Ibrance (Palbociclib)
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Hi Jaycee, I need to make a correction. I don’t have RXAssured for my pharmacy. I have Rx To Go. its an in-house pharmacy with Florida Cancer Specialists. There’s a a few of these centers around the State. I bet they use that “ FundFinder” for their patients !
Good info for everyone on this site. I’m going to look into getting assistance for my Fulvestrant as financial person thought I made too much but now I wonder. Fulvestrant comes from another pharmacy.....I believe. I’ll keep you up on what I find and I’ll use your site to look as well!
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Thanks Cure-ious and Ginny!
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Anne Loeser's summary of the San Antonio Breast Cancer Symposium 2019:
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Hi, Pat!
Good to see you here -- hope you are doing well.
That summary from Anne (Bestbird) is really terrific.
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Congrats on the A+ news Jack5ie!!! Woo hoo!!!
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Hi Pat, always good to hear from you.
Thank you for the link to the summary, so many possibilities, it gives me hope. I am going to give the summary to my breast cancer care nurse, she is always interested in information I gain from this site and what's ahead, but doesn't have time to research -too busy keeping up with current treatments.
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denny10, thank you for the fart. Still laughing. Did not play on pinterest, but did open in YouTube. I'll blame the hippos the next trime rather than the cat or dog.
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Hi again everyone, well 4 years this January with MBC. I had good news, MO says my PET scan continues to look good.Thanks for the good wishes. That’s after about 20 months of IBrance and the rest of the time till now on only Letrozole. In fact, I started taking it only every other day about two months ago with my MO’s approval because of the side effects. I have more energy but still the aches and pains. The PET did show bursitis in hip and shoulder where most of pain is. Probably the result of normal aging. A previous MRI showed deterioration in spine at L 4 &5, probably contributing to my sciatica pain. Oh the joys of old age! But I’m still here!
It’s good to see old friends stopping in. PatgMc, I hope you are doing well on the new meds. You have been such a wonderful cheerleader for all of us.
Jaycee, hope you get equally good results on your PET too. I’m sure everyone appreciates the knowledge you share on the financial business of this awful disease. It’s enough to worry about our treatment and tests and then having to worry about how to pay for all this can drive you mad.
Lynn, so glad to see you again and here that you are still stable and sailing. Keep checking back in and share some photos of your next trip on the water.
Congratulations Jack51E on your great scan.
Intolight, hope you can change to 100 mg Ibrance and that your virus clears up ASAP! It’s been much too long. Maybe the drop in dose will help.
Love and prayers to all of you, stay strong!
Faith (in the future
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I was taken off of Ibrance this week because I developed pneumonitis. I've just been through several days of hell because I feel like there aren't many options of what to do now. My oncologist says we will continue with the Faslodex, and he sent in a sample of my original tumors frommy breast to a lab to see if I have the gene mutation so I can take Piqray. I don't know what will happen if I don't have the gene mutation. My husband and I are crying constantly because we don't feel a whole lot of hope right now. I have bone mets and I am in a lot of pain that is partially controlled by Dilaudid. I'm just wondering if there are other people out there in my position. How are you handling the situation? I'm scheduled to talk to my social worker on Monday from palliative care, but I am really struggling right now.
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Dear BrennieJoyce,
What about the other drugs in the same "class" as Ibrance? Verzenio or Kisqali? Can you talk with your MO about those? I don't think the entire class has the same risk of pneumonitis, but I haven't researched it. Also, there are other drugs available through clinical trials or possibly compassionate use. Please don't despair! One suggestion I have is that you may want to get a second opinion from another MO, preferably at a large academic center, that is NCI-designated. Good luck.
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What about Afinitor? What about Xeloda? My non-oncologist mind came up with those two while I ate breakfast. And your mets may not be the same as your original tumor. What about radiation for the pain? You may need a second opinion.
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Brenniejoyce, it's very disappointing when you have to discontinue a promising treatment like Ibrance because of a serious side effect. Unfortunatelly, pneumonitis is a class-wide effect for CDK4//6 inhibitors, and your doctor might be reluctant to try one of the other agents, at least in the near future.
However, Faslodex can work on it's own for quite a while, so you have not "burned through" your first line of treatment at this time - hopefully your next set of scans show that Faslodex alone is keeping the mets under control, and you get to stay on it for a good long time. Even if that's not the case, as Jaycee mentioned, there are many other options left, even without starting to think about iv chemo. In the mean time, if your pain is severe, you can ask for palliative radiation to the painful spots, as BevJen suggested - this would give you relatively quick pain relief and allow some time for Faslodex to start working. It's very hard to have a positive outlook when you're in severe pain, and I hope that your medical team is proactive in dealing with the pain.
