Ibrance (Palbociclib)
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yes yes Elenas!
I am on the breast cancer Medicaidprogram. Wandering - ask your oncology office about this. I don't know if they have it in your state or not but I did get this and have it in Philly. Here is the link to the PA one: http://www.dhs.pa.gov/citizens/healthcaremedicalassistance/breastandcervicalcancerpreventionandtreatment/
They qualify you right away! I don't pay for my Ibrance thank goodness through this program
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I don't pay anything for my Ibrance or Letrozole. My specialty pharmacy does all the work in getting grants. The pharmacy is through my Oncology Facility (OHC). Don't know if that makes a difference, but they do all the leg work. I'm sure you will be able to find help.
Hope
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Tell ya what, a person really has to stay on top of their own medical care! My new Ibrance prescription was ordered but I hadn't heard from CVS Specialty pharmacy. Went on line and see it says it was filled on the 10th. Nope, it wasn't. Called, got some run around. Finally straightened the order out and the Pfiser copay card number won't go through, rep says its an invalid number. Oh great. She says she can get the prescription sent to me but call Pfiser.
I call Pfiser, and rep says, that number is invalid. Says if the copay card was got off of Ibrance.com website it is invalid and I must go to PfiserOncologyToday.com to get copay card. I could not remember where I got the card. But how does that make sense that the Ibrance website is doling out invalid copay card numbers?
So I get a new copay card and call CVS back. Number goes through and she says, I can get that prescription out to you now. What a headache. And I thought CVS was supposed to call me about the refill but apparently not.
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One thing that is happening is that more patients are taking Ibrance. The support people at some MO offices are not able to handle the extra work of dealing with grants and assistance programs any more. After one month, my MO's person handed it over to me. Some MO's handle it, some don't. Some specially pharmacies handle it, some don't. It depends on your situation.
Divine, Pfizer recently changed their assistance program's name and website. That could be the problem you had. Shouldn't happen but certainly could. Their programs are called "Pfizer Oncology Together."
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I'm seeing that program that Elenas mentioned available in MN, CA and PA. A quick search just showed those three. I'll look for more. MN and PA require you to be under 65 and have no insurance. Fine print says inadequate insurance and low income.
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hmm I am not sure that last part is correct Jaycee about the low income and insurance.
From what I understand, yes it is for folks under 65, they have raised the bar on the low income to I think something in the mid $40K region? And I did have other insurance when I signed up but I had to have that insurance canceled in order to get onto the program.
My other insurance was costing me an arm and a leg and so I timed my last day in the insurance to be turned “off” a few days before my application was submitted for the BCCCPT program.
The apps go through very quickly and I was covered immediately with the new program.
I am still working part time, not making any insane amounts of $$ but I still have an income at the end of the day and was able to get on this program. I did not have to show any tax returns.
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Philly, at the top of the website you gave it says this:
The woman must:
- Be uninsured or have no creditable health insurance
- Be under age 65
- Be a U. S. citizen or qualified alien
- Be a Pennsylvania resident
- Provide or apply for a social security number
Further down it say this:
- are 40 to 64 years of age (women under 40 may also qualify if they are having symptoms), and;
- have no insurance or limited insurance, and;
- have low to moderate income.
Income in these situations is defined by a percent of the federal poverty level. This is a state program. The foundations use 400-500% of the poverty level. Pfizer uses 200%. This program uses 250%. They don't need your tax returns, they have them.
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yes that sounds right! I am not good at percentages but all I know is that my income fit the requirements
so this could be good for folks within the age bracket and who are not working or working part time like me :0 -
Hello to all.
Another encouraging article, if a bit "out there" at the moment:
https://phys.org/news/2019-04-method-off-target-effects-crispr.html
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I was comparing at my blood test results between 4/10 and 4/17. Even tho the total WBC raised from1.9 to 2.2, other numbers decreased, segmented neutrophils from 34% to 28.9% and manual neutrophils from .65% to .60%. So after a week off of Ibrance, no bounce back and even a decrease.
I started taking a multivitamin, have been eating oatmeal and blueberries for breakfast, drinking oj and snacking on almonds. I read up on ways to increase the wbc count, but apparently no tried and true method, tho the dietary adjustments I made were suggested. I think it can't hurt to take a multivitamin anyway.
And I realized I was pushing myself on some strange compulsive level..... realized I've been doing that for awhile. Maybe it was a coping mechanism, or perhaps a bargaining with fate, i.e., if I work hard to cover all the bases, I won't have progression. This week, I'm taking it much easier. Asking dh for more help. Cutting myself some slack. Not attempting too many projects in one day. Trying to relax and not feel guilty about it.
