Ibrance (Palbociclib)
Comments
-
Did PatGMc maybe disappear around the time we were having all of the glitches with the updated site? I wonder if she is one of the ones that left and has not come back. I don't recall what her real name was but wonder chicagoan if you Googled her name and her artwork if you would be able to find anything about what has happened to her. It's always so hard when we don't know how someone in the group is doing.
0 -
Cowgal-maybe the website glitches are the reason she has disappeared. I have thoroughly googled her-no activity on FB or instagram either. I even found her phone numbers but don't feel comfortable calling. She added so much hope and encouragement to this thread and is missed by me. Best case is that Pat reads this and gets a good laugh out of me stalking her!
0 -
Chicagoan I find that all very interesting and encouraging. I have felt quite good with a low ANC and WBC as well. I did read a study that said lower doses of Ibrance showed no shorter period of progression free time or overall survival. I have actually felt downright spunky on the Ibrance. It feels good to know I am doing my best to buy time until better meds come along. It is entirely tolerable. you have gone a long time on your regimen and that isso good to know. I know we are all unique, but we are alike in many ways too. And so we March on
0 -
I read along on here since I was an Ibrance Dancer before. I too have wondered about Patgmc. Chicagoan-- Good to hear that you are not finding an obit. But, weird that she is not showing up on other social media sites either. Maybe you should call her. Or text her a message. Texting seems less intrusive in some way. I pray she is happy and healthy.
1 -
Good morning, all. I'm in the process of signing up for Medicare and am stunned at the potential cost of my Ibrance. Somewhere in the neighborhood of $800 a month. Turns out that IV chemo is covered under Part B, but oral chemo (Ibrance) is "covered" under Part D with a whopping copay. I think I'm going to stay on DH's insurance until he retires. My head is spinning with all of the different plan options. I do have a very good agent who is walking me through the steps. I did decide to start getting my SS income now, rather than wait until I'm 70 for a bigger payout. I may not make it to 70 and I might as well start collecting it now, right?
0 -
candy, always great to see you post ! Thanks for checking in .
Sunshine - I am almost 59 (on April fools day !) and my husband is almost 60. Our medical coverage is through his work as I am self employed .
You should also qualify for ss disability , right ? I haven't applied because I'm still working. Keep us posted on this .
Chicagoan , thanks for posting about PatMcG . I've wondered about her too. I still need to send you photos of our Chicago meet up ! Can't believe that was a month ago
0 -
AprilGirl1 - If Sunshine is eligible for Soc Sec, which it seems like she is, she cannot also get disability. Those who do get disability usually aren't of Soc Sec age yet, so in a certain way (not exactly) they just get their Soc Sec early.
One of my old besties is an "April Fool" also. In fact I was just getting ready to ask her if I can treat her to dinner here pretty soon. Happy Birthday to you too!
0 -
I have a question about tumor markers. You all have so much more life experience than any single doctor. With all the struggling with ANC and slight pauses due to neutropenia, my CA15-3 has gone down a bit, but not a lot. CEA is hardly elevated at 2.6. I am in a 3 week hiatus from my third course of Ibrance. Next course the dose will be lowered to 75. Have any ofyou had similar experiences? I felt so good about the "CEA, but I guess I was expecting the CA15-3 to drop more dramatically.
0 -
sunshine - When I first went on SSDI my insurance was through my husband’s retirement benefits. After 2 years on SSDI I gad to go on Medicare (I was scared) but I was able to keep my husband’s prescription drug coverage -without penalty should I ever need to go on Part D. Every year I’m sent paperwork indicating that my husband’s drug coverage is “creditable”. That was a big win for me, a load off my mind and pocketbook.
Gigil- I didn’t get my tumor markers tested until 4 months into MBC but I had a lot of time off in the beginning due to neutropenia. I started Fulvestrant first and then 2 1/2 weeks later started Ibrance 125 mg. After 14 days, I had to take a 14 day break. Changed to 100 mg and the next 3 cycles were the same -14 days on and 14 days to recover. I did not complete a typical 21/7 cycle until I reduced to 75 mg for cycle number 5. Despite the rocky start, my first PET showed improvement. My PET was right before I started 75 mg. Good luck.
