Ibrance (Palbociclib)
Comments
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Lee64,
I am supposed to get two boxes tomorrow. I was told that since I had just submitted for coverage by Pfizer very late in the year, they would re-use the paperwork I just submitted to review me for full 2021 coverage. They also told the coordinator at my cancer center the same thing. the woman from Pfizer who called me said that they were sending two boxes because, if I remember correctly, they have to review each application for assistance during January, and I think she said they have usually around 11,000 applications. They were sending the two boxes because they weren't sure that they would process my application before I would need January drugs, and that's why they were sending two boxes.
So I don't think it's an automatic renewal -- if you originally contacted Pfizer yourself (as I did) you should call to see if you need to resubmit. If you submitted recently, it's possible that they will re-process for 2021 using what they have? But I would definitely verify it. If your cancer center made the contact, you should check with them.
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Got woken up by MO nurse this morning. Said TMs have doubled but that we're monitoring it every month and will check again January 8th. TMs haven't done that before yet. MO listened to my lungs alot last visit (3rd) and asked if I had any coughing. Mind is running wild a bit but kinda had a feeling since this cropped up last February, again July and again this Nov. However if its lung mets it hasn't changed yet there (stable, nodule and the irritation lower lungs, bilaterally according to latest scan). July report said just one but this November report said both and it was unchanged from last scan. Ugh, consistancy among radiologists would be nice. It would be a major pain for things to change after I just scanned tho. Ugh. Just keep striding striding striding.
Anywho, I am 3 for 3 with the sleeping even with a blustery Ibrance evening. Think William Tell Overature.
Hoping for better sleep for you Jackie, incremental sleep sucks.
Candy, hoping 21st comes for you fast.
Just woke up a couple hrs ago and ready for nap already. Sleep is ok by me, I'm going for it!
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RRabbit - amazing news about your sleep ! Sleep deprivation really takes a toll and most of us can relate to that . How refreshed you must feel! I'm sure the call today about rising tumor markers isn't super comforting but your oncologist and team are on it which is good . Your screen name on here makes me want to reread The Hobbit ! I read it many, many years ago. Thanks for the hug
Candy , we are in your pocket for your upcoming scan! Anyone else have scans coming up ?
I am going in shortly for a second blood test - my anc was .79 so another week off of Ibrance
my MO will lower me to 75mg next cycle. Overall , my SE's are pretty minimal so I would like to stay on Ibrance as it has me at NEAD for the past 2 scans (6 months ). Next scan is 1/9/2021. I had a photo sessions yesterday for new work "headshots ". Not my favorite activity but like RRabbit said, we keep striding through !
Enjoying coffee by my Christmas Tree at dawn's early light....
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I was okayed to take a break from ibrance and letrozole. Was great! Stomach settled down, could eat again. Had lost 7# prior. MO had me start on aromasin for a week, then add 100 mg ibrance.
All the AIs I’ve been on have given me extreme foot pain, need a walker to get around. Except letrozole. The week on aromasin has put me back on the walker, so I switched back to letrozole. No improvement.
Is it necessary to take both? Can I just continue the ibrance? What other options might I have? Won’t see MO till late January. Afraid I’ll fall and break something or be in wheelchair.
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Spookiesmom,
My understanding is that you need to take Ibrance with either an AI or with faslodex. Have you discussed faslodex with your MO? It's delivered by monthly shots.
I would call my MO. This doesn't sound like something that can wait until late January. Good luck!
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This has been going on since I started AIs. 8 years, off and on. Letrozole was the only one that didn’t affect my feet. I am afraid of the shots, what if it causes the same pain? I’d have to wait how long to wash out of my body. As opposed to just stopping a pill, feel better in a few days?
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Spookiesmom - I think an AI is usually given with Ibrance for ER+. You might have a choice on which one. I am taking Arimidex brand name (anastrozole). My tumor is highy ER+ . Alot of people on this thread seem to take Faslodex. Your oncologist should be able to tell you which ones are an option, pros/cons of each, SEs. Your SEs sound severe and you should discuss it even if only telemed with your oncologist. I think the Ibrance studies only looked at a couple of AIs, so it may be hard to gauge which one is "best". At first SE from Arimidex very minimal, but after a year my hands, particularly the left, has increasing stiffness and one finger on the left locks up. But the SE is a lot less than generic anastrozole. One of my frustration is the lack if metrics. Scans show tumor shrink/growth/spread, but how much is from the Ibrance and how much from the AI?
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Was on aramidex for 4 years, developed this foot pain, stopped for 6 months, went to tamoxifen for about 6 months, more foot pain. Reoccurrence, surgery, rads, then on letrozole for about a year. NO foot pain. Developed GI issues. Stopped ibrance and letrozole. Started aromasin then ibrance. Foot pain is back.
