Ibrance (Palbociclib)
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Thank you Tanya and MC!
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Chicagoan, great news ! What a relief . I agree that on Ibrance it's been easy for me to tolerate as well . Onward !
Brutersmom- I'm sorry you are getting sinus infections . If the laryngitis persists have it checked out . I had that from my enlarged superclavical lymph node pressing on my laryngeal nerve . i started treatment and it eventually went away but it was scary .
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Chicagoan glad to hear your liver issues have resolved.
I met with my new oncologist today. He answered a lot of my questions that my previous Dr. answered, but not clearly. We discussed switching meds because of neutrophils. I asked for alternate dosing because my neutrophils drop to low grade 3 or maybe high grade 4 at the end of 3 weeks. I am stopping ibrance until after knee surgery. The timing of surgery requires to be off until 2 weeks after surgery because of my low neutrophils and the risk of infection. We did agree to trying 2 weeks on and hopefully one week off. I asked about the study that is currently being do 5 on 2 off and he never heard of it. I get the feeling he will be doing some research between now and when I return from surgery.
I am not sure how I feel about this new MO. I did like how he answered my questions. He did rdo a better job explaining my last catscan in a way both my daughter and I could understand. He is young and he is new. I guess I will give him some time.
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Chicagoan, that's great to be on cycle 92!
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Irishlove. The final diagnosis is occular hypertension. There is no damage to my optic nerve or my peripheral vision. My numbers are 22 and 26. Since he said it was ocular hypertension I asked him again about the fact my blood pressure has been running high and my pcp does seems to want to address it. I ask about letrozol because I read that lack of estrogen can influence occular pressure just like blood pressure. I have also read that stress can influence occular pressure and he said he never heard of any of those things. I just looked at him and almost lost it. I said my blood pressure has been high since Janary. I was told I was going to die in three months by a dr who shouldn't have said that. I am in constant pain with my knee when walking or standing. I take hormone blocking meds and effexor that can possibly cause glaucoma to stay on hormone blockers. And then there is my husband that has had two major illnesses this year and one that may be a stroke and caused deafness in one ear. My stress levels are high. What the heck, I think he needs to do some research. Instead he asks me to see if i could get records from 2006 when I had cataract surgery. 😳 Thanks for letting me vent. I feel like I need all new Dr's. Except for the knee surgeon.
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@brutersmom Like you, I'm convinced estrogen blockers wreck havoc all over our bodies. My neuro thinks so, too. His wife had a total mental breakdown from Tamoxafin. I question how let's say a 200 lb woman can be on the same dosage of an AI as a 100lb woman. I recall doing chemo drug, Novantrone, for MS and it was based on body weight. Whatever the reason for those high numbers, I hope they get them under control quickly. Also, I wanted to say I'm thinking of you and your husband and hope he heals. That is a lot of stress to deal with.
Laurel
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Irishlove I agree with you about the hormone blockers. I basically had a breakdown on the the first time around. I wanted to hurt people and then I wanted to commit suicide. I would just sit and cry. Stopped it and became my old self. This time around they gave me effexor when the symptoms started again.
I see a nurse practitioner for my presurgery clearances and I am going to talk to here. It has been way to high for too long. I think after the knee surgery I am going to see about scheduling an appointment with an opthomalogist since he is not seeing me again until next year.
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Hi all, hope you are doing ok.
Brutersmom - I am sure you are counting down the days until your knee surgery!
I just had my scans this week and they are all clear/no evidence of active disease. I am very relieved as you can all relate to as we just never know. I will see my oncologist on Monday for a visit as well as fulestrant injections and blood work to check my neutrophils in order to start cycle 50 of Ibrance.
It took my cancer center 4 days to process the scans which is the longest I've had to wait. I now feel like I can make some plans for the next 4 months…..onward!
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Great news Aprilgirl! But waiting 4 days for scan results-that would have made me nervous. Enjoy planning some fun things for the months ahead!
