Ibrance (Palbociclib)
Comments
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I just checked my Humana part D claims online. The January co-pay was $2852. (Not paid by me.)
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Jaycee,
I'm with you. If that's the BCBS Part D payment, we should all switch to them!!!
Bev
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I think Jaycee is right and the Medicare copays that are substantially below $600 for any part of the year are somehow provided outside usual Medicare coverage (employer arrangements, hospital subsidies, foundation assistance, some type of local deal depending on income, Medicaid). I've looked into BCBS plans as part of planning for the time I will need to take disability, and I haven't yet found any that would go below a 5% copay, either as part of an Advantage (part C) or Prescription (part D) plan. I've had BCBS of Mass as employer coverage for over a decade, and I love them and how little grief they've given me for medications and tests, so I'd probably go with them for any optional Medicare coverage, but it doesn't look like the copays would be less.
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Hi. I tried to send you a message as I was just reading your original post while I caught myself up. LaurenH is her2+ and takes herceptin along with I/L. I'm not sure if she takes anything else but you might private message her as she obviously has not seen your posts. She's having dental issues right now. She has had excellent results with I/L herceptin and has an interesting story.
Cathy
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Penny78 sorry to hear about the loss of your kitty. He seemed so connected to your family bc if your mom having him first. I remember when we lost our cat Berlios. I was fine until I went to the grocery store and walked down the pet food aisle.
Sending you a hug.
Tanya
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Just wondering about something and didn't know where to post, so I chose this Thread. Bear with me as I explain:
I was talking with someone the other day and they were saying they had appt with their dermatologist for their yearly skin check. You know, head to toe check for possible skin cancers. I have never done this. In fact, at my PCP yearly visit---prior to my breast cancer-- we never looked me over. Some years he didn't even have me get into a gown, just listened to heart and lungs through my clothes. Now with the Stage 4 cancer, it is really not happening. I have had a cyst on my left wrist--ganglion cyst--for probably 4 or 5 years. Was there long before the breast cancer. It has grown slowly ever since. My PCP said it is harmless and that was the end of it. I also have a lot of GERD. Have had touchy stomach for YEARS. I take a daily Pepcid. PCP has never pursued this either. Just script for Pepcid.
I get the feeling that with the MBC he thinks I am a goner already and so why follow up for these other issues.
So long story short, how does your PCP's or other docs treat you all??? I mean, if you had something like this ganglion cyst on your wrist would your PCP do anything further with it? I know our MBC is wwwaaayyy more serious, and maybe I am looking at the gnat, but every time I look at that wrist I think " If I didn't have MBC we would be treating this cyst and the doc would probably recommend I have it removed. But why worry about it now, with the MBC diagnosis." I don't necessarily want surgery on this wrist with the low white counts with the Ibrance use. But I just feel I am not worthy of fixing the problem with the MBC.
Do you all, that are stable with the Ibrance, still do "routine" things--Pap, Mammo, colonscopy, skin checks, etc???? And if something is wrong, i.e. ganglion cyst, would you have it removed or fixed?
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Hi Candy. Your post caught my eye because I had a cyst on my wrist. that had been there for about a year. My onc noted it when I told her and since it did not hurt and moved a bit, she said to watch it. Three months later at the next appointment, she asked about it herself but by then it was disappearing. It has since gone away completely on its own. I am unsure what she would have done, but she cared enough to note it. I also get regular skin checks because I have a history of skin cancer. I also get GERD, especially on Ibrance, and my onc prescribed Omeprazol (Prilosec). Pepcid no longer does anything for me. When I try to go off, the GERD returns with a vengeance so I stay on it. I know the recommendation is for short term, but GERD can me dangerous if unchecked and my QOL is important, so I stay on the Prilosec and my onc continues to prescribe it since the co-pay is cheaper than over-the-counter. I also get yearly eye checks but I had a complete hysterectomy 30 years ago so I no longer do that. My point is that everything matters because you matter, and I would encourage you to request, or demand a thorough checkup. I have a lot of the same concerns as you. It has been difficult for me to learn to advocate for myself, but I have learned how. No one knows how long we can live with mbc with all of the new advances, so fight on. I plan on you and me being around a long time.
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Hi Candy,
I still do all my routine checks except for the mamogram. I've been meaning to schedule something with the dermatologist but keep forgetting.
