Ibrance (Palbociclib)
Comments
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I need to ask for your advice today: As I already wrote, I caught some kind of infection. My general practitioner thinks it is a UTI only, because the urine sticks were positive for nitrite. I rather think that the main issue is a virus, because after 3 days of antibiotics and basically sleeping all day long, I still feel extremely tired and exhausted. My bloodwork showed an ANC of .64 on the morning of d13 of my Ibrance cycle (usually, it is about 1.8 at that time in the cycle). I called the hospital to ask how to proceed, the nurse told me to keep going with the Ibrance. When I asked her if I should do additional bloodwork, she was like "well, if you like to, you may have additional testing done". My general practitioner did not contact me to tell me the bad ANC results, I had to asked them, although they called me in earlier cycles for much less reason. Today, I asked their nurse for getting bloodwork done next wednesday (d20). Being back at home and thinking about this whole topic, I feel very uneasy about it. I already have quite low ANC, I have an infection, I have 2 kids aged 5 and 7 (who do not pay much attention to avoiding germs), and I need to take Ibrance for 9 more days from the last bloodworks. Isn't it very likely that my ANC will drop way below 0.5? Shouldn't my MO or the general practitioner care about this? Shouldn't there be some more bloodwork testing between d13 and d20, if they want me to continue with Ibrance albeit the poor ANC? I do not want to end up in hospital with a severe infection, because nobody really cared...
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Oh!! CVS just called to tell me they're shipping 125 mg Ibrance -- am I going to lose my hair AGAIN?!?
DAMMIT!
What else? indigestion, fatigue, trouble sleeping.........what other side effects am I looking at?
thanks,
Kathy0 -
Peculiargirl: Losing your hair is not a given on Ibrance. I was already losing mine from 3 months of chemo when they realized that chemo wasn't working. Then, they moved me to Ibrance/Letrozole combo and the hair loss didn't stop. I was hoping to have avoided losing my hair again too. My doc keeps telling me he doesn't think I will lose it all, but my hairbrush has a different opinion on the matter. I will say this. So far Ibrance has been a walk in the park compared to chemo. There's fatigue, reflux pain, and night sweats, but nothing that is truly disruptive to my life. I wouldn't worry too much. They sent home a list of possible side effects and I nearly fainted. Luckily, most of us seem to only deal with a few here and there. The real issue is the blood counts, and being able to stay on the cycle. Take it with food and at the same time of day.
NettaGER: Don't ignore your gut if it's telling you to get more information because you aren't getting better. Our doctors mean well, but they have a lot of patients, and they don't know us as well as we know ourselves. I have learned that lesson enough times over the years, to finally give myself permission to be an annoying patient sometimes and insist on something when my instincts are screaming at me. In the end, I'm either right or at the very least feel better for ruling out whatever it is I was worried about. The hospital said you could get additional blood work if you'd like to, so I'd take them up on that. It might be that you just need to be on a different antibiotic. If it's a UTI and you are on antibiotics, you should be feeling better by now. If you aren't getting better, just take yourself back into see the doc.
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Grannax, I think we just have to follow our instincts. Physicians are required to practice evidence-based medicine. Their malpractice insurance requires it and, frustrating as it is for them, our health insurers do too. Maybe you could make a wish on those tiny AIs as you send them on their way!
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Ibrance has just been recommended for government subsidisation in Australia. It's just a matter of the manufacturer and the government agreeing on a price which will probably be AUD40.00 per month (about parity in the US
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Netta, I have been concerned about you since you reported that you had a fever. My oncologist's rule is that his patients should call his office immediately if the temperature reaches 100.2. It is not unusual for cancer patients here to be sent to the emergency room for evaluation with temperatures of 100.2 or above. The reason is that an infection can quickly overwhelm someone who has a compromised immune system. That is not to say that everyone with a fever develops serious complications. It is a precautionary action to go to have a series of blood tests to determine the source of the fever and take the steps to combat it if, necessary. I am concerned that after taking antibiotics for a suspected UTI, you are feeling worse, not better. Having additional blood work will either identify the problem or rule it out and give you piece of mind. Please go for additional tests and don't wait till Wednesday.
Hugs and prayers from, Lynne
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Netta, I agree with 50sgirl. You might need blood cultures, too. Do not wait.
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NettaGer I agree with your concerns about continuing Ibrance with an already low ANC. They had me stop when I went below 1.0 and were real concerned the time I got under .5. I don’t have any young children around and didn’t have a fever or infection which are additional concerns for you.
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Netta.....I agree with 50sgirl. I'd follow her advice. I go below 0.5 by the end of every cycle and when I was still 0.5 after one week's break I was classified as having Grade 4 neutropenia and my dose was dropped from 125mg to 100mg. However....I wasn't sick and you are. I would definitely want it looked into if I were still as unwell as you are. I've also been told to report straight to the ER if my temp goes up to 38 degrees centigrade (I'm in Australia) and it's been emphasised over and over that if I feel at all unwell to follow that rule implicitly. If you have to be an annoying patient and they don't like it, so be it. You have your life and your little kids to think of.
