Ibrance (Palbociclib)
Comments
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Nicole, the Estradiol is estrogen. I don't know your medical history, so I'm not sure why it was prescribed, but I'm assuming your oncologist okayed it, if he/she didn't actually prescribe it. Not an expert here, by a long shot, but I'm surprised someone with hormone-dependent breast cancer would have been prescribed something that's used as hormone-replacement therapy. Maybe the cream is a very small dose?
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DivineMrsM - Yes, I should have mentioned that my wife was on 125mg for her first cycle, but her MO plans to take her down to 100mg beginning with her second cycle.
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Yes she did prescribe it because all the lube in the world wasn't helping for extremely painful vaginal area stuff. I had 2 Gynocolgists also concur that it is ok to take even with hormone receptor positive BC and there are also some women on here that take it. (If you look in my thread about "painful sex") supposably it is not absorbable to the rest of your body and it is a very low dose. However, I only did 4 suppositories and stopped it 5 days ago I cannot imagine why I would still not be getting hot flashes? My MO is out today so I am guessing I will not have an answer until Monday....
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Nicole, I did some research this morning, and apparently the cream is a very low dose, and is commonly prescribed in BC patients, even hormone-receptive ones - I guess I learned something... (actually, two things - the first thing I learned is to research first, THEN post!).
As for the hot flashes, yeah it shouldn't be the estradiol - even in high does, it says the half life is only a matter of hours.
For me, the flashes come and go. They can be many times a day for two weeks, then gone for a month. That's why these SE are so stressful... they're not CONSISTENT!!
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Ciaci yes for sure inconsistent SE's make it hard to plan anything in advance unless you're the type that can just go with the flow. Right now the Flow is what I got so I just go with it. I may ask about that cream though at my ONc appt. next week.
Tanya
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I use the estradiol cream and I am so grateful for it!
MO actually rx’ed Premarin which is straight estrogen taken from the urine of pregnant mares. Not joking!!! I tried it for one week and I got sick. Not sure if it was the Premarin or something else. But I immediately told my MO who had no suggestions. Thankfully my ND told me about the estradiol and I’ve been fine on it every since.
MO spoke to question about introducing estrogen through vagina - I was incredibly concerned, and he said that the dose is sooo low and that it cannot influence things, and because of the local use in the tissues, that there is very little concern about free floating estrogens from it.
Estradiol is weaker than estrogen and better metabolized by the tissues.
I started at 1x/day for 2 weeks and now I only use it 1/week unless I can feel my vaginal tissues getting irritated or hardening, or whatever exactly is happening in there
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even though I’m not on Ibrance anymore I thought I would put a little update in case it is of interest to others. I have been on AA for 4 months and my TMs have gone down by 40% and my PET yesterday showed everything was stable, improved or resolved! I actually feel better on AA than on IF, blood sugar fine, some increase in cholesterol, but, still close to normal. I do have fatigue ( what else is new) but, it doesn’t impede me in doing things I want to do. It does give me pause about doing onerous tasks!Never got mouth sores, used a rx mouthwash for 2 months and then stopped. This combo has a bad reputation for side effects, but, my MO told me that lots of people do fine on it and it works- others can’t tolerate it
Have a happy day- going to plan our trip to Ireland now!!
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Hey all. Hope you all are ok and will enjoy the upcoming weekend. I am just trying to stay cool. I do not like summer and the heat.
NicoleRod- I too would be concerned if the hot flashes quit. I have had them every day, several times a day, several times an hour, since I started treatment. Oh My Gosh I get tired of them, but if they stopped it would worry me. Let us know what the MO says Monday.
Gailmary- Woohoo on the stable scan!!!! Hoping the liver cyst is benign.
Nkb-- Woohoo that you are tolerating AA and doing well with it.
I am getting my next CT next Wednesday with a MO appt the following Wednesday. But I will look up the results before the MO visit (I always do).
Hugs to all.
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Nkb, thanks for posting that. I'm really happy you are doing well on AA. My MO has mentioned it in the past but not recently. I guess what is discouraging for me is that, since we don't know how we will fare SE-wise on any treatment, it is our job to suffer through them when we do have them to find out. Maybe that would just be a few days/weeks but still, it depresses me to no end. 1. Start a new treatment 2. see what SE's appear 3. suffer with them for however long you choose 4. go off that treatment and repeat starting with number one. I call it the guinea pig cycle. Of course, around number three, you can try and work with your MO to help with SE's. We all know how that goes. I'd like to talk to anyone who is also in this funk. I looked through a lot of threads and couldn't find this topic being discussed.
I'm sure others here will have a more positive reaction to your news and I hope you keep coming back to let us know how you are doing.
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Jaycee, I am not in that funk, but for me it is waking up each morning waiting for the next SE to hit. Today I woke feeling pretty well then wham, I had something "wonky" happen to the vision in my right eye. It lasted for about a minute and was different than a migraine aura. I called my Onc to see if it is anything to worry about. It took me 40 minutes as I was passed around a bit, went through two nurses then an opthomologist who asked me all the same questions again then said they will call me to get me an appointment today but it is not an urgent issue. I worried it was a TIA but they didn't act like it was anything much. I just never know whether I should call whether it is something critical. I hate that I have to put my entire day on hold for a minor issue not knowing anything...It is 11:00 and it happened at 8:30. I usually like my medical group but sometimes it is difficult.
