Ibrance (Palbociclib)
Comments
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KBL,
I would discuss this with your MO. I've relayed my story before, my when I went into Hopkins on April 12 for what I thought was an in and out CT, I didn't come out until after my surgeries on 4/30. I had had mention of spot(s) on my femurs, but nothing that sounded really serious until the docs told me I couldn't get out of bed until surgery because I was at risk of breakage. I had pain in one spot -- in my R butt -- but nowhere else, and even that hadn't been there that long -- maybe a couple of weeks. Once again this darn disease can surprise you.
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GoKale and KBL- You mention hip pain. I have a history of low back issues--- disc issues--- had them forever. I recently started PT again--- had it many times before for the back-- for chronic management of that--- exercises, stretching, etc. I had noticed pain in my right hip and decreased range of motion in that hip lately--- over last 6 months or so. The PT therapist says my hip is very stiff and is focusing on that. I have not had images of that hip or pelvis. I have MRI's of abdomen and pelvis to monitor my liver mets. But no bone scans or PET's or images of that hip.
I worry that it is cancer in that hip. Maybe it is not. Just getting older and ortho issues. It hurts to move it too much, to lie on it, etc.
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Candy - I would not entertain that idea at all. I suggest letting the PT work on that hip to make it better. Maybe later if the range of motion doesn't improve or if you're still concerned after you have given PT a chance to work, ask the MO to do a scan.
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BevJen, I will definitely mention it. I have an appointment coming up this Monday. My hips have been bad since my car accident in 2013, but they’re getting worse, and my thighs have just stared having issues. I’ll keep you posted. True, something can just pop up. I appreciate it.
Candy, I totally get the not knowing if it’s cancer. Since I know I’m full of it in my bones and bone marrow, I’m thinking that’s what the pain is from, but I might be wrong. I have an MRI of my lumbar and pelvis coming up. After all the MRIs I’ve had of my pelvis, there has never been a mention of my hips. I’m going to ask the radiologist to please look at them and see what’s going on. I hope PT can help you.0 -
KBL,
Let's just say that some number of doctors at Hopkins couldn't figure out what was going on with me prior to my two surgeries. It took 2 days and some careful detective work by two wonderful radiological oncologists who finally spotted the problems in my femur on both sides. So I think you're wise to alert the reading radiologist about any and all things going on with you.
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Txgatata - Sorry to hear about the change. F*** the big C. My cancer also blew up after a year on Ibrance and became metastatic. CTs had suggested the tumor was shrinking prior to that. WTF! It really sucks. HUGs
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Thank you so much, BevJen. I will definitely talk to him. It’s always someone different that reads my scans, but then I have a sweet radiologist who I got to talk to this past December, and he puts a second pair of eyes on all my scans now. He’s with the same company. I’m so appreciative he takes time for me. He put my CT up and my MRI and was astounded. Nothing at all in the CT, and in his words, “extensive disease showing on the MRI.” He’s amazed every time we talk.
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My counts tank even on the 75. Doc said we might have to change treatment, also depends on the scans... ugh 😩I hope you all have lots of Up Days
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Thanks, bluegirlredstate! Good to know I'm not alone. I know he can't radiate chest anymore so interested to see where we go with treatment.
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Sorry I've been MIA for a while. My sister came for a week-long visit and brought her 3 year old granddaughter with her. We were on the road nearly the entire week doing things to keep the little one entertained. Keeping up with a three year old is quite a feat!
I had my PET scan last Wednesday, and it came out fine. No uptake really anywhere to be concerned about. I saw my MO today. My bloodwork was also good. My CEA in June was 11.4. For July it is 7.6. I'm pleased it has headed in the right direction to almost normal, which would be 5 or less.
I had to post a picture of our newest family member who just joined us today. This is Sophie Grace, a miniature schnauzer who is two years old. She seems to be already bonded to us, and we adore her. Hoping we have a quiet night with our new addition.
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We are more cat people, but I'm sorry, that dog is straight up ADORABLE! I hope she went easy on you her first night in her new home!
Candy - can they do an xray on that hip as a cheap/fast way to get a look at whats up?
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FGodmother - Sophie is a cutie! Hope she let you sleep last night. And I’m glad your scan and blood work were good.
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There is Dog and Cat threads here for the pet parents. Your new addition is too cute!!!
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FGodmother- Your doggie is precious. Congrats on the good results.