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Kathy. You are unlikely to go bald but your hair ma thin a bit. Mine didn’t so some people report thinning. The heartburn can be painful. Most people find relief with over the counter treatments but prescription meds are available. Fatigue is not as severe as on chemo but it’s real. I am on cycle 10, and fatigue is my only side effect.
Best of luck
Hobbes
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Kathy, I am on cycle 23 and my hair has thinned, but I am not bald. I have a little more fatigue than usual this week, but it could be for any number of reasons. This thing will always be with you, but you are alive and there are many of us here pulling for you. Everyone has a different combination of side effects, but I have found lots of support how to deal with them. We all wish you the best journey.
Chris
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I have a question. I was told I could not get dental work while on Ibrance. I have a horrific fear of the dentist, (long, horrible story) but have been doing well the last few years. Until now. My teeth are suddenly getting a little sensitive. I fear I need to go see the dentist. Any words of wisdom? And yes, I will discuss this with my onc first.
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Intolight, I was told dental problems were not a "thing" from Ibrance but can come from the bone drugs many of us take. I would get a dental check-up and you'ill probably have your mind eased. I hurt so much for people who dread the dentist. My husband had childhood trauma from a dentist and went through most of his adult life avoiding check-ups. He ended up with his teeth in a real mess. Last year we found a dentist who does conscious sedation and hubby had crowns put on almost every tooth. It was the price of a car but he's so very happy!
Netta, I hope you plan on getting to the doctor or the ER. I avoided going this past winter and got terribly sick. It took a long time to recover but I was stubborn and refused to go. Please go and take care of yourself. I'll be here praying.
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Thank you all for your replies.
This post was a rant pertaining to Ibrance: "If they can give the drug away to some people, why can't they make it at least affordable for all?"
I got a message from the moderators about this message, that is was reported, so I am deleting it.
ALSO, VERY IMPORTANT: I need to apologize to the Stage IV forum members. I didn't realize I was in this forum. I purposely even avoid reading this forum. I know to stay out. PLEASE forgive me if you can.
Thank you.
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Netta, go to the ER or at least to the doctor. We need you among us! Please let us know what's going on.
I had the PET scan yesterday. Who knew that you could start itching in so many places when they tell you to hold absolutely still for 25 minutes?? I'm not typically an "itchy" person, but I was in full overdrive during that test. Nose, ear, eye, toe....you name it..it was itching! And then my elbow started to hurt from being on the side rail. There's not a thing wrong with my elbow, but it had to start hurting right THEN, and I couldn't move it. And swallowing surreptitiously while trying not to move a muscle. Mind over matter...mind over matter...think of something else....think of England (who said that??)....
In any case, it is done, and the technicians were lovely. My "stealth" radiologist (a dear friend) had me have them burn a copy of the films right after the test, and I raced the disc over to his office. Unfortunately, for some reason they didn't include all of the images, but he said that what they did include appeared to show no change since January's CT scans. HOORAY!! I won't get the full reading until Tuesday with my "real" onc, but I'm celebrating prematurely and assuming the best on Tuesday.
Hugs to all....good luck on Monday, Sharlene and Ashlyn, and Janky, on Wednesday! What would we do without our friends here?
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A very interesting article in the WSJ about cancer and advertising. I don't know whether this link will open for you or not. My husband sent it to me, and he is a subscriber, so it opened.
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Thanks everyone for your input! I called the weekend-hotline of the hospital today and told them about my concerns. They told me to go there immediately, if I develop any signs of infection apart from being tired and weak, e.g. cough, fever, pain when using the toilet. In any case, I shall go there on monday to get bloodwork done. I am completely ok with that. Meanwhile, I will continue sleeping ... (my dh woke me up at 8.30 h this morning, I had breakfast and a phone call with my parents, then slept from 11.00 to 12.30, now at 2.30 p.m. I feel like going to bed again...)
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Intolight....I was told the bone drugs (Zometa, X-Geva) can interfere with teeth and dental work. I haven't been in a year, but no major problems at this time.
Lynn...Doing a happy dance with you!! Wonderful news.
Hope
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MO- Beth...not sure what your post is about? Are you taking Ibrance? Are you stage four?
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IntoLight, I get my teeth cleaned and a check up every six months and x-rays once a year. My dentist had done two root canals and one extraction before cancer. Because of X-geva (or any other drug in that class), he said he would not do another root canal or extraction on me but would find a dentist who would. I think the sensitivity is pretty common with Ibrance. I've had it off and on.
Joyner, great news. I wish I had a stealth person in my corner. Thanks for the article. Interesting. Pat brought up a point with me about the cost issue. We don't get so upset about expensive cars, etc. but drugs? We go nuts. Car companies bombard us with ads but when cancer centers do it? Yup, different. Should be different. But maybe the universe is telling us, no, not different. Hard to accept but we may be there.