I have a harmless lypoma on my neck that I've been wanting to have removed. My MO said I would need to take time off of ibrance for that so I decided not to do it.
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Candy,
I have never had a PCP that did much more than troubleshoot the issues I made appointments for, except for watching my cholesterol labs and eventually putting me on a statin, and telling me to try getting to a more healthy weight. She did seem less concerned about my triglyceride numbers and my weight once I had my MBC dx.
I too have had skin cancer, but had previously seen this dermatologist for questionable skin spots. I am still on a 6 month schedule for skin checks.
My dentist requested I come every 4 months for cleaning and exams now instead of every six months.
I have no more reason to see my gyn since I’ve also had a hysterectomy (no more paps)and now my breasts are under my MO’s care.
I have sought out back injections from a pain management doc I had seen before my dx. He didn’t seem all that interested in my cancer unless it was on my spine. I was a little startled that he wasn’t very concerned about me having had this major health change. The mri he ordered showed I was clear in the lumbar area, so injections were done. He’s kind of ornery but the injections have relieved my pain so I’ve been seeing him for 3 years now.
It sounds like you’ve been relatively healthy other than this MBC dx. I thought I was too, but this list of providers I wrote about seems long. Maybe you appear well so your pcp hasn’t referred you to others? I feel like my MO is an acting pcp now. I was told to call her office if I’m sick or have a fever. I would suggest you make an appt with a dermatologist about your wrist cyst. I would expect him/her to take it more seriously than your pcp. Good luck, I hope hearing others’ experiences is helpful to you.
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Hi, Candy,
I still do all of my yearly checkups. I had melanoma in 2006 (the same year that I was initially diagnosed with MBC). It was barely a melanoma, but it was a melanoma. So that got me on the kick to go to the dermatologist. I also do everything else on a yearly basis. My internist always reminds me.
I say go for it if you can. You might as well keep yourself as healthy as you can be so you can fight MBC. As for your doctors, I say shame on them. They should be on all of this stuff.
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Tanya, thank you for your kind response. Yes, very connected indeed. And in fact, my sister (who also succumbed to BC) had rescued him for my Mom. So quite a history and extra layers. But losing a beloved pet is always heartbreaking. As you clearly know.
Hugs,
Penny
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Thanks to IntoLight, Simone, Rosie, and BevJen for your responses.
Yes, I guess I was basically healthy before the MBC. I have never had any skin issues--skin cancer--so I never had a need to go to a derm for checks. I just did yearly PCP visits. And my rheumatologist for my rheumatoid arthritis.
IntoLight-- I Googled ganglion cysts when the PCP said that was what the thing is on my wrist. Google says they are fluid filled and can go away on their own. Sounds like your experience. My cyst is hard and has never shrunk, but has grown. Does not hurt. I wonder if we should get an ultrasound or something. The PCP just looked at the wrist and shrugged it off as benign. Also, have you had any scans i.e. scope for your GERD?? Or just let the meds take care of it. I have never had a scope and don't really want one, but I know the chronic irritation of the GERD is not good. I too hope to live long with MBC and want to keep on top of possible health issues in case I do. But I don't want to appear I am looking for issues with wanting tests and such.
Rosie- I need to see my dentist. Before the cancer, I went to the dentist yearly kicking and screaming, LOL. I have a STRONG gag reflex and dreaded someones' hands in my mouth. Embarrassed to say it has been over 2 years since I saw the dentist. I do brush twice a day. Question--- with low white counts it is ok to do cleanings---possibly causing bleeding and stirring up bacteria---while on Ibrance???
Also, Rosie--- I have chronic back issues and just saw an orthopedist. She said she would recommend injections for my disc issues, but said that with my Ibrance use and the white counts she would not do the injections on me. So no help for my pain issues in my back. And also my MO specifically said she is treating the cancer and nothing else. All other issues should be directed to my other doctors--PCP, rheumy for the RA, etc.
I am just feeling like I am a lost cause. I look at my wrist and sigh. I have heartburn and pop a Pepcid or Tums and sigh. I go to my PCP every 4 months since the cancer diagnosis, but we just talk and then I leave there with the same health issues and sigh.
I am just in a mood, sorry.
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I was told not to have dental cleanings right now because of low neutrophils on Ibrance, so I would definitely ask about that.
