Faslodex + Pablociclib(Ibrance) treatment combination -
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Great photo Claire! Thank you for sharing! And yes, I really could use some stability with those darn tumor markers! Glad your CT was goodand yes, hilarious that they are noticing lumps in your hips.
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Hi Kimberly and SP - thanks for liking my pic. It's good to share what we look like now -the bangs are mine, the longer hair is the halo. Mechbee - I have been on Ibrance + faslodex for 16 rounds and use NO PAIN meds. Only once did the shots sting. Please have your nurse warm the shots (as they are very viscous) and go in slowly. I start round #17 on Monday, stable scan last month. I use a silk blanket as it keeps me warm or cool as needed. lol on our body temps with no estrogen left thanks to arimidex, etc.
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Dianarose, first of all, I want to say how good it is to hear from you not in the hospital. So, about the chills. Since switching from letrozole to Faslodex, I feel colder. In other words, I am back to my usual chilly self, wearing a sweater when others do not need one. And my hot flashes, while not as numerous or intense, are often followed immediately by chills.
LaLady, wow, your own bangs with the halo. It looks so natural and beautiful. So glad your scan was stable! I love the idea of a silk blanket; will look for one. Silk is a wonderful thing. I have a silk pillowcase.
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Off for blood work this morning. Worried platelets will be too low. This such a roller coaster ride. I have three pills left to finish my first cycle. Hopefully will be able to finish and continue.
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Dianarose, I hope your blood counts are good so you can complete cycle #1. Let us know how it went.
Lalady, I never would have guessed that you were wearing a halo in that picture. It looks beautiful and totally natural.
Lynne
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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!
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Pajim- thanks for the tip
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Wow, Pam. That is really interesting and just a bit crazy. It does make me wonder how accurate all those blood tests really are! How long do you suppose the counts remain elevated? I will tell you one thing, I am going to run around the parking lot before I have my next round of blood tests. Of course, with my luck after all that running around, they will tell me that my heart rate and blood pressure, that are usually in the low-normal range, are elevated. Lol.
Lynne
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I think it's insane. I can understand that maybe you could go from 990 to 1100 or so but 40% higher? Now I need to go look up the physiologic reason for this.
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I have been waiting all day for someone to call about my labs this morning. I even left a message so I say the hell with it and am going to continue to finish my first cycle unless I hear from someone telling me different.
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Pajim - very very interesting tip. Thank you for putting it on the board. Chalk one up for exercise. Boo yeah.
>Z<
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I finally talked to the nurse who hasn't talked to MO yet. Platelets dropped some to 98, white count 4.4 and hemoglobin 11.1 so unless I hear back I can finish the cycle which is three days. The stress of waiting and not knowing is terrible
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Diana, Thank goodness they finally at least got back to you. Your white count and hemoglobin are much higher than mine. My MO would put on a big smile for those numbers. I hope you can finish up this cycle. Three more pills, woohoo!
Lynn
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Lynn- I think my white count is up due to a cronic kidney infection. I was on a strong dose of antibiotics for two weeks and it never goes away.
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Nurse called again and said MO wants me to skip the last three Ibrance and have my platelets checked again on Thursday. First thing I thought of was, well there goes $1500.00 .
Has anyone else had to cut their cycle short
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Dianarose, I never had my cycle cut short, but I know it does happen. I think that in your case, they are considering your past struggles with low platelets and are being cautious. It is good that your MO is looking at you as an individual. I laughed when I read that you are thinking of the wasted $1500. Every time I take a pill, I think "$500." I suspect I would dive into the trash can to retrieve one of those suckers if I ever dropped one in there. The good news is that you got through most of the cycle and your counts are pretty darn good. Hopefully, if your platelets bounce back within a week, your MO will allow you to resume taking Ibrance.
Lynne
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Dianarose, I don't think missing 3 doses is a big deal. But save those 3 pills for an unforeseen need -- like dropping one down a drain or dropping it and stepping on it (something others in a FB group I'm in have reported doing), or just to have as backup if a future refill gets delayed, which happened to me. Having those extras on-hand will be a relief if any of those things happen.