Went to podiatrist he could tell me what it wasn’t, put me in a boot. That does help, but is hard to get on and off. Of course it’s my right foot, can’t drive with boot on.
Have appt with orthopedic guy tomorrow for different issue, will hobble in with cane, maybe he can suggest something.
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BevJen, thanks for the info. Much appreciated.
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There seem to be several AIs out there. Are there reasons why one might be Rx'd vs another to use with Ibrance? On another post I read that with menopause and AIs estrogen is so low that it is very difficult to measure. So it something else about AI than its suppression of estrogen or SEs that vary from individual to individual? Hoping to put my mind at rest before next scan and DR visit in January. DR called and was concerned about CA 27/29. Was 25.6 when first measured a year ago when I started Ibrance, 43.1 in August, and 50.4 when measured a beginning of December. Ibrance was lowered from 125 mg to 100 in Sept because of low WBC. She said she did not want to change treatment yet, but might depending on nexts scans due early January.
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As far as I know, letrozole is the most commonly rx'd AI with Ibrance because it was the AI used with Ibrance in the Ibrance trials. If you are cynical like me, you might believe there was financial maneuvering to make that combo happen in the trial. If you have a problem tolerating letrozole, your MO might suggest trying another. They all do the same thing. The joint/muscle pain side effect may differ among individuals.
That is not really a huge increase in CA 27-29. MO#1 used to do that one on me at the beginning. Mine used to fluctuate that much and he was not concerned. MO#2 and MO#3 don't do any tumor markers. Not reliable, they say.
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I forgot about the estrogen question. There are three types of estrogen.
- Estradiol (E2): the most common type in women of childbearing age.
- Estriol (E3): the main estrogen during pregnancy.
- Estrone (E1): the only estrogen your body makes after menopause (when menstrual periods stop)
Estrogen is made in other places than the ovaries, like fat cells. When I started using topical estrogen in my uro-vaginal area for vaginal dryness and recurrent UTI's, I asked my MO to test for the amount of estrogen in my blood. We tested before I started the topical estrogen and after a few times. It was low and never increased. The only type of estrogen they tested for was estradiol. After reading the above, maybe we needed to test for estrone. (I'm post menopausal.) Never offered. Never done.0 -
Jaycee - thank you for the response. Sometimes I find that answers to questions is more about what the study used than anything else. Frustrating how many unanswered questions and so much variation in cancer, treatments, response to treatments. It is such a beast. Sometimes I feel that there is too much focus on being a "patient" rather than living life. With Ibrance I asked about the importance of keeping it in its original packaging. I have a 2 week river trip down the Colorado planned for April and thought a bottle would be easier to manage. So the PA called and found out that the packaging was meeting compliance standards and that it would be ok for me to pop out the pills I need into a bottle and take the bottle. Even with a "week off" during the trip I will probably need to take a 2 week supply. Probably will not bring the supplements I take.
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BlueGirl - I just reviewed the insert from Ibrance. It's my 2nd set of tablets. It did state to keep the tablets in the original packaging to keep the moisture level down. Do you have any extra silica packets to add to your bottle?
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Serenity - thank you for the suggestion. Yes I do have extra silica pacs. I would not have thought of this.
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Hello ladies.
I just received a message from my MO, she thumbs up for vaccine as soon as available to me!
Now more important question, when it will be available to us (MBCs)? Have you heard anything?
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I went to MO yesterday. The nurses and doctors, etc. will get the vaccine this week. (Some healthcare people actually refused it.) My MO does not know when it will be available to us. He also said that I would have a "weak immune response" due to low ANC and white counts. He said that "timing it" at highest counts would be important. After week off? As usual, he was rather vague. He was annoyed with me over something else (normal) so I decided to not risk asking. He is also annoyed that he can't access any research about the vaccines. The tension in the place was palpable from all sides. It is in a medical office building across the parking lot from a very overwhelmed-with-cases hospital.
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Jaycee - my MO said it should be at the end of the week off, beginning of the next cycle at the latest.
I can't believe some health care providers won't take it - same problem over here.
I think we all need to hang on for the next few months as it is going to be pretty bad, California's case counts exceeded the UKs today.
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Yes Jaycee, couldn’t agree more. if I am given a choice, I’ll pick up end of week one, that would be reasonable due to low wbc and anc counts, then the second dose end of week off.
Covid hit our county badly. We are paying for careless people traveled over thanksgiving time, majority college kids. and you know with the vaccine we will not return to normal at least for one 1/5 year. I hope this virus nightmare will be over soon.
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Hi Snow-drop, Jaycee49, & SondraF,
Thanks for the info on the COVID-19 vaccine. I plan on asking my MO at my next visit. The vaccine scares me due to being immune compromised, so thanks for the tip about taking it at the end of the "off" week.