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Candy I am sorry about that but also strongly identify with the confusion- I refuse to look down, only forward to put one foot in front of the other. I have been good about dentist and now go twice a week to physical therapy for this Ibrance- statin frozen shoulder problem. I have heavy eyelids and always imagined I would have an upper eye lift- so last fall I went for a consult about that. I thought surely they would shame me out of their office, but they didn't bat an eye!!! (pun intended) The doc's office did a vision test documenting the extent of my peripheral vision field and repeated the test with my eyelids taped up, to document the extent to which the heavy eyelids impair my vision. He insisted that they request insurance (otherwise I will pay out of pocket), and I will find out next week if insurance considers this to be beyond the pale. I guess we are no different than anyone else, nobody knows how long they will live..
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I also have terrible GERDs from the Ibrance, take Gaviscon and try to eat smaller meals- I just switched to the 100mg dose, so am hoping its less of a problem at the lower level
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I've got an amazing PCP. I literally owe her my life - I had put off getting a mammogram for years (believe it or not, I was too shy...), and she finally told me she had had it: either I went for a mammogram, or she wouldn't see me any more. She said if I didn't care about my health, why should she? I went for the mammogram, they found cancer, my PCP cried with me. She still checks everything, and told me she doesn't expect me to die from the cancer, so we have to keep me healthy in every other way, too.
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Elanas401, Do your pay out-of-pocket for an extra supplemental insurance ? Or do you just have a,Medicare Advantage plan that costs nothing other than the $60 or so that's taken out of your SS check monthly?
I'm wondering if that's why your drug copay is so low..I've gotten a grant to cover at least the first few months of Ibrance and I'm working on getting assistance for Fulvestrant as my copay is $396 per month.
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I buy a Bluecross blue shield supplemental plan for 233.00 per month and a part D prescription plan.
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Seaway, Thanks so much for the response. I'll try to look at her posts.
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Ginny02, you asked about them taking 60.00 out of my Social Security. They actually take 144.00 out of my SS, and then I pay the 233.00 supplemental (not an advantage plan), plus I pay the 16.70 for part D prescription coverage.
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I've had a ganglion cyst on my wrist for close to 25 years. It gets larger when I swim (just noticeable to me) and smaller for whatever reason. I've never had anyone look at it - maybe a dermatologist in college when I went to have a mole looked at (and removed). Just always assumed it was benign and no reason to deal with it other than cosmetic reasons.
About March last year (when all this mess started kicking off) I had a lump develop on the inside of my lip, right where I have accidentally bitten when chewing for a long time. It gets larger (but not hideous or anything) and then disappears. My dentist (who I ADORE) referred me to oral surgeon to have that dealt with - just an impacted saliva gland. I went to see her, she was US trained and I felt comfortable dealing with it, although it didn't really need to be taken out if I didn't want it to be. But it was delayed due to my pelvis problems and now I had to cancel completely because of starting Ibrance and I need to ask onc first about all this. Its very frustrating to not just go ahead and make some health decisions without running everything through the oncologist first.
And dont get me started on the pap smear I had this year at my GPs. It felt like some rural clinic in Asia - I even left half my clothes on.
Im glad to see I'm not the only one frustrated about wanting to take care of other health things (what few there are) and not knowing who to call/does the oncologist need to know/is the specialist capable of dealing with this other cancer issue. I also find it really tough yet to answer the question 'and are you otherwise well?' because I feel embarrassed about the Stage IV thing, like it was some personal failure on my part.
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Sondra F you’re so right I have other health issues that get pushed to the back bc cancer. Dental needs for sure. And it’s part me how much time $ do I want to invest in myself... sounds crazy. It it’s true.
Tany
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Congratulations Simone80 on the NEAD !! Just finishing cycle 4 of the IBRANCE and am hoping the CT scan next week shows shrinkage. My oncologist is very optimistic that IBRANCE will shrink the tumor into oblivion, making other treatment such as radiation, other chemo drugs unnecessary. This is the third time for BC (twice left, now right). Oncologist thinks each episode is a "new" cancer rather than recurrence, but when pressed, admits there is no way of knowing. Also taking Arimidex. I take lots of supplements as well. Green tea is a new addition. An ND thinks I should drink 40 oz /day. I usually get 24, sometimes 30.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed swelling in R-arm, opposite side from where lymph nodes removed. . Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion. Scans, and biopsy Aug-Sept 2019 indicated tumor in R-axilla.
