Ibrance (Palbociclib)
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Thank you LovefromPhilly!
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Movingsoccermom thank you for your reply! I at least feel a little relief knowing that it may go away eventually. I did finally take tylenol it took the edge off.
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just writing one more time to report that my ct and bone scans came back stable again! Yayyyyyyyy!!! Very relieved 😌 love and hugs philly!
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LoveFromPhillyIChangedMyNamethenChangeditbackagain, Great news on the scans. I've been away for few days and ran my phone and computer batteries all the way down to catch up. Now I can't remember all the responses I was going to post. There were several but they are gone now.
Oh, wait. Candy, SSDI, even though it is a federal program, varies by state. Each state handles it differently. Get advice/info from someone in your state. My experience is not really helpful because I did it so long ago and for very different reasons. I did some Googling about it for you now and one theme kept repeating. Medicare starts two years from WHEN YOU QUALIFIED for SSDI (the date of your disabling condition), not necessarily from when you started to collect. Sometimes it takes a while to go through the process of getting SSDI (application, appeals) and your date of disability may be BEFORE you start to collect. Yes, they give you back payments. That date is when the two year wait starts. That happened in my case and the wait turned out to be very short. Do some serious Googling about it and if you can't find that info, let me know. I'll find it again and send you some links. It took me forever to decide to do it myself but my identity was very tied up in my vocation. I still don't know who I am.
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LaurenH, yes, I go to the cancer center at AGH. My gynecologist was very impressed with their facility and teamwork. It seems to be working out for me. I’ve heard of Hillman.
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Hahahahahaha Jaycee 😂😂😂😂😂😂
I'm Busted!!
Thank you for the well wishes!!! I'm going keep on hoping!
I completely crashed today post-scan. I made it to a short work day and the grocery store and have been in bed the rest of the time. Does this happen to anyone else
💕💕💕💕🌸💕💕
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Question for anyone on this forum who might be on both Ibrance and Faslodex/Fulvestrant -- I am on Medicare Part A and B as well as with a Part D drug plan. I called Medicare today to clarify if Faslodex is covered under Part B of Medicare since it's administered in a doc's office, or if it have to be run through my Part D plan. Believe it or not (!) the person on the phone could not tell me. He wanted a procedure code, but said he couldn't find anything about fulvestrant or its other name, faslodex. Would just like to know what I'm in for, since I already called my Part D plan about Ibrance, and it ain't pretty. In fact, when you are in catastrophic coverage, they can STILL charge you for the drug (although not as much as in the initial stage.)
Thanks.
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LovefromPhilly, you never fooled us! Congratulations on the news! God is good!
BevJen, I can't imagine why your fulvestrant wouldn't be covered under your straight Medicare since it's given in the office. About Ibrance, please get busy applying for Co-Pay Assistance or to get it free from Pfizer. Just look on the Pfizer patient page on their website. I've never paid a penny in 32 months.
Love from PatGMc
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movingsoccermom - I have been on I/L for approx 1.5 years and have not experienced weight gain, though weight has not ever been a problem for me, hopefully you 'plateau' soon
nicolerod - I do have sore neck and muscles, but attribute it to the Letrozole. For a while, a few months after adding Ibrance I was getting headaches, which a ct scan revealed to be nothing. They were intermittent for a couple of months, then subsided. Hopefully yours do too.
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Movingsoccermom, I gained about 15 pounds the first year, then plateaued. I have now lost half that. I could force myself to lose more but I feel better being able to eat what and when I want rather than go hungry. I can't exercise much anymore so eating less would be the only way. I have decided that worrying about weight is the least of my worries right now. My DH keeps telling me that he doesn't want me to lose any weight I might need later. He's a keeper! Do what makes you happy--you are worth it!
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Not going to post long, I am tired. Just got off work and my mind is mush.
Jaycee----Oh My Gosh !!!!! I thought Social Security Disability is Federal and the same from State to State. The terminology is confusing me.... SSD, SSDI, SSI, SSA. My state, Illinois, is broke so if it is dependent on the State I am screwed. The information I am getting is from my Benefit Statement from Social Security. They used to mail one to a person every couple of years, now it is online. It shows how many years you have worked and contributed to Social Security, what your estimated retirement benefit is, and your estimated payment if you were disabled today. And all the info I am getting ( mainly from BCO, but others too ) is that there is a 2 year wait for Medicare and the date of disability is the date you apply not the date of the cancer diagnosis.
The more I read, the more confused I get and don't know who to ask for the real answer.
I will rethink this when I am fresh, too tired tonight.
Goodnight all.
Edited to say ----- Woohoo LovefromPhilly on the scans !!!!! And I like the screen name back to the original.
Sorry if I forgot the other posts. Going to bed.
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Candy, MBC qualifies as something called a Compassionate Allowance disability. You can be approved in as little as ten days.
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If you can, go to the nearest SS office and talk to someone in person. Here I need to make an appointment so worth the time.
I’ve known personally people who were stage 4, or had other serious illnesses SS will fast track you. None of that 2 year stuff they like to pull. Again, going into their office is a plus.
I am on Medicare. I also have an Advantage Plan. When MO said I was going on Ibrance, I absolutely freaked out. I called Phizer, got their paperwork for it. Dr office said don’t worry we’ll handle this. Apparently really wealthy people contribute millions yearly to cover expensive meds like this. Dr office said the money usually runs out in the fall, when that happens they will contact Phizer for continued coverage. I’ve received 2 cycles, nothing out of pocket for it.
One month of this kicked me into catastrophic. Now I have to pay $3.40 for all my generic meds. Not a bad deal.
