Ibrance (Palbociclib)
Comments
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candy678- True that the trial isn’t over but since the primary completion date is past, I sent a message to the investigator in charge. I was told to expect an answer by the end of the week. I will post an update if she can give me an inkling of the success rate so far.
Bevjan - thanks for the suggestion to email about the study. I would have never thought to do that in my own.
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Candy, I meant to include the exception of pain meds. Doctors are very wary about them. I got used to 1 mg of Ativan to sleep and was cut back to .5 mg. Doesn't work as well but can't get more.
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RK2020---Thank you for emailing the trial investigator. If you hear anything, either post here or PM me. I would like to know if they are having good results with the 5/2 schedule. I may suggest that to my MO if it looks to be successful--both in neutropenia numbers and lack of progression numbers. Maybe that would keep my counts up while still controlling the cancer. Win win.
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BevJen, Great report! Glad the ibrance is continuing for you.
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Wow, I’ve now hit my all time low ANC of 470. This cycle was after a 6 week Ibrance break which got me an ANC of 4200. I had a similar crash in January after a 4 week break due to surgery, but that one “only” got as low as 580. So I wait another week and retest. I did feel good on the break but now I guess I’m paying for it and my body needs to adjust all over again. Hopefully next week is a lot better!
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Rosie- That is low. Where are you in your cycle with that number? What dose are you on?
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Candy, Today was after my week off, 125 mg. MO has mentioned reducing the dosage but it has come up after 2 weeks off so I stayed on 125. It might be time to reduce.
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Interesting posts .
Scans - frequency and what kinds. I've been getting CT scans every three months. The last PET scan Sept 2019. Good news, Sept 2019 PET 2.5 cm, April 2020 CT 7 mm. Next CT is August. I asked if the tumor shrinks to oblivion, would a PET be scheduled. to look for rogue cells I was told no. Concern is that PET has increased radiation. So it seems like PET only used for new cancer and if cancer already diagnosed from biopsy? How will the cancer be monitored ? I think MO said that scans only find 1 mm and larger, and not individual cells. Not sure if that is CT, PET or both.
Ibrance Dose and Schedule - Since Sept 2019 I've been taking 125 mg 21 on/ 7 off. At June visit, MO mentioned decreasing it to 100mg because studies show it is just as effective. There was no mention of schedule options. So why the higher dose if lower is just as effective ? or is that type of information just now being recognized? Is the 2 weeks on/ 2weeks off a clinical trial or used in regular treatment? MO also said that even if the tumor does shrink to oblivion, she would still recommend the Ibrance/Arimidex - I guess for those rogue cells.
Broccolli Extract - very interesting. David Servan-Screibner in "Anti Cancer, A new way of Living" cites a study someone did on various plant/fuit extracts and various cancer cells in a petri dish. Brussle sprouts, Broccoli, Kale did well for BC. There was a comment though, that what works in a petri dish often does not work in humans. Some extracts did better for some cancers while other extracts did better for other cancers. I'm trying to like brussle sprouts.
Hair Thinning IR and hopes - Faith8444 - interesting post on IR and hair loss. On a free series I watched called "Proven", looking at everything from gut health to pain to cancer to brain health, it was mentioned that IR is being explored for cognitive disfunction, by shining it up the nostrils. The only information I have found is the company selling the device. https://vielight.com/ . I've seen devices for arthritis that use IR, and am really tempted to splurge and try one. The Arimidex is definitely causing stiffness in hands., MO agreed. MO said the hair loss was also Arimidex, not Ibrance. But it seems like several people have mentioned they are sure it is the Ibrance.
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Just wanted to check in and say congrats to BevJen, so very glad you get to keep dancing with us
Sondra, you made me laugh outloud, thank you
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Also popping in to say how happy I am to hear BevJens report. I know how worried you were and this news brings me joy!
Hugs, Penny
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BevJen!! Somehow I missed your happy post!!
Here are Ibrance Dancers from Mighty Mouse, celebrating the good news!
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Thanks, everyone. I'm afraid that this may only be short lived because those tumor markers (or at least one of them) keep rising.
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BevJen - Those TMs are so frustrating! I hope they head down at the next check.
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BevJen, You are 14 years into Stage IV, so no reason to give in, clearly very endocrine-dependent. What can be added to extend the response?
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BevJen - good report, despite the TM's and I am happy you are still on Ibrance and advocated to add Zometa!
Love the mighty mouse dancers!
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Cure-ious,
I've discussed with my MO what could be added to extend Ibrance. She's very research oriented and cautious. So for now, anything I am adding zometa starting next month. I don't know if that will help, but we'll see. In reality, even though the tumor markers are going up slowly, my MO isn't going to change me until there is some progression on scans. So we'll see how it goes. But I think that Piqray is in my future. I'm bracing myself bc of side effects.
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BevJen-- I don't think it clicked with me that you have been Stage 4 for so long. Where was your first metastasis? Liver in 2019, and you said they just diagnosed bone recently. And you just started targeted therapy in 2019.