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divine - we all go into fight mode, so normal! And also I go into blame mode sometimes where I wonder if the fact that I am not following the specific protocols that people online claim they’ve cured themselves with (which you can have all the wisdom about for just one low monthly cost!!)
It is the dance.:. 💃🏿
Our numbers go up and down and some are interesting to ponder and obsess over.
I have had low platelets. But not quite low enough for us to truly be concerned. My neutrophils have swung from .8 to 4 and then back down again to 1.2 (where they typically remain. The one thing that helps my psyche is remembering that our blood work has a different base line than folks bloodwork who aren’t are all these medicines. So our normal is going to look different from the standard for normal blood work. If there’s any emergency, my MO team will tell me.
This doesn’t stop me from sometimes obsessively checking my lab results and looking at the charts and comparisons from previous labs.
The one thing that also helped my psyche was when @bestbird took a pole of all the folks who are outliers and extraordinary responders on these boards. She asked them what they’d done or believed they’d done to make it so long. The responses were varied, some folks took a million supplements and others continued to eat what they like, drink Diet Pepsi and red wine everyday while taking no supplements at all!
That encouraged me so much to not get too worked up about if I’m doing the “right” thing for myself and this diagnosis.
That all being said, I do take Vit D, a bone support supplement, vitamin c, melatonin, a medicinal mushroom blend, and a B12 w/folate.
Love and hugs,
Philly
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changedname, haha, yes, the online monthly fee protocol cure! Step right up and get your cottage cheese, baking soda and coffee enema!
I remember bestbird's post asking outliers what their approach to this disease has been. Very interesting. I, too, am happy to say I'm an outlier and replied to her post. (When the subject comes up, I make sure to let people in general know I've had an “exceptional response" to treatment. I phrase it that way because not everyone understands the word outlier).
I made some diet adjustments at the time of my diagnosis but nothing radical. Enjoying food is one of the best things in life, and I can remember the best slice of cake I ever had, the best cuban sandwich, best bowl of stew, the moment I first tasted manicotti (heavenly), my first bite of s'mores (heavenlier!), where to get the best quesadillas, pizza and more. I am not about to eat only kale chips and hummus the rest of my life, altho I have no problem adding them to the foods I eat.
For now, I do want to try to boost my wbc count so I can begin taking Ibrance again. A bit of tweaking with diet and supplements may help and it's worth a try.
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Good morning all - sunny Saturday here in Alberta.
changed my name and DivineMrsM - I wonder if the spring weather has caused some of us to look at our numbers and wonder what to do differently (or not), I had ct and bone scans done April 10, and met with my MO Thursday and I asked him those very things about nutrition, supplements etc. Then I asked the very worrisome (to me) question on alcohol and sugar as I have started craving sugar and having a daily beverage. He said moderation, I said 300g of candy, 2 beer or wine? and he said 'go for it'! I take a Reishi mushroom extract, calcium citrate with D3 and l-lysine daily and try to eat at least one cruciferous green veggie. His said to continue with a healthy diet, exercise and enjoy. Ha Ha I am now wondering if it is because I am stave 4, so the cancer is not actually going anywhere anyway, that he said what he said?! I have been stable since November 2017.
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Divine, just a thought. When I had original chemo, my white count tanked, as is common. My MO gave me something called Granix, a subq injection for 3-5 days in a row to raise it quickly. It worked great. It is an easy injection because it is subcutaneous. I got them (like Xgeva) in my stomach where I have plenty of fat to make it pain-free. I know no one seems to get Neulasta but maybe Granix? The biggest issue is traveling to the MO's office every day to get it. I have a very short easy trip, so I don't mind. I'm hoping that your MO lowers your dose so this doesn't happen again. It may be just a matter of waiting this time. What I read about stress and wbc online seems to say stress RAISES it. We should all have no problem with it being too low. Yeah, right.
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Yes - never a bad thing to try and clean up one's diet once in a while! Good luck Divine! I hope that you are able to bring your counts back up a bit. One thing that I HAVE seen that has worked in clinic, is moxabustion treatments. This is typically done by a trained acupuncturist. You don't have to necessarily have the acupuncture itself, but the moxa DOES increase neutrophils. I have seen it work and have used it when I worked in an oncology clinic (based in acupuncture, Chinese herbal medicine and naturopathic medicine). If you can find an acupuncturist near you who is willing to do moxa on certain points, it would be worth it. If you find someone who doesn't know what to do exactly, you can PM me and I will help them choose which points work best. Just another idea!
