Ibrance (Palbociclib)
Comments
-
Hi all - I have really appreciated the responses to Woodlands questions - this is the one thing that really nags at me. The reality that we don't know, and the doctors really don't know how much time we have.
All of your posts and posts on other threads with longer term survivors really have helped me calm down and given me hope (there are a few threads on these boards of 10 plus year stage 4 thrivers).
However, I do love the advice to be careful in the bathtub and get my "affairs" in order.
Sending you all good vibes for a great and covid free weekend.
0 -
JACK5IE - Thanks!
april - My husband and I each filled out our wills and advanced health directives a few years ago. Sad to read that young doctors/nurses feel compelled to do the same.
My hospital announced today that it's now a designated covid-19 treatment centre, one of many in Montreal. Guess I won't be going back for a while.
0 -
Woodlands, yikes. First of all, 5 to 10 years is an awfully big range, LOL. Therefore, I declare it invalid.
Go out, live your life, enjoy (after the lockdowns, of course
). I've said it a few times on here, but there were so many things I've done, that before my diagnosis, I would have said "no way!" to. Not because I feel like I can be reckless now, with nothing left to lose - someone asked me that once - but because I appreciate everything so much more. My pic here is of me riding an ATV in the Nevada desert during a trip to Vegas to celebrate my first NED scan. My first instinct, when my husband suggested it, was to refuse. Then I thought, why not? People do it every day. I LOVED it!! Two hours of careening over dunes and rocks, and I was laughing so hard - my husband was the one who drove around like a nervous little old lady!I also tried a flight simulator onboard a cruise ship, hiked to the top of Mt. Parthenion to see the Parthenon in Athens, visited my great-grandfather's grave in Nova Scotia, and learned to play pickleball. Husband and I bought a pontoon boat and a house in Florida. My kids are grown, not yet married, so I'm looking forward to that next phase of my life. I have ZERO plans of dying in the next ten years - I have too much to do!
0 -
Ciaci is so right. When a doctor can tell me the day I'm going to die, I'll be more apt to listen to his prognostications (Is that a word?!)! I'm thankful my doctor has never done this.
I think about the perfectly healthy people being diagnosed and dying within days from Covid-19. Who would have thought?
God knew how many days I had before I got here. You too. I'm not heading off on an ATV like Ciaci but I'll continue doing my thing here without counting down the days. My friend, Luane was told her life would be short when her BC spread a couple decades ago. Her dream was to have a child but she was infertile so she adopted a baby girl and I got to give her a shower. If it weren't for Covid-19 we'd be going to her high school graduation next month! (By the way, Luane hasn't been in treatment for many years and she still has no evidence of disease.)
May I suggest Dr. Lawrence LeShan's book, Cancer As a Turning Point? We went through lots of his recommended exercises in a workshop at Flying Colors Cancer Network. Long before the adoption Luane imagined herself turning cartwheels in her backyard with a daughter. It happened!
The book is about $6.00 used with free shipping.
https://smile.amazon.com/Cancer-As-Turning-Point-P...=sr_1_1?crid=3M8GAARGI6TH7&dchild=1&keywords=cancer+as+a+turning+point&qid=1585959131&s=books&sprefix=cancer+as+a+turning+%2Caps%2C174&sr=1-1Much love from PatGMcHopeful
0 -
Hi everyone,
Good to see so many are keeping up regularly. I’ve been trying to give support to a friend who is struggling with MBC which is producing many challenges for her. I’m praying that they can find the best treatment for her as she has been feeling so ill. She’ll be getting the results of her recent scans on Friday and I pray she gets the answers that she needs. Hopefully she is stable or better and that tweaking some meds will help. She’s such a wonderful, caring person.
I have a question that I don’t think I’ve asked before. Has anyone had steady increases in their AST ?
My AST has been on the rise since I first began treatment. In Feb it was up to 40, March 54 and next week I get tested again. There’s no reason to believe that it won’t be elevated again because it has never dropped or leveled off since I began.Help .....I’m hoping someone can chime in, not that I’d wish this on anyone but I’m wondering if they’ll need to change my treatment plan!???
0 -
Had a few days out, so just catching up. As always sensible advice for any newbies and glad that the virus is not the sole topic of conversation here.