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Aprilgirl1. Thank you. Hard to believe you waited 4 days for a scan. I am glad they are good. I can't imagine the stress of the waiting.
Yes I am counting the days. I just had preadmision labs and ekg. Monday is the physical. The end of the week is my visit with the preadmission nurse and the palative care Dr. Normally I would hate these visits but right now it means I am one step closer to less pain. I went and bought a swirly purple cane today. My knee has become so painful when I do a lot of walking.
I hope everyone is finishing up getting ready for the holidays. Hard to believe Christmas is only 10 days away.
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@chicagoan and @brutersmom , it was a really hard 4 days ! I've never had to wait more than one day for results . I did check with my oncology nurse and she checked on them on day 3 and said they had not been read yet and the radiologists are taking up to a week to read the scans . This was a routine scan and I didn't have any complaints of pain or concerns is it's possible the radiologists prioritize more emergency type scans .
thanks for the support!
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I just had my pre admission testing done. I am kinda freaking out. It has been 17 days. I normally have 2 weeks off. My white count 3.50, red count 3.57, and neutrophils 1.73 are lower then my normals at two weeks. I did email my Oncologist. I have another test 6 days before surgery, which is a little over 2 weeks away. These numbers must be in the normal range for surgery. Anyone have suggestions to get my numbers up.
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Aprilgirl, I'm late with the congrats, but great news on your scan results! And yes, waiting four days seems so long, ugh. Make plans!
Brutersmom, I don't have any suggestions for increasing your blood work numbers, but I hope someone chimes in with suggestions so you can have your surgery and get some pain relief.
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Aprilgirl1, I'm so glad to hear that your scans continue to show NEAD. Thanks for sharing the positive news. The results were worth the wait but 4 days is a long time!
I got my scan results back today and everything is stable. I'm relieved and grateful.
Brutersmom, I wish I had helpful advice about boosting ANC and other blood counts. My numbers tend to be low as well. I had breaks when I started Ibrance last year and my numbers did return to a normal range.
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brutersmom, the only thing that helped me was taking a break from the Ibrance. Maybe your MO will let you do that to bring your ANC up enough so that you can have the surgery.
Carol
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Sunshine99. I have been off since the Sunday after Thanksgiving. I was told that I should be normal in 3 weeks. My timing wouldn't let me start up again so I told them I was taking off until after surgery just to be safe. I really thought my numbers would be higher. I did hear back from the MO and he thinks they will be up by January 8th which is 3 more weeks from now. I am just fearful surgery will be cancelled again, so I am stressing out over everything little thing.
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Hi sunshine99, I'm really interested to know how long your Ibrance break was?? I'm in my second week of Ibrance break but the way I feel right now so exhausted from doing nothing physical, I'm guessing i may take a 3 week break this time. I've not felt this beaten since I suffered a bout of pneumonia in December 2021 after a year on Ibrance.
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Rosebessie. Sorry you are so fatigued. Low neutrophils make you tired. What dosage are you on. You might want to update your signature so people understand your situation better. I was reduced to 75mg and still have low neutrophils. I am off right now for at least 6 weeks prior to knee surgery and 2 or three after. I also found the fatigue overwhelming in the beginning. If your still on 125 and very fatigued you might want to ask for a lower dosage.
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I hope you are all dry from the crazy rains some of us had. Right now they are talking about the Schuylkill river cresting over flood stage in Reading PA. Sadly some homes are in the flood plane. Right now it is quite windy. I had to push extra hard to get the grocery cart to my car.
One more visit done today in preparation for my surgery. Saw the PA today. Cleared for surgery. She was upset that my BP was so high. I said it's been like that for a year and all the Dr wanted to do was watch it. Then he made a appointment for 6 months. We agree a good place to start was bring my current meds up to a therapeutic dose since I have no side effects from it. I bought a new blood pressure cuff with a blue tooth that talks to the app on my phone. Makes it easy to send readings once a week or so to determine if more adjustments need to be made. I cancelled my appointment for January and made one for April. I have always liked my Dr but if he does not take my blood pressure seriously, I will continue to see her.