Hugs,
Philly
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Thanks for all the good info on this page. I was ready to do the "cure me" way, but I can't stand Kale lol. Good to know that some of you have checked the "all cure way". Not sure what outliers is...please explain. Thanks Jaycee49 for that info.0
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airlinegal, my understanding of the general definition of an outlier in reference to having metastatic breast cancer is a woman (could also be a man) whose response to medical treatment is far outside the normal range of the average response.
janky, I think your mo has probably seen enough to know abstinence is not a cure all. We all know people who lived clean lifestyles in diet, exercise and environment and still came up diagnosed with a chronic or terminal illness. And on the other hand, I know those people who are obese, drink, smoke, deal with high amounts of stress yet keep plugging away at life, never inconvenienced with illness or disease. So whether we have our health or are stage iv something, its a good philosophy: “moderation in all things."
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In 25 years I've seen people (and myself) do cancer "every-which-a-way". Some friends have had mysterious treatments where they had their blood taken "off the books" by a nurse in Memphis and shipped via FedEx to Germany where its was converted into "cell therapy", then injected again on a pricey trip to the Bahamas. Some of these stopped conventional therapy because they were given lists of people who had been cured. We researched and learned that the theory had been tested years earlier and failed. Some handed over their multiple $10,000 cash payments anyway and the outcome was not good. One of those said that at least she got to see the Bahamas before she died.
One friend did coffee enemas every day after lunch....at work.
Other friends grew and ate their own organic vegetables. One ate only raw foods. One would not touch anything with sugar and I remember sharing her fake M&Ms made from some organic substitute for chocolate. I didn't criticize because I believe we each have to do this our own way and I never underestimate the benefit of making changes even if it is purely a psychological benefit.
I do believe good nutrition is a valuable thing but I learned something with this latest MBC journey. You can decide to change everything and pile on the cruciferous vegetables. You can buy fresh kale juice at Whole Foods for $8.00 a pop. Then one day you might stand in front of your fridge weighing your options....Would I rather slug down this nasty juice or die?.....and death wins.
All this to say, if you've chosen the route of eating what feeds your soul, good for you or if it's packing in only nutritious stuff even if you have to hold your nose, more power to you. In these years I've done it all the ways and I'm not sorry for any of them. (I'm sitting here eating legit M&Ms as I write this!)
I've said it before about the kale juice....If I drink it I might live longer or (drum roll) it might just SEEM longer!
Love from PatGMc
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What a beautifully written post, Patg! I agree with what you’ve said. My eyes teared up when I got to the part about “eat what feeds your soul." Good advice!
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pat you’re a mess too funny. I ordered kale juice at Whole Foods and paid a whopping pricey amount took two sips to convince myself that it tastes as bad or worse both times and as I walked out the door I dropped it right in the garbage.
I’ve tried tumericcalcium spirulina multivitamin astragalus omega oil b-12 folic acid and acupuncture. I have no idea what works or not. I know that ibrance and faslodex have had a cumulative effect on how I feel and I try to fight the fatigue feeling daily.
My WBC are consistently low compared to “normal” non cancer patients. Once in almost two years I got neulasta. I’ve reduced my ibrance several times nothing seems to really change my tired feeling and blood count. I took an extra week off once due to radiation.
I’ve had conventional chemo treatment in 2003 and it was brutal especially in comparison to the ibrance cocktail of this era.
Have a great weekend!
Tanya
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Tanya, I bet they recycle a lot of that kale juice from the garbage can. Maybe I got yours!
About the supplements, folks: You might want to consider these when you weigh the origin of your various side effects. I take most of the same supplements my husband takes so when his doctor said he needed magnesium, I started that too, like a dummy. (This was while I was NED for some years after my first metastasis.) For 8 months I did something I had never done.....projectile vomiting with no warning plus I had new-to-me headaches. I began to think I had brain mets so I made an appointment for an MRI. Weeks before going I ran out of the magnesium and, lo and behold, the nausea eased. Turns out, when I did all the tests my magnesium was high. All this to conclude, it became obvious that I had magnesium-induced-vomiting. No brain tumor. Just because these pills are "natural", herbal, whatever....doesn't mean they can't have side effects.
Love from PatGMc
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absolutely Pat!
I constantly have patients who have self-prescribed supplements and they don’t really know if or why they need them. They actually do not show any need for medical nutrition supplementation but there’s SUCH a push out there for people to take supplements and the industry is booming! It is an INDUSTRY.