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I get excited about every research project that gets us closer to understanding how we develop resistance to BC drugs because that's going to lead to what stops that resistance!
http://www.imperial.ac.uk/news/191377/scientists-d...
Love from PatGMc
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Don't stop and focus on this article's sentence about statistics.....those are always old news and actually have nothing to do with you or me. Just read all the way to the end where the author talks about the prospect of combining our dancing drug and checkpoint inhibitors. I'd be willing to bet some serious money on that and I'm no gambler!
https://xconomy.com/national/2019/05/29/immunother...Keep dancing!
Love from PatGMc
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Interesting article, Pat. When I was diagnosed mbc in Jan 2011, my son, a high school senior at the time, told me something to the effect of “just stay alive until the next effective/ breakthrough treatment" comes along. Several years later, I read some best selling book about cancer written by an M.D. and he basically said the same thing! Now I know we don't have much say so in the big picture, but if one can string a few of these newest effective treatments together, a person might get lucky.
Well, it looks like my body is tolerating the 100 mg of Ibrance so far. I'm a 9 days into the second cycle and the wbc count seems to be holding good enough to continue. Happy about that.
BevJen, try calling your onc's office and ask the person who deals with insurance coverage if the Faslodex is covered under Part B. They usually know because often they have to make sure there' insurance approval before the drug is administered. And even try calling Medicare back, you will probably get a different person who may be more informed that the last one you spoke with.
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Snooky, the two year wait people are talking about is the wait from when you get SSDI until you can receive Medicare. I haven't heard of any "fast tracking" of that. The program I posted about above is the fast tracking of the SSDI application process for Compassionate Allowances conditions which includes MBC. The two year wait for Medicare after SSDI approval is still in place, as far as I know.
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Good report, Philly! Yay! I had scans Wed., so now I w-a-i-t.
I'm feeling discouraged reading about Medicare not fully covering Ibrance, even with part d. I'm getting closer to having to deal with Medicare and it makes me angry and frustrated already. Also knowing which supplement from which company....as if I can afford much at all.
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check into the Advantage plans. I don’t pay for mine. It’s from Humana. Supplement plans, you pay for. Often quite a lot.
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For those going on Medicare, check with your state. I was automatically put on SSDI when I was diagnosed stage 4. We have Medical Assistance for women with breast and Cervical Cancer, no income or asset limits. But when I have to go on Medicare in August, I've been advised to go on Medical Assistance for Disabled Individuals, also no income limits. The only requirement is that you earn at least $65.00 a month. Wondering if other states have a similar program. You can be on it along with Medicare to pay for what isn't covered.
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Sorry, meant to mention that I'm in Minnesota.
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Hey jacee, I'm Snooky! You wanted your post to go to Spookie! Caught ya. 0 -
Sorry, Snooky. So many names, so similar. And then there is the name changing and changing back. I was just gone for two days and was trying to catch up and felt all proud of myself getting it done. Then a new post threw me off. It would be nice if all the info about SSDI, Medicare, etc. was posted all in one place and kept current. So much suspect information flies around these forums, I worry about people getting discouraged. I really try to be accurate but it's hard. Thanks for holding my feet to the fire.
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Results from my CT of chest/ab/pelvis was clean and also showed no new blood clots to lungs. Yay! I’m thinking about skipping my bone scan or at least extending to maybe 9 mo from the last one. I hate all of these tests. I also emailed my doc that I am not drinking that barium shake anymore until we know for sure that we need an enhanced picture. It seems to be making me sicker as the scans pile up
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Glad your scan was good. Do you go to City of Hope?
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Good for you jensgotthis!! I go in next Wednesday for 3 month scan. Anxiety is starting to creep in on me. I see my oncologist next Friday with results.
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Yay for you, Jen! I pushed my scans out to 9 months. My doc was fine with it - he seems to think that it will be a long time before anything new shows up so he's good with waiting. We do the Pet so it's easier to get approved if it is further out anyway. I love that he's ok with delaying it. My motto is to maximize treatment and minimize stressful surveillance. It works for me.
Yay for Philly too! And I'm glad you are back to LovefromPhilly. Like Jaycee, i have a hard time keep everyone straight. I also saw your pics from Europe - so glad you went!
Karen - thanks for your note. Jaycee PMed me too - she keeps tabs on us, which is super sweet.
Sorry I can't help with all the disability questions but I don't have a clue.
Love to all,
Lauren
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I remember reading about a side effect of sores in the mouth...I can't remember if it was from Ibrance, Xgeva or Letrozol or Faslodex??? In any event...does anyone know which of these cause that and do they mean canker sores or something else? I've had what looks like canker sore on the roof of my mouth for a week now just wondering if it has to do with meds? Thanks for any info ladies
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Nicole, yes, mouth sores are a possible side effect of Ibrance. They can take on various forms, and what you described is one of them. I eat Greek yogurt which helps. Also rinsing with baking soda, or use Biotene mouthwash that you can get anywhere. If it is severe there is a prescription mouthwash you can get, called Magic Mouthwash, that I know some on here have used but I have not needed it. I am sure others will chime in on what they have used successfully. My dentist gave me some lozenges that help with dry mouth that is the usual cause. Hope this helps.
Jens... yay! Always glad to hear good news. My scans were moved to 6 months until I got a minor progression so we moved them back to 3 months. I am good with that.
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Intothelight thank you I remember several nights ago my nose was really stuffed bad allergies and I slept with my mouth open and my mouth was SOOOO DRY omgosh I couldn't even make saliva!! lol I will try the baking soda. Thank you!
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