Happy Holidays to everyone and best wishes for a very Happy New Year!
Katrose
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This was just written up on this page on our site:
https://www.breastcancer.org/about_us/press_room/news/coronavirus#vaccine
Can people with breast cancer get a COVID-19 vaccine?
On Friday, December 11, 2020, the FDA approved the first COVID-19 vaccine for emergency use: the Pfizer BioNTech COVID-19 Vaccine. Other COVID-19 vaccines are being developed and may eventually be approved, as well.
The FDA has found that the Pfizer BioNTech vaccine is safe and effective for preventing COVID-19 in people age 16 and older. The vaccine was 95% effective at preventing COVID-19 in a clinical trial of more than 37,000 people. It is still unclear how long the protection lasts and whether you can give someone else COVID-19 if you are exposed to the virus after being vaccinated. So mask wearing and physical distancing will likely need to continue for some time as more people are vaccinated. People with serious medical conditions such as cancer have not been included in COVID-19 vaccine research so far. But because the Pfizer BioNTech vaccine isn't a live vaccine (meaning it doesn't use a weakened virus like some vaccines do), it can be used in people with weakened immune systems, including people being treated for cancer.
The Pfizer BioNTech vaccine works by using genetic material called messenger RNA (mRNA). The vaccine contains a small piece of the coronavirus's mRNA, and that tells your body to make copies of a protein in the virus called the spike protein. Your immune system then builds up immune cells and special proteins (antibodies) to fight the spike protein. So, if you're ever exposed to the COVID-19 virus, your immune system is ready to recognize the virus and protect you from infection.
Because mRNA is just a small piece of the virus copied in a lab, the vaccine cannot cause COVID-19, and it is considered safe for people with weakened immune systems. However, it is unclear whether the vaccine may be less effective and offer less protection against COVID-19 in people with weakened immune systems.
The vaccine is given as an injection under the skin in the upper arm. The vaccine consists of two doses given 3 weeks apart. The most common side effects have been pain at the injection site, tiredness, headache, muscle pain, chills, joint pain, and fever. These side effects are usually minor, last a few days, and happen more often after the second dose. Side effects are expected and are actually a sign that the vaccine is working by causing an immune response. People are monitored for about 20 to 30 minutes after receiving each injection to make sure they don't have a rare serious allergic reaction to the vaccine. People with a history of severe allergic reactions to vaccines should talk with their doctor about whether getting the COVID-19 vaccine makes sense for them.
The CDC has decided that healthcare workers and people who live in long-term care facilities will be vaccinated first. Once more vaccine becomes available, the next groups to be vaccinated will be older people and people with high-risk medical conditions such as cancer. Once the vaccine is more widely available, you can talk to your doctor about whether getting the COVID-19 vaccine makes sense for you.
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Hi Ibrance friends,
I’ve been away from the boards for a bit. I just marked year 5 since my stage 4 dx (de novo). Still hugging along on Ibrance and Letrozole. My Lupron shot has changed and is now given in my arm. I think I have a pea size bump where it was administered...hopefully the estrogen suppression is working how it should.
Read yesterday on a FB group of a person still on the original trial. She’s been on Ibrance for 85 months!
Gearing up for scans and hoping to continue with NEAD/stable. Work has been very hectic and am supporting my son with distance learning. I’m so happy to have just started a two week break from it all.
I HATE the new Ibrance tablets. The nausea is awful. I’ve been awoken several nights just about to throw up. I also have a terrible rash on my inner arm that popped up when I started taking this new formula. I’m grateful for this medication and need to switch my attitude about this new formula. I considered going off of it I was feeling so badly. Enough complaining.I’m not going to rush to be among the first for the COVID vaccine. I am being very careful by not going to stores or interacting with people. I live in Southern California where a person is dying from COVId every 30 minutes according to our news
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Afternoon ladies!
Just checking in briefly. I'm still sleeping completely on my own. This feels so strange and so awesome all at the same time. It takes a bit to drift off. Then I get woken up by the call of nature and I'll watch something for a bit and then nod off again. Sometimes i can manage a nap too during the day. I've come to accept my sleep doesn't really have a schedule anymore and accepting that has helped me conquer sleeplessness. This is celebratory for me
Candy, I wanted to let you know I'll be thinking of you tomorrow and will be in your pocket
Hi Jen, Good to see you check in! I'm not a fan of the new tablets either. 125 on the tablets was too much for me. When they switched to tablets I could only stand 3 cycles at 125 on them. 100 is better, not great but much better than I felt at 125mg. They are a pain to get out of the packaging too.
My kitchen is being doused in pioneer woman for Christmas and early birthday. Bought a set of nice clear goblet glasses from the clearance rack for 5 bucks to go with my new dishes. I felt incredibly guilty for my tiny splurge as FedEx takes forever to deliver my loot. It's just nice to eat from a pretty plate or bowl as I gaze at specks of color smattering my kitchen.