On another note last few months I started to notice my hair was sheding. I have a lot of baby fine hair and initially wasn't to concerned. About the time I was getting concerned it stopped. The last few days my hair has started to look like Dennis the Menace with a cow lick at the back of my head. I have all this new hair coming in. In the wind today. I noticed these short little growths are everywhere but the hair is hold them down. I guess it is safe to say my hair is coming back.
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Hi brutersmom, thanks for sharing your experience eith the low Neutrophils. Mine jumped back up after the 3 day dose of Azithromycin. Yesterday I was at 1.7 from 0.5 last Thursday. Now my Oncologist says we can maintain the Ibrance treatment since the Neutrophils seem to respond to sntibiotics. I feel like I'm between a rock and a hard place coz changing scares me yet staying on Ibrance means continued Neupogen injections, sometimes followed by antibiotics 🥴🥴. Mercy, mercy, mercy. One month I'm all energy and the next I can barely walk.
So how do I update my signature 🤔. I've no idea.
Incidentally I notice you stopped Arimidex in 2017? Now you're on Femara? I actually thought Arimidex and Femara are tge same thing. I was started on Fenara before my then Oncologist changed me to Arimidex but it gives me massive side effects.
Lucky you. Your hair is making a comeback 👏👍
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brutersmom, I've been off Ibrance since July and won't be going back to it. I'm now on Faslodex and will start Truqap as soon as I complete radiation to my esophagus. Insurance is still pending on the radiation, but I've now received two bottles of the Truqap from two different pharmacies. Don't know why.
I did spend an hour on the phone with a woman from my insurance company. She was actually very helpful and is going to get to the bottom of this ASAP. I first saw the RO about this new development mid-November and this should NOT be taking this long.
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Rosebessie. Go to home click on your picture and chose privacy and setting. Scroll down.
I stopped arimidex back in 2017 due to side effects. I had become agressive, severe mood swings, racing mind, and suicidal because I no longer want to live this way. When I learned the cancer returned, I begged the oncologist not to put me back on hormone blockers. I would rather die. The doc was so nice. First I was told there were meds that could help me and wondered why I was never offered them. They eventually assigned me to an interim doc to get me stable on letroze and ibrance So far effexor has worked. You have me wondering about Neupogen injections. My doc suggested them. I didn't think they worked on neutropenia from cdk4/6.
Sunshine99 I have not heard of Truqap. Sorry to hear that the Insurance company won't approve of Radiation. That seems odd. I hope you are feeling well enough to have an enjoyable holiday.
I have been working on cleaning up the house for our annual Christmas Eve gathering. My dryer stopped heating today. Not sure it is fixable. The repair company told me my washer and dryer were the worst models made by Bosch. One of my tenants new hot water heaters stopped working working that was an easy fix. All I had to do was put the lock box on the property. Tenant saw me and said oh by the way one of the burners is out on the stove. That's a job for my husband next week. The stove was put in in 2006. Might just get replaced. It was a cheapy.
I got all my clearances for surgery just need my neutrophils up. I have two holiday parties Wednesday. Going to one the crashing the other. Thursday is the meeting with the hospital preadmission nurse. Friday is the palative care doc. Then a break between holidays and the more blood work. I am feeling fear full that something will go wrong and screw up my plans.
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@brutersmom , I have the same hair style going on - my hair overall has thinned a ton. 4 years on ibrance and fulvestrant have taken its toll . But, I have new growth that sticks up about 3 inches high , all over my head if the wind kicks up ...I'll take it as it's working. So happy to hear you are all set up for the knee replacement, assuming your neutrophils go up - willing that to happen ! I have found that my neutrophils are higher later in the day. I used to schedule my appts for first thing in the am but lately have had them later (early afternoon ) and noticed they are better . My onc nurse said they have noticed that as well with other patients .