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ive been on ibrance for 11 month now and yes I've have had a lot of hair loss....it gets thinner all the time,,i just don't wash it as often and comb it less than I ever did...as long as the ibrance help keep the cancer away,im ok with thinner hair..
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Chris, no, I'm not there at all. I NEVER call my MO about what I might perceive as a SE. My body is such a battle zone of medical issues, any symptom I might have is always due to something else besides cancer or cancer treatments. Dealing with what you are on a FRIDAY? Different doctors, being on hold on the phone, that is a nightmare I avoid like the plague. I had a culture at my gyn's this past Monday and the results were posted on my hospital's portal yesterday and still no word. (With my hospital portal, I usually see things before any doctor.) I left a note on my gyn's portal as a test. I just started going to her recently. I don't expect a call today. But this is our life, right? I guess it has finally worn me out. I guess we all have our own funks.
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Jaycee- I get it. I was so scared to take the AA- but the Xeloda scared me more. The first month I was “bone tired” but, that improved a lot in month two. I wonder if it was killing cancer so much the first month or just my body adjusting. Less hair loss with this combo even though I am on an AI again. Maybe all the hairs that were susceptible to these drugs are already gone so things are stable.
Here’s to overachieving with treatment whenever we can.
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Intolight- I would be worried about a TIA. When I had mine it was a vision thing. But not one eye, but both. Like they were not working together right. Things wavy, crooked. Lasted less than a minute. I too hate Fridays for that reason. Passed around on the phone, waiting for call backs, and then the weekend with no one open. If it happens again, or if something else comes up I would go to ER if I was you.
Jaycee-- I was told once that the results don't flow to the patient portal until the ordering doctor clicks a button for it to flow. So I wait a couple of days for the radiologist/pathologist/or whoever to read the results and then I call Medical Records and get a copy. My docs all hate that I have the results before my appt but oh well they can just deal with it. My body, My results, My life. Crazy you had test Monday and still no word from doc. How would they feel if it was them? I know they are busy, but unacceptable in my opinion.
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Candy,
I was told like you. Ordering Dr has to release records into the portal AND he/she has 14 days to do it! Normally wait 14 days for results from blood work. It's crazy
s
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Candy, I finally received a call back and spoke with the ophthalmologist. After a long conversation she said it was an ocular migraine and that I was the fifth one today. There is nothing they do for that. I am to call her back if/when it happens again and she gave me her personal number and she will get me in same day. And because of my age and dx, if I see my regular optometrist before then, I need them to refer me to the opthomologist (her) and she will see me then. Any thing else pops up of concern I follow protocol and go to ER.
Buzzy, I lost lots of hair, and even bought a wig. Now, at 40 months, my hair is getting better. I am hoping someday I may even like it again...
Hugs to all... Chris
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Glad it wasn't serious IntoLight! My sisters and I all get ocular migraines a few times a year. They can be super scary (especially the first time) but luckily they only last a short while.
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Ciaci My MO's nurse called and she said she didn't think the flashes stopped from the suppositories but we can stop them anyway for now. Last week I spotted like break through bleeding so she said sometimes that can happen and also that hot flashes can come and go. She said she is not overly concerned at all about the hot flashes having stopped she would be more concerned if I got a period. So everything is staying on track.
My upper respiratory infection just wont leave ughhh!!!! I took 4 of the 5 days of levaquin...I didn't finish the last day because they were making me feel really bad. I believe I am hopefully at the end now but the cough sounds so bad and I feel all congested but I can breath because of the clarity D, the mucinex Dm is helping a little but there is a lot of congestion I sound severely nasal. Just hope it goes away soon.
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I am sad, but relieved to see others with ocular migraines. Was in the ER last week getting that exact diagnosis. It is a relief that they don't last long, and for me involve a minimal headache.
All the best!
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Oh reference to that vision issue. I went to the ophthalmologist. She did a complete eye exam and said I have a stigmatism and also needed prescription readers. She doesn't feel my issues are from meds..(but who knows)... I definitely know my eyes even "readers" wise have gotten worse since the Letrozole/Ibrance. Anyway she prescribed progressive lenses and they costed a fortune and now I am hearing all negative things about them LOL figures. LOL I will have to wait and see if I like them.
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IntoLight- Good you got a call back. Sorry for the migraine and hope you don't have anymore and have a good weekend. Nice of her to give you her number and she said to call if further problems.
Nicole-- Glad things are ok with the hot flashes. Hope the upper resp infection goes away soon.
I had my monthly Lupron injection today. It hurt more than usual when the nurse gave it this morning and WOW is the area sore now. Seems to be a little higher up and more on the side of the butt cheek than normal too.
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All. I just read a Daily Mail article describing combining a lung cancer drug Critzotinib with Ibrance. The Critzotinib attacks the protein that develops resistance to Ibrance. My fingers are crossed!