That said I'm about to have a 1 cycle break from Ibrance, to give me a wee booster and keep me away from hospital just now, which will give me a full 7 week break ( I'm on 3 on 2 off 75mg). If Jaycee and others hadn't previously advocated for that kind of break I'd have resisted it so thank you ladies! I also yesterday received the official Government letter putting me in the “shielded" very high risk group ...after 2 weeks of wondering if our thing was actually a thing! This helps with my DH's work ( key worker), benefits and so on. Does mean I'm not allowed out at all, apart from garden, for 3 months!
0 -
Karen, we don't have specific risk groups, just high risk if you have a previous condition or are over 65. We are still on self-quarantine if needed. I have chosen to not go out except for medical tests, etc. Everyone around me knows to stay away and be extra careful. That's the best we can expect. I took myself off Ibrance early this past cycle because my DH came down with a cold and I wanted to stay well. It worked. I start back tomorrow so we will see. My labs were the same even though I took extra time off.
0 -
Hi Ibrance friends. After 43 cycles or 38 months, I am changing to Xeloda.
My liver mets have found a way to grow in just 3 months. Rising tumor marker correlated with liver MRI. Once I am stable on Xeloda, my MO wants me on Fulvestrant and Verzenio. She says I can always go back to Xeloda. She wants to hit hard and quickly.
So here's hoping Xeloda works. Being restaged is like being diagnosed all over again..surreal.
So bx, CT and bone scans this week.
The antiestrogen and CK4/6 inhibitors are a good combo and like me, hopefully will keep your mets quiet for a while.
S
0 -
sandibeach I’m glad your Dr wants to hit hard. So sorry about the liver progression. I really appreciate your sharing how many cycles and months you’ve been on Ibrance. Like so many others it gives us hope. Here here to hoping xeloda works well for a long time and gets you back on track.
Take care and stay in touch
Tanya
0 -
Thank you Tanya!. I can't do math right now, it is actually 39 months..nice long run and really no major concerns while on it.
I am positive the support and care that I received here will be just the same on Xeloda thread. So many familiar names already there. That is comforting.
0 -
Sandibeach, sorry to hear of your progression and change of treatment. I am sure this is devastating. I will pray your new treatment works well and you tolerate it fine. We are not so far apart in Ibrance dance times--I am 47 months in and I have both bone and liver mets, so I will follow your progress carefully. Not only for personal reasons, but to pray for good results for you.
0 -
Hi Intolight. Thank you for your kind words and prayers.
I had always thought I would go directly to Faslodex and Verzenio.
But when my MO looked at liver MRI, she said it needed a faster treatment, so Xeloda it is. They were not large lesions, but many, many "spots" in both lobes..looked like a leopard. She is consulting with a radiologist to see if any of the spots can be biopsied to check hormonal status with tissue sent for F1.
The interesting thing about my reliable Ca15.3 tumor marker is that it has been slowly increasing the last 4 months.. Then BOOM, today, it was 3x what it was just 3 weeks ago. In January, there was one tiny questionable area in liver MRI, arteriole phase, but nothing seen on ultrasound or PET/CT scan. So it was just a wait and rescan. I feel fine. That is the crazy part.
0 -
Sandibeach, sorry about the liver progression. I hope you get those liver mets under control with xeloda.
0 -
Sandbeach, so sorry for the news. I’m praying that the new plan will give many years ahead.
Karen, 3 months at home ?! That’s going to be one great big garden !0 -
Sandibeach, I'm bummed that you have to change drugs but have seen people do well for a long time on Xeloda. I'll be praying for good things. I do want to suggest that your oncologist consider the Guardant360 testing so you can avoid a tissue biopsy. Mine did that and it came back with a list of recommended treatments. It showed that I was still ER+ and that going back on Ibrance plus Fulvestrant/Faslodex was best. It altered the decision to have me start right away on Halaven, an IV chemo.
My oncologist has a lot of faith in the G360 blood testing and sees a decline in future tissue biopsies because of it.
Whatever you decide to do, know that I and your other friends here will be holding your hand and dancing along with you. And maybe we'll see you back on Ibrance plus Fulvestrant one of these days! (I've been doing this combo for less than a month and the discomfort in my sacrum is already diminishing! I had 3 years on Ibrance/Arimidex before the 3 months on Lynparza.) May I add that I recently ran into my MBC friend who has been on Faslodex alone for over 12 years?! She's still NED.
Love from PatGMc
0 -
Thank you PatgMc. You are right. If all those leopard spots in my liver are not big enough to bx/F1, G360 will have to be the next step. I am grateful that it is even possible.
I am hoarding my unopened bottle of Ibrance..just in case!