Sondra- I have not asked for an x-ray. Haha. I have not mentioned it to my MO, and my ortho concentrated on my L/S spine for the order to do PT. I compartmentalize the docs. So, I guess I need to ask one of them. I have mentioned to my MO about wondering about my bone mets status. She has not ordered any other scans to check the bones.
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MKestral....sorry to hear about the low ANC on 75..... I'm about to find out about this too. Bloodwork tomorrow after 2 weeks of first cycle on 75, prior to leaving for a trip so I can quit the cycle early if ANC is getting too low. In which case I'll also be in for a treatment change and also curious what that would be.
Sorry to hear about the hips, Candy and KBL, I hope you can get it looked at.... in the midst of the other uncertainties I recall you are going through. Hoping for some good possibilities.
Sorry to hear about the progression, Txgatata....hopes for a good next tx.
Lovely schnauzer Fgodmother. We had one when I was a kid.... he was a lot of fun.
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Thank you, Prairiesea. I hope you have fun on your trip.
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KBL - I had pain relief from radiation to T11-L1, 5 sessions for a total of 20 gray. My side effects were fatigue and esophagitis for about 2 weeks.
BevJen - Hugs to you. Hang in there chickie. 🐥 I hope you are nausea free soon!
MKestral - has your doctor talked about switching to Verzenio?
My last PET report didn’t have the detail I was hoping for but it didn’t seem too terrible. I had a couple of concerns but my husband seemed to think it was a good report so I shushed up and have been waiting somewhat patiently to get a comparison read of my June 21 scan in Wisconsin with my April scan at Moffitt. Moffitt said they sent to WI but WI never got it. Wisconsin said they sent it to Moffitt but Moffitt never got it. Grrrrr. Round and round we go. Last Monday after seeing my oncologist, I raised a little hell - especially after he said I had progression and he wanted to switch meds. I also raised hell at Moffitt. Now both have confirmed that they will get me a comparison read ASAP. I will be patient for 2 more days but I will not hold back if I dont get a comparison read soon. Anyway, 5 days ago we decided to list our place in Wisconsin. I’m going to miss the beautiful summers there and the rolling hills, the bluffs and my gardens but I’m blessed to have enjoyed my little piece of heaven for 16 years. I won’t miss coordinating care across 1600 miles.
And as far as progression is concerned, it seems like some lymph nodes have lit up again. I was hoping it was Covid vaccine fall out when I saw that on my April scan. And it mentions t12 which was radiated last February but this is a spot in a different area of t12 (it was confirmed by comparing my latest PET to my MRI). And my sacrum is getting pretty bright. Still bone only mets. Once I get my comparison read, I’ll figure this out and carry on. I may not be doing the Ibrance dance any longer but I WILL keep dancing.0 -
Thank you for the info RK2020. I’m sorry about the mix-up between centers. It is ridiculous how much work we have to do with the calling, etc. I hope you get the read quickly.
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Well, shoot, I'm afraid it looks like I will be moving off Ibrance. Two weeks in to 75 dose cycle, which i started within the normal ANC range, I'm already down to .58. Haven't talked to Onc's office yet but will ask to quit for my trip, hoping my slightly scratchy throat won't prevent me from going. I suspect next will be letrozole and Verzenio or, what I hadn't heard of but Onc suggested a couple weeks ago as another alternative, letrozole and fulvestrant. Stinks because I think it was having an affect on the cancer, but maybe these others will too. Roll with the punches, I guess, and hope I don't get sick on my much anticipated vacation.
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Just wanted to login to say hi to everyone & share an update on my 4 months scans result: still stable. I took my first ibrance on Feb 25th 2019 & it is still working to keep my bone mets inactive as of today. Scanned this morning & results just showed on the portal. Sorry, I don't post or contribute much, but I just want to come back once in a while to say hi & give update after scans. I hope this will give the newbies some hope that ibrance does work. Hugs to All!!
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prairiesea - I wish you anc wasn’t so impacted but your other choices could work just as good. Fewer women have neutropenia on Verzenio. 🤞🏻 Try to forget about this for awhile and enjoy your vacation.
42young - Good for you!