MO-Beth, I'm in the same situation as you are with no debt, etc. but I DO qualify for assistance with Ibrance. You would, too. You have just not encountered a drug this expensive before and I hope you never do. (The income requirements for assistance are very liberal.) Pfizer gives Ibrance for free to those with no insurance. They support foundations that pay co-pays for people with insurance. If you have insurance but do not qualify for foundation assistance, Pfizer still provides it for free. Most of the money they make from Ibrance comes from insurance companies, who you better put in the evil category along with drug companies. They are all just trying to make a profit. Some are better at it than others.
Netta, very worried about you. Hope things improve soon. Good/bad to hear doctors in Germany drop the ball, too. I thought it was just here.
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I have had dental work, but my dentist also won’t do root canals or anything invasive, but would send me to someone more experienced. I have to have a small filling in fact on May 8, under the edge of a crown. So the onc held my XGeva this month
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Hi Netta, hope this virus or infection clears out very soon. I can’t tell from reading through the thread this morning (during my first cup of coffee) if you have paused taking the Ibrance. If not, that is something to consider until your fever breaks
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Sorry just reading back through. My onc also says check into the ER for fever over 100.4
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I understand how frustrating it is to hear $10,000 a month (my insurance company actually pays $11,029.97/mo), but the way I look at it - this drug is keeping me healthy, and is therefore worth it. It also helps to know that my insurance company's payment is also paying for Ibrance for other people who don't have insurance, or who don't have insurance that pays enough. Therefore, even more worth it.
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Joyner so happy to read that from what you could see things looked good! I’ll be getting my results Tuesday too. Getting more anxious as the day nears.
Netta I hope that whatever you’ve got clears fast for you. Sounds worrisome but hope after some sleep and fluids you will start feeling better. Drink tons of water! If it were me I would try to see someone sooner if fever persists.
Happy weekend all! Xo
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I've been on Ibrance, Letrozole and Xgeva for the past 18 months and was just diagnosed with ONJ - a side effect of Xgeva. If I had it to do over again, I'm not sure that I would agree to using Xgeva or at the very least, to cut down in the rusk, I would only get the shit every three months. I have a long road ahead of me and a ton more dental expense and pain from Xgeva. MO has stopped the Xgeva and wants me to go on faslodex. That too carries some potentially serious side effects. I already have compromised vascular issues in my legs and the risk of blood clots and nerve damage from faslodex is absolutely terrifying. I urge anyone if Xgeva to consider cutting back to every other month or every three months to lessen the ONJ risk. Hope everyone's scan results come back with amazing results.0
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sorry I’m mad enough about having stage four cancer without having someone come on to the site and try to stir up anger over the cost of the drug that is keeping me alive because I’m dying from cancer !!!!
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I am adding one additional piece of information about Xgeva and Zometa that we haven't mentioned here lately (so newbies are aware). Because of the risk of ONJ, before you have you first dose of Xgeva or Zometa, go to your dentist and make sure all your dental work is up to date. If you need a root canal, extraction, or deep scaling, or any other major procedure in your teeth or gums, have it done before you start Xgeva or Zometa. Your MO should insist on that, but I know that some do not mention it. Once you begin Xgeva or Zometa, make sure your dentist is aware that you get it.
Lynne
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There are other drugs in the category called bisphosphonates that can cause ONJ. My dentist doesn't like any of them. I went to Xgeva every three months for just that reason. Zometa is a bisphosphonate. Xgeva and Prolia are anti-RANKL, a newer anti-osteoporosis class of drugs. Both can cause ONJ. The only comment my former nasty MO made about ONJ was about another patient of his. He said, disdainfully as usual, "her dentist THINKS she has ONJ," assuming her dentist was wrong. Maybe her dentist was right.
I'm so sorry you are dealing with this, Cheryl. From what I have read, it sounds horrendous.
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Thanks everyone for your concerns! My fever is finally gone and I feel slightly better. I just hope that I will not pick up some other germs while having this low ANC. I am not off Ibrance, because the Onc nurse in the hospital told me to stay on it. We will see how things will evolve..
I need to add a comment to the Ibrance pricing debate. I work in big pharma myself (but not Pfizer). The thing is: this is capitalism. They are first on market with a CDK4/6 inhibitor and they hold the patent. The docs prescribe it presumably much better than it was anticipated. And the US health insurance system is vulnerable to high pharma pricing. On the other hand this is the reason why you guys have access to a lot of clinical trials and get the meds approved earlier (because all pharma companies first try to have US market entry, because they earn most money there). For comparison: we do not have Abemaciclib approval in Europe yet, but Ibrance pricing is much lower (I think about 2700 Euro per pack) because of different kind of price negotiations of the health insurances (and we have a fixed co-pay of 10 Euro in Germany). What is better, if you are suffering from mbc? And one last thing not to be forgotten: pharma industry has to also make up for all research and development which does not lead to a successful med. And lately, the call for more personalized meds makes it even harder to earn money, because more personalized means less people taking the med, but R&D costs stay the same. There is also a lot of pressure on production costs and headcounts, I can tell you from my own experience.
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