All the best!
Drugs for breast and lung cancer 'should be used TOGETHER'
Breast cancer drug palbociclib was used with lung cancer treatment crizotinib
Duo therapy blocked cancer cell division and made them lose their 'power'
It could be used to overcome resistance to treatment for breast cancer
Crizotinib targets the protein that causes palbociclib resistanceResearch led by Professor Paul Workman, chief executive of the Institute of Cancer Research in London and Dr. Sibylle Mittnacht, professor of molecular cancer biology at University College London's Cancer Institute.
By Alexandra Thompson, Senior Health Reporter for Mailonline at 2:19 AM UTC on 12 July 2019
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movingsoccermom- that is really cool. Also- crizotinib is already approved for lung cancerso if it pans out could be used by an MO right away.
There is also a study in the UK called ROLO which is using crizotinib and fulvestrant in ILC patients. It may target a CDH1 gene that causes the loss of the protein E - cadherin commonly seen in ILC.
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Nkb -- I just posted info about this trial on another topic!
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NicoleRod
I also have vision problems with eye brance which I understand is a side effect of I brance. No night driving for me!!
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oh wow! I didn’t realize vision problems are really a true Ibrance side effect! I thought I’ve been getting loopy because I feel like my eyes have been oddly behaving.:.like sometimes everything looks a little foggy, and most it the time it feels like I can’t look at the outdoor light without my sunglasses on 😎. This is all New. I was blaming smartphones but maybe it’s the Ibrance??
Candy I have had that incorrectly place Lupron shot before too. After it happened once and then a second time, I started to have the nurse put a numbing agent on my butt right at the spot about 10 minutes before the shot. A friend of mine who is an MD suggested I request this. It helps me tremendously. Sorry you’re having the sore butt :
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Good morning, all! It has been a long time! So far, I'm stable on Xeloda, and we're off on a boat trip. Lauren very kindly checked in on me and Grannax, who is on the same medication. Sending hugs to each of you, especially old friends.
I just saw this article in OBR Daily and thought I should pass it along. Curious, I miss your wonderful thoughts and insights!
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IntoLight - I got an occular migraine in my third cycle of I/Fulvestrant. It was odd, as I never had one before. It lasted about 5 minutes, but seemed like hours. But what frustration you must have had being passed from one person to another. Glad you got a personal number, *if* it happens again.
Nicole - I have off and on hot flashes. They come, they go. Some days they are numerous and then I'll go days without getting them.
Gailmary - That is wonderful news. I'll take any sort of positive news.
BLMike - Glad your wife is doing well with the I/L combo. My first cycle, I had to wait a few days after my off week to continue, as my ANC was still a little low. I believe it was 800 or .8. I waited over the weekend and in three das, it was up to 1.1 and I was able to start Ibrance 125 again.
NKB - That's wonderful news! Glad the AA is working for you and you have limited side effects. Enjoy Ireland!! It's beautiful.
Candy - good luck with the CT. Hopefully you won't have too much scanxiety.
Buzzy - I am not on Ibrance anymore, but I have found that I am losing hair on days I wash it. I am hoping it will go away - and it's just a delayed reaction. But your attitude is great!
Joyner - That is an interesting article. Thanks for sharing it.
This past Thursday, I saw my new MO. I was very apprehensive about the meeting, as I didn't know if I would like him or not and if we would "mesh". Needless to say, all that worry was for naught. He is wonderful. The first thing he talked about was treating me with non-standard care treatment. To make a long appointment story short, he went over my new biopsy results. I found out why I/F failed. My new tumor samples were estrogen/progesterone negative. He said that I/F may have killed all those ER+ cells and left me with the non-HR responsive cells to grow. I am HER2 -, but have some expression of positivity. I have a slight mutation of the PI3K. Dr says that opens a lot more doors for treatment before it's platinum chemo. He would like to start me on immunotherapy sooner than later. He is on top of the latest research and that makes me happy. He took a look at the LN in my supraclav area and said he couldn't feel anything, so my new treatment on Lynparza/olaparib is working. So it was a very good appointment. There's still some pleural fluid around my left lung, but it's not enough to warrant another procedure and he's not worried. He says I will most likely pee it out.
I want to thank you ladies for your invaluable information on this thread. 0 -
Joyner, I check on you, Grannax, Jaylea, and others almost every day. I taught Lauren the stalking thing. I'm looking forward to following the boat trip blog. Hope your weather is better than mine. We have 100+ every day. Inside weather.
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Hollyli- I am happy for you in that your new MO and you mesh. He sounds like a keeper. I hope you get a good long run with your current treatment.
When I progress (hopefully not for a long time yet) I too want a new biopsy or new studies of some sort. Months ago I mentioned to my MO about what would happen when Ibrance/Letrozole fails. She said we would change to Ibrance/Faslodex. Maybe that is the right way to go as lots have mentioned this combo. But what if the ER status changes? Shouldn't we get new studies when progression comes? Hope I don't have to cross that bridge for a while.
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