Clinical trial update -Out with the old and in with the new! I’ll write a more explicit post in the clinical trial thread but I wanted to let you all know that I stopped taking the CDK2 inhibitor I started on Dec 1. And guess what I chose for my next line? A PROTAC oral estrogen receptor degrader. I have to wash out for 2 weeks and then I start the new trial. And that’s all folks
0 -
RK2020 good luck with the new trial. Please check in from time to time. I’ll have to remember to check the clinical trials sight too. Take care.
Chicagoan did cureious have a connection with Pat?
take care allTanya
0 -
Hi Ladies. I haven't posted for a long time, I kind of dropped off since the "upgrade". I'm still on Ibrance and letrozole and doing well.
There were some questions about what happened to Pat. I loved her paintings and asked her in a private message how I could see what paintings she had for sale. She sent me her FB name in a private message a couple of years ago. I also enjoyed her posts so much, so much hope for all of us. I am sorry to say that I could not find a obit but I did find a Facebook post from her husband in Oct 2022 that Pat passed.
0 -
simone60 - Thank you for posting the update on Pat. I am very sad that we didn't know when she was failing and couldn't help support her. Rest in Peace Pat. You helped me in more ways than you will ever know. Regina
0 -
Rest in Peace Patgmc.
0 -
Thanks Simone60. At least now we know Pat is no longer in pain or dealing with this cancer stuff. May she rest in peace.
0 -
Oh, that's so sad. I had this vague recollection that she had passed. I hate that I can't remember which ladies we've lost to this disease...
0 -
simone, oh my gosh, I am so sorry to learn of Pat’s passing. Her artwork was incredible and incredibly memorable. I so appreciate your letting us know. May she rest in peace, she had such a caring soul.
0 -
that sucks. She was always so awesome. I remember her from when I first came into the boards she was so welcoming and kind. How sad this stupid disease is. I hate it. Rip Pat. You will be missed
0 -
Sending love and prayers out to Patgmc, who was so sweet and always had great posts, wonderful artwork, and a positive energy and sense of humor that helped me so much. Love you Pat
0 -
Rest in eternal peace Patgmc.
0 -
sad to find out about Patgmc she was what kept this thread going. Loved her paintings, kindness and optimism. Tany
0 -
It's so sad to lose another member to this disease!
I've decided to stay on my DH's insurance plan until retires (or I die) because the cost of Medicare Part B is more than I want to pay, PLUS the added cost of Ibrance with Medicare Part D would totally suck! I hate dealing with insurance stuff.
Carol
0 -
Hi All, I've been looking for the topic to jump in and this one seems to be the most appropriate. I'm new to the mets club and just finished my first course of Ibrance. I thought it would be easy peasy compared to infusion chemo but I was wrong. I'm sure you've heard that before.
Any way, I just wanted to say hi and introduce myself. I'm Sharon, I live in Cincinnati, I just turned 59 and got the news of my mets the same week as my birthday. Worst gift ever. I had no symptoms but my tumor markers were going up. We were all surprised to see that one of my ribs was just ate up with cancer and I've had no pain. Which makes the side effects of Ibrance almost not seem worth it.I was one of the recent tech lay off people who stopped the job search and went on SSDI. I am happily married with two adult children and two senior dogs. I've been spending my time finishing all the craft projects I've never gotten to, watching TV, and hopefully camping soon as the weather gets better.
0 -
Hi Sharon! Welcome! I’m originally from Cincinnati, Mariemont. Been gone 39 years.
0 -
Welcome Bagsharon! I was one of the woman who had a rough time on Ibrance. I did not, I repeat did NOT, feel or look like the women on the commercial. I got out and did as much as I could but dang, I was draggin’ *ss. I finally got some relief when I was put on 75 mg. I’m not taking Ibrance any longer but I still hang out on this thread because I like the ladies. 🙃 The best of luck to you. We have some long timers here on Ibrance. It could happen to you.