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Re: high medicare drug copays. I have them, too, for Verzenio. It is an abomination that there is no out of pocket max on Medicare drugs. I do not care one bit what side of the political fence you are on, all U.S. citizens should demand that Medicare prescriptions have a cap on what an individual consumer have to spend. That could be $3,000 or $4,000. To think some senior citizens must pay thousands of dollars to stay alive because our government allows this outrageous oversight to continue year after year is mind boggling.
So far, I don’t even know if the Verzenio is even working. I think I get scans next month to see. By that time, I will have spent close to $7,000 for six months of it. And if it isn’t effective, if my scans show progression. all that money down the drain for what? Maybe you should only have to pay if it works!!!
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KBL- I do need to schedule a dental check. I will ask about the cleanings with the low counts--maybe schedule for when my counts are at their highest (beginning of cycle).
Cure-ious- I hope the PT works for your shoulder. I want to go to PT for my back, but will wait till flu/cold germs are lessened. Ok to wait, I hurt all the time anyway. LOL. I am glad they are going to do the eye lift, especially since affecting your vision. Would be cruel if they refused that since you have MBC. We should be able to see, even if we are terminal.
Ciaci- Sounds like you have a good PCP, caring.
Sondra- I guess the ganglion cyst bothers me because it is a reminder I have MBC. What I mean is, if I didn't have cancer I would probably have it removed. But with the bigger picture (MBC) and the Ibrance use maybe it is not worth it to mess with it. To me it is very noticeable. I have skinny wrists and it is popped out there like a second wrist bone. Don't be "embarrassed" by the Stage 4, it is definitely not your fault.
Tanya- I know what you mean about how much $ you want to spend on yourself. I worry the insurance company will balk at tests/procedures since I am labeled Stage 4. Like will they approve such and such test saying I am not worthy with the terminal diagnosis.
I go to my PCP this Thursday. I will mention the cyst again and tell him it is growing. See what he says. Also, I will mention the GERD and that I am using the Pepcid everyday. We will see how appt goes. And I do need to make appt for dentist this spring--after cold/flu season over.
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BlueGirl, I can tell my breast tumor has shrunk and I'm not even done with my second cycle yet. Swollen armpit node has also gone, so if it's cleared up your problems it wouldn't be a surprise!
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Sondra, I am kind of like the “self-esteem police”around here. It breaks my heart to read your comment: I also find it really tough yet to answer the question 'and are you otherwise well?' because I feel embarrassed about the Stage IV thing, like it was some personal failure on my part.
I realize you are still very, very new to the stage iv diagnosis, and that really takes awhile to wrap your head around. But please, please, work through your feelings that somehow you personally failed by getting mbc. You did not ask for the disease. And I know you do not think any other women on these boards are a failure because they, too, have metastatic breast cancer. So why be so horribly hard and unforgiving on yourself?
That's why I feel it's a self esteem issue. You can use this time to learn to love yourself more, treat yourself with tender loving kindness and practice extreme self care. Really, we all need to do that. I learn more and more to do that for myself.
There is some kind of acceptance we must face that we have mbc, difficult tho it may be. And we must love ourselves through it all. We aren't to love ourselves only if we are healthy and strong.
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Recently had a cyst removed under my arm..it was inside the skin. It had been there, I think, before diagnosed with MBC. It became infected and my primary dr removed. She was never concerned about it before but would always say I can remove it if you want me too. My ONC says no need for mammogram for me. Also have GERD from Ibrance.0
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Also wanted to mention back issues. I did get the shots for my back...pinched nerves on either side of spine...excruciating pain. Had MRI and the ortho drs recommended the shots. Didn’t think the shots would be a good idea for long term solution. Found a great chiropractor who helped so much. Saw him 3 x a week for two months. Now I go once a month. Can’t remember who posted about their back issues but hope this helps.0
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Airlinegal- I posted about back issues. I have degenerative disc L5S1. NO disc left, bone on bone. The ortho said disc replacement or spinal fusion is what is recommended for someone with my MRI. But those surgeries WWWAAAAYYY out of question--would be anterior approach (big surgery). Recommended steroid epidurals as 2nd option, but with my ANC counts would not do that either. Only other recommendations would be physical therapy--very conservative with no heat or TENS due to cancer in spine.
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