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Joyce, is your MO sure that the pneumonitis is caused by Ibrance? I've been reading about how it can be a DELAYED reaction to chemo. Like your earlier AC + T. How long have you been on Ibrance? It seems really short. Can pneumonitis happen that fast? Just some questions to consider. Please don't be discouraged. You have many options and time to think about them. Slow down and breathe.
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Brenniejoyce, I am saddened to hear of your development and I will pray the docs find the right medicine for you. The others are correct that there are so many other treatments out there. Hopefully there is one just right for you. Pallative care doesn't mean end care, it means treatment care, and we all deserve the most and best treatment and support possible.
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Hi all.
Just posting to say I am still here. I read all of your posts and I will chime in as needed. Started cycle 26 last week--woohoo. Scans in Feb--- no date yet, awaiting insurance approval.
Hugs to all.
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Brenniejoyce when my first Onc left and she recommended the palliative Onc in the group. Was definitely concerned. As IntoLight said it doesn’t mean end care. The Pallative Onc was the best thing for me and I am so thankful for her. Hang in there and if necessary get a 2nd opinion. Will be saying prayers for you.0
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Thank you for all your well wishes!
Faith...so happy for your news as well!
Brenniejoyce...please try not to despair. There are other options out there. If need be, get a 2nd opinion. Even if only for peace of mind.
As always, you are all in my thoughts and prayers.
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Congrats on the A+ Jackie!
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Hello friends and happy new year! I just got caught up and I was so sad to see that Netta had some progression - and pain - if you are still reading - please know I am thinking of you!
I was so please to hear from old friends like Pat (big smiles for your check in posts) Jens, Philly, and Joyner (yay for good news and a new boat!) and super excited to read of Faith’s recent scans. So much hope here, I’ve really missed you all. And to all of you who posted funny flatulence humor, you made my day!
I am doing well now 2 years into my dx. I took a week off of Ibrance prior to having my wisdom tooth out last week and I will restart 1 week after. This is my first time off of Ibrance since I started and I haven’t noticed any change in side effects.... (though mine have never been awful) Maybe it’s just not enough time off or maybe Faslodex causes more than I realize. As an ONJ precaution, we only did 1 tooth so assuming this heals well, I will do the other 3 next. So far, so good.
BrenieJoyce - so sorry you are facing the fear of changing meds. The good news is that progression is NOT what’s causing this amd as others have said there are many other options for you. This feels like a good moment for a 2nd opinion. Sending you a big dose of HOPE - you have every reason to believe you will find a good solution here.
Jaycee - hoping you read about your good scan news next week!
Love to all,
Lauren
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I previously asked others here if they had experience going through the COBRA insurance process. Unfortunately, apparently no one did. As a result, I thought I'd provide an update of what we're going through. It's not been fun especially given the high cost of Ibrance!
Obviously, her old company has to send her the COBRA application in order for her to start COBRA. We tried to expedite this, but they said they can't send her the application until after her termination from the company. Although she retired at the end of the year, she still hasn't received the COBRA application. After she fills that out, she'll have to wait for approval from the 3rd party who implements COBRA for the insurance company. This will likely take weeks. Once approved, her insurance will be retroactive to her last day of work (along with our premiums), but in the meantime, it appears to medical providers as though we have no insurance.
So far, it's been quite difficult and costly. We ordered her next cycle of Ibrance, but had to pay out of pocket for that. The cost was also $3,000 more than what the insurance company has been paying. Once she's approved and on COBRA, we can submit a claim for it, but it's not clear to me if we'll be reimbursed for the difference between what the insurance company has been paying and what we had to pay (the $3,000).
Then today we had an oncologist appointment to verify her blood work was OK to start the next cycle. Their initial position was that since we don't have insurance (yet), we have to delay the blood work and exam, which, of course, would delay her next cycle indefinitely. We pushed back on this and finally, they agreed to charge us for the visit (and the blood work), and we'll just have to fight it out with the insurance company once eventually COBRA kicks in retroactively to January 1, 2020.