Yes some supplements we do need, some we don’t. But taking supplements Willynilly without it being overseen by a trained and licensed medical practitioner is simply dangerous. All things can be toxic, including supplements and herbs if taken incorrectly or if they are not needed.
Most of the time in my clinic I am working to get people OFF the multitudes of vitamins and supplements they are on. It is amazing how long the lists can get! People often end up feeling so much better once they are no longer taking 100 supplements that they don’t need.
This topic makes me so bananas!!
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A lot of people spend boo-coo bucks on supplements, something I would never do. But I think in a case where a person has an mbc diagnosis, taking the vitamins gives a sense of taking some form of control in a situation where much is out of your hands.
I carefully researched what kinds of supplements I wanted to add to my daily routine. Calcium and Vitamin D were added due to my having zometa iv’s. Then I added the fish oil and turmeric/curcurmin. And that was it for about 8 years.
When I began Ibrance last month, the pharmacist said to stop taking the turmeric. Now that I added a multivitamin, I see it has enough daily Vitamin D that I will discontinue the Vitamin D capsule. And I’m switching calcium supplements so as not to overload on it.
It’s hard to find a multivitamin that has only 100% daily requirements. Many ramp up some of the included vitamins to 150%, 175%, 200%. Just give me the basics.0 -
I’d like to know what is a daily suggested does of Vitamin D?
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For my fibromyalgia I take 5000 D3 daily. There is a blood test available to see if you are low. I was. Even living in Florida. If I miss a few days of it, I can really notice I ache more.
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divine - I get my D levels checked. In my practice, I want them to be at least 40. If lower, then the amount is decided upon (depending on how much lower), and then D gets rechecked through bloodwork to make sure it is working.
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Morning all. I went to the hospital lab today for my monthly bloodwork. So I stopped by the Medical Records Dept. I had my every 3 month CT done last Wednesday and had not heard anything. I see the MO tomorrow for my appt, but I wanted to be prepared and know the CT results before I see the doc. I have posted here that the last CT showed somethin somethin new in the liver--artifact or starting of a new lesion. Well..... This CT shows nothing new !!!!! "Stable lesion inferiorly in lateral segment of left hepatic lobe lesion consistent with known metastatic disease having similar appearance to Jan 2019. Questioned metastatic lesion left lateral aspect of left hepatic lobe on prior image not confirmed today with this felt to have represented artifact as previously suspected." Woohoo.
I thanked the Lord all the way home. And I am very glad things are stable. I post here sometimes with a negative view, but I am thankful. But.... I just always wonder when the shoe will drop. Did the CT miss something like in Jaylea's situation with the esophageal met. I do have a lot of heartburn issues. Or, as I have posted before, could something be growing in the brain and not showing symptoms yet since we do not do brain scans routinely. Will I be one of those that lives with MBC for years or will I progress at any time and not make it to the 5 year mark, or even 3 year mark---I am at 1.5 years. I am trying to have a good outlook, but I live with a dark cloud over me. I know you all can empathize and know what I mean. No one truly understands like this group.
Off I go for the day--groceries and getting the vehicle fixed.
Hugs.
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Candy, celebrating with you and doing the happy dance! Take the time to celebrate the good news and take each day as it comes. I try not to dwell on the "what ifs" or the "next news" as it destroys the joy of today.
Vitamin D3: I was told to take 2000 iu daily. If my D3 goes low, then I am put on 5000 iu until it improves. I also get another 600 in my calcium/magnesium/d3/zinc pill I also take. The combination seems to work for me.
Chris
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candy, I agree with IntoLight that for the time being, be happy with the ct scan report. If and when the time comes there is a change, you will deal,with it at that time. There is no use giving time to that worry now. Push the worry away when it attempts to invade. Allow yourself to feel the goodness of being okay. Really let that feeling sink in.
Regarding Vitamin D, my primary has tested me for that since I was dx with mbc. At the time of diagnosis it was 19! I was given a prescription which brought it up to normal range and then I started taking over the counter Vit D. Over the last five years its been between 48 - 58, and interestingly, a few months prior to my scan that showed progression, the Vit D level had dropped to 40, even tho I was taking the same supplements as always. My onc tests for the CA 15-3 antigen, and it’s been within normal range, hardly any fluctuation; I know its not always a reliable indicator.
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I read in some research article regarding metastatic breast cancer and bony metastasis that pretty much across the board everyone will have low vitamin D levels. It is a hallmark of bony disease. I will see if I can find that article somewhee
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