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I’m sorry, Prairiesea. I am going to have a talk with my doc about switching from Letrozole to Fulvestrant. The bone pain I’m having is awful. I can’t tell if it’s the cancer or my joints because of the Letrozole. I’ve been on it for two years. I don’t know if fulvestrant can cause the same issue. If so, I won’t bother. I haven’t researched it yet. I hope you are good to go on your trip. Maybe Verzenio will be better for you. Hugs.
42young, so glad Ibrance is still doing it’s job for you. I’ve been on it for two years, and as far as I know, it’s still working.
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KBL,
I was on letrozole from 2006 until 2019. Then I was switched to faslodex. I know this isn't so for everyone, but for me, there was a huge difference in the joint pain between the two. In retrospect, I don't know how I stayed on letrozole for so long.
Good luck in considering this switch.
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Have any of you had a SE of dry, peeling skin? On one of my hands I have very dry skin on my thumb and my index finger. I do my best to put on lotion, but it doesn’t seem to help much. And if the skin peels off, the skin underneath is sensitive and can hurt.
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Post MO appointment checkin. MO went over scans with me, stable, staying the course. Was Zometa day, I got mixed up which one was the last one before every 6 instead of every 3 switchover. 1 more in Oct to go after this and then every 6. Beloved asked me, if they know you as Rabbit on the forums there, what does that make me, a Hare? I said yeah!
There was a sign across from my chair that said "Don't count the days, Make the days count" that was new.... Boy is that hard not to do sometimes (Count days, compare sigs/tx/datesofdx) but at the same time you really do need to make it count. Which is why my beloved stopped for a gallon of mounds of coconut ice cream, one of my favs from a local shop. Coconut ice cream with chucks of mounds chocolate coconut bars in it. OMG!
Its to help get through the 2x4 beating feeling i'll be in full force with for a couple days - great medicine it is that creamy confection and dairy delight I say. Here's to making it count! Woo!RK- hope you can get both places on the same page pronto. Its crazy sometimes getting 2 different places to talk to each other and they always blame each other for mixup, never take ownership. Hope you get a comparison read sooner than soon. Having to coordinate things 1600 miles away's gotta be F-U-N but thankfully that's about to become ancient history, now its just local fun coordinating, its just as thrilling but you tend to only gain 1 gray hair a week instead a weekly hair pulling
No matter where you go meds wise, your always welcome to dance here as long as you want 42young- congrats on the stable news! My MO told me today she has a patient still on Ibrance that she started in 2015! Always happy to see a checkin no matter how often one posts.
prairiesea- phooey on counts having you leave the dance floor. But I agree with others Verzenio is much kinder to counts and many who have to leave ibrance due to count issues end up doing well on verzenio. Offer to stop by anytime is always on the table. Once a dancer, always a dancer.
Rosie - I've had pretty dry skin off and on, but not peeling skin. Vaseline Intensive Calm healing lotion is what i use. I use it before bed and the lavender scent is calming for helping me to settle nerves before bed plus it works well on dry skin, double whammy.
Settling myself in for the night. Its like an emotional rollercoaster hitting the oncology floor everytime, every month. But I gradually go down little by little until I make the ascending climb again leading up to the appointment. Exhausting. Nicht fun. But at least I had a good vampire today and that's always a good thing
Edited to add : FGodmother - look at that face!! Too cute, hope your getting some sleep with your new housemate
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Thank you, BevJen. That would be wonderful if it had the same effect on me.
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42young- Happy that you are still dancing on Ibrance and stable.
Hi to all.
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Thanks KBL, RK and Rabbit. Determined to look positively toward whatever the next step is. And enjoy a vacation not thinking much about this....have family, beautiful ocean and redwoods to look forward to so I'm not going to waste it worrying too much. It'll all be here waiting when I get back. Hope all scans, potential changes and life here goes well while I'm gone. I'll continue to peek in and I'm sure "see" many of you on other forums. Thanks so much, you all are great.
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Enjoy your vacation, Prairiesea!
RRabbit-Wish I had some of that Mounds Cocoanut Ice Cream right now-sounds delicious!
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Hello Mary,
I was diagnosed with MBC ER+/HER2- in December 2019 with several metas in nodes, lungs, liver and bones. I took Ibrance (125mg then 100mg and 75mg for April 2020) + Anastrazole (Arimidex) +Zoladex + Xgeva + Oracal since my diagnosis. The treatment works very well on me because all metas disappeared on PET Scan except 1 bone meta on my omoplate.
Hope your mother is well, I send you and your mother all my love
Lili
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