Good morning ladies,
Just an idea.... why don’t our doctors prescribe Ibrance to us women that have problems keeping our Neutrophils up in more of a mg way.
First week on 125mg, second week on 100mg and third week on .75 mg? Or visa versa?
It makes sense to me. What do you think?
Christina
If probably depends on the individual. I have taken 125mg for 19 months now and it has never changed. Much easier. I would question it with your Consultant. Take care
Not meaning to sound sarcastic or rude (bc hard with email) but I think none of us on here are doctors, NONE OF US, and you should ask your own onco that. I am sure there is a reason that they do not do that, otherwise you would read of women taking it that way. But we do not have the medical knowledge that they have, so because it seems like it makes sense to you does not mean it has any medical backup.
I will be asking my doctor and I will also call Ibrance. Like I said, just an idea and ideas create questions and questions create answers. Answers create options. That’s how things go. If we don’t try to figure new ideas out we sit stale and science goes nowhere.
Christina
Pfzier only tested the 125 mgs. But few can tolerate that dosage and most tolerate 100 mgs fairly well. You d see hound ask doc what he/ she thinks but I believe you do what feels right for your body. The docs go by what pharmacy Tells them . It has been my experience over mast 23 years that they are not the experts on the drugs. Call Pfzier help line and ask your questions. I gave gotten much further and mire knowledgeable with that approach. My docs did nit know that I ranchers caused nose bleeds inn10% of cases, which was me. I went down to 100mgs and it stopped
Well good. That is what I meant though. Ask your onco and Pfizer. When I was first on Ibrance, a nurse would call me from Pfizer every month to see how I was feeling. That is when I was first diagnosed and I was put on 125 mg. I hated it. My week off was horrible. I could barely get out of bed. I did not even know then that there were lower doses. I was not warned beforehand about how I may or may not feel during week off so my first month I was not at all prepared for how hard it hit me. But I read of women who felt better and had more energy on their week off, women who felt the same when on and off it and people like me who practically could not get out of bed.
I get your questioning why, but they would be the right people to ask, Pfizer even more than the onco. The only thing I learned for sure was that everybody has completely different side effects on same meds and dosage.
Ask pfizer to hook you up with the wonderful Ibrance app- I don’t have but I worked for pfizer oncology and your dr can give you the code that connect you to him and then you can everyday put in all the side effects and levels of pain etc so st the end of the month when you see the doctor he has a real time tool which is a graph showing him when you experience pain, nose bleeds or what ever.
You mistake me for a woman who is in the 20th century. I have no children. Although Medicaid provided me with a cheap android phone, the ONLY thing I know how to do is call the medicaid car service to pick me up and several times when I called, I could hear them and they could not hear me. I asked the cancer center receptionist if she knew why and she looked at my settings (WHAT), and I had it on mute. Yes, I am that stupid. I have no idea how to take photos so my friends do for me like with my leg.
But I have no family or children so there is no need for me to have a cell phone. Nothing is an emergency. People can call my landline and leave me a message.
Years ago I had a friend who worked for t-mobile as a store manager so she got every new updated cell phone for free. We went to Coney Island and went on the cycle. It's a traditional once a year thing we do. When we got off, she had put her cell phone in her pocket. As we were walking away, she suddenly realized it was not in her pocket. We rushed back to the cyclone ride and they came out with a shoebox of old old cell phones. If they found it they were not returning it as it was the latest phone.
OMG...My friend cried so hard like her mother had died or something. I could not understand it. I said it is only a phone. She was so distraught and said you do not understand my life was in that phone. I still thought OMG...the way she is crying is way overboard for a phone. I realize now that people depend so much on them.
I would not even know how to do create an app. Nobody has my cell phone number. It stays off until my next monthly visit when I turn it on just to call my car to pick me up.
I still use an ipod and found out recently that that is something nobody uses anymore. I said I had no idea ipods were out. LOL...what happens when you have no kids. I have a pc.
I tend to let my cancer center do all that. I hate going there as it is (tomorrow, as a matter of fact, is my shots and injections and pain doctor meeting.) In my cancer center the oncos there do not believe tumor markers mean anything. So I have no idea what they are and never asked. I am going on three years now. I give credit to the women who keep strict records and all that but I have also seen many get worried about their markers.
Cancer takes enough of my time. I refuse to give it any more than I have to. Plus, I would never have the patience to keep track of all that. I just need to know I am stable or it spread. That is what works for me. As soon as I go to cancer center tomorrow, the minute I get my injections (which for me, I feel no pain, nothing), I practically run out of there. I tend not to think about it too much (but I have my days), except when I have to go there. I just miss my old life. Three years flew by for sure.
I subscribe to your way of doing things...and miss my old life.
I felt very isolated bc I live alone, I do not drive and none of my friends live in Brooklyn and most worked. But now with Covid, I think everybody is feeling isolated. (I was going to organize my apt. (three stuffed closets). Here I am three years later, and I have not even cleaned out one closet. LOL I am a bit tired. I can't drink anymore with all the drugs I am on and some days are better than others. So it is hard for me to make plans too much in advance bc I never know how I am going to feel. And little by little, I have seen some friends slip by the wayside once they realize you can't do as much as you used to be able to do.
I think worth asking your doctor. There has to be a reason.
I read somewhere that the insurance company required the higher dose initially. Not sure if it’s true but I did make a mental note to question it if my onc decides to put me on Ibrance. It’s a good question and I wish the world was a bit more receptive to the exchange of ideas than the current climate. Just finished reading an interesting article on the cancer active site and he too is questioning the data on the flu.
Chris
Here in the UK our medication, such as Ibrance, is free on our National Health Service. So the issue of insurance providers insisting on a certain dosage would not apply (if indeed that was the case).