All of this is requiring an awful lot of out of pocket expenses with no guarantee that the difference between what the insurance has negotiated and normally pays and what we have to pay will be reimbursed. We tried unsuccessfully to coordinate all this ahead of time with her former employer, the insurance company, the 3rd party COBRA administrator, and her Ibrance pharmacy, but simply got the run-around. This seems like a huge problem especially for expensive life-critical drugs such as Ibrance. I just thought I'd let folks know what we're going through. I'll provide a separate update when we have to submit all of these out of pocket expenses to the insurance company.
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BLMike,
This is a ridiculous story. I would find out the telephone number of your state's insurance commission and promptly call them and tell them this saga. I don't know where you live, but they should be able to help you.
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BLMike, that is indeed a crazy story filled with mounds of frustration. Our system is indeed a mess...
Lauren, so glad you checked in and are doing well with your tooth. Hoping the others go as smooth.
Those battling the freeze and new rounds of storms, stay safe today.
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Hello ladies and gents. I'm not making any progress on the jaw bone that is deteriorating. Saw the oral surgeon last week. He has set me up for a hospital visit the first of March. He is planning on operating and removing some more jaw bone at that time. No idea what the outcome will be but always can be optimistic. Right now I'm taking lots of pain pills, salt water rinse and oral rinse. A very bothersome thing is the odor in my mouth which I cannot seem to get under control. Any ideas on what to use would be very much appreciated. The rinses don't seem to be helping and honestly it's disgusting.
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Mike... what a shocker! I know we have the NHS here in Scotland and Ibrance was cleared in Dec 2017 for use in the system, from which I currently benefit. However I also have private insurance cover with BUPA. At no point would we be in your situation even although I have previously had to fight for cover for reconstructive surgery and the like. It is to your wife’s benefit that you are able to fight her corner intelligently. Good luck with that ... and I feel like saying - ask them what it would be like if it was their wife, daughter, sister, mother or indeed father, brother in this situation. You are seriously under the cosh and someone needs to cut you a break. In fact I did that with Bupa 12 years ago on my surgeon’s advice and they did actually cut me a big break in terms of cover continuity. Worth a try?
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Hi Wandering,
I just developed ONJ. I don't have any recommendations for that as I am just starting to deal with it. I did find another thread that talks about it. There are a few ladies that posted, maybe one of them has a suggestion.
https://community.breastcancer.org/forum/8/topics/870698?page=1#idx_7
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Wandering - I don't know if this would help, but I use a mix of salt, baking soda, and peppermint oil (just a few drops) to prevent mouth sores. I know there's too much oil if it's uncomfortable to gargle with it.
Yesterday I started cycle 2 of Ibrance at 125 mg. My TMs have dropped, but still very high. I do have fatigue and more joint pain, but the worst side effect has been a rash during the off week. It started the day after I missed taking an antihistamine, and it's now subsiding. My WBC/ANC were very low at 2.9/0.5, but my MO didn't delay the next cycle or drop the dosage. My other counts were normal. Guess we'll see how the next few weeks go. If the rash returns, my MO said he might switch meds. I don't plan on skipping the antihistamine anymore.
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Hi Serenity,
I found Turkey tail to help with the wbc counts. The cancer center NP prescribed it as it seems to help cancer patients. It's kinda of pricey. I think any of the medical mushrooms would help though.
You might want to consider getting a second opinion if your MO wants to take you off of ibrance for something other than progression. This combo has worked so long for quite a few ladies.
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Hi folks. I am so glad that I found this forum. I will certainly be following it closely and will share my experiences.
I am currently on my second cycle of Ibrance/letrosole and so far I have had minimal side effect. I do get tired and my hair does seem to be thinning. It is winter and I don't know if the loss of hair is from the dry air or because of the treatment.
I have been diagnosed with Stage IV metastatic cancer as there is a mass on my left lung. I did have a bronchoscopy last month. My pulmonologist didn't see cancer in the samples, but the radiologist wants to classify it as inconclusive. I could have another biopsy that is risky, but I decided to start treatment instead. All the doctors feel that is the mass is malignant iti is most likely breast cancer rather than lung cancer. I will make a decision about having this biopsy when I have my scans in two months. If the mass has not changed, then I will have the biopsy.
Keeping my fingers crossed. If it's truly non cancerous, that would change my stage from IV to IIA.
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Hello VFP. Welcome to this forum although I am sorry you have to be here. We welcome all experiences and questions.
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Welcome vfp. Sorry to see you here, but let's hope the mass turns out to be benign.
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