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Good morning ladies having a pretty rough morning. I just got a notice in the mail from Optumrx that sends me my Ibrance that I've been denied coverage for next cycle (cycle 9). I haven't started cycle 8 yet, I have it, but I'm being denied next cycle. The paperwork says this medicine is only covered if you don't show evidence of progressive disease while on Ibrance and that the information provided does not show you meet the criteria above. Well this explains why refills have been added to Walmart specialty rx instead, which I discovered listed there, Ibrance with 4 refills in the list next to my other prescriptions. But the greater question is have I progressed on Ibrance but not enough MO wants me to try to stay with it longer??? MO asked to see me in person instead of televisit beginning of next month. Oh no....not already...Been sitting here with my hands trembling wondering if Walmart specialty will deny too....but the reading " don't show evidence of disease progression while on Ibrance"...." you don't meet the criteria" that has me looping that over and over....holy cow this is not a good morning and I'm really not looking forward to MO appointment on the 8th of July, in the meantime I have cycle 8, and I'll take it since I haven't been told to stop and I have it....wow just wow.
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Rabbit----So you are saying you have not talked to your MO yet, but you fear you have had progression you don't know about yet?? That the insurance company knows something you don't?
I would call your MO today and tell them of the letter and ask to speak to MO before your scheduled appt in July--like today!!
If you have had recent progression, your MO needs to give you that news, not in a letter from your insurance.
Call today.
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Rabbit,
I agree with Candy. Call your doc. WTH? Hope there is some sort of an error.
Candy,
Yes, I've technically been stage 4 since 2006, two years after I finished my initial treatment (chemo and radiation) for Stage IIIc found in 2003. I had a single site metastasis to my cervix. Actually, it was weirder than that -- my gynecologist found a polyp during a routine gyn exam and said -- oh, that's interesting. Just to be safe, I think I'll send it out for biopsy. The biopsy report came back as ILC, same as my 2003 cancer. The pathologist said that there was a small focus of ILC cells at the very tip of the very small polyp -- so a weird finding, but metastasis just the same. At that time, my MO could only find 8 reported cases in the world of something similar. I think that now they know that ILC can go to weird places, but at that time, it wasn't as well known. I had a complete hysterectomy as a result (nothing else found) and I was on letrozole from 2006 until May of 2019. Started faslodex in June of 2019 and Ibrance in August of 2019 (in between had my microwave ablation of the largest liver met).
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BevJen--- Wow. Cancer is sure weird. But great that nothing else grew from 2006-2019.
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Candy,
Yeah, but now I have a SH**load of mutations that were probably all festering during those years.
I know that they haven't proven that cancer or cancer flareups are related to stress, but in my case, I can clearly document the stress before my 2006 metastasis and the stress before the current flareup. Not that my life was stress free in the interim but there were significant stressors those two times.
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Rabbit, I wouldn't get too crazy right away. Ibrance is REALLY expensive and I can imagine lots of creative people at insurance companies sitting around trying to figure out ways not to pay for it. They probably don't understand exactly what "progression" means for us. I have slight "progression" (small growth of nodule) every scan. Is that progression? Depends on who you ask.
I am cracking up hearing Bev (miss pussy foot) and Candy (miss walk on egg shells) telling you to get tough with your MO. LOL.
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Candy, I guess basically that's what I'm trying to say. Insurance company knows something I don't. Just left a message for MO for her or her nurse to get back with me and let me know what the heck is going on. Wonder if the idea was to tell me in person but the paperwork beat the appt. My center is always slammed, I'm sure it's worse now with everything going on now. If optumrx denies me doesn't that stand to reason another specialty pharmacy would? I'll be asking my MO that along with, have I progressed? Yes or No. It took me alot of pacing to make that call and leave that message....I guess I'm scared to hear confirmation.
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Jaycee,
I can be pretty insistent with my MO when I think it's worth it. But I still believe in the old adage that it's easier to catch flies with honey than with vinegar, or whatever that saying is. I also think it's easier to get people to come over to your side when you can convince them that maybe they think the same way as you are thinking, and that something is their idea, not yours.
But happy to provide amusement for any and all. I still think Rabbit should call her MO.
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Bev, I think she should call MO, too. (She did now.) I just always consider the financial side with something this expensive. And sometimes there are interesting connections between insurance and pharmacies. For instance, I got Ibrance from one specialty pharmacy for the first few months and then my drug insurance (Humana) started requiring me to get it from Humana's specialty pharmacy. Yup, the insurance company owns a specialty pharmacy. The lines are blurred and there seems to be a competition to see who gets the most money since there is so much to be had.
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OK, I found it. Optumrx and Walmart are connected. If you have Optumrx, you MUST buy specialty drugs at Walmart specialty pharmacy. I may be vinegar but I search and find answers.
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- All specialty drugs under the Premier Plan, Contribution, Saver Plan, Local Plans, and Select Local Plan must be purchased through a Walmart Specialty Pharmacy or OptumRx. If a specialty drug is purchased from another retail pharmacy, it will not be covered under the plan. You should call a Walmart Specialty Pharmacy or OptumRxto inquire about the availability of your prescription drugs under the plan.
https://one.walmart.com/content/usone/en_us/me/health/health-plans/pharmacy-benefits-.html
0 - All specialty drugs under the Premier Plan, Contribution, Saver Plan, Local Plans, and Select Local Plan must be purchased through a Walmart Specialty Pharmacy or OptumRx. If a specialty drug is purchased from another retail pharmacy, it will not be covered under the plan. You should call a Walmart Specialty Pharmacy or OptumRxto inquire about the availability of your prescription drugs under the plan.
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Jaycee,
I totally agree with you about the whole incestuous medical machine (especially the pharmacy and insurance companies). I certainly don't put it past them to make people jump through hoops so that they can manipulate drug purchases, delay them, whatever. Interesting stuff that you found about OptumRX and Walmart, too.
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Miss Rabbit...I'm glad you called your MO. Let us know what she says. 🤞
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