0 -
Hi, Sandi,
A little late to chime in here but I am sorry about your liver mets finding. At least you have an explanation for the rising TMs. Good luck with the new treatment, and we hope that you come back to see us here often.
0 -
Thank you Pat. I love the days and hours when I forget I have cancer. I feel reassured to read how Ibrance and Letrozole can make me exhausted, as I felt kind of foolish needing a nap most afternoons.
I wish I knew what to do with my life. Newly retired, moved to my dream house and then three months later - BAM! The diagnosis in 2020.
I have a sweet husband and dog. My elderly mom is freaked out because I visit her weekly and call her daily. I promised her my husband will do the same. This sure is not what I had planned for when I had us retire and move. Jeez.
0 -
SandiBeach...I'm so sorry about the progession. Wishing you the absolute best on the new meds.
0 -
Sandi, I'm so sorry. I'm hoping your next treatment gives you a nice long run like Ibrance did. Thinking of you and praying for a fast and hard hit to knock it back.
0 -
Sandibeach5- sounds like you have a great plan in place for that darn progression! That inspires me to be hopeful in my situation.....Thank you! I love that your tumor markers were a helpful indication. I will be getting my lab results soon hopefully, as I just got back from my blood draws.
Is the G360 blood test available at most hospitals? That is really exciting to hear that you can have a less invasive biopsy with potreatment options.
0 -
Is the G360 blood test available at most hospitals? That is really exciting to hear that you can have a less invasive biopsy with potreatment options
0 -
SandiBeach57– sorry you are moving to the next treatment. Hoping you will see similar results as you had with Ibrance.
Sending you hugs and will keep you in my prayers. Hoping Verzenio treats you like Ibrance after Xeloda kicks those liver mets.
0 -
I had my virtual visit with my MO today. She recommended that I should stop my Ibrance as of tomorrow for about 6 weeks to bring my immunity back up during this Covid-19 time. I'll still be taking the Letrozole. I see her again in 6 weeks, with labs, to decide on when to restart. She said she feels confident that this break is ok because of my current low tumor load and won't affect my overall survival. I'll be interested if I notice any positive changes with my counts going up closer to normal ranges.
0 -
SandiBeach57 wishing you the best on the new drug. Keep us posted.0
-
Oh, Pat, I have no words- obviously, this is no bueno!
There must be strong experimental meds available to you through compassionate use?
I understand quality of life it not just a thing, its everything, and I will switch my attitude on a dime when its time to go
0 -
Sandi- Crap, crap, crap!! I too have passed the "expiration date" on the I-F regimen, keeping an eye on which clinical trial is worth a try when the time comes..
0 -
Cure-ious, I think I must have misspoken about my situation. I'm doing well and back on Ibrance with a side of Faslodex! My sacrum feels better than it has in a long time so please don't worry about me. I truly believe my combo is working but I do thank you for your concern, sweet friend.
I'll have a skull MRI in a couple weeks to make sure the CyberKnife did its job. I feel confident about that.
Love to you from PatGMc
0 -
OMG, Pat, I'm SO relieved!! I thought you said you went from Ibrance to stuff that didn't work and that was that!! Well,hell, I must have missed your latest and anyway I just skim read too quickly. With COVID crap its all too much these days
My brother-in-law is a physician's assistant in Kansas and just became infected from his work in the clinic. He's got fever and muscle aches and is just in day 3. Tested negative for the flu and should get the COVID test results tomorrow but they seem sure that's what this is. Tough guy as he is, he's kinda freaked out not having any idea what fate awaits him in the coming week or two.
0 -
Cure-ious, I promise to pray for your brother-in-law in the days to come. My niece's husband just found out he did a Heart Cath on a man who's infected and now Pablo doesn't feel well. It's all very scary.
I'll be glad when they're able to test people for antibodies so we can know if we've had it. We're so sure we all did, brought to us from my daughter and granddaughter's trip to a fancy Nashville hotel with lots of tourists. I was too sick to go to Urgent Care but my family went multiple times only to be told they tested negative for flu and Strep and sent on their way with prescriptions for useless antibiotics. We had the whole assortment of symptoms and were miserably sick for many weeks. Hopefully, we did have it and won't get it again.
Stay well, my friend, and thank you so much for being concerned about me. I have made it clear to my family and my oncologist that I might one day decide to forego further treatment. I expect something new to come along that will knock our socks off before then though!!
Love from PatGMcReadyToBeWowed
0