0 -
Hi Spookie, I remember you when I was posting while I had early stage cancer. It is good to see a familiar "face."
Hi RK, my nurses and I joke about that stupid commercial. Hey doc, can you prescribe me the 15K monthly med that makes me frolick while I'm dying?
0 -
Hi bagsharon good to meet you but sorry about the joint we are hanging out in. I have had very extensive bone mets for 7 years but have just had scan results that show that I continue to be stable. Started Ibrance 6.5 years ago. It may have its downsides but I love it. I hope it works as well for you as it has for me and there are some on this threadwho have been on it longer than me.
0 -
Hi Sharon, Welcome to the group. I am in southern PA. Never been to Cincinnati. I just started my 3rd cycle on Ibrance. It seems to be working. My recurrence was discovered in January 2023. My tumor markers are coming down.
Yes, I wish I felt like the commercials. Just came from my MO appointment this afternoon. I will say I have had minimal side effects. He went through a list of side effects. Fatigue is my big one. His answer was cancer treatments suck. They are not like the commercials. He kept asking me if I had pain any where this time and I said only my knee. I was to have a knee replacement in January but that is on hold for now. The last couple of days the knee has flared up. the meniscus detached from my knee last summer. I still workout 4 times a week despite everything and I find that helps with energy and achiness from the Letrozole. I told him I adjusted my workouts based on how I felt and how the last 2 months followed a pattern relating to my red count.
I really like this group. They are so helpful.
0 -
To bagsharon and other newbies - I had a bit of progression last year, so am now on Verzenio, but I remember people saying "Once an Ibrance dancer, always an Ibrance dancer", so here I am, checking in. I was on Ibrance for 5-1/2 years (started at age 55). I had a few blips here and there, but most of the time, I felt fine. I never had any symptoms, my Stage-4 cancer was discovered on my first-ever routine mammogram, and I often say if I didn't know I had cancer, I wouldn't know I had cancer! Ibrance can be tough, but for me, it was so worth it.
As for those women in the commercials, I put them to shame (most of the time). An old lady in a yarn shop? Please - While on Ibrance, I was crocheting on cruise ships in Greece, Italy, the Caribbean. We bought a house in Florida and I promptly learned to play pickleball (though I'm still terrible at it, LOL). My profile pic is me on an ATV in the Nevada desert, during a trip to Las Vegas to celebrate one of my clear scans. I hiked to the Acropolis in Athens, the lighthouse at Peggy's Cove in Nova Scotia, and spent days wandering the streets of Naples, Italy. Mentioning all this just to say, there is hope. There can be good days - really, really, good days. When I was diagnosed, I cried for about a week, thinking of all the things I'd miss. Since then, I saw my baby graduate college (twice!), two of my kids buy houses, and my middle guy is getting married in two weeks. Life is so good!!
Beyond sad to hear about PatGmc, but I'm writing because she was the one who always encouraged me to do so. I used to feel guilty that I didn't feel bad while so many did, but she said it was important to know that feeling good is possible. Wishing love and light to all.
0 -
ciaci - You are the reason why when we start a new med, we need to keep an open mind. Every body is different and while we may all be hormone positive, beyond that, our cancers have different nuances. While we may find commonalities in our experiences, we really are different too. IV chemo isn’t too far in my future and I will be reminding myself of this fact when I have to embark down that scary road. I’ve drawn several short straws during my bc saga but I sense a long straw in my near future! And no matter how bad I feel, I always feel better if I force myself off the couch and out of the house. Even on the days I don’t think it’s possible. And as much as I hate exercise, beyond the physical benefits, it is really is a mood and energy lifter. Have a great day ladies
0 -
and right after I wrote my post, I opened this email about a Fort Myers Beach couple that lost it all during Hurricane Ian. This article reminded me that no matter your situation, look for hope…and you will find it. I know that practicing daily gratification helped lift me out of the doldrums after my initial diagnosis. First grieve, then be thankful.
0