@mc22 congrats on good scans !
@Rosebessie im sorry you have so much fatigue and low neutrophils . Initially I had many Ibrance cycles with neutrophils too low and had to skip an extra week before starting the next cycle . I had two dose reductions and have had pretty stable neutrophil levels on 75 mg Ibrance. I am allowed to start Ibrance if my neutrophils are .80 or higher. Yesterday they were 1.40.
@sf-cakes thanks for the congrats :) Hope all is well. I read somewhere on here that you have pain from your treated spinal Mets and I hope you can get some solutions asap !
@sunshine99 I am so sorry you have had these delays in getting the radiation approved . Pls keep us posted on when you start rads and also when you start the new medication . Sending you good energy and prayers for excellent responses to both !
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Thanks @aprilgirl1 I did make my appointment for mid-afternoon this time. I sure hope it helps brings everything up. Since my red and white counts are also low I added iron and b vitamins for 2 weeks just incase. I will stop those New Years day, a week before surgery. Don't know if they will really help but figured they wouldn't hurt for e weeks.
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Aprilgirl-Interesting that the time of day may affect lab results. I was going early in the morning with no food in my stomach when I had some low white blood counts. Recently I had labs late afternoon and even though I was near the end of my Ibrance cycle, my ANC was 1.1 which is good for me. Guess I will try to stay with the later appointments.
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@brutersmom let us know what your next blood test looks like !
@chicagoan the first time I thought it was just a fluke that my afternoon blood levels were so good but a nurse told me they are higher later in the day. I also usually have my monthly blood test super early as I also have my fulvestrant injections and want to get it all over with so I can get to work but now i will schedule these in the afternoon.
For regular people, slightly higher neutrophil counts might not be a big deal but for us if it stalls treatment or a long planned surgery , it's a huge deal to have them higher . Early morning , my neutrophils were under 1.0 but over .80. Afternoon they have been .96 to 1.50. Big difference to me !
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Aprilgirl, that's an interesting observation. I found an old post from the Ibrance thread that I thought might be helpful to everyone. It's from 2017 and looks like it was during the trial of Ibrance. I've copied it below:
pajim Member Posts: 930April 2017 edited April 2017
Ladies, "I have a tip", she says as she sits in the chair waiting for PKs to start. . . [means I'm in this builidng for another 12 hours today].They measured my neutrophils and platelets this morning. Neutrophils were just under what they would allow for this trial I'm on. They told me to go run up and down the stairs for a few minutes after which they would redraw blood. So I huffed and puffed my way down and up 10 flights of stairs. worked up a sweat.Neutrophils went from 990 to 1400. Platelets from 100K to 130K. Holey samoley! Guess you just have to get your blood moving. Nurses say it generally works.And I got a workout in!0 -
@mc22 - that is very interesting ! My oncology nurse told me to run up and down the stairs before I head to the clinic and I do but it hasn't helped as much as going in at 1:30 pm or 2. I'm pretty active in general so I've easily walked briskly 10,000 steps by 2pm in an average day .
I'm on 75 mg Ibrance and have been for 2 years . I'm going to continue to get my blood work on day 28 in the afternoon and see how this tracks .
Thanks for sharing this post from 2017:)
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@mc22 @Aprilgirl1. I have read a study on this. It is true that your neutrophils will go up with exercise. The catch is, they will go back down in an hour or two. It's not permanent. I have considered doing that for surgery. The problem is that my neutrophils get lower each month I am on Ibrance. That could create a dangerous situation for me and others.
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@brutersmom, I have been including a few tablespoons of cacao into my morning smoothie. I think it helps with my neutrophils but am very aware everyone is different and what works for me may not work for everyone. My neutrophils are back up to 1.9 at the end of a cycle of kisqali. That is very good for me.
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