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The specialty pharmacy representative to whom I am assigned was solemnly telling me that if I "vomited after taking a pill", I should not take another but wait for the next day's dose. I replied that if that were to happen, I would "rinse it off and swallow it again!!". My husband was standing behind me, and he said, "I'd help you!"...and he is actually quite fastidious! I don't think that they "get" how extreme the cost of this product is to us as patients!
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Joy- that was very funny. Thank you for making me laugh. I was just reading that walking and brisk walking can increase platelets. If really low no exercise at all. Also no raw vegetables. I had salad with my supper of course. Also said drink plenty of water but at room temperature not cold. It mentioned eating Alo Vera. Didn't know you could eat that.
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I once lost two pills. Was on the road and left my pill box behind. Oh well. 19 day cycle. I can't remember if I even mentioned to my onc.
Dianarose, keep your extra three "just in case".
Glad to hear someone else thinks "$500 down the hatch!" I'm sure my insurance company isn't paying that much but still.
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Pajim- I should put them in our safety deposit box at the bank. Lol
I think Thursday before my appointment I will jog around the parking lot. Well maybe not jog who am I kidding. I will have hubby park further away from the door.
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Joy, I am still laughing as I try to imagine the look on the face of that pharmacy rep. Your comments was undoubtedly the hot topic in that office.
You are right, Pam, virtual all insurance companies pay less than the total retail cost for drugs. Unfortunately, I have Medicare D, and since Medicare is prohibited by law from negotiating prices of prescription drugs, and Medicare recipients are not eligible for Pfizer's $10 copay program. This year Medicare pays $11,248 per month, and I pay almost $600 for Ibrance. ( Except in January when I had to pay more than $3,000.) Broken system, I think.
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50'sgirl, you and I are paying the exact same thing for Ibrance. I wonder: since I started in February (with the $3000+) initial payment, which dropped to $558 thereafter per month, do we go back to the $3000+ payment for January and then pay the lesser fee Feb-Dec, or do we get a full 11 months on the lower fee before getting hit with the one big monthly payment.
And yes, I believe that the rep was shocked when I said what I did! They must be so used to quoting this huge cost that it's not "real" money to them anymore.
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Joy, We will have to pay the $3000 again in January when everything gets reset. We have to get through that ititial coverage period, the coverage gap, and then go into the catastrophic coverage before our copay decreases. Luckily? we get through the first two phases in just one month with Ibrance. The coverage really isn't bad at all unless you have a specialty drug. If I didn't have coverage at all, this drug would be way too expensive to take.
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Speaking of cost... My MO's office called me today and said the BCCCT by the state hasn't been renewed and therefore I would owe $800 for my visit today. I have a medicare advantage plan. I said to go ahead and cancel my appointment since I don't have that kind of money. She called me back and said it would only be $38.50 so my appointment is on. The $38.50 is for only the faslodex so I don't know what is gonna happen with the Ibrance. Some of my labs were kinda low so maybe they want me to have some more time off. I have a call into the state to see what has happened.
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HOLY COW! $800? I hope you get things straightened out soon. Sometimes the people rewriting the rules do not stop to think about the personal impact those changes will have on individuals.
Lynne
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For those of you on Medicare part D, have you tried applying directly to Pfizer for free drugs? They do look at your monthly income but not your assets so you might qualify. I was surprised when I did. They needed to know our Social security income and our IRA distributions but that's all. It's certainly worth looking into.
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I have agreed to do a research study for Ibrance. My first phone interview was today. They sent me a detailed diary of questions to fill out. Some parts are on side effects etc... but other stuff is on our well being, costs etc.... I think they are looking to improve our knowledge and better ways to help. I am able to basically write whatever I want. She said they want the truth and to not hold back. I will definitely write about those of you who have to pay so much out of pocket. If there are concerns you would like me to mention please let me know. I have until May first to complete it.
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hi. Starting second cycle of combo today. Was off ibrance for a week. Last 3 days have nausea and today me head feels "swoopy". Should I still be feeling nauseated?
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Well yikes! at the cost. 50sgirl, Medicare is not allowed to negotiate price with the drug companies. It's the law. I'm really sorry to hear that you have to pay a pile of that.
I would second the idea of applying to Pfizer. They want to sell as much drug as possible so have a vested interest in helping you afford your doses.
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