxation is known to help prevent disease progression. So I am trying to find that right balance.
WIth neutrophil count of 0.9, MO is holding off the drug for another week. So that’s 3 week break after the first cycle. Hope letrozole alone is doing its job in the meantime. Eager to start up again with Ibrance.
All of you have continued to be ofhuge support. Much appreiciated!
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Hopeful77 I am 69, so I was retired when re-diagnosed at stage 4. I was self employed when I was diagnosed at stage 2. I took 3 months off then around the diagnosis and surgery, then worked full time, except for six weeks when I was very ill with complications of chemo.
I still lead a very full life, serving on several committees, including one at the national level that required monthly travel across Canada, work out twice a week, paddle with a breast cancer dragon boat team, walk my dogs daily, babysit my granddaughter, etc. I have cancer but cancer doesn't have me.
Jo
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I posted on the 19th about using Ibrance 75mg EVERY OTHER day due to my ANC. From what I am reading from the current posts, most using Ibrance hover around 1.0 and still continue med. Some was less than 1.0. Am I correct?
I wanted to continue 75mg every day and see what happens but my MO said that would be too dangerous for me ( his words). Has anyone heard how effective every other day dosing is? Should I INSIST on using every day? I don't know how that would go over with my MO...haha. He writes the scripts.
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Candy, I am in my 18th cycle and have been on 125 continuously. My ANC hovers around 1.0 and sometimes has fallen to .8. My oncologist has never proposed stopping or lowering my dose. I have not been seriously ill in all this time. I can't explain it scientifically but I think the theory is that our white blood cells are "hiding" and not as low as they seem to be on the tests. Someone else could pipe in and explain it better. I was grossly metastatic at the start of my treatment so I am glad to stay on the high dose of Ibrance for as long as it works. Since you are in Illinois it might be easy to get a second opinion on this.
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My ANC hovers around 1.0 but always above. Last month, it was 1.01. There are too many possible dosing/schedule varieties for a specific one to have any efficacy data. My MO was using 75 mg, two weeks on, one off for one patient. (My nurse told me about her.) Maybe try the every other day for a cycle and see what happens. My doctors need major ego stroking and doing what they want for a while seems to accomplish that. Then, they may let you do what you want. This method has worked for me. Maybe let him know that you heard there is not a big problem with infections with Ibrance.
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