Merry Christmas to all you ladies. I'm thankful to be celebrating my 2nd Christmas MBC and soon thereafter my 2nd birthday MBC. I'm thankful I can celebrate mile markers we all reach and pass with you all. Here's to good things for all of us in 2021
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Hey Jensgotthis the new tablets gave me a rash every cycle for four cycles. After two weeks the rash popped up and I had to take Benadryl. I’ve been on ibrance faslodex for 45 cycles. Finally this cycle on the tablets I didn’t get a severe rash and tomorrow is day 21.
Rhosgobalrabbit nice that your kitchen is rustic and you have pretty plates a no goblets. One day your sleeping achievements will hopefully be mine. For now I take ambien, bathroom runs and mm and hot 🥵 flash my way through the night.
Tany
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Rabbit - I did the same thing this year! Finally got Big Girl matching plates and serving dishes in Black Friday sales because they were on a really good price and I loved the pattern (I like ocean-y things). The plates are still boxed until we move again, but I will be getting out the serving dishes/platters for Christmas so my mashed potatoes and roasted carrots can travel to the table in style.
Jen - its good to see you and thanks for the catch up. 5 years is wonderful - I hope you have many more and enjoy your Christmas time off.
Candy - best wishes for your travel and appointments tomorrow.
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New kitchen/dining table things are the best!
It's been a year since I started Ibrance. Early on I got a rash the day after I missed taking my daily antihistamine. (which I did every so often). Think it took a few months to finally go away even with the antihistamine that I no longer ever skip.
Hope everyone has a peaceful Christmas this week.
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Jen...Congratulations on 5 years! I'm not a fan of the new tablets either. I also feel more nausea on them and a crazy rash too.
Miss Rabbit...Glad you're still sleeping. Pioneer Woman haul...how nice! Which pattern did you get?
Candy...Best wishes for tomorrow.
If I missed anyone, I'm sorry. Can we please get a quote option? It will make things so much easier.
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Sondra, I love the ocean. I wanted to be a marine biologist as a kid, be a trainer at seaworld. Never worked out. But I agree, isn't it nice to put out your spread in a pretty dish? I kinda get a little strut in my walk when I present my food that way. Like oh yeah, it looks good, it tastes good, go me!
My beloved and I went to the cape in 2007, went whale watching. Saw humpbacks swim right along side the boat and breach in front of us. One turned to the side and looked at me with his little eye as he flapped his big fin. I'd give anything to go back one more time and see that. I own those BBC original blue planet dvd's, they are my happy place. Serenity- kitchen stuff makes me the happiest, aside from a new comfy outfit now and again. When you can get stuff on sale it's even better woo!
Jackie, what pattern didn't I get, lol. I kinda got a eclectic bit of everything one or two pieces in Dazzling Dahlias, Vintage floral, Classic charm, Flea market, Gorgeous garden, and Floral medley. Everything kinda goes together in its own way so I went for a "collector" look - as if I had gotten different things over time. I only recently discovered her stuff, I'm a fan
Tanya, I had been taking ambien since the start of my IV diagnosis, it took me this long to be free of needing it. Sleep still takes effort but I can do it now in enough bursts that I'm not deprived anymore. Hoping your body's sleep cycle will start restoring itself soon. Not sleeping well really is hard, I know, sending sleepy dust your way for a good nights sleep.
Candy, I'm still thinking of you
Have a Merry Little Hotflash Ladies
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Ladies: Happy Holidays to everyone. I personally am looking forward to 2021 - putting 2020 in the rear view mirror.
Working with my oncologist and oral surgeon on figuring out when or if I will get the titanium plate in my jaw. I have had three flare ups of ONJ this year and need to see if we can get a permanent solution. Cannot live the rest of my life dealing with the flare ups. The titanium plate is not a permanent fix but I'm going to be 76 on Friday so how long will I live? A bone graft is a more permanent option but it's major surgery, I would need to go out of state and the recovery is long. Still not on Ibrance (been on Taxotere for 4 months). My tumor markers are coming down nicely so that's encouraging.
Best wishes to everyone. Been thinking about all of you and reading the posts.
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Wandering, I am also dealing with ONJ since Oct. I have it on the upper right and the lower left. My ONC stopped the Xgeva shot right away and the oral surgeon did minor surgery to pull tissue over the bone but that has not helped. Now my ONC has referred me to an ENT and has ordered a CT of my face which I will have done in Jan. I am using a mouthwash now and that's it. What treatment have you had and how long have you had ONJ? I'm looking for all the information I can get from someone who has dealt with this. I would sure appreciate your feedback.
Candy, I will be thinking of you tomorrow and am in your pocket!
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