I attended a free online NYC Metastatic Breast Cancer conference right before I started hormonal treatment (Ibrance and Letrozole), and the whole first day was about research, clinical trials, etc. The example they used to explain clinical trials and recommended dosage was, actually, Ibrance. The presenter acknowledged that, while research shows that woman can do equally well on lower dosages... the 125 dose is considered standard treatment because of how they arrive at that. Basically, as women dropped off the trial because they could not tolerate the higher dosage, and new patients joined, they came to the scientific conclusion that 125 is the starting dose because of how they count the cohort. But this presenter herself said many/most women can't do 125mg, and this is commonly understood. She seemed to acknowledge that, in this case, 125mg is too much for most patients despite what the trials concluded. So, this has nothing to do with insurance companies. It's how they calculate responsiveness, eliminate those from the trial that can't tolerate it, and finally get to a certain number of people who do well. (I, for one, seem to be tolerating Ibrance okay at 125, although I am only on my 3rd month and did need to take a pause in between months 1 and 2 due to lower blood counts and platelets).
I have no idea about whether your idea for varied dosing is clinically sound or not. Although it does appear that many oncologists have experimented with weekly intervals, i.e., two weeks on, one week off, etc. Would be curious to hear what your oncologist says about your idea, not because it would necessarily apply to my situation... but I am trying to learn about all this stuff across the board.
Good morning,
Thank you very much for your comment. I feel the more we talk about the subject the better we understand the drugs that we are putting in our body. Ibrance is a wonderful drug and it’s the first line of defense. The last thing I wanna do is give up on that weapon. I don’t mind adjusting to the lower dose.
The clinical trials were FDA approved on the 125 not the 75 or the 100. FDA Data is only on the 125. If I’m wrong please let me know.
I also take levothyroxine and I know this isn’t the same but my doctor adjust that drug many times. If it’s not the Insurance doing it than I think I am going to be the guinea pig. I want to learn and I want to help. I hope my doctor allows me to do this. My lowest ANC before my doctor cut me off was that .5. I’ve been keeping very good records and how my treatment is going. I feel the only problem is, getting the drug in three different milligrams. I see my doctor on the 16th. I will let you know.
Christina
If you really want to dig into the weeds with the FDA, here you go. As far as FDA approvals go, the lower dosages are included. (This appears to be for the tablet form.) With some quick research online, I also came across the following wording related to 125mg... "maximum tolerated dosage." Anyway, as a starting point, it seems the FDA has approved the lower dosages as well. Will try to find some info on efficacy of lower dosages. accessdata.fda.gov/drugsatf...
That would be so helpfu
This is interesting. I just skimmed it, but it appears that the research suggests similar outcomes regardless of dosage (reduction) and any interruption in Ibrance treatment. This study specifically addresses neutropenia, too. link.springer.com/article/1...
This may be helpful to you. It also includes the FDA approval information. pfe-pfizercom-d8-prod.s3.am...
I started on 75mg because I had recent surgery and no insurance problems.
That is a great question to put to our oncologists. I am struggling on 100mg with severe mouth sores and will likely be put on 75 after next appointment. But maybe a higher dose for part of the cycle would be tolerated ok.
I would suggest you ask your onc.
Hello ladies,
I called the Pfizer and boy I think we know more than the people they have there to answer the phones. The gentleman that answered the phone did put me on hold quite a few times to check my questions. The trials were started on the 125 and there’s many patients (30%) they could not tolerate the 125. They did reduce their medication. The patients that couldn’t tolerate even the .75 dropped out. He told me that nothing has been documented on the decrease in milligrams within a cycle. He did say that is a great idea however he is not a doctor. To be honest I don’t even think doctors know if this would be an alternative treatment. Personally, I can’t see what the difference would be except you are regulating the dosage by decreasing it each week. It’s not like it’s a different medication. It’s the same thing except decreasing the milligrams per week. Again, I will talk to my oncologist when I see him next week. But to be honest I don’t think he knows either. I’ve been off my medication for now three weeks because of my low ANC. The thing is, I only get blood test every Tuesday. So my count could be good right now but I don’t get my test till Tuesday. That’s another problem.
Thanks
Christina
I used to have a nurse from Pfizer call me every week when I was first on it. You can call back and ask to speak with a nurse. She called from the CVS pharmacy but told me she was actually a nurse representative for Pfizer. She told me she would be calling me monthly to see how I was doing on it. I only lasted three months. Not because my cancer spread but how awful I felt and I developed an infection in my leg that would not go away bc the Ibrance had basically killed my immune system. Had to have surgery that kept me homebound for almost three months. Horror. But I knew many women from other forum boards that had been on it for 2-3 years at the 125 mg. dose and felt fine. The Verzenio was a pill you take every day.
I am in US. Maybe also it would be problematic with the insurance companies. They seem to have alot of power.
On another forum board, there were ladies that discussed "dragon breath" while on Ibrance. Just a few but still. They would tend to burp alot and when they did a green mist would come out. LOL....I told my onco about what I had read and she wrote it down and said good to know if any patient of mine mentions it.
I actually had that a couple times , I don’t remember it being green . Actually I think it was more white and I thought to myself, That can’t be good .
It was another forum board on stage iv and several of them (about 3 or 4) had it as a side effect and for them it was a greenish color (thus, dragon breath). Didn't bother them but I imagine they panicked at first seeing green air. My onco wrote it down just in case one of her patients ever mentions it.
Yes your count could change from day to day. Last time my dr wanted to hold my 100 mg treatment OR drop down to 75 but she suggest a stat other blood test... and neutrophils rose... almost doubled to 1.6 and I was looked to